Stewart, Myeloma and after the Lenalidomide (Revlimid ) Drug Trial

Not finished yet!!

2009-02-16T20:17:00.002Z

Not finished yet!
OK- so I'm a showman and like to be front stage. Interesting that I find it difficult not to write the blog so I might write now and again and shorter posts.Just in case you think the myeloma has completely gone for me, since the last post( does sound final doesn't it!) and the three nice comments, I've finished one bike, nearly finished another; sanded the stair well; sanded our bathroom door ( new bathroom put in) in prep for painting; built a cupboard for Elspeth ( screw missing- it was an Ikea one. I wonder if I have an Ikea gene because various folks have commented on the fact I also have a screw missing!). So still working away. Cameron- I worked in the former central and eastern europe and I can guarantee that when you look for the Brechin city score on a Saturday night( as you say in your comment), you are joined by Russians, lithuanians, latvians, albanians etc etc! Only way I can keep the support levels up.We've also had 6 days up north in glorious countryside. So still hanging in there.

Blog etc

2009-01-30T12:51:00.003Z

Decision has now been made that the thalidomide treatment I have been having is of no benefit and has now been stopped. My paraprotein continues to rise and is now at 50. Unfortunately, I've tried all the other available treatments and in short I will from now on be having no treatment at all. This means I'm moving away from therapeutic care to palliative care. For that reason I think I'll stop writing the blog as it was always meant to give an insight in to my experience of treatment for myeloma. Moving to palliative care is a wee bit different. So- all the best to all- you can of course contact me by email if you want. Or if you use Skype I can be called on stewart.asquith and Elspeth on elspeth52 Interesting to note that since I started writing the blog there have been about 10,000 hits from all over the world. Maybe someone else will write a blog.
Stewart

Things happening

2009-01-26T20:38:00.002Z

Things do seem to be happening just now- been called today by the hospital as my blood counts are a slight bit of a problem- haemoglobin a bit low and have to go in for a blood transfusion on Wednesday. Not sure what's happening with my bloods. Don't know whether its the thalidomide or simply my myeloma progressing. Again the results on Friday will be pretty important.

Thalidomide etc

2009-01-23T09:04:00.002Z

Still no idea yet whether the thalidomide is hitting the myeloma but it does appear to be the case that I'm tolerating this dose of the thalidomide- unlike the last time I took thalidomide( though the last time I also took it with pretty heavy cytotoxic drugs). I've been on it for about 3 weeks now so all looking OK as far as the thalidomide goes.

Number of folks have commented on my positive approach to dealing with all the myeloma has thrown at me but it doesn't feel to me like being positive- just handling it in my way and as best as I can. My wife and I are both agreed that in many respects there have been many silver linings with the myeloma- more time together, more appreciative of our life, family etc etc.

One thing I am conscious of though is maybe underplaying the effects myeloma is having on me more and more- and by that I mean that I've reached the stage where I do need pretty strong pain killers. Those of you who have read my blog for a while will know I don't like taking pain killers- but I now have no choice in the matter- bits of my body have taken a bit of a hammering and I acknowledge the need for strong painkillers and in fact recognise that they can help with the rest of my treatment by removing the need to keep addressing the soreness the myeloma brings with it. Means I can focus on the more positive aspects of my treatment. I certainly need strong pain killers on a Saturday night when the football results come in and I learn how the Brechin City game went!

Thalidomide, Hospital Stay and of course Moulton Bikes.

2009-01-17T12:03:00.005Z

The danger of not writing a post in a blog is that folks fear the worst! But I'm still here! It has however been a rocky couple of weeks and I ended up in hospital for 5 days. To cut a long story short, I was in having radiotherapy on the new spots on my shoulder and leg then went home. Sitting watching the telly all of a sudden I was hit by a pretty powerful dose of the rigours and couldn't stop shaking. Temperature was also up and so - off to hospital again( well I hadn't been there for a few hours!). Suspected infection which we never did locate but I got the usual high level of care I'm used to now from the nurses and doctors on the ward. Interestingly it wasn't my own ward because of bed shortage- I'll come back to this later.

Spent almost 5 days on IV antibiotics but also identified more bone problems in my rib cage this time and so lined up for more radiotherapy. Also seemed my bloods were pretty low so I had a transfusion - the first since my transplant. Interesting thing about low bloods - eg my haemoglobin was low, my neutrophils were low is that this was a real concern for the ward I was on ( not a haematology ward) whereas for the haematology docs who came to see me it was just usual run of the mill stuff. Interesting the difference in ward cultures.

So I'm home with a pretty sore rib cage and now on stronger pain killers and a bit sensitive to meeting groups of people because of my susceptibility to infections. Also of course on the thalidomide and it does seem that -despite all the other drugs I'm now taking- that I am managing to tolerate the thalidomide. So we should see if this is the case and also whether its attacking the myeloma or not when I go back to clinic on the 29th. I've asked Huw my consultant if there is any chance of a body transplant- even one that's been used a bit would do me fine- but unfortunately he feels medical science isn't quite there yet!

More importantly I bought another old moulton bike to restore- great bikes and they take me right back to the 60s. And for ye of little faith I intend to post a before and after picture of the bike I'm working on just now- I've even surprised myself at how good it looks! I'm determined to ride my bike again ( I'm also building a home made recumbent bike) and came across this foto which I sent to a fellow biker on his birthday-wonderful picture

And to tell a story against myself and which involved my transplant nurse telling me off- the last time I had the rigours I thought I could deal with them myself by stripping down to my underpants and going to sit outside in the garden in the middle of a frosty night to get my temperature down. Needless to say it didn't help but it certainly gave my neighbours something to think about!

Treatment

2009-01-03T22:17:00.001Z

OK- just started on Thalidomide so we'll see how it goes.

Time, uncertainty, myeloma and treatment cycles

2008-12-27T08:17:00.005Z

I've just noted a comment from Don to one of my recent posts in which he comments on the time involved with myeloma treatments. For me its time AND uncertainty which make myeloma a bugger to handle. The time is certainly an issue and even in the last two weeks I've had about 5 different appointments . But myeloma's effects also mean that I have other issues which require other specialists. For example, I now attend the hospital dental clinic at the WGH in Edinburgh and the Dental Hospital because of the osteonecrosis fear in my jaw; the diabetic clinic because I immediately become diabetic when I go on steroids- requiring immeidate insulin therapy and then it all stops when I come off the steroids; radiology clinic for my radiotherapy assessments etc( I've now had radiotherapy on legs, arms, sacrum, back, both shoulders and new radiotherapy about to be started; orthopaedics because of my bones and now have three bits of metal in me; urology for obvious areas of concern; cardiology for what turned out to be chemo induced angina( we think); and as Don points out- all the visits to medical practice- Phew, I'm awa' for a lie doon! The joke with Maureen and Liz- the two nurses who have had most to do with me have identified that one of the clinics I haven't been to yet is gynaecology but we're working on it.

But the uncertainty( Don, Cameron- for you too?) is also an issue. I never know quite when I'm going to be ill and so holiday trip planning becomes an issue. I also never know when I'm going to be fatigued( not tired but fatigued- a big difference!) and again this affects what we do.

So- what's happening now. Went to haematology clinic before xmas and my paraprotein result wasn't through but the prediction by all of us was that it would have gone up. My prediction was that it had jumped to 44. But decision made that it was time to go back on some form of treatment and that would be thalidomide. But because I don't like what thalidomide does to me, Huw my consultant suggested I have the xmas/new year spell free of treatment and start taking the pills ( as they say!) on 2nd January.

Had great xmas day when Elspeth and I went out and had a meal- first time we've ever done that while the kids ( Kids?? Come on Stewart, they're 24, 30 and 32!!). After a great meal we then watched my favourite characters Wallace and Gromit in their newest adventure- A Matter of Loaf and Death!!( Bit Freudian?). Boxing day I got an email from Huw ( Consultant and as I've said- everybody needs a Huw) to say my paraprotein was through and up at 43- so my prediction was out by just 1. Not unexpected. Then asked him iof he'd seen my newest x ray of my right leg. Again as I'd predicted( if you have myeloma for a while yyou get used to self diagnosing). Answer in a few hours was that I now have lytic lesions in my right leg and radiotherapy now needed there. I must have the most photographed body ever! So in short the myeloma beginning to gain the upper hand and hopeful that the thalidomide will check it for a while.

On a general note I have to say its great being able to communicate woth the medics by email- it means I get decisions made quickly and also can reduce these visits and time involved. I do though try not to over use and exploit that facility. But it also has certain advantages for the medics- less time seeing me, no need to actually see me etc. I can also see the time ( and had indeed suggested it as a research project in another life) when we could be contacting the medics by video conference to discuss and let see what's haddpening.

Right, can't stop here chatting- got bikes to fix. As well as my Moultons I'm now building a DIY recumbent bike- in the hope I might get out on that before it all goes haywire. And as you all know I'm pretty mean so building my own and not paying out a £1000 appeals to me. I'm so disappointed that I'm following plans to Build a Recumbent for 18$ but can't get my costs any lower!! ( If interested see http://www.motherearthnews.com/Do-It-Yourself/1999-02-01/The-18-Recumbent-Bicycle.aspx ). Its my most recent treatment cycle!

Xmas etc

2008-12-20T08:38:00.005Z

Thought you might like to see and receive the e-xmas cards I'm sending this year. Both were drawn by schoolchildren for a public gallery in a shopping mall . One of them- the "Drunking" one- has an element of sadness in it but both make you wonder what they do to reindeer in that school. The other one is a bit startled!

Have a good Xmas and a Happy New Year.

By popular demand etc

2008-12-19T07:38:00.006Z

By popular demand I'm posting two pictures of my moulton bikes- one completed( or near completion) and the other not so much a bike as a work of art or a sculpture installation according to our lassie!!

Like my interest in Ferguson tractors what's great about these machines are not just the machines but the men behind them. Ferguson was a remarkable man who thought his tractors might reduce world poverty etc. Alex Moulton was the man who designed the suspenion for the mini in the 1960s and whose bikes were the first to have small wheels and also dual suspension. I could go on!! I think you'll work out without captions what's the completed bike and which the " installation"

Thanks again for your comment on my last post Cameron- I'd be very glad to be smouldering again( for those non patients of you " smouldering" is in fact a technical term about myeloma when before full diagnosis or during treatment the myeloma is not particularly active but is there in the background and not progressing (( I think that's it)). So- Cameron- and as a Scot you'll appreciate this- Lang may you smoulder! In my case, I'm afraid smouldering is a thing of the past and the myeloma is very active just now and on xmas eve we'll probably decide whether to go back on treatment or not. Also - Cameron I would very much like a xmas present and if you caould make it in the form of a Brechin City manager I'd appreciate that! He's leaving to manage Shamrock City!! How could he?

I have my eye on another Moulton!

Birthday targets, Dem bones, Dutch golden circle and joined up care

2008-12-10T12:52:00.004Z

Those of you at my birthday party in April will recall that my next target was to be still here when my fuel allowance came in. I'm proud to say that that target has been reached- I'm still here and my first ever fuel allowance arrived last week. Now need to decide on what my next target should be.
Dem bones are giving me a hard time just now- had to ask if Ward 1 at WGH could see me as I have a pretty sore chest and shoulder. I do know the signs and it wasn't unexpected that x rays showed that my right shoulder looked " pretty moth eaten" was the medical phrase used! So- more radiotherapy being lined up and harking back to Cameron's reference to the Black Knight( see his comment to a post below on the 29th November) I now have only one limb which hasn't had a plate or pin inserted or radiotherapy- my right leg. But it does mean that as my paraprotein goes up so too does my body reveal the effects of the myeloma which in my case has tended to be bone problems or susceptibility to infections. What it also means is that when I go to clinic on the 24th the decision about more treatment or not then will be influenced by not just what level the paraprotein is ( its at 34 and was 47 when I first fell ill)but also other factors such as my bone problems.

To bring this all back to my usual level the doctor at Ward 1 ( Brenda) told me she hadn't replied to a note about me going back on my bike because she was concerned enough about that but was even more worried that it might be a motor bike! I decided then to make her day to tell her that one of my friends and I were planning ( truly) to try to have a last big adventure for me by cycling round the Golden Circle in Holland( it involves going round the causeway built to enclose what the oldies amongst us will remember as the Zuider Zee. Brenda was OK after she'd been picked up off the floor and given a good helping of oxygen! Its clear I may not be able to do that but the planning of it in itself is good fun anyway.

I've also been to the doc's today to have my INR done( the measurement on which to base my warfarin dose). What struck me this time and last is that no matter which doctor I see they all know about what's happening and are very up to date. This reflects just how joined up my care is- as one doctor put it- if I sneeze at hospital, they have a letter the next day. But it does mean that the medic team at the hospital, Helen the WGH dentist, the team at my surgery, Barbara at Marie Curie and the district nurse( who for some reason I keep referring to as the midwife) all know what's happening whenever I see them. I have absolutely no reason to complain about any aspect of my care.

Some replies

2008-12-03T14:23:00.004Z

Cameron
Thanks Cameron for your comment in the last post- I'm very happy to be compared with the Black Knight and like his determination to refuse to accept defeat- even with no legs and no arms- Great! For those of you who might find the video a bit "detailed " my medi tag site( I wear a medi tag with a website address on it should I need medical help. Its proved useful in one or two places as its more immediate than getting records sent) puts what Cameron is saying into context- www.asquithmedical.co.uk

You should also know I have another major test on Saturday- Brechin play Edinburgh City in the cup in Edinburgh so I can go along with my sons and other Brechin supporters- in fact all of them!

Davy( Brand) Good to see you on Monday- can you let me have an email address? Send to me at asquith48@blueyonder.co.uk

Clinic, Moultons and nurses leaving

2008-11-29T19:31:00.005Z

Went to clinic on Thursday and not unexpectedly my paraprotein is up again- last month it went up 6. This month its has gone up 8 so I'm now at 34. Again the discussion was about whether I should have some form of treatment or not and again the decision is that as I still feel relatively well I'll wait another month. So next clinc will be the next decision point- and its xmas eve!! Sods law has set in as after speaking at the clinic about feeling relatively well, it now appears I have one of my rib problems again- we'll see if it clears up before I seek further help. But we've also now met with the District nurse ( who for some reason I kept referring to as the midwife!) and spoken about how to handle various things down the line.

But I'm still working away and working on the bathroom renovation and more importantly( though Elspeth might not agree) and well through the restoration of my 40 year old Moulton bicycle which I picked up for £31!. Amazing bikes and one of the first bikes to have dual suspension ( Alex Moulton worked on the suspension for the minis. Hoping to finish its restoration in the next week- resprayed, new bottom bracket, new suspension pivot etc etc. All good fun. Quite interesting that now that I'm more sore because of the myeloma and might have a rib issue again, I now feel the need to finish things I take on more quickly- just in case I suddenly reach the point where I can't!.

One of the nurses who saw me through the velcade and revlimid trials has left haematology at WGH and it has made me realise just how much nursing staff and others involved with my care have become friends after attending the same ward for 5 years. I can't imagine not becoming friends with some of them because 5 years is a long time. Interesting to know how nurses feel about this aspect of the nursing relationship ( I know some nurses on a course are reading this blog as part of it).
Right, back to spraying the bike.

Meditative problems

2008-11-25T23:01:00.001Z

Had a sleepless night a couple of nights back and listened to the radio. Heard a wonderful line I thought you might like to hear. Two monks were having a discuission about what to in the face of an impending disaster in the monastery. They belonged to a meditative/contemplative order. In frustration one says to the other- " Don't just do something! Sit there!"
Well I thought it was funny.

Treatment, Ready Brek, Bikes, mini suspensions etc

2008-11-25T15:17:00.005Z

In at the Western yesterday getting my bloods checked in advance of seeing Huw my consultant on Thursday. Critical issue is of course how far/whether my paraprotein ( the nasty stuff) has jumped again. It had jumped the last time but again, I felt well and didn't want to go back on treatment just yet. Issue this week will be the same-if the paraprotein has gone up will I go on treatment yet. Inclination is to try to get to Xmas with no treatment if I can.

