Not finished yet!!

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

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

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

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.

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

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

Time, uncertainty, myeloma and treatment cycles

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

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

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

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

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

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

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

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

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!!

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

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)

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

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

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.