I made a list in the last post( no its not as final as it sounds!!)of things I've been able to do. What I also have to remind myself of is the long list of things medical that the myeloma has forced on me in 5 years- 6 different regimes/forms of chemo and other therapies, a stem cell transplant, pulmonary embolism, 2 clots, slight osteocronesis of the jaw, loads of radiotherapy( some of you may be of an age to recall the advert for Ready Brek which involved children glowing as they walked to school- I'm convinced that after as much radiotherapy as I've had I also emit a light glow- saves on power and my own form of alternative energy!). But you can see the list of things at www.asquithmedical.co.uk if of interest (which is also written on my meditag).

However, I have too much to do and can't go treatment- I've bought yet another old bike- for £31. Its an old Moulton with back pedal brakes and back pedal gears( which I didn't know existed). Interesting man Alex Moulton- he designed the suspension for the mini with Issigonis in the 60s and transferred his know how to the first full suspension bike. Almost as interesting as Harry Ferguson who designed the Fergie tractor- steady on Stewart, nobody's as interesting as Harry Ferguson. I'll post a foto of the Moulton as is just now and hope to post a foto later to let you see the change( I hope).

Its been a while, knee pads and Screw Fix Direct

2008-11-10T14:40:00.005Z

Two things happened last week to make me think how fortunate I've been in staying around longer than anticipated ( quite apart from the fact Brechin City could not afford to lose such a high percentage of their support!). One was that I went in for a routine INR to set my warfarin dose and in speaking with the doctor he reminded me that last year one of the other doctors had in fact ( at my request and with evidence from Huw my consultant) written to a pension fund I'm in asking for my pension to be released as a lump sum - this is permissible for some funds when the pensioner has little prospect of surviving very long. It was about January/February 2007 when that letter was written and I'm still here!

The other was that we met with my Marie Curie nurse last week and again spoke about the fact that it had been suggested last year that I speak with a Marie Curie nurse to make arrangements for where and how I wanted to be looked after when I was ailing a bit. And here we are almost 1 year and 10 months later speaking about the same issues again! Really quite remarkable how fortunate I've been in being able to carry on doing things despite the treatment and how my pain levels have been manageable. At the risk of being a bit dark it was also almost surreal speaking about how to handle what might happen when my time comes when I actually still feel quite well( though creaking a bit with the old bones). I'm still able to do things though I take a bit longer doing them than I used to- maybe not a bad thing!!

My wife and I made a tally of the things I've done since we were warned I might not be around so long- they include

Building my great solar panel and fitting the whole system myself
Redecorating our wee office/study
Bought, sold( intentionally at no profit I may add!) and repaired a 30 year old campervan
Building some decking at our back door
Removing a lead water tank with my son( don't underestimate how big these things actually are!!) and replacing with a new CW tank
Testing but rejecting two wind generators( involved being up on the roof- odd that my neighbours look away when I climb a ladder!!)
Decorating our hall- upstairs and downstairs
Relaying crazy paving
Installing anti-escaping-spaniel-gates
Building a greenhouse for Elspeth
Sailed out to see the whirlpool at Corryvreckan
A ten day campervan trip( my ears haven't recovered yet from the noise levels of a 30 year old Bedford van!) and a few weekends away in the van.
Holidayed in East Angus
Holidaying in Croatia
Holidaying in St Ives
Holidaying in Kinlochrannoch both last year and this
Going to Tayvallich this week( west coast of Scotland
Working on a report with Elspeth on anti commercial sexual exploitation of chilkdren issues
Working on establishing a Centre for Rural Childhood at UHI
Now doing preparation work ( demolishing wall/rerouting plumbing for a new bathroom
Now renovating a 26 year old Dahon Classic folding bike
I've also decided to get back on my bike as its actually easier for me than walking given the leg with the pin in it and where I've had at least 3 clots. My consultant has agreed to let me do this though he did note wearily that he'd prefer it that I didn't fall off.

And all the other things a family do. I don't make any claims about how wonderful this is- all I'm saying is that having had warnings last year about going to the football stadium in the sky, we've still been able to do a lot. In fact I must go and have a lie down!!- even writing the list made me tired!! But to others out there- keep going!

This wouldn't of course happen without the support of Elspeth and the kids( kids!- do you know how old they are Stewart!!) and with the continued friendship of many people. One of my friends says my illness is costing her a fortune- she prays for me ( I'm not a religious person but welcome the fact that someone who is a friend might want to pray for me) and she has been wearing out her prayer mats kneeling down. To help her out I sent her a copy of an advert from Screwfix Direct for industrial trousers with inbuilt knee pads. I think this is easier on her but she is now on her 4th pair already! Expensive business.

Elspeth and I were discussing the fact that, although I personally don't go down the complementary or alternative therapy route, being active and doing things- and lots of new things- is my own form of alternative therapy. I also have to acknowledge that I've been very fortunate in that though I have clearly been pretty ill some times, I've also been very well at others. I also seem to have less bone pain to deal with than other myeloma colleagues ( though plates in two arms and a tibia nail was a bit tiring and wearing). What I also have to acknowledge and I don't know where it comes from- I've been able generally to remain quite positive- though about 3 weeks ago I did find myself letting go a bit in a routine hospital visit with the tears flowing. Ach well- we're allowed to let go now and again. Be a bit surprising if we didn't.

I knew it!!

2008-11-02T15:48:00.002Z

Thanks to Cameron for his reminder I had said nothing about how well Brechin City were doing- top of the league. And then what happens after he emails- they lost 5-1 on Saturday. Cameron- now you know why I don't mention them when we are ahead!

St Ives, Gardens, Clinics, Island Life etc

2008-10-31T20:38:00.004Z

Flying visit to the blog and just an update as to where I am. Don, Susie- all ok?

Sadly one of my fellow myeloma patients and good friend died - very sad and he'll be missed.

We did go to St Ives though we stayed nearby in Hayle with a wonderful over towards St Ives. When we saw how bad parking was in St Ives itself we were really pleased to be where we were( also explains why many of the holiday cottages emphasise parking available or possibility of getting a week's parking permit). Dis the usual tour of the galleries and also went past Alfred Wallis' house( see last post re Wallis). In fact our lassie ( who has fallen in love with St Ives and is today arriving there for her third visit) is staying Wallis' studio. We did a fair bit of driving and for any fellow Scots who might be thinking of going to Cornwall we can't recommend enough flying from Edinburgh to Newquay. From the time we left Edinburgh and arrived at our holiday place the whole journey took only about 4 hours( including a rental car from the airport). I have to confess the thought of a long train journey or a car drive was a bit daunting. But the plane was great.

As well as galleries we also went to gardens etc. One place which really appalled me was the plastic place at Lands End- absolutely awful and a good example of how to ruin a historic place with cheap plastic shops etc.

One thing we also noted was the great difference ion temperature between Cornwall and Scotland- like being abroad it was so warm.

Unfortunately I wasn't well on holiday- heavy cold and chest thingy though I had my survival antibiotic pack. I'm afraid the surgery on my arm has proven not to be as good as the last surgery I had and its left me with quite a painful right arm. My paraprotien is also jumping up a bit- at a rate of 6 a month it seems- and though we had the option of going on to try some final treatment on Thursday we ( Elspeth and I with our consultant) decided to delay that on the grounds that I actually feel quite well just now and didn't want to lose that by going back on thalidomide which I know knocks me about a bit. So we've left that for another month and will revisit a decision then. I'm knocking walls down to build a new bathroom and can't let the myeloma interfere with that!! I've also got to go up on the roof to insulate my solar panel a bit more so treatment would also mean that have to be left. Bugger that- I've got things to do. We have though had the suggestion put to us by the medics that we should be speaking more to my Marie Curie nurse- all part of the wider picture that my condition is progressing and that the myeloma is fighting all we can throw at it including the medical kicthen sink.

We are though planning to use my comparative well health( as opposed to ill health) to go away again and will be going to Tayvallich on the west coast. Looking forward to that.

How to end this post?- Ach well- I am still here. AND.... couple of weeks ago I bought a new copy of one of my favourite cds- Island Life by Grace Jones. And what has been happening this week?- Grace Jones has been having something of a revival and been on and in one or two things as her usual eccentric self. If you get fed up- buy a copy of Island Life and listen to La Vie en Rose ( and Slave to the Rhythm of course).

Last post and Wallis( not the Grommet one)

2008-09-23T14:46:00.003Z

No - once again not that last post! Simply the last post for a wee while. Feel the need to have a break from the blog and have quite a few things just now. Main plan is also to have another holiday and we are probably going to St Ives for two reasons. One is linked to the fact I like naive art. There was a painter in St Ives called Wallis- had been a sailor and when he retired at 60 started painting. To cut a long story short his paintings have now become sought after but when he died he died ( I think) in the Work House. Wonderfully simple paintings. BY coincidence our lassie who has fallen in love with St Ives has booked up a cottage there for the end of the month. Yup, you've got it- belonged to Wallies. The other reason is of course to go to the Eden project.

Holiday plans influenced by my surgery on my right arm and also possibility ( x ray yesterday morning) that my left arm between shoulder and elbow is weakening. Trying to make sure we have holidays when I can enjoy them before unable to do so. One silver lining is that I'm using voice recognition software more and more and anticipate need it for later on.

So- might have a break from the blog writing- I've also agreed to take on some more work so I'll focus on that. I suspect though that I won't be able to stop writing the blog at all- too much of a showman!

Heavy metal and flowers

2008-09-09T10:16:00.003Z

Had the surgery done on my arm and plating successfully done with new piece of metal now in place. Amazing the capacity of the human body to cope with serious intervention. Lots of the movement at my elbow is now back already though still pretty painful- hopeful that will ease as healing carries on. Radiotherapy now lined up for both the surgery area but also at my wrist where I'm having more myeloma related pain( my wrist broke a couple of years ago).

Interesting to note how different wards can be in different hospitals and covering different areas. In having my surgery done I was in a general orthopaedic ward. One thing different was that the ward was full of flowers whereas if I end up in Ward 8 ( Haematology ward) at the Western, flowers are prohibited. Also, I became a bit concerned when the guy in a bed opposite was hit by a serious chest infection- knowing how low my white counts are I don't think I'm being neurotic-just careful of the possibility of infections. Should I say something? Should I just ignore it? As it was, the Ward sister said she had tried to get me into a single room away from the risk of infection but it just wasn't possible.

Still wallowing in the enjoyment of Croatia and I note from Susie Hemingway's blog how important such holidays were for she and her husband( http://susiehemingway.blogspot.com/) Thanks for the comment Susie.

Post Croatia

2008-08-29T07:01:00.003Z

Thanks for the comments Don..

We had a great time in Croatia and glad we went. Lovely scenery, great place where we stayed and nice folks. The car we were using only broke down once!! It meant though that we met folk in the village where we were staying. Great fun ( at least for me though Elspeth has yet to find her sea legs!) getting the water taxi from Cavtat to Dubrovnik though the crew could double up as characters from the last of the summer wine.

On getting back- had to go to A and E as my arm was pretty sore. In short, consultant quickly contacted me and I go in for surgery this Sunday to see if they can remove the tumour and put a plate in. This will be my third bit of metal in me - not so bad as it might be given the other lesions in my arms,legs, spine, shoulder and skull vault.

The other news though is that I was at haematology clinic and my paraprotein has remained stable so we're pretty pleased at that as you can imagine. I also feel much better the further away I get from the thalidomide treatment.

Croatia on a positive note

2008-08-05T13:53:00.005Z

Now that I'm off the thalidomide, we've decided to go on holiday. My work took me to a number of the countries in the Balkans but I never made it to Croatia. That is to be rectified next week as we are going for a holiday to near Dubrovnik- see photo. Looking forward to it immensely.

As my treatment has stopped I think I might also give the blog a rest as well. We'll see when we get back.

Nae mair thalidomide, dogs and "bugger that"!

2008-08-02T20:25:00.005Z

Haematology clinic on Thursday and my paraprotein is at 13. To cut a long story short the decision has been made that the Melphalan, Prednisolone, Thalidomide mix has probably done all it can do for me so its all been stopped. True to form I haven't made the 5th cycle on this my 6th regimen of chemotherapy. Some of you will know my pattern is usually to respond very well to new chemotherapies but then to backslide a bit as the myeloma fights back. But I have now had 6 different chemo regimens as well as my stem cell transplant. Add in over the past 4 or 5 years the pins in my leg and arm, radiotherapy on various bits of my anatomy, gall bladder removal, various infections, pretty bad shingles on more than one occasion etc etc and the old body has actually stood up pretty well. And the fact is that without the care from doctors and nurses at the WGH I wouldn't be here today. The fact that new drugs have come on the scene and that I've been involved in two trials have all also extended my stay on planet earth and allowed me to follow Brechin City Footbal Club longer than I thought possible at the outset of all of this( I'm not sure following Brechin City for longer is in fact a good thing!!).

In terms of what next, my consultant's expectation is that my paraprotein might rise again quite quickly and that I might need more treatment again within 3 months or so ( we'll see about that). If so, I'll be back on the Thalidomide as none of my earlier chemo regimens are any more likely to be effective. But he also made it clear that my next chemo package will be my last and there will be no chemo after that. What has been mooted is the possibility after my last chemo attempt is some form of half body radiation- but we'll see. I didn't know what half body radiation was and so looked it up on the web as you'd now expect of me. I was halfway through an article reading about how 97 subjects responded to half body radiation before I discovered I was in fact reading a piece by a vet and the subjects were dogs- I should have read the title more closely!!.

So again another spell of uncertainty but I'll need to again work out how best to make sure the myeloma doesn't have it all its own way. As you've read before I usually adopt the "bugger that" tactic in response to predictions of how long on planet earth I might have. So- bugger that!

Brechin, Tour de France and clinics

2008-07-27T21:10:00.002Z

(Firstly a Brechin City paragraph- prompted by the comment on my last post. Hi Alastair- good to hear from you- can't email you as I don't have an email address....?. But the blog has allowed me to make contact with other folks from Brechin High School- Ken ( Currie) and I have met up a few times; we've also met with Alex Garbut and I'm trying to meet up with Ken and George Easton( I think you may know him as well). I know you know Jon and heard from him that he knew you well.)

Couldn't make it to the Tour de France finale on the Champs Elysees in Paris but one of our friends was there and texted a photo of the finish- not quite the same thing but good nevertheless. Thanks for the foto Maureen!

My haematology clinic appointment has been brought forward so on Thursday we should know if I'm to carry on with the thalidomide etc treatment. You'll recall I've doubled up on the Thalidomide and it is actually tolerable but does make me very tired and takes my system down a bit. It is tolerable and to put it in context one of the folks reading this blog contacted me to tell me that when they doubled his thalidomide dose he knew it was time to have it reduced when he couldn't remember his name at the clinic reception desk!! But it has been manageable but the real test is of course what its doing to my paraprotein levels- for that reason I'm going in to get my bloods done tomorrow so we have the results for the clinic discussion on Thursday. If the paraprotein has gone up then can't see the point of carrying on. If down, then we might need to keep going. If its stuck at the same level- then that's a tricky one. We'll see. But quite keen to have a decision as the uncertainty means we can't make plans in other areas of our life.

Myeloma does eat into the old diary a bit and in the next two weeks I have clinic appointments at haematology, clinical oncology, diabetes, the dental hospital and referred back to the orthopaedic guys to have a look at the pin in my leg. Time consuming stuff!

But to make many of you jealous- our solar panels are working wonderfully and we're only occasionally putting on the heating just now for hot water! We also have another plumbing etc project in the planning but again it does show that whatever else the myeloma is doing it is still allowing me to take on wee projects though I might do them a bit slower than I used to.

Hi Fred

2008-07-17T16:14:00.003Z

I hear my failure to keep my blog up to date has made some folks wonder if all is OK!! Usual story- this is my first week of my cycle and the mixture of Thalidomide, melphalan and prednisolone takes its toll and energy levels a bit low. More importantly there is also the Tour de France on the telly and I've just seen Mark Cavendish take his third stage. The commentators say that three stages in one tour is a record for a British cyclist but we all know that as he is from the Isle of Man and a Manx man he is of course from the Celtic fringe as well.

Dental hospital tomorrow to check on the osteonecrosis in my jaw and then with the all clear we are going away for a week so probably no posts then as we are in wildest Scotland. This is my first week on the double thalidomide so we'll see what its like when I'm off the steroids. We've planned the drive to where we're staying to coincide with my first day without steroids- which is usually not bad. I usually sink for a couple of days after that but it will be a change to dip a bit in a different setting. And if I'm up to it- the Balquihidder Highland games are nearby. My wife thinks I make up all the names of these little Highland Games events- first we were at Drumtochty and now Balquihidder!

So we're all going on a summer holiday....... ( I hope)

Clinic (or Clinique for Tour de France addicts like me)

2008-07-11T16:27:00.004Z

End of third cycle and at clinic today. Bit mixed and usual myeloma uncertainty. My paraprotein has gone up to 14. The doctor thinks its not clear yet whats happening and that it might still plateau. My experience has been that I respond well to treatment initially but then the paraprotein swings and rises happily- and that's what I think is happening. I don't like the thalidomide but have agreed that I'll try the 4th cycle and also that we double the thalidomide dose. How I react to the thalidomide will tell us whether I can complete the cycle or not and if the paraprotein goes up or down at the end of the cycle we'll know whether its worth it or not. I can come off the cycle at any time if I react as badly as I did the first time. Be interesting to see what happens because it appears I'm also a bit neutropenic though not desperately so. So double dose of thalidomide from tonight.

But consoled by the fact I can watch the Tour de France most days. If the decision had been made not to go on with cycle 4 we thought about going to Paris to for the 27th July and see the end of the Tour- as we did some years ago with our kids ( when they really were kids) and saw Steven Roche( I think) the Irishman, come in as winner. This year our hope would have been to see another Celtic rim win with David Millar the Scot coming in who was 5th overall yesterday but fell back a bit today. But I suspect he won't win it and we won't be there anyway!

Having myeloma is a wee bit like the Tour de France- you win some stages and lose others and never quite know how things are going to pan out. Also much more difficult race without good friends and family supporting you a long. We should have the equivalent of the yellow jersey- the Myeloma Jaune instead of the Maillot Jaune! Phew- I'm getting surreal and maudlin again. But last year, my GP did say that he thought I was taking more drugs than the Tour de France riders- that's quite a statement.

Cycle, cycle and the length of string

2008-07-09T07:50:00.002Z

Just coming to the end of my 3rd cycle and went in to WGH to have bloods done in advance of my going to clinic on Thursday(tomorrow) so that we know what is happening to my paraprotein level and so can make an informed decision about whether to continue or not on the PMT treatment. I have mixed feelings about but as it did appear to be doing a bit of good I'll reserve judgment. Great thing about my doctors at the WGH is that I'm part of the decisionmaking process as I would want to be and though I'm sure I pester them now and again with my questions it does mean I'm involved fully in my treatment. I prefer that to be the case and as I get further doiwn the treatment route the time may come when I/we have to decide that the extra treatment isn't worth it- balancing treatment against quality of life.

I also though took the chance to discuss a number of niggles I'm having just now and in short- I have an issue with one eye just now- can't focus properly and my eyelid seems to droop on occasion- noticeable to Elspeth. A number of possibilities being explored. One is that it may be shingles in my eye( so back on the aciclovir!). Second is that it could be a rare type of myeloma- CNS myeloma( but very very rare) or that the lesions in my skull have developed and the changes are impacting on certain nerves. So- x rays taken. Also, my leg with the tibia pin/nail in it is swelling more than usual- maybe an infection and possibility of it having to come out if a serious infection being discussed- so, x rays! Also bit of a new sore spot in my right arm ( the one where my wrist broke) and so- more xrays! After all the x rays I'm sure I have now started to glow in the dark and should be safe in the dark winter nights as traffic will see me! But a pretty heavy day yesterday not helped by the fact it took 11 goes to get blood from me- as a true Scot I don't give anything away easily.

Also took the chance to ask my favourite "how long is a piece of string"? question. I.E.- given all my treatment and where I am just now and given that its a pleasant surprise that I'm still here when I might not have been after earlier warnings- now long might I be expected to live. The answer as usual for myeloma is very clear and very certain- we don't know! Could be 6 months, a year or more. This is pretty typical of myeloma- the uncertainty of it , how it affects different people and how long survival rates. I intend to resist all predictions of my demise as I've done so far and adopt my usual response to timescales with my sophisticated medical philosophy of - " Bugger that!".

To add to the concerns of my family and neighbours, I've also got permission from my clinical oncologist to ride a bike again ( within limits). So at the end of the 3rd cycle I hope to be back on my own cycle with all the implications that has for the rising blood pressure levels of friends, family and neighbours!

Wee break, pipes and games

2008-06-30T15:07:00.002Z

Just back from our wee break in Aberdeenshire in a cottage on a wee caravan site in Aberdeenshire. Lovely site by the sea, small site and with a whole host of animals around- ducks, goats, sheep, horse, hens etc all on the site and with lots of wildlife flying around as well, This included a group of 3 or 4 herons sitting sun bathing on the hill opposite. If interested have a look at www.miltonhaven.co.uk The location also meant we could visit the east coast fishing villages and harbours at Gourdon, Johnshaven and Catterline( in Joan Eardley's footsteps).

Weather was great at the weekend and we did indeed make it to the Drumtochty games to see the traditional sports being played as they should be at a highland games day ( I've become a member of the grumpy old man club and don't like some of the "plastic" introductions at some games). Bit of a surprise when we met some of my family from the area and then to discover that three of them were playing in the piping competition. Day was complete when we left and on going through the exit gate saw a pretty characterful busker wearing his amplifier as a sporran on top of a well worn kilt.

The old body stood up pretty well though the tiredness from the thalidomide did creep in a bit and I knew I'd have to take it easy the next day but not a major problem- in fact we went to visit friends the Kinnears in nearby Edzell- Ian is a smallpipe maker - he made mine- and you can see examples of what I think is wonderful craftmanship at www.scottishsmallpipes.com
( I'd better stop- this post is becoming more like an advert for Angus and Aberdeenshire businesses than a myeloma blog!)

So in short a good break despite the thalidomide etc. and whatever else is hapopening the thalidomide hasn't stopped doing other things this cycle in the way it did in the last two cycles. In fact, the suggestion is that if I have another cycle the dose might be doubled- we'll see. If you see anyone walking down the street asleep- it will be me on double dose thalidomide!

Ach Bugger and the Island of Harris

2008-06-24T19:07:00.004Z

Ach Bugger- one of our good friends has been diagnosed with cancer. Its interesting how someone else having cancer- especially a good friend seems a bigger deal than your own. It may be in part because the myeloma journey can be a long one and there is time to adjust to it and accommodate it and you forget the initial phase of diagnosis and immediate treatment. As I was saying before in earlier posts- I'm going through a survivor phase and Elspeth and I are aware that some of our friends may be suffering from myeloma fatigue, IE that I'm still here despite various points where I thought I might not be and friends might have built themselves up for all eventualities at different points in the journey. But when a good friend is diagnosed it still is quite a shock.

On a cheerier note- one of our other friends is going off to the island of Harris ( complete with fiddle and wife- in that order I think). I pointed out to him that I'd seen reference in one of the newspapers to the fact a committee on Harris had been stood down with the sub heading " Last Quango in Harris".

Nae Hospital! and Wedding Dowries!!

2008-06-23T08:18:00.004Z

Right- that's the end of week one of cycle 3 and unlike the other two cycles I haven't ended up in hospital and feel better than I did the last two times. Hope that's reflected in a lower paraproetin as well.

Since I feel like this we're going to try to have 2 or 3 days away and go to some Highland games at the week end- I need my fix of the countryside, pipe music and general things Scottish. Might make it to the Drumtochty Highland Games - we'll see. We'll stay at a wee coastal village called St Cyrus- the east coast from Montrose north has some lovely wee fishing villages and we'll visit some of them. St Cyrus has another claim to fame- it has a dowry system for new brides. As part of the Old welfare system under the Poor Law a number of dowries were made available outside usual principles. So at St Cyrus dowries were and still are available for the tallest bride, the shortest bride, the poorest bride etc- still apparently on the go and a nice wee custom hearking back to someone with a sense of humour.

Paraprotein slightly up again.

2008-06-20T06:14:00.003Z

My paraprotein which was down to 10 is now at 11. We don't of course know if this is the result of a plateau or whether its going up again so we'll see at the next clinic. Thinking seems to be that we might try to up the thalidomide dose just in case I get some benefit from that. We'll see what the next paraprotein result is. I finished taking the melphalan, prednisolone, thalidomide mix this morning so we'll see what that does to my blood counts- at this stage the last two cycles I became neutropenic and also ended up in hospital both weekends- hope to avoid that tomorrow!

Meantime as usual, the myeloma trail is full of appointments- I'm having 5 consecutive sessions of radiotherapy on my shoulder which is proving troublesome again and also waiting on a Dental hospital appointment to explore further the osteonecrosis in my jaw. All the drugs I'm taking are playing havoc with my INR( the baseline for determining my warfarin dosage) so I'm currently getting my blood tested for that every two or three days. And since the steroids throw me into insulin dependent diabetes on a short term basis I've also two diabeteic clinics to attend. Phew. Time consuming this myeloma business! If anybody knows of a doctor offering body transplants........

But the main pleasure I'm getting just now is watching the gauge showing our solar collector heating the domestic hot water with no gas involved- I knew it was a good idea!

Paraprotein, Pipebands, Dougie McLean and Ray Mears

2008-06-17T05:09:00.003Z

Paraprotein at end of cycle 2 was 11- so marginally up on the 10 of two weeks before. Need to see at the end of this the third cycle where it goes- its maybe reached its plateau- we'll see.

Was able to go to the Scottish Pipeband championships in Innerleithen on Saturday though it involved two sleeps in the car during it. But great to hear the really young bands coming through and made me get out my own pipes when I got home( I have electronic ones as the plates in my elbow won't let me risk the real thing). Bit of a shock to the system to hear 11 and 12 year olds playing tunes I'm still trying to play properly after about 20 years ! Plan is to try to go to the worlds championships in August this year if I can.

I was listening to a Dougie Mclean CD ( you will know I like his use of the Ferguson Tractor as a musical instrument in one of his songs!) and heard the Song of the Survivor. I'm also a Ray Mears fan and have been watching some of his programmes about survival and survivors. It set me thinking about a phase I'm going through just now- of almost being a survivor and going through survivor syndrome. All the indications were that last year was maybe going to be my last year and I was put in touch with Marie Curie etc, got early release of some pension policies because of my situation and had of course quietly alerted friends and families about what might be happening. But - as you'll gather from this post- I'm still here!! Great as it is is to still be around, there is a feeling of how did that happen- particularly when a number of my myeloma and other haematology colleagues didn't make it. I think there may also be myeloma fatigue for some of my friends as they've lived through all the possibilities with me and there has to be a limit to the amount of emotional hightedness they need to bear. What is a wee bit difficult for us myeloma patients is that we also tend to look pretty well a lot of the time and able to do things- except when we are on chemotherapy!- so it can be a wee bit difficult to let folks know- except those close to you- just how you are feeling.

Ach well, I'm beginning to ramble. I have to say I was disappointed in the last Ray Mears programme where he was on Walkabout in Australia- showed us some bush twigs etc that the Aborigines used to light fires- extolled its virtues as good tinder and caught light easily. He then took out a petrol lighter from his pocket and lit it with that!! Come on Ray, cheating a bit.

A long cycle! and Solar Panels.

2008-06-13T08:53:00.003Z

Right, that's cycle 2 finished and it seemed like a really long cycle- longer than the one I did by bike from Brechin to the French Alps when I was 15. Decision is pretty much as expected- go on with cycle 3 as my bloods are really in pretty good shape( actually really quite good for me given the chemo etc) and despite the side effects of the thalidomide, evidence seems to be that its doing me some good with paraprotein hopefully still coming down. Though I was at clinic yesterday, the paraprotein result doesn't come through for 3 days so I won't know till Monday where I stand in that respect.

I'm not as on the ball as I should be- which I put down to the thalidomide( thalidomide is to blame for absolutely everything!) and I turned up at the WGH dentist on Wednesday at the wrong time and then also at the wrong time for the Haematology clinic- requiring one of the registrars to see me when she should have been having lunch. Its the thalidomide I say!
In terms of my jaw, a wee referral to the dental hospital to see if anything needs done for the wee bit of osteonecrosis I have but meantime put on antibiotics. What great service we get- and its all joined up( except when I get the appointment time wrong).

When I was waiting in Ward 1 at WGH for my prescription for my chemo drugs( I take all my chemo in tablet form and do it at home myself) I had a long chat with one of the doctors about really serious issues- yup, we were discussing the merits of solar water heating and photovoltaic cells! Those of you who read my earlier blog will know I built solar panels last year to heat our domestic water- best thing we ever did and our boiler kicks in only rarely now. Every time we hear of gas prices going up we go into the garden, look at the solar collector on the roof and have a wee smile.

End of cycle 2 and myeloma- how come?

2008-06-10T07:41:00.002Z

Reaching the end of cycle 2 and see my consultant on Thursday. Overall, its been pretty hard work and its left me pretty low and tired- I've been sleeping for Scotland. What I don't like in particular is the way the thalidomide saps me of energy and motivation to do things- its not me!. An email from CS however confirms he went through the same kind of process and he also had to have his dosage of thalidomide reduced to the beginning level of 50 mgs so that he could cope with it. He also reassured me that only two or three days after finishing the treatment and coming off the thalidomide he was back to his usual self. I supoose the bottom line is that if there is some gain being made in terms of the paraprotein level being reduced then its worth it in the long run. We'll see on Thursday. Meantime I've also to see the WGH dentist again as I may have a bit of osteonecrosis to deal with in my jaw. Find out about that on Wednesday.

I also raised some issues about why I got myeloma and one of the factors suggested was pesticide. Don from the US also said that he had had contact with malathion ( as I did working on a fruit farm) though in much smaller quantities than me. CS in his email also pointed to an article which suggested there might be a link with the poliomyelitis vaccination- as he said, he saw it in the Sunday Post so it must be true!. One thing I think we have agreement on is a bit of surprise that no database on our background/life experiences is being kept and that this is maybe a shortcoming in the attempt to locate the causes of myeloma.

Myeloma- how come?

2008-06-05T06:47:00.002Z

Firstly, thanks to Don in the States for the supportive comments etc.

Second, as a quick update- now in the last week of cycle two and drifting along- I really don't like the thalidomide because as well as the physical side it also seems to take away energy and motivation to do things- at least in me. I'm also having my jaw/gum looked at again as there does seem to be a bit of change there- so off for x ray etc.

One of the questions I haven't a good answer to is why I got myeloma. I don't mean this in the sense of why me? I've never asked the question in that way and have never asked what I've done to deserve this- I simply assume we are all likely to fall ill in some way and in my case its the myeloma. The question for me is more about what factors led to me getting multiple myeloma. The medical literature isn't really much help as there is no definitive statement as to what factors predispose someone to myeloma- in short, we don't really know though it does appear that there is an increase in the number of folks with myeloma.

It might also not be helpful to look for the factors leading to myeloma around diagnosis time. My myeloma appeared in August/September 2003 but I'd been told as early as 1994 - as a result of a biopsy for something else- that I had a paraprotein spike in my blood and might get myeloma further down the line. I've two broad lines of thought regarding me and myeloma. One is that I grew up in extreme poverty in a house that was in an appalling condition by anyone's standards( beginning to sound like the Monty Python sketch- we were so poor that......) and where my brother and sister contracted TB- in the case of my sister involving many years of treatment. (As a quick aside I can also remember being collected by one of the local charities to take me to a pantomime in Aberdeen and being on a bus with all these other children and thinking " These must be the poor children"- never of course putting myself in that category!). So conditions were really quite bad and we were open to all kinds of things. One of the consequences of the TB in the house is that from my earliest days I was monitored for TB and had 3 monthly x rays all through primary school. A number of us with myeloma do seem to have had exposure to lots of x rays when we were younger. Mmmmm.

What the literature also suggests is that there may be a link to pesticides and in my case there could be a very strong link. You all know by now of my love affair with the Ferguson tractor and that I worked on farms all through my school and student days. When I was driving age one of the jobs I had was spraying the raspberry plants with a big tank of pesticide on the back of the tractor, Raspberry bushes are of course planted in rows and so the tractor being a small one for access reasons is pretty much enclosed in between the rows and any spraying means the driver is exposed to the chemicals. In my case, I was spraying Malathion- a pretty aggressive pesticide- and doing so for days and weeks on end and with absolutely no protection- sometimes filling up the spray tank from cans and then having my sandwiches sitting amongst all the cans/fumes etc. These are practices that no farm would get away with at all now. So I wonder about that as well.

The fact is though that there is no definitive answer though the fact that numbers of myeloma patients are increasing does suggest a common factor of some kind- life style? treatment of food by things like pesticides etc?

The best laid plans o' mice and men........

2008-05-29T16:53:00.005Z

You'll have noticed the absence of blog entries for a few days now. There I was in my last entry waxing eloquently about how well I thought the second cycle was going and then it hit me! The day after I finished week one of cycle two ( which involved the melphalan, prednisolone and Thalidomide) I really crashed and felt very unwell and extremely tired. To cut a long story short this got worse and I slept around the clock and could hardly walk into our garden. On the Sunday I also developed a temperature and it was off to hospital again where I stayed for another three days. Usual scenario- this involved IV antibiotics and also the decision to reduce the thalidomide dose from 100mg to the original 50 mg. It may be that I'm one of those who don't tolerate thalidomide as well as the treatment regimne demands. So I'm back on the same level of thalidomide as in the first cycle and also with more antibiotics as I seem to have another chest infection or " basal crackles" as my gp note puts it.

I'm still pretty tired but one of the more difficult things about my hospital stays is that ( as you all know) I am very difficult to canulate and this hospital stay produced some records. It took over 3 hours to get a canula in and involved 12 attempts- my veins have had enough I think.

I'm home- as you'll gather but still pretty weak and having to take it easy until I get my strength back. What's also interesting is the difference between hospital wards in terms of reactions to my condition. Ward 8 at the WGH is where I usually go but there were no beds. I ended up in Ward 3 in a single room because I was deemed neutropenic( neutrophils at .7- you normal folks have neutrophils I think at 3 0r 4 etc- I hope that's right). Ward 3 nurses were very concerned about the low level of my neutrophils and so I wasn't allowed out of my room at all so for three days lay around, didn't move and quickly got cabin fever. When the haematology doctors came to see me- they were much more relaxed because for them .5 is the threshold where they begin to worry. Interesting the difference between different bits of the hospital and different disciplines. For information my neutrophils were .6 the day I left hospital.

But it seems that despite this being pretty hard work- and more anticipated- the end result is that my paraprotein has actually come down again. Within the first 6 weeks of this regime my paraprotein has dropped from 28 to 14 and now to 10. Quite a good result despite the hard work. So I'm still here and still resisting the odds.

Day 6 cycle 2

2008-05-21T10:33:00.003Z

Day 6 of cycle 2 and this is clearly much easier than cycle 1 was. Main difference is I think that the prednisolone - whereas it throws my blood sugars all over the place, actually allows me to sleep unlike the Dexamethasone. So I don't have the tiredness to cope with as well as the effect of the drugs. I do still get wobbly about lunch time- had to cancel some lunch time things- and this probably the diabetes and me not yet getting the insulin dose settled as I should. But tomorrow is the last day of week one of cycle 1 in any case and I stop the prednisolone then so that should settle down as well.

Day 5 Cycle 2

2008-05-20T07:57:00.003Z

Now on day 5 of cycle 2 and certainly seems much better/easier than cycle 1. Remember on cycle 1 I was also on dexamethasone but on cycle 2 no dex and just the prednisolone, melphalan and thalidomide. The prednisolone is still a high dose steroid ( 18 x 5mg tablets in the morning ) but it doesn't seem to have the same crash bang wallop effect as the dexamethasone. It does however still throw my blood sugars around and I'm still have difficulty settling on the right doses of insulin. But in general its much easier and I don't have the tiredness and fatigue I think the Dex brought on.

The thalidomide is now up to a 100mg a day but that too seems manageable so all in all, cycle 2 does seem a much better than cycle 1. Here's hoping it also has the same beneficial effect in reducing my paraprotein again.

Shoulder becoming painful again so probably heading down the radiotherapy route for a zap or two there. Interesting though that I am now hardly aware of the plate they put in my left arm and the pin they put through my left tibia though I only drive our automatic car now and find it awkward driving with a gear stick and clutch. But then- that's why we got an automatic car!

Elspeth, Day 2 of Cycle 2 and puggle point

2008-05-17T19:52:00.005Z

What some of you may not know - especially from this self centred blog is that Elspeth my wife had breast cancer just before I was diagnosed. She was successfully treated also at the WGH and has just come off the 5 years of tamoxifen follow up after her surgery and chemotherapy. As part of the trial protocol she is in she now moves to Letrosol as a followup to the tamoxifen- and this lasts for another 3 years. So though the blog gives a statement of where I am, it doesn't fully let you know just what is happening in the house generally. But as I'm the biggest beneficiary of Elspeth's care and love, then its important for me to let you know now and again just where she is.

Yesterday took the prednisolone, melphalan and Thalidomide for day 1 of cycle 2. Prednisolone has the same effect as the Dexamethasone in that my blood sugars immediately went away up ( 19.6) and I had to start taking insulin again. I also took the thalidomide at double the dose of cycle 1. Effect of the thalidomide which I take at night because of the sedative effect is that it probably helped me sleep and I got through to 5.30 before waking up- by my standards on steroids that's not bad.

Day 2- - can't be sure but I don't feel as tired as I did in cycle 1 so I'm hoping that this cycle might be a bit easier- this is where the infection risk ( my white counts are pretty low) becomes a key factor. In any case, the main aim is not necessarily to have a good cycle but to bring down the paraprotein to whatever plateau it reaches. I know we'll never get it down to an unmeasurable point- I'm too realistic for that- but hope the plateau might be below the 14 we reached after just cycle 1.

Also have to recognise that my puggle point is quite low just now- i.e. the point at which I feel puggled or tired. Did a number of jobs today and reached my puggle point a bit earlier than I wanted to. So need to keep an eye on how much I do and need to pace myself a bit more than usual.

Better than expected news!!

2008-05-15T14:37:00.004Z

Had my review of Cycle 1 today. Bear in mind I have found it pretty hard work. However, the good news is that after one cycle of the thalidomide, melphalan, and prednisolone mix, my paraprotein has dropped from 28 to 14. This was completely unexpected but of course well received in the Asquith household and clearly worth the hassle of the last few weeks. I also acknowledge the last few weeks were made more difficult by having to take Dexamethasone all the way through so hope it might all be a bit easier this time.

Cycle 2 however requires that the thalidomide be cranked up a bit and I move from 50mg to 100mg a day so we'll see what that does. Also it appears that the TMP mix has lowered my neutrophils and that throughout the following cycles I might be even more susceptible than usual to infections etc- so it means the old thermometer will be used a lot and I have to alert friends and visitors to this.

Also my history of treatment has been one in which the first cycle usually has very good results followed by a tailing off of any benefit. So Huw my consultant is hopeful we might have three or so good cycles and then the gain might not be worth the pain. But even if my paraprotein didn't drop anymore, today's result means I already should have longer on planet earth.

But great news and completely unexpected.

PS- if interested in seeing how widespread the list of folks are who read the blog- scroll right to the bottom of the page, you'll see a maroon bar and in that bar will be a box- this is my counter. Click on it and you can see how many folks log in, when , even what kind of screen they use! The interesting one for me though under GEO is the number of countries readers come from.

4th birthday, Polish and British Prime Ministers

2008-05-14T21:13:00.004Z

As I said it was my 4th anniversary on Monday of my stem cell transplant. Had a nice visit when I was in Ward 8 earlier of some of those from what has come to be known in certain circles as Team Asquith- the nurses and docs who have looked after me. A nice 4th birthday card and also nice cakes. What Team Asquith didn't know is that the cakes they brought were my favourites and what I turn to when I need a treat- Tunnocks Tea Cakes! I was also able to tell them that when I started my first job in Lanarkshire in 1971 on the induction week I was to visit key institutions- some of which were children's homes, old folks homes etc but it also included the Tunnocks Biscuit factory!! Thought I'd died and gone to heaven.

But a pretend 4th birthday and the fact that my tea persons were Polish also set me off on a train of thought. With a name like Asquith I regularly get asked if I'm related to the liberal Prime Minister H.H.Asquith. The answer is no for at least one major reason- my father was not Asquith. The other reason is that I'm not sure if the Asquith who married my mother was from that dynasty though there are rumblings about black sheep etc. But it in part explains why I grew up with an interest in ( which I never understood) the Tennants of the Borders and also the Bonham Carters- particularly Helena Bonham Carter. Tennants and Bonham Carters were related to Asquith through marriage I think. So no Alf Tupper experience suddenly discovering I'm from aristocratic background!( If any of you recall Alf Tupper let me know or if you want to know who Alf Tupper was- drop me a line).

OK so no link to a British Prime Minister. What about Polish Prime Ministers then and why if so?No I'm not related to a Polish Prime Minister ( where is this going Stewart?) but my father was apparently Polish ( which I didn't discover till well into my teens) and I never knew him. But ( here's the link!)when I was about 4 or even younger I remember being shouted to by bakers who worked in the bakery next to our house " Hey Paderewski" and they called me Paderewski whenever I met them. Always wondered about that- very few people in Brechin are called Paderewski!! But of course when I later discovered my father was Polish pieces of the jig saw began to fit. Why I was referred to as Paderewski was easier to understand and also that it wasn't said maliciously at all. Amazing man Paderewski- had a highly successful career as a concert pianist particularly in the states where he was greeted by huge crowds but was also hailed as one of the great international statesman of the interwar era.

So this all came from my pretend 4th birthday and the fact I got my tea and biscuits from two Polish folks. Serious side though is that having been to hospital a lot I've been regularly asked that inevitable question " Is there anything in your medical background which might explain......" The answer is I don't know because I have no knowledge of half of my parentage. Was there any evidence of myeloma related issues from that line for example? The other is that ( and I've always believed that what we do reflects our earlier lives in some way) most of my working life has focused on children's and especially in Eastern and Central Europe. So I've visited or worked in most central or east european countries- with the exception of---- yup you've guessed it- Poland ( Right Sigmund, can you explain that?).

I think I'm away for another lie down!

Scottish Medicine Consortium

2008-05-12T21:21:00.002Z

Decision announced by the SMC NOT to license Revlimid in Scotland for first line therapy. This is quite a blow because in my own case the first cycle saw my paraprotein drop from 20 to 7 - a remarkable drop. Again it also makes me realise how fortunate I was to get on the trial and get Revlimid- there is no doubt it lengthened my time on planet earth.

PS- I'm now home- a bit early but on a promise not to do too much.

Big Day- 4th Anniversary and SMC decision

2008-05-12T07:42:00.003Z

At 2 pm today it will be 4 years since my stem cell transplant.

Scottish Medicine Consortium also make a pronouncement today whether they will licence Revlimid/Lenalidomide ( the drug I had on the trial last year). Haven't seen
any statement yet.

Sunday night - quarantined

2008-05-11T19:55:00.003Z

Signs of shingles now appearring- as they often do when my system goes down. So now quarantined. Not expecting any of you to visit but just in case- you shouldn't come if you are pregnant or not had chickenpox.

Sunday morning

2008-05-11T08:06:00.003Z

Still in Ward 8 at WGH and looks like I might have `to be in for a few days yet. Had to get the doc last night as my temperature went up to 39.4- a tad on the high side. It appears I may have atypical pneumonia( I don't do typical)- which the medics tell me is a situation where you have pneumonia but few of the symptoms of it. So-that's why its known for old folks as the silent killer.- I have a high temp but no sore chest, no real sweats, no chesty cough etc.

cycle 5- almost didn't make cycle1 !!!!

2008-05-10T19:10:00.004Z

As you know I have never made it past cycle 5 of any of my chemos. I almost didn't make it past cycle1

Woke up on Thursday morning- last day of cycle 1- with a temperature reaching 39 and also had a bad case of the rigors. I've had these before and if you don't know what they are they're severe shaking of the whole body- not tremors but shaking and trembling from deep within. I think its the body's attempt to reduce the temperature. To cut a long story short- a quick call to Ward 1 at the WGH Edinburgh and within an hour I was on high dose IV anti biotics and then a couple of hours later I was admitted to Ward 8 where I still am ( Saturday night). My concern was that I might not get to continue on treatment but Huw my consultant is confident this is just a blip and that we'll start my cycle 2 a week later.

The good news- though we haven't got the full paraprotein result yet- is that Huw can infer from other biochemistry thingies that it does appear that even after cycle 1 my paraprtein might have down even a small bit- which is after all the name of the game. Probably for that reason- though I won't get the melphalan and prednisolone till next week - I'm to continue taking my dailly thalidomide dose. I wont get home quickly as they'll want to be sure my temp doesn't yoyo( one of the nurses got a reading of 39.2 earlier).
No easy this stuff!

End of Cycle

2008-05-06T09:47:00.002Z

I'm heading for the end of cycle 1 so time for a review of what this first cycle was like. To remind you- I was already on Dexamethasone ( to address my spine issues) before I started the PMT( Prednisolone, Melphalan and Thalidomide) regime. You aren't allowed to come off Dexamethasone suddenly so for the first cycle I've been taking a tapering amount of Dexamethasone- its meant though that I've had two lots of steroids in the first cycle- and I don't like what steroids do to me. But from Cycle 2 I won't be taking the Dex so hoping its a bit easier. I should also explain that this PMT regime has been referred to by my consultant as " the old man's regime"- i.e. its meant to be a bit easier and so more tolerable for older people. In my case I'm on it because I've already had 5 different types of chemo regime ( C-vad, Velcade, Revlimid, Z-dex and Thalidomide) and of course my stem cell transplant( on May 12th it will be 4 years since my transplant. The idea I think is that my body has had such a chemo hammering that anything too strong might not be too good for me.

I've had all the usual signs of Thalidomide side effects ( a good statement of these is at http://www.cancernews.com/search/fulltext.asp?cat=6&aid=199&Type=all&SearchStr=myeloma&Archives= ) and the main problem has been the extreme tiredness. Having said that for the past couple of days I'm aware of my body picking up and feeling much better so I'm hopeful that the next cycle might be easier- that's the suggestion anyway- that cycle 1 is needed at a lower level of Thalidomide ( 50mgs) to allow the body to adjust and then the medics crank up the dosage- the optimum being I think 200mgs. We'll see.

I've also had the added difficulty of again being thrown into diabetes by the Dex but with the tapering dosage its been very difficult to set a good level of insulin so my blood sugars have been all over the place. I also have to take allopurinol to protect my kidneys and also was given anti sickness drugs. I haven't actually taken any of the anti sickness pills- in fact through the four and a half years of all my treatments- including my stem cell transplant- I think I have only been sick once-been fortunate in that respect.

So in short a bit harder than I expected but now getting ready for cycle 2 which without the Dex should be a bit easier.

Thanks to Megan, Phil and Marie

2008-05-04T17:15:00.003Z

Congrats and thanks to Marie, Phil and Megan ( that order in the foto) for doing the BUPA Fun Run today in Edinburgh on behalf of Myeloma UK.

Their Justgiving donation site is at www.justgiving.com/megslegs

A 1950s Ferguson!

2008-05-03T06:37:00.002Z

For those of you who don't know the old Fergusons( the Fergie). Great thing about Harry Ferguson is that he wasn't just building a tractor- he saw the Ferguson as contributing to alleviating world poverty by making available a cheap but efficient cultivation tool. When he invented the three way linkage - the tractor could then take universal fittings for all kinds of tools. etc etc. Interesting- eh?

Ferguson, Ferguson, Ferguson and Ferguson

2008-05-02T06:26:00.006Z

Great thing about being on steroids is that I have time all night to write my blog. Bad thing though is that I get pretty tired not sleeping and also don't like the changes in face and body shape ( vanity rules OK). But it does mean lots of free time.

Its a Ferguson week- Barry Ferguson now takes Rangers to the UEFA Cup Final. Alex Ferguson now takes Man United to the Champions League Cup Final. And I've been reading more about my favourite tractor ( quick somebody pass me my anorak!)- the classic little grey Ferguson tractor ( thanks for the photo of the 1950s model Steve). I first learnt to drive on a Ferguson in the tattie fields in Angus and when at school worked on farms driving wee fergies and other like machines- explains my addiction also to the old Series 1 Landrovers. The fergies have a very distinct sound and if you want to hear one used as a musical instrument you could listen to Dougie McLean's " Strathmore" which starts with a Ferguson firing up and then providing the rhythm for the rest of the track. My last Ferguson reference is that its the Anne Ferguson where I attend some of my clinics at he Western General in Edinburgh and where many a coffee is drunk when getting the old myeloma body checked over.

Elspeth and I had news of a good friend who is awaiting some cancer related results and we were discussing how in many respects my myeloma is almost no longer an illness- or at least it feels like that. Its become more something simply to deal with as and when things arise- and with myeloma things do arrive quite regularly and at uncertain times. As I've said before- TMTMTM- There's More To Me Than Myeloma- and I try to treat what happens simply as something to be dealt with and with little emotional hassle. The baseline - to put it bluntly- is that unless I get hit by the proverbial bus, the myeloma will kill me and getting to that point means there are some things I'll have to go through. But I've always known what might be coming and as signs get clearer Elspeth and I have planned accordingly- eg getting rid of the bath and having a wet room; having power tools for everything- screwdrivers etc; making sure I can get to the back garden without using the back steps; having an automatic car because of my left leg and arm etc; even stopping climbing ladders!. So there is less an emotional but more a practical response and it does mean that I can forget about the myeloma and also do my other things. The fact that Elspeth also had cancer treatment means and that she too simply carries on being herself of course suits us both well. I've never been one to chase up alternative therapies etc -though I do think my scatty half brained ideas involving solar panels, landrovers and Ferguson tractors are my own form of alternative distraction- because that has always seemed to me to make the cancer /myeloma the focus which I don't want it to be.

Right, I'm off to book accommodation for the Portsoy Traditional Boat Festival in June- went there last year, had a great time and didn't think I'd be here for it this year. But I am!.

Past 4.5 years and today

2008-04-30T15:08:00.004Z

Suggestion made that I let you see my medical record since diagnosis( 4.5 years ago) to see the kind of things myeloma does/can do. But bear in mind - as all myeloma patients will tell you- the experience is very individual and different for everyone of us. Go to http://www.asquithmedical.co.uk/ which is the link site from my medi tag - if I need help wherever I am the medics can have a look to see my history etc.

Todays little bit of excitement is confirmation ( its OK Helen - just reporting not worrying!!) that I have a very wee touch of osteonecrosis in my jaw with bone fragments appearring. This is due again not to the myeloma( interesting how many of my ailments have been side effects of treatment - my clots when on thalidomide before, my diabetes due to steroids, rather than direct effects of my condition) but the treatment of bone problems by bisphosphanate drugs ( bone support drugs). In my case and that of others the main culprit appears to be the drug Zometa which I had since the outset. I'm now on a different drug because of the difficulty the nurses have in canulating me ( bad veins after all the chemo). So- no surprise as we were heading slowly down the osteo thingy route but in my case there are no symptoms other than wee bits of bone. So on the scale of things I can forget but keep a watching brief on it.

For those of you of a nervous disposition I need to let you know I have to borrow a ladder to fix my solar panel!

Back on the Cycle and catching up

2008-04-30T07:04:00.004Z

Right a quick update now that I'm started Cycle 1 of the Thalidomide, Melphalan, and Prednisolone mix (TMP)with a dose of Dexamethasone (steroids) being reduced till I stop that. Next cycle I'll have no Dex and just the TMP.

After no treatment for 6 months its been quite an adjustment and as predicted- the Dex has thrown me immediately back into insulin dependent diabetes( amazing how quickly that happens) and also only letting me sleep for two or three hours some nights- this has been a feature of my Dex treatment- the steroids really do keep me going. ( apologies to those who receive my regular 3 am emails!). Main issue though is extreme tiredness and fatigue- and there is a difference. Tiredness is just the feeling of being tired. Fatigue is the result of the chemical effect on my muscles so a bit weak in the old legs and arms and can't do too much at times. But I know that as I get more into the Thalidomide side of things this should ease off. Also developed a wee tremor in my fingers ( makes my guitar and smallpipes playing a bit interesting!)- all perfectly normal for Thalidomide use.

I also had to have radiotherapy in the week after my 60th birthday party as the myeloma has damaged my sacrum a bit more and I also had to have some radiotherapy on my shoulder earlier. Its amazing how blaze you can get because on the way to get radiotherapy on my sacrum I turned a corner in the car and cracked a rib it appears- I think its the 3rd time this has happened- and again linked to the myeloma effect on the bones.

But the main thing is- I'm still here! and though I'm on my 6th regime of chemo after my transplant ( on the 12th May it will be 4 years since my stem cell transplant, my quality of life is still very, very good and I remain active and still managing some work though intending to do less. Those of you who read my blog before will be pleased to know though that I climb ladders less- and that my solar panels now meet all our water heating needs!( a great buy at £1000).

So- that's where I am just now. As many of you know my history of my various treatments is that I aim for 6 cycles but have never ever made 6- I've always responded well initially but then the myeloma hits back and on every chemo regime I've been on I've never made it passed the 5th cycle. So we'll see this time!

Starting Blog again

2008-04-28T03:48:00.003Z

Hi All
After a spell of no treatment after the Lenalidomide trial I've decided to start my blog again. I'm now back on new treatment and though not the Lenalidomide I thought you might like to hear about my post lenalidomide experiences and musings. Or not!

I had about 6 months of no treatment and enjoyed that though the myeloma did as well and my paraprotein is now at 28 and I've had more bone issues to deal with involving numbness in my nether regions. I'm now on melphalan, thalidomide and prednisolone as we try to find new means of keeping me here. It was my 60 th birthday on 1st April( yes April Fool's day explains a lot!)and as you know at one time thought I wouldn't make it. But I've now qualified for my winter fuel allowance and intend to make full use of it ( see how low my ambitions are !) The day of my birthday party was a wee bit scary as I had to go in for an immediate scan amidst fears of spinal chord compressions from the myeloma- fortunately the scan showed no spinal chord compression but there is myeloma damage to my sacrum and this was affecting the nerves in that area. Resolved for now by steroids and then back on to the new chemo regime.

I'm also currently on dexamethasone ( steroids) as well as the prednisolone(steroids) and you all know I think of how they affect me- blogs written at 3 in the morning for example! I've also been thrown back by the steroids into being insulin dependent diabetic and having a bit of trouble getting doses right because of the amount and different steroids taken.
More later.

Last post

2007-08-24T08:05:00.000Z

Just occurred to me that heading this " Last Post" suggests ( maybe to those more militarily minded) something more serious than I intended! All I meant was- this is to be the last post in the blog. Reason for that is that clearly I'm off the lenalidomide trial now but also I'm about to enter a spell where I'll probable feel quite well for a while until the time comes for more treatment. For the past two years or so I've been through about 5 different types of therapies- CVADD, stem cell transplant, thalidomide, Velcade, Zdex and the lenalidomide. I've also had surgery twice to insert plates/pins, surgery to remove my gall bladder, broken arm, had some meaningful clots and PEs and then became diabetic. All of a sudden I have no treatment and no surgery ahead of me. I'm now not even having to inject insulin!And as many of us know its often the treatment that makes us myeloma folks feel ill. So I'm hoping even for a short time to feel pretty good and would like to get myeloma" out of my head" as much as I can for this short spell- even taken on a new job contract. So would like to let the blog go as part of all that. The truth is I'm also running out of jokes so I'd better quit when I'm ahead!

How to sum up the lenalidomide trial? Better and more manageable than I thought though as usual the dexamethasone ( steroids) had their usual debilitating effect on me for a couple of days each cycle- these were high doses and its reassuring to hear that all people involved( at least that I know of) in the study had their dex dose reduced. I was also able to pretty much do things like build my solar panels( did I ever tell you about that!!) so my lenalidomide experience was in some respects better than other therapies which meant I was unable to do as much. Disappointed of course that after an initial amazing reduction in my paraprotein it climbed again and we'll need to see how quickly it continues to do so. But in general not a bad experience.

I think I'm beginning to regress now and I'm off to go camping- which I haven't done for a long time but have promised not to climb trees. ( NOPE-A CHANGE OF PLAN- GOING ON THE REAPER AFTER ALL. SEE HER AT WWW.THEREAPER.CO.UK ) For those who do keep in touch through the blog and want to continue doing so- just use my email address of asquith48@blueyonder.co.uk

Hope all goes well for those who had reason to read the blog.
Stewart

Time for a think

2007-08-21T06:56:00.000Z

Well my paraprotein is up again and this despite the 5 cycles I managed on the lenalidomide. Now up to 13 and does seem to repeat the history of my other 4 or 5 chemo regimes- successful to begin with but then the myeloma fights back/adjusts and the paraprotein count rises. One concern of course is that on relatively low paraprotein levels ( e.g. my paraprotein was 47 when first dignosed so 13 is quite low) I still have had quite a few bone issues and lesions( you'll recall I've had a broken arm and have lesions in my arms, legs, pelvis, skull and vertebrae with prophylactic pins/plates inserted in my keft tibia and left elbow). So when I ask the doc what the prognosis is then the answer is a very clear " don't really know" other than in general terms- maybe some more bone damage as the myeloma progresses and maybe more susceptible to/difficult to fight off infections.

The odd thing about this myeloma business as many of you will know is that I feel remarkably well just now on the scale of things and know that folks think I look well- so how can this man have an incurable cancer! You'll also know of one of my principles about myeloma- that there is nothing more certain about it than the uncertainty. You never know what is going to happen next week health wise! Bit like supporting Brechin City! But it is quite odd to be speaking about making arrangements for when I'm not here or how best to use the healthy time left when I feel healthier than some of my friends. But I'll have a break from treatment just now till we see what rate the myeloma progresses at and indeed see what options I might have left treatment wise- bear in mind I've had a stem cell transplant and about 5 or 6 different chemo regimes all lasting at least 4 cycles. Bit tiring.

The complicating factor for decision making just now is that Elspeth is still suffering from lymphodaema /cellulitis and is having her arm bandaged two days a week. She has also decided to stop working for a while- partly because of my situation and partly because of the need for her t0 deal with the cellulitis properly and get herself healthy again.

Phew- I'm away for a lie doon!

Ach well- I made cycle 5, and Diabetes

2007-08-17T06:29:00.000Z

Firstly, hello to the couple I met at the Oncology centre yesterday and good luck with the 4th or 5th? cycle on the Lenalidomide trial. Glad you enjoy the blog and always good to meet folks going through the same thing. Second- thanks to Don for the advice on statins. I might need to come to the US to discuss with you!

Quite a week. My wife is still off work and now has a compression bandage to address the lymph issues in her arm. This will go on for a couple of weeks and is all a legacy of the surgery for her breast cancer. She is also to take a break from work for a while so we might be able to do one or two things while we are both around.

As some of you know I've now stopped taking insulin for four days now and have had no adverse effects- in fact this morning my blood sugars were down to 5 so wee bit of a concern that they still seem to be going down. I'd also thought that I would have the usual difficulty of trying to adjust to the effect of the steroids this morning as I started cycle 6- the last cycle in the protocol of the trial. However- I haven't made cycle 6 as decision made by all ( including me as always) that it might not be worth it- my paraprotein is unfortunately still going up. Even if that hadn't been the case, I am in fact neutropenic ( neutrophils at .8) so wouldn't have received my treatment yesterday in any case. Ach well, I made and finished cycle 5 which was an achjievement in itself. There does seem to be something in my form of myeloma where the myeloma is able to adjust to resisting whatever treatment I get after 4 05 cycles. Certainly fighting hard just now to stop me going on with treatment. So its an unusual day for me today- no steroids and no insulin! Long term plan is now to monitor me but let me have a break- I've had 5 different regimes of chemotherapy over the past 3 years and also a stem cell transplant- so its been hard going. So now having a break till we get to plan B- assuming there is a Plan B!

Mailbox issues

2007-08-16T22:32:00.000Z

A new post tomorrow but just to let those who contact me know- my mailbox has been choked for the past three days by a huge file- does explain why I received no emails over the past three day. If you sent anything and had no reply - please resend as all is now well with my mailbox( I think!)

Diabetes, jaw, abseiling and Scottish stereotype!

2007-08-14T15:45:00.000Z

Was at diabetes clinic today. On Saturday I actually had my first hypoglycaemic attack ( a hypo!). As I said in my last post my blood sugar levels have been falling despite me reducing my insulin. So went off to see Diabetic Specialist nurse today and decision made I should see what happens if I take no insulin. So experiment tonight and tomorrow morning and then Gill will call me to discuss what's happened. I'll probably need to take insulin when I start my 6th cycle with the steroids on Friday. So - interesting issue- is my body no longer needing the help it gets from insulin. Watch this space- but no injections tonight or tomorrow.

Also at WGH dentist this morning and the thinking is that there is some improvement in my jaw/bone where I had the "maybe" osteonecrosis. Again still no definitive statement yet but certainly no need for intervention.

I get really well looked after as my GP ( hope you're not reading this Bill) called on Monday to see how I was- with going to hospital more I see him less. Great to get such care though its clear he and I have been seeing each other for a long time now. He told me that for my Xmas he's going to buy me an abseiling outfit so he can worry less about me on the roof looking after my solar panels. Its me that's meant to crack the jokes.

I also found my self living up to a true Scottish stereotype. As you know I've bought electronic pipes( can't play the real things as my elbow won't let me). To hear them properly I needed an amplifier. The pipes cost me over £300 but I found myself buying an amplifier at £29 - about the cheapest you can get. My thinking was is that if my predicted survival time is short then then why waste money on an expensive amplifier!! Needless to say Elspeth and my jam session friend and kids have put me right on that one and a new better amplifier is on its way. Reminds of the time in hospital when I thought the end was coming and I spent valuable time trying to find a receipt for a new pair of trousers so my wife could get a refund!

Diabetic changes?

2007-08-09T07:50:00.000Z

As some of you know I'm also insulin dependent and we think the diabetes was brought on by the amount of dexamethasone ( steroids) I've had during my various chemotherapies. When I went to the diabetic clinic a couple of weeks ago they suggested they'd like me to keep my blood sugars a bit higher than I've been doing as I seem to have been running too low. I've been reducing my insulin as suggested but still finding my blood sugars too low so wonder if I'm beginning to come out of the diabetes. Whereas I was taking 23/24 units of Novomix in the morning I'm now down to 16 ( and 6 in the evening instead of the usual 11 or so)and still find my BMs at a level lower than they want. If anyone has any thoughts or experience of coming out of a drug induced form of diabetes ( if ineed that's right) I'd welcome any info.

Not so good news, good news and really good news

2007-08-07T08:56:00.000Z

Just heard that my paraprotein is now up to 12. So despite being on the Lenalidomide- the paraprotein is continuing to rise. Not completely unexpected and the thinking is that since I'm at cycle 5 I should now continue to have cycle 6- the last cycle determined by the trial. But suspect it won't do much to reverse the upward trend which- as they say medically is a bit of a bugger. What my wife and I have been doing in any case this week is reviewing the past three years and in short its fair to say that without all the various treatments I've had I wouldn't be here. ( have a look at www.asquithmedical.co.uk to see the various ways m,yeloma has hit me and what treatment responses have been). I've also been quite fortunate in the sense that my myeloma has left me quite able to get on with other things though there have been spells where its been a bit difficult - but on the scale of things and in comparison with fellow patients my quality of life over the past few years has been pretty good. Interestingly some of my issues to deal with have been brought on by my treatment not by the myeloma. For example- I'm now insulin dependent- probably as a result of the dexamethasone( steroids) kicking me over the line. I've also a problem in my jaw which may be a result of the zometa( my bone support drug). However, the fact that I'm still here is of course a major achievement. If the lenalidomide fails to stop any further increase I already know what my next treatment attempt will be so we'll wait and see whether that materialises. But I also know I'm running out of options. And I just bought a new ladder yesterday! ( orthopaedic surgeon faints in shock!).

E is also back at the doctor as the cellulitis in her arm( where her lymph nodes were removed) hasn't cleared up completely. She wonders- as in the past- she might need some heavy duty IV antibiotics to get rid of the low lying infection that seems to be hanging around.

The good news is that having missed my trip on Reaper - the old Fifie fishing boat- I was contacted by the Museum folks to say there was another trip I could go on if I'm up to it. So hope to be sailing from Anstruther to Arbroath for the Arboath sea fest.

The really good news is that having lagged my solar pipe runs twice now- losing much less heat from the solar panels and haven't had our gas heating on for about two weeks now except for a boost one grey morning. We are even getting a rebate cheque of £250 from the electricity board! Fully expect our gas bills to be going down as well. And yes- the new ladder is to get me up on to the roof more easily and more safely ( orthopaedic surgeon faints again!)

Mid cycle review

2007-08-02T21:29:00.001Z

Was at Haematology clinic for mid cycle review. In short- feeling remarkably well though did decide not to risk my leg on the Reaper( the Fifie sailing boat) as planned- want to be sure it recovers properly from the infection. Also I seem to have another wee problem and one which - despite my openness and the indignities of hospital treatment in the past few years - I found difficult to speak to Maureen - my research nurse-about. Lets put it this way- the herpes virus has appeared again and it isn't in the form of shingles on my back but on other bits of my anatomy! But again a sign my immune system is a bit low though my bloods today were actually pretty good for mid cycle- and I knew they would be good given how well I''m feeling. I'll hear at the beginning of the week which way my paraprotein has decided to go this time. But its clear that I will also now be going on to cycle 6- an achievement of some import given my history!

Meant to say as well that at the diabetes clinic I've been asked to lower my insulin intake as my blood sugars have apparently been lower than they want- and I'm now taking much less than when I started. Interesting- wonder what's happening here.

Pins and Needles or Needles and Pins-ah( apologies to the Searchers)

2007-08-01T17:18:00.000Z

As you'll gather we've been away for a few days on holiday. Both of us with our medication packs as Elspeth has been signed off with pretty bad cellulitis in the arm where she has lymphodaema resulting from her breast cancer surgery. We both had to come back in the middle of the break to see our respective medics. In my case that involved the hospital to see the orthopaedic surgeon to check out my lesions and pin trouble etc. To cut a long story short- there appears to be little growth in the lesions in the leg with the pin in it and despite the apparent infection the pin is safe and secure. In fact he wants to adopt a " I'll call him" approach if I need to so one clinic less. But as a baseline for future infection risk he wanted some bloods taken- that's when the needle fun started- meeting nurses who hadn't encountered my veins before!! It took more than 6 goes with the nurses before a doctor was called. She then didn't so much use a needle as adopt a hammer and chisel approach- but it worked! But news re my leg is good and I was told I can do what I want until my ;leg and pin tell me not to. So I'll give all risky stuff a break for a week or so- so no climbing the ladder to my solar panel( which is working beautifully).

In terms of cycle 5- I had about three low ( physically) days after coming off the steroids but in general its not been a bad experience though I've been a bit tired. But it didn't spoil our break as we intended to have a relaxing time in any case- even went without the dog!

I also found out that the last paraprotein test was 10 but not a good measure as it was done after I'd been off the revlimid for about three weeks. But does indicate the way my myeloma is waiting in the wings to respond when I'm not getting treatment.

However, it looks as if I might even make cycle 6- I'm at Haematology clinic on Thursday and will find out more about the course of my treatment. Meantime- off to sit with my leg up( as commanded by E.

Legs, jaws and The Fairy Mountain

2007-07-23T14:33:00.000Z

Thanks to to Don and Sandi for good wishes. And for Sandi- by all accounts the second cycle on full steroid dose is the worst- certainly was for me and others so your dad is maybe going through a normal phase I hope and trust he'll pick up as the steroid dose reduces. Sure he will.

We are now in the Scottish highlands after a heavy end of the week and concern we might not get away. Good news is that I may not have osteonecrosis of the jaw and just a watching brief for now. But I was also at the diabetic clinic the same day and asked them to look at a my left leg which had become pretty swollen and tender- you- fears of a clot so sent for an ultrasound but no clot in sight. Called into my haematology ward next morning and suspected infection in my leg( the one with the pin in it) so given anti biotics to take on holiday with me and with alert that I should get in touch if no improvement etc as they didn't want the cost of a helicopter flight! Fortunately - seems to have been an infection and the anti-biotics did the trick. All appears resolved though I have to discuss with the orthopaedics as this seems to be a recurring feature of my tin leg- as they warned me it might be. But all well. Back on the steroids and usual raised blood sugars but again well controlled and I feel OK.

What is helping is that we are staying in a place overlooking Loch Rannoch and also Schiehallion- the Fairy Mountain. Maybe good vibes from the residents there!

5th Cycle here I come

2007-07-18T08:36:00.000Z

Well it looks as if after all I'll make the 5th cycle of the trial- an unusual occurrence for me to get to the 5th cycle of any treatment. I'll start the cycle on Thursday and then Friday we are going away for a wee holiday. I'm to have my bloods done on Thursday to ensure I'm OK for the cycle but I know by how I feel ( remarkably well apart from recovering from a maybe broken rib) that there won't be a problem.

Thursday proving to be an eventful day- Cycle 5 process starts; followed by Diabetes clinic ; followed by Maxillo facial guys in the afternoon. I'll need a holiday!

Pipes and pipes

2007-07-16T08:34:00.000Z

Waiting to hear if I'll stay on the trial or not. Interestingly- mixed feelings but I trust the team at WGH enough to run with whatever decision they/we make.

Meantime leaking solar pipes now fixed and all up and running except for one thing- no sun!! Also, now have my electronic (bag)pipes so I can pick up playing the old tunes again. As soon as I got them this morning I was playing them- amazing( isn't it, Grace(a joke?)) how the tunes can stay in your fingers but if you asked me to write the music or whistle a tune I probably couldn't do it. First tune I had a go at was " Invisible Dram" ( dram being Scots for a measure of whisky)- I wrote this tune for Elspeth's dad- every year we gave him a bottle of whisky for his xmas but we never saw any of it!! Hence the Invisible Dram!

Eh?

2007-07-13T16:57:00.000Z

News today- would you believe that my paraprotein is back down to 9 from 11. So with the treatment it was going up and after withdrawing from the trial its gone down again. Roller coaster time again. So issue is- does this merit staying on the trial? Will I be allowed to in terms of trial protocols? I think I did say the most annoying thing about myeloma is the uncertainty it introduces into life. I've had to accomodate this by realising that the most certain thing about myeloma is the uncertainty! I'll find out on Monday what plan of action is to be and meantime will go and lie down in a dark room and recover my energies!

But the really important news is that my solar panel is working well- the collector reached 74 degrees yesetrday and the hot water cylinder went up to 64 degrees. And all this for no cost ( I'm a Scot!). Next plan of action is to get back to playing pipe music- I gave up when my left arm was plated- too much pressure on a vulnerable elbow. But I'll buy eletronic pipes again( in fact they were ordered two hours ago).

Blogging on.

2007-07-12T14:33:00.000Z

You can't get rid of me that easily. Decided to keep the blog going since my failure to continue is of course part of the trial " results". Also had some supportive emails from folks asking that I keep it going. So I will! In any case we've now had 1911 unique visitors- I want to reach the 2000!

Post Clinic Thoughts

2007-07-08T19:24:00.000Z

Elspeth and I have now had a think about life and the universe after the news at the clinic last week and the main important conclusion we've come to is that we might in fact buy a twin coil solar cylinder to boost our solar system!.

In terms of other issues- particularly leaving the drug trial and my rising paraprotein, we'll do as we also do- concentrate on making sure we make the most of what time we have now- both personally and also in terms of keeping some work going. I'll find out in a months time just how fast the myeloma is progressing and we can make a better decision then with the WGH team about what options remain. So we'll wait til then and focus on other things for now. I do of course think over the future etc and what might be..... but I've never let the myeloma stop me doing things. As I've said all along- my TMTMTM principle ( There's More To Me Than Myeloma) has helped me put it aside when I want to get on with other things- it gets put in my diary as a separate item.

So......... delighted to tell you that I have in fact been able to get an invitation to be a guest on a sailing of the Reaper at the time of the Pittenweem Festival in August and looking forward to it immensely. See Reaper in the foto. Also possibility of a wee holiday in Norway ( a country and people we like very much) later in the month depending on how things go at next clinic.

PS

2007-07-05T21:08:00.000Z

PS- apologies to those who are expecting me to get back to them. I will do but its been a heavy week.

Hate to say I told you so, but..............

2007-07-05T20:45:00.000Z

At clinic today ( haematology ) and decision made that I will withdraw from the lenalidomide trial. My paraprotein is at 11 as you know which is a rise of 6 steps in the past 5 weeks or so. Also, my history is one of never quite making it to a complete 5th cycle, so as predicted earlier in the blog- no 5th cycle for me! And this despite the dramatic improvement the lenalidomide made in the first cycle. Great thing about WGH is that I'm part of the decision making process and my own view that I don't want to carry on with treatment unnecessarily is an element in it. Next question is obviously- so what do we do next? Its clear that we are running out of options though Huw my consultant has some tricks still up his sleeves. The nice thing about my treatment at the WGH is how well I've come to know some of the nurses and how concerned they are about what's happening to me- having had about 6 chemotherapy regimes and a stem cell transplant at the WGH it would be odd if I didn't see them as friends more than nurses. And since at least one of them is now able to tell me the Brechin City score ( I hope you are in training for the new season Liz)on a Monday morning- what more can you ask for!

But being realistic I know that we should be treating this summer as my last though we'll get a better idea of timescales when we see what rate the myeloma progresses at. The plan is to monitor me over the next month or two with no treatment and see what happens to the paraprotein levels and then take a decision about when and how to intervene. I've enough to keep me bust in any case as in the next few weeks I have to go to the Maxillo facial guys because of my jaw, go to the diabetic clinic ( my recent retinopathy test was clear), go to the Orthopaedic clinic to monitor my bone issues/pins, plates etc, go to radiology clinic to monitor effect of radiotherapy on one or two lesions, go to dental clinic at the WGH etc. As relief from all this, my sons are taking me to the Barcelona game in Edinburgh and Elspeth and I are planning to go away (with an ill dog!)for a break.

( One thing to say here is that- and this might seem odd if you don't know how varied myeloma can reveal itself- is that I consider myself very lucky medically in that though the myeloma has made me ill some times and I've broken the occasional bone, had surgery, become diabetic etc etc it hasn't actually stopped me completely from doing things. Nor have I had the pain levels some others have had. And as many cancer patients will say- the myeloma has given me the opportunity to view the world with more appreciation and get off the economic treadmill and also be closer to Elspeth and our kids. So - all in all- really quite lucky.) Why do we need to be ill to get into that state of appreciation of our lives ( I'd better stop this is getting a bit serious).

So I'll need to digest all this and have a think. Might also need to think about whether to keep the blog going or not. But the good news is that the solar panel seems to be working OK- but if we could get a wee bit more sun..................

Three months on- the wife's tale part 2.

2007-07-05T07:54:00.000Z

Yesterday's news that Stewart's paraprotein is headed in the wrong direction was not only disappointing but, to be honest, a bit of a shock. He has been so well over this last cycle! Indeed, aside from fatigue and a few blips, he has ridden out the three cycles he has had since I last gave a view for the sidelines pretty well and achieved a great deal too. Since selling the hall flooring while I was out (see 2 April entry), he has rewired and redecorated said hall, put in piping for and installed a bigger solar panel, been to France, advanced plans for the research centre on rural childhood, got a piece on myeloma in the national paper to do his bit for myeloma awareness week and had a couple of weekends away. Seeing him on the roof yesterday morning totally engrossed in fitting the first tube on the solar panel frame was a special moment for me. I didn't know the latest paraprotein result then but did think that I have Revlimid ( and Huw and the team at WGH)to thank for that moment (not to mention cheap green hot water in the future). And then there is the wormery Stewart got me ..... not perhaps the most romantic present but he got so much pleasure from anticipating its arrival and my reaction. So, whatever happens on the next leg of the journey, we will look back on some pretty good and fulfilling times on this stretch of the road.

Chinese toothpaste and that well known medical term- " Oh Bugger"

2007-07-04T21:45:00.000Z

The good news first- solar panel system now up and running and has heated water very effectively in its first afternoon. Hope this keeps going. Always an immense sense of satisfaction building some yourself and then it actually works ! ( not always the case in my experience). But this time- built a low cost system( I reckon about £1200 in total) which does in fact heat water at no cost and with low installation cost payback time should be much reduced- particularly if gas goes up again. So a good one. The reference to Chinese toothpaste is that the solar panel kit is made in China but distributed through a UK company. To connect the heat pipes to the main collector the kit contains a tube ( like a toothpaste tube) with white thermal silicone ( to make for good connections) with the instructions in Chinese. In the trade this is referred to in a short hand way as Chinese toothpaste.

The bad news is that I've just heard today my paraprotein has jumped up 4 notches and stands now at 11. So in the past 5 or 6 weeks its actually gone up from 5 to 11- not a good result and as I see Huw my consultant tomorrow we'll need to look at what all this means. And if my neutrophils haven't gone up then I suspect at the very least I won't start my 5th cycle tomorrow( Remember- I did tell you I've never completed a 5th cycle in any of my various treatments!). Many thanks to Don ( who I don't know but thanks for the nice email)who reminded us that studies are now showing that low dose dexamethasone with Revlimid is as effective if not more so in some cases. Unfortunately I had already been put on low dose dexamethasone but my paraprotein seems not to have read the recent studies and so isn't following the script. I'm also feeling my ribs pretty sore and don't know yet if this is to do with climbing ladders or to do with my myeloma ( I broke ribs coughing in the early stages of my condition). I'll follow up when at clinic tomorrow. But, as the medics say in highly technical language- Oh bugger!!

White counts/neutrophils etc

2007-07-02T13:53:00.000Z

Just had bloods done at hospital and it appears I'm neutropenic by quite a bit- my neutrophils are .7 I think normal starts at about about 2 and I often - even at my best- run at about 1.2) I usually have low white counts etc but .7 for neutrophils is low even by my standards. The protocols of the study suggest that if neutropenic then the dose of lenalidomide has to be reduced. Problem with that is that once reduced it can't be increased again. I have until Thursday for an improvement in the neutrophil level so that I can continue as planned in the trial. But remember my warning right at the outset of this trial- I've never completed 5 cycles of any drug/chemotherapy I've been on. Beginning to suspect that pattern may well happen on the lenalidomide trial as well!

I also had a paraprotein done this morning so we'll see in a couple of days whether the unfortunate trend is still on the way up.

Scaffies, zulus and fifies!

2007-07-01T17:11:00.000Z

To those of you from Brechin who have reconnected, no- "Scaffies" don't refer to the rubbish collectors! They are all types of traditional boat though as far as I could make out there was only one Zulu at the Portsoy Traditional Boat Festival.

A great event- boats, music and traditional crafts all on display and all for an entrance fee of a fiver ( though I think my chemotherapy journey accounts for the fact that the girl selling the tickets insisted I was an OAP concession. Ach well- maybe I'm older than I think). There are two boats of note in the photo and both are "Fifies". The green one in the front of the harbour wall is the Swan which sailed to Portsoy from Shetland. The sails of the other behind the Swan is the Reaper- a 70 foot fifie which is also part of the Scottish Fisheries Museum at Anstruther in Fife. ( By sheer coincidence I've just been watching Coast and there was Reaper sailing up the Fife coast!) You can judge how large the sails are by comparing them with the folk in the photo. Don't miss the festival next year if you are "in to" traditional boats.

But as well as the enjoyment of seeing the boats, it was also reassuring that I was able to go there at all and to do so on my own. Yes, Elspeth let me out to play on my own though the cost was regular texts home to let her know I was OK! But this is my drug free week( apart from my warfarin and diabetes, so was feeling quite well though it was a bit tiring. But given that on Thursday I drove to Perth, had four meetings and then drove another 150 or so miles to Portsoy all in the one day then that was pretty good by my standards. For those others on lenalidomide/revlimid I hope its reassuring that I'm still able to do things like this. I had also planned to go to a vintage tractor rally ( do you get the impression I'm maybe born into the wrong time?)near Portsoy on the Sunday but heavy rain meant that was cancelled.

For those of you who saw the article in the Scotsman last week- no I didn't say that all myeloma patients looked healthy and overweight. What I did say though was that some of us- a wee group at Edinburgh- tend to look healthy, we are a bit overweight( I'd like to get off the steroids) and have difficulty convincing some folks we are actually a little bit ill. Since my kids now know, I can tell you that I've been told that I can expect to have optimistically a year or 18 months left. So I'll keep the blog going as long as I can and as long as folks are interested- we've now had over 1600 unique visitors and I've had some nice comments from folk.

Right - off to dream about old boats and tractors whilst still waiting on the final bit of my solar panel system!

Velcade and Giftaid

2007-06-27T10:39:00.000Z

To answer Bobin(?)'s question- I had 4 cycles of Velcade and although it brought my paraprotein down it did so quite slowly. Also it was the effect of the steroids when I was on the Velcade which threw me into Diabetes.

Many thanks to Anonymous who sent £200 (almost £250 when gift aided ) to my Justgiving site www.justgiving.com/myelomajourney ). Would CM like to email me!

What's happening here? Boats and Tractors

2007-06-26T07:38:00.000Z

Not sure what's happening here- still taking the lenalidomide( finishes in a couple of days) but feel very well( usual tiredness) and no rash appearred. By this stage the last two cycles I was covered in a pretty serious rash. Its odd the things that come into your head- maybe its just talcum powder in the lenalidomide capsules! Maybe they've put in too weak a mixture. Whatever the reason, this seems a different experience from earlier cycles. The fact that my steroid dose was reduced may also be something to do with it.

I also now have an idea of my survival timescale- which I'll keep to myself just now. Its not really any different from what we were expecting- but it certainly concentrates the mind. The fact is- without the medics and the availability of recent drugs I wouldn't be here so anything else really is a great bonus.

I think you know I like tractors ( see earlier post about Dougie McLean's song Strathmore starting with the sound of a Ferguson tractor). Elspeth bought me a book on classic tractors so if you want to know about the 1900 Drutchke, the "Canadian" or about cable pull systems I'm your man. Great reading though. I've also been reading about Harry Ferguson- the man who built ( surprisingly) the Ferguson tractor and also the three way linkage system which revolutionised the attachment of implements. Part of his plan was not just to make money but also to provide third world countries with a cheap effective tractor to help address poverty through more effective farming.

As well as old tractors I also like old boats (maybe the liking of old things reflects advancing age!) and am treating myself to a weekend at the Scottish Traditional Boat Festival at Portsoy on the north coast of Aberdeenshire. Looks like a great weekend- www.scottishtraditionalboatfestival.co.uk

Can't finish my solar panels as I'm still waiting on a bit from the supplier. Mmmmm- missing all that solar energy.

Mid cycle review

2007-06-23T13:57:00.000Z

From the 4th cycle on there is in fact no mid cycle review in the trial. That is, no blood checks etc- the assumption being I suppose that by this stage any serious issues would have been thrown up. So this mid cycle review s just me!

Oddly, though I've had the usual slump after coming off steroids it hasn't been as severe as it was on the first few cycles. I'm tired but gently so- not the dramatic exhaustion I was hit with previously. As I've also said earlier, the rash hasn't appeared and it had done so by this time the last two cycles. So in general I feel better than I did on the earlier cycles and not so much affected by the lenalidomide as previously. The main issue for me is of course what is happening to my paraprotein as it took an unfortunate up turn last time round. I'll need to wait till next clinic to see what's happening to it now. If it goes up again there will probably be an issue about whether I should/ or whether indeed its worthwhile me staying on the trial. If the lenalidomide has achieved all it can, then is there any point in carrying on with it. We'll see.

Rash?

2007-06-22T08:04:00.000Z

By this time in my last two cycles a pretty severe rash had appearred and we'd put it down to the Lenalidomide. But nothing has appearred yet in this cycle though I'm half way through again. Be interesting to see if anything does appear.

Did you know.......?

2007-06-20T13:29:00.000Z

For other myeloma folks. Did you know-

that you might be eligible for care and mobility allowances? ( I get them)
that because of above you might be eligible for a motability car? Even if you can't drive, a mobility car could be acquired for your carer. (Because of my left side plates/pins problem I have one with automatic gearing etc?)
that you might be eiligible for a blue badge- again even for your driver/carer
that you might be eligible for a bus pass? I am and have one
that you might be eligible for a rail pass. I am and have one
that you can maybe drawn down a private pension as a lump sum now rather than have to wait until you're no longer here. Spend it now I say and bugger the kids!! I'm trying to do this.

And while we are on the topic, we've decided that Elspeth my wife should have Power of Attorney over me should something happens that means I can't make decisions myself. The joke around our friends and family is that the Power of Attiorney means Elspeth can make decisions about all aspects of my life-just as she's been doing for years!! BUt seriously I don't want my survivors to be in a position of dealing with the medics etc not knowing my wishes over what kind of treatment I'm prepared to tolerate etc

Just a thought.

Atoms, panels, clinics and cycles

2007-06-20T07:41:00.000Z

Important things first. As you know- I enjoy atoms of delight- events which have an immediate and pleasurable impact without the need for words or explanation. On Sunday I had not so much an atom of delight as a near nuclear power station. Watched Cardiff singer of the year and felt I'd been involved in something truly special when I hear the voice of the 23 year old singer from China. If you have a replay facility on your telly- have a listen! What a remarkable voice.

Solar panel system almost completed now but waiting on a bit from my suppliers so in about a week or so I should ( fingers crossed) have a solar panel system up and running for just over a £1000. Not bad- all we need now is the sun! I also got myself into a surreal position yesterday ( I was feeling a bit fed up with various bits of news) where I wondered if on the days I get very tired ( like this week) I could actually plug myself into a solar powered immune refreshing system just to keep me going. I'll have a word with Huw my consultant.

I collect clinics!! One feature of myeloma is how many bits of your body it can attack/involve in so many different ways. The latest is a referral ( Hi Helen) to a maxillo facial consultant as there is more of a suggestion now that I might indeed have osteonecrosis in my jaw though still not 100% sure yet- hence the referral to my 7th clinic. If anybody else collects clinics and if you have any doubles and want to swap one of them -just let me know.

Will I make my 5th cycle! As you know I've never completed a 5th cycle of treatment and as my paraprotein had gone up at end of the last cycle I wonder if we'll make it this time. Maureen, Huw and all the others involved are adamant though that they'll do what they can just to let me day I've had 5 cycles of at least one form of treatment. You should also know I've actually sold my cycle!- yup, cycling days are over.

Remarkable dance event- St Kilda+ Xmas

2007-06-18T07:01:00.000Z

For those of you with an interest in Highlands and Islands coupled with a wee bit interest in dance, there is a remarkable dance event on 22/23rd June featuring French dancers dancing on the cliffs of St Kilda( I kid you not) and with production linkages in 5 countries. I think the event in Scotland is to be largely shown at venues in Northwest but there is apparently also to be an online webcast- times to be announced I think.
See info at www.stkilda.eu where there is info about the event/film trailers and also an archive about St Kilda and the evacuation. The cliff dancers reflect the St Kildans in the archive film rope hanging while collecting the famous eggs.

It felt like Xmas eve last night- excited about the roofer coming today to put up the structure to hold my solar panels! Catch up on sleep tonight!

Something in the water?

2007-06-16T07:50:00.000Z

Couple of days ago we were told our dog has a malignant tumour in his throat- must be something in the water at our house. He's been coughing a lot and also his bark is getting deeper. The diagnosis really just confirmed what my wife and I suspected. Like many spaniels he's had a fair share of ill health and we were in fact quite surprised he made it to 14 given that he's had pancreatitis a couple of times. So holidays next few weeks etc will mean not going too far away and taking him with us as we need to track what his progress is.

I'm going through my usual bout of post steroid dip- very tired and now got the usual mucositis in my mouth and throat- but it will pass. Going to bed about 9 pm and sleeping through till 7- pretty unusual for me. Unfortunately- you know I'm being monitored for osteonecrosis( bone issues) in the jaw- I now have bone coming through my gum. I see the WGH dentist on Tuesday so we'll get an update on what's happening in that neck of the woods.

Main disappointment is my roofer couldn't come on Friday so I can't complete the pipe run on my solar panels! But he'll be here on Monday ( fingers crossed) so hope to have it up and working by the summer solstice.

Bit of a bummer

2007-06-11T22:01:00.000Z

Heard today that my paraprotein has reversed and has in fact gone up again- back up to 7. I had an extra week off treatment when we went to France and seems to show the usual issue I have- I can get the paraprotein level down but without treatment it doesn't stay low for long. Mmmm! I need to reach the 5th cycle!

Dexy's mid night runners

2007-06-10T09:24:00.000Z

(Message for Fred- no news on the dog yet- test results due back this week- but fair to say whatever it is he is struggling a bit)

Dexy's mid night runners( the dexamethasone/steroids) up to their old tricks after my first lot ( 20 tablets at 2 mgs each so still a hefty dose). My blood sugars shot away up and all the classic signs of diabetes have reappeared- despite my upping my insulin. Also awake until about 3 and then broken sleep until about 7.30 but better than some nights when I can't sleep. Fortunately I am down to one pulse ( a 4 day period on the dex ) and in any case the study protocol states that cycle 5 and 6 goes down to one pulse so I'll shortly be back in line with the study protocol. Will get a new para[protein result tomorrow so should know how its doing. The team are all optimistic that I'll manage my 5th cycle ( I think I've told you I've never made the complete 5th cycle in any of my many treatments) and the are all working their medical socks off to ensure that happens. Fact is- I wouldn't be here without their efforts and as you know I was predicted by one medic that I wouldn't be here on my birthday which was 5 weeks ago). So despite the effects of the steroids I'm happy to bear that small cost for being here longer.

One of the difficult things for us myeloma patients is that we often look very well though those who have seen us through the treatment also know how ill we can look. But it must be difficult to get over to folks that we have an incurable cancer when we look so well and are still managing work of a sort. One of the good things to come out of the trial ( and I hope you see my blog reflects it) is that quality of life is as important as staying alive. As I've said before if the lenalidomide kept me alive but wouldn't let me leave the house and pinned me to the fireside with my slippers and pipe( metaphorically speaking!) I wouldn't want that. I would rather have less time but be able to use it better. So all of what might seem to you to be personal information is me simply letting you and the Celgene folks that make the drug know that I'm still able and happy to be climbing ladders( despite the plates and pins I now have) installing solar panels, building gates, installing new water tanks, doing work with UHI; going to the South of France by plane and train, and generally being around with my family. All this is in the context of knowing - as always the case with myeloma- its all so unpredictable and uncertain as to how I'll be in the next week or the next few months. For example, despite feeling quite well just now I have no problem with and really quite welcome my outreach contact with the Marie Curie Hospice knowing that the hospice is not needed just now but might be further down the line- whenever that is.

I was also asked yesterday if I'd become a more spiritual person- I think that will keep for another blog- have a think yourself! I have to let you know that we went to a caravan for a long weekend at Balir Atholl caravan park a wee while ago- the caravan number was "42" which we thought quite appropriate as it is of course the answer the computer gave in Hitch Hikers guide to the galaxy when asked what the meaning of life was. So now I know what its all about!

Driving and Dex

2007-06-09T15:14:00.000Z

Drove over 300 miles today and to make it a bit easier delayed taking the dexamethasone till after the jour ney as my blood sugars would undoubtedly have gone up ) as they have to today!). Having the motability car with automatic gearing made it so much easier on my left side where my plate in my elbow and pin in my leg are. So a good journey despite the serious accident on the bridge which meant it took over 5 hours.

4th Cycle and no cycle

2007-06-07T15:28:00.000Z

Now starting the 4th cycle of the lenalidomide trial so the usual round of steroid stuff the next few days. After having had no drugs at all over the past two weeks I've been feeling extremely well and getting stuck into a number of things. My big aim is to make it to the 5th cycle and complete it- something I've never done before and that's my next aim.

I've also decided its maybe time to start thinking about not risking cycling too much. The pin in my leg has certainly given me some things to think about and the overnighter in hospital on Sunday night for a possible clot ( which it wasn't) has made it clear that I may be putting myself under too much strain with cycling or even walking too much( we did a lot on holiday). So the bike is being given up for now.

To complete the family medical history- our dog is in having exploratory tests at the vets with a bit of a problem. He is after all a 14 years old spaniel but looks and acts about 4 years old. I might slip him some dexamethasone to see if that can gee him up.

Solar panels this weekend.

WE've now had 1076 unique visits to this blog from about 30 countries around the world.

Hiccup and press release

2007-06-04T16:02:00.000Z

Minor hiccup last night ( well- as it turned out to be). Ended up in hospital with possibility of a DVT but in the end probably turned out to be too much walking going for my leg which has the pin in it. So on the scale of things not a major issue and always best for us to err on the side of caution.

I also promised sometime ago to let you know about something else I was working on and which didn't involve climbing ladders and installing solar panels etc! Today a press release went out announcing the establishment of a new Centre at the University of the Highlands and Islands Millenium Institute. I've been working on this some time with a colleague there and also have an honorary position there as well. We have now established a UHI Centre on Rural Childhood so again I point out that the myeloma and my various treatments including the Lenalidomide haven't brought other aspects of my life to a halt. Unfortunately my timing was impeccable as I did an interview on mobile phone when I was in hospital- not the best of contexts! Release went generally as the following extract ( I'll spare you the picture!)

UHI to launch research centre for rural childhood

UHI Millennium Institute is to launch a new research centre later this year which is expected to make a major contribution to the lives of children and young people in rural areas.

The UHI Centre for Rural Childhood, to be based at Perth College UHI, will influence the development of policy and practice on all aspects of life for children born into or brought up in the country. Many current issues will determine the main areas of interest, including health, education, crime, drugs, and the experiences of immigrant children now moving to the more rural parts of Scotland.

Professor Stewart Asquith, an honorary professor with UHI, will be the centre’s acting director. He is bringing the project to fruition with Dr Sheila Lodge, the UHI dean of arts, humanities and social sciences. Professor Asquith says it will establish UHI as a major site of local, national and international significance in the field of rural childhood.

He believes that much of the focus to date on children’s issues has largely been on children with an urban upbringing. “The UHI centre will play a major role in addressing that imbalance by emphasising the very different experiences of rural children and the implications this has for their growth and development and for effective service provision,” he explained.

“This will be achieved through research, consultancy, teaching and training, and the work of the centre will be of major interest to policymakers, practitioners and those generally charged with the responsibility of caring for children in a rural context.”

Professor Asquith, who was one of the first external examiners for the BA (hons) child and youth studies programme at UHI, said: “I am delighted the centre is coming to fruition and can think of no better place for it to be located than at UHI. I firmly believe that better understanding of the life experiences of children in our rural and remote communities will mean that we can better improve the nature of those experiences for many children.”

Formerly the head of social policy and social work at the University of Glasgow, most of Professor Asquith’s research and consultancy work has involved monitoring the extent to which the rights of children have been implemented in reference to the UN Convention on the Rights of the Child.

His work has focused on two main areas, children and the law, and combating the sexual exploitation and trafficking of children, and has taken him to most countries in central and Eastern Europe as well as Africa and the Caribbean. Much of his work has been for UNICEF, other UN agencies and for the Council of Europe.

etc etc

We're back! "Auld claes and porridge"

2007-06-03T12:15:00.000Z

Back from the South of France and we had the pleasure of a much better TGV so its gone up again in my estimation. Joutnery from Paris Charles de Gaulle to Montpellier took 4 hrs 50 minutes- a very fast journey. Journey from Montpellier to Paris CDG took just four hrs and 3 minutes- a very, very fast journey! Compare that with a delayed flight from Paris CDG to London and then from London to Edinburgh which took us in total about 6 hours! But a great holiday and well chosen week when I had no lenalidomide to take and none of the dreaded dexamethasone.

As we say here- back to " auld claes and porridge" as we settle into ordinary Edinburgh things though my solar panels will be attacked some time this week as I try to install them.

Blog visitors

2007-05-31T09:30:00.000Z

9 more visitors to the blog and we will have had 1000 unique visits.

Bonjour!!

2007-05-30T09:11:00.000Z

Well we made it- we are now in the South of France having travelled on the TGV and also having already been to the Millau bridge. TGV a bit disappointing as we seemed to be on an older one- bit threadbare carpets etc. A trick to get a seat on the TGV- make your spots obvious!!(though they are now disappearring). The Millau Bridge is stunning- a real mixture of function and design and well worth the visit.

We are in a small sea side town about 30 km from Montpellier- lovely place and suits us better than Montpellier itself.

So again- for you lenalidomide takers- whatever else it does to you it needn't stop you getting out and about. On my return my next job is to install our solar panel kit at a great saving from a professional installation.

If anyone from Celgene reads this- what is the reaction to the lenalidomide symptomatic of? asquith48@blueyonder.co.uk

a bientot

Spot check and a rash decision

2007-05-23T17:58:00.000Z

Had a spot check on the rash I have. The bad news is that the spots I have from the lenalidomide ( we think) are more extensive than even yesterday but since tonight is my last of the 21 days followed by what is now a two week drug free spell, I hope they will vanish by the time I start ( or should) start cycle 4. I would normally have a week drug free but since we are to be on holiday this is now two weeks. You'll gather the good news is that we are going on holiday on Saturday and I'm looking forward to the TGV as much as the holiday ( boys and their toys according to Ward 5 nurses!).

The really good news is that my paraprotein has dropped again to 5 so in 2.5 months it has dropped from 20 down to 5- a pretty good result and explains why I don't want to be booted off the drug trial.

Also been at the WGH Dentist today who is keeping an eye on this tooth issue- still got a bit of exposed bone and also a tender bit where the bone underneath the gum is pushing against the skin. But general optimisim its just a slow healing issue and not a case of osteonecrosis. Speaking of which there is a new set of protocols for the use of bisphosphanates from the Mayo Clinic- a useful article and one you can see at- http://www.mayoclinicproceedings.com/inside.asp?AID=4344&UID

On another medical front, you will know I'm permanently on warfarin and also that I am difficult to get blood from. I've explored the use of INR monitors ( bit like blood sugar monitors) and discussed with my health practice. Upshot is that they are to buy a monitor so that they can take INR readings from difficult folks like me just from a finger drop of blood and also without sending it away to a lab. The result is also immediate so warfarin dosage can be sorted out there and then. Seems to me to be the way to go and surely must be more cost effective than the current system which involves me going in to the practice to give blood, the nurses struggling to get blood from me, the blood being sent for analysis, me calling in later for the result, a doctor having to read my file etc. Surely a great saving in time, money and frustration!

Right , getting ready for France.
A bientot.

Radio silence

2007-05-22T16:14:00.000Z

Apologies for the wee period of radio silence. As I said I wasn't feeling too well last week and had to cancel a couple of things. My steroid dose was reduced again and the benefit is that I feel much better just now. Also means that I have time to fully recover from this cycle before we go on holiday to France on Saturday morning. I'm assuming we are going though I'm going in for a once over to the Western tomorrow morning to make sure all is OK.

My usual strategy when I don't feel too good is to do some physical work and this weekend Chris my son and I replaced the old lead water tank in our house for a super duper plastic one. Don't let anyone convince you that taking out a lead water tank is an easy job! Very heavy.

And when we come back from France my plan is to install a DIY solar panel kit which arrived yesterday. So whatever else, the drug trial hasn't stopped me doing things. My fear with myeloma has always been that it would stop me doing manual work which I like doing- its also the Scot in me- £900 for a diy solar panel kit is a lot cheaper than £3000 for a basic kit professionally installed!

No idea if my paraprotein has dropped any more yet and it may be that we take a reading tomorrow. One concern at the back of my mind is that in all the four different chemotherapies I've had I've never made it to the 5th cycle. I'm beginning to wonder with the recent reaction to the Lenalidomide ( lots of spots) whether I'll make the 5th in this drug trial. We'll see.

MAGIC apology

2007-05-17T14:07:00.000Z

Apologies to the MAGIC nurses I was meant to be speaking to tomorrow. Been at hospital today and decision made that its probably best if I don't come along to the MAGIC day in Glasgow. Number of reasons- one is I have spots! Spots are probably ( we think) associated with the lenalidomide and apparently if they cover ( which they don't yet) 50% of my body I could be withdrawn from the drug trial. I'm also still very tired and decision also made to down my dosage of dexamethasone again. I was a bit concerned that I was being a real failure on the trial but apparently the heavy regime of steroids is hitting a number of folks. Some of my bloods are a bit lowish -and again if they drop any lower then I might need to stop taking the lenalidomide at least temporarily until I recover ( maybe with the aid of GCSF)

Add to this that I've been having chest pains and my 14 year old dog is walking up hills quicker than I am - suggestion I go back to using a GTN spray. I had an angiogram in December and suggestion then was that I didn't have angina but maybe heart issues were to do with so much chemo and other treatments. Seems again ( after a clear ECG this morning) that same kind of symptoms are back- though we know one of the side effects of lenalidomide is that it can go for the heart a wee bit. So all in all- quite a full day. But we are still going on holiday next week!!

In a spot?

2007-05-16T15:43:00.000Z

Bit of a problem- I've come out in spots! Over my arms, body and legs. This actually happened at the corresponding stage of my last cycle but we put it down to a possible reaction to antibiotics. But I'm not on antibiotics this time and the spots are more pervasive than the last time- any suggestions in a brown paper envelope please!!

It also puts me in a spot as I'm meant to be giving the patient experience to a group of MAGIC ( Myeloma Advice and Guidance in the Community) Nurses in Glasgow on Friday. Fortunately I have a hospital appointment tomorrow so we can explore it there. In terms of going to speak to the MAGIC Nurses I did wonder how many would stay in the room when I went in. According to the nurses at Ward 5 at the WGH they all try to go for coffee when I come in!! ( they all know how difficult I am to canulate).

In general though I have to say that I am getting a bit tired and it does appear to be taking longer for me to get over the effects of the steroids than previously. It may also of course be the case that the lenalidomide is making me tired as fatigue is of course one of the side effects. So- always difficult to separate out the effects of the lenalidomide, steroids and my diabetes.

Boats and things

2007-05-14T08:51:00.000Z

Just back from our weekend at Pittenweem- if you haven't been to any of the fishing villages in the East Neuk of Fife- get yourself there. I've always been a sucker for fishing boats and harbours and Pittenweem has working harbour so ideal for folks like me ( who even carries a VHF radio ). We were also rewarded with the sight of an old broad beamed wooden sail boat ( what kind?) which looked as if it was coming into Pittenweem but then decided to turn and head up to Anstruther ( unfortunately under power so the huge red sail came down). We of course had to follow it up the coast and watch it coming in ( a bit precariously given the swell) to Anstruther harbour. Quite a sight with the main mast broader than the men on the boat.

Great to get away but again I seem to be taking longer to recover from the either the effect of the steroids or of the accumulative effect of the lenalidomide( or both). Even on Sunday- six days since my last steroids- still pretty tired and a wee bit weak. But again if the lenalidomide is doing its job then I have no real complaints. But given the timing of our trip to France on the 26th May- getting a wee bit concerned about how I'll be when we are meant to be travelling. But we are going to France!!!

Still crashing

2007-05-10T20:43:00.000Z

This is the longest post steroid crash I've had and I've felt pretty wobbly today again and with no strength or energy to do anything. Again the difference between fatigue and tiredness comes to mind- and this isn't tiredness! It appears I'm not the only one on the trial one experiencing steroid withdrawal - the dose is after all pretty high and there may be a cumulative effect.

Big Crash

2007-05-09T08:52:00.000Z

Yesterday was the first day off steroids after my four day block- had my biggest crash yet and by the end of the day could hardly get upstairs to bed. Don't know how much this is the steroids or the diabetes or both but it was certainly a hard day. As you'll all know by now I try to keep physically active but guess I may have to do less as I come off the steroids.
Phew!

Down again, cars and transplants(+ John Martin)

2007-05-07T16:58:00.000Z

Got my latest paraprotein count and its down again- just down to 6 from 7 but remember the first cycle dropped it dramatically from 20 to 7 so in total so fater two cycles on the lenlidomide that's me down from 20 - 6. Pretty good going. As we all know this isn't a cure but it will hopefully be buying more survival time. All very positive. Be interesting to see whether ( and in which direction) the recent reduction from three four day blocks down to two four day block on dexamethasone will have an effect. Some studies are showing a very positive effect of the lenalidomide with a lesser rather than bigger dose of steroids.

On Wednesday I also get my motability car. You'll recall that my main problems are all down my left side- plate in my left elbow; pin through my tibia and now a bit of concern about another lesion in my left arm. The changing of the clutch and the changing of gears a wee bit problematic so moving to an automatic car will help considerably I hope.

The big event is that on May 12th at 2 pm it will be three years since my stem cell transplant at the WGH. Given that I thought I might not be here on my birthday ( 1st April) this is major event for me and also time again to acknowledge the role played by everyone in my survival- what is clear about myeloma is that treatment is a real team effort with all playing what I think an equal role- the nurses giving me my treatment and struggling to canulate me through four chemotherapy regimes; Liz my transplant coordinator holding it all together on a regular basis and even now becoming a Brechin City supporter; Maureen taking me through the Myeloma IX study and now the Lenalidomide trial; Huw my consultant always there when needed and maiking the key decisions about where we go next; the regular and comforting contact with Brenda the Ward doctor; the care from Helen the WGH dentist who has a special awareness of the myeloma issues and works in close contact with the haematology team; Mr Porter the orthopaedic consultant at the Royal who has seen to my successful plating and pinning surgery; Dr Yuille who organised and monitors my radiatotherapy need etc.; the diabetic clinic who also keep in contact with haematology. Add to this the help from my Health Practice who are kept in close touch with the hospital and now the link with Barbara at the Marie Curie hospice.

This is quite a list of individuals and I have always felt that there has been joined up working. They will I hope forgive my gentle harassment when I want to know what's happening and what's next on my agenda. But in short I owe them a big thanks and without them Brechin City might by now have lost a sizeable proportion of its support!!

+ John Martin- steroid induced insomnia last night but listened to a programme about John - had forgotten what great songs Sold Air ( really 30 years old) and May You Never are.

Counts- diabetic and political, and hornygollochs!!

2007-05-04T20:03:00.000Z

Counts- diabetic. As usual despite giving myself almost 10 more insulin units my blood sugars have gone up to 20 since I took my dexamethasone(steroids) at 7.30am (when they were 7.6). Pretty dramatic effect and I always know when my counts go up as my vision begins to get fuzzy a bit till the insulin kicks in.

Counts- political. Also a dramatic result with the SNP gaining more seats than any other party though we don't yet know how that translates into government. Could be that the Scottish Nationalits have more seats but can't form a government if they can't persuade others into a coalition. So maybe they've had the negative effect of high counts as well- hope they don't have a political steroid crash. And yes- to "come out" - I voted SNP. And why was it spoiled a bit by such a disaster in the voting process. Donald Dewar the father of Scottish devolutuion once said that devolution was a process, not an event. He must be turning in his grave at last night's embarassing debacle or "burach*" as Brian Taylor the BBC Scotland political editor called it using the more descriptive Gaelic word.

* PS there are some Scottish words I love to say- so satisfying in their expression. One of my other favourites from younger days in Angus was "hornygolloch" for the forkietail insect with lots of legs- I can never remember which. Maybe I'll write the next post in the Scots I used as a child- I've always claimed that at base level English is my second language- ever since the day I was belted at school for using "kirk" instead of "church". (Goodness where did that long held grudge come from!!) Seeing a hornygolloch almost qualifies as an atom of delight because you can use the word!

Clinic and cycle 3

2007-05-03T20:30:00.001Z

Down at Ward 5 today for my IGG infusion. Despite the difficulties the nurses generally have canulating me, Tracy ( pretty much as usual) managed first time! But she is going off on maternity leave- how could she!! Decision made though that I can stop IGG infusions ( and resume them as needs be) and won't be going back on the zometa ( bone support drug) just yet. And when I do go back on it it will probably be a pill equivalent rather than continue infusions. So no more canulas needed for my treatment- thank goodness.

At clinic in the afternoon and again I will be having less steroids in cycle 3- one "pulse" less ( i.e. one block of four days less). Keen to see what my paraprotein is as it was tested today though takes a couple of days for the result to come through and since its a bank holiday weekend I will have to wait till Tuesday. Hopefully its gone down again.

One of my friends- who was at the xmas lunch last week is now also going on the lenalidomide trial- be interesting to compare notes and I might get him ( Fred) to write a bit in the blog.

So cycle 3 starts tomorrow with the steroids and having felt so well over the past week or so with no drugs its quite a thought to start again- but made easier in the knowledge I have less steroids to take.

As you know I also have to take warfarin for the rest of my life and just as I'm difficult to canulate I'm also quite difficult to get blood for my INR - the test which determines warfarin dosage. So I've been exploring again ( I did this last year) the possibility of buying an INR blood monitor- works on the same principle as a blood sugar monitor- just needs a drop of blood rather than ( as Hancock would say) an "armful" for lab testing. Checked with folks at WGH about its acceptability and also discussing with my GP as my practice would need to support me. But the idea of just calling in with a result rather than having to go to give blood; having to go through the difficulty of giving blood, waiting for the result; calling in for the result and involving both doctor and nurses really quite appeals. Unfortunately whereas my blood sugar monitors cost about £12, INR monitors cost about £350 just now. Mmmm. You can see more about the INR monitors at www.coaguchek.co.uk

The big issue up here in ZScotland is of course whether we will wake up in the morning with the Scottish National Party in power and Alex Salmod as First MInister. Can't believe how the BBC have ignored this possibility and the long term implications it might have for the UK.

Clinic and cycle 3

2007-05-03T20:30:00.000Z

Down at Ward 5 today for my IGG infusion. Despite the difficulties the nurses generally have canulating me, Tracy ( pretty much as usual) managed first time! But she is going off on maternity leave- how could she!! Decision made though that I can stop IGG infusions ( and resume them as needs be) and won't be going back on the zometa ( bone support drug) just yet. And when I do go back on it it will probably be a pill equivalent rather than continue infusions. So no more canulas needed for my treatment- thank goodness.

At clinic in the afternoon and again I will be having less steroids in cycle 3- one "pulse" less ( i.e. one block of four days less). Keen to see what my paraprotein is as it was tested today though takes a couple of days for the result to come through and since its a bank holiday weekend I will have to wait till Tuesday. Hopefully its gone down again.

One of my friends- who was at the xmas lunch last week is now also going on the lenalidomide trial- be interesting to compare notes and I might get hime ( Fred) to write a bit in the blog.

So cycle 3 starts tomorrow with the steroids and having felt so well over the past week or so with no drugs its quite a thought to start again- but made easier in the knowledge I have less steroids to take.

As you know I also have to take warfarin for the rest of my life and just as I'm difficult to canulate I'm also quite difficult to get blood for my INR - the test which determines warfarin dosage. So I've been exploring again ( I did this last year) the possibility of buying an INR blood monitor- works on the same principle as a blood sugar monitor- just needs a drop of blood rather than ( as Han cock would say) an armful for lab testing. Checked with folks at WGH about its acceptability and also discussing with my GP as my practice would need to support me. But the idea of just calling in with a result rather than having to go to give blood; having to go through the difficulty of giving blood, waiting for the result; calling in for the result and involving both doctor and nurses really quite appeals. Unfortunately whereas my blood sugar monitors cost about £12, INR monitors cost about £350 just now. Mmmm. You can see more about the INR monitors at www.coaguchek.co.uk

The big issue tonight thopugh is whether we will wake up in Scotland with the SNP in power and Alexd