Saturday, 27 December 2008
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!
Saturday, 20 December 2008
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!
Friday, 19 December 2008
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!
Wednesday, 10 December 2008
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.
Wednesday, 3 December 2008
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 firstname.lastname@example.org
Saturday, 29 November 2008
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.
Tuesday, 25 November 2008
Well I thought it was funny.
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).
Monday, 10 November 2008
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.
Sunday, 2 November 2008
Friday, 31 October 2008
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).
Tuesday, 23 September 2008
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!
Tuesday, 9 September 2008
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.
Friday, 29 August 2008
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.
Tuesday, 5 August 2008
Saturday, 2 August 2008
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!
Sunday, 27 July 2008
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.
Thursday, 17 July 2008
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)
Friday, 11 July 2008
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.
Wednesday, 9 July 2008
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!
Monday, 30 June 2008
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!
Tuesday, 24 June 2008
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".
Monday, 23 June 2008
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.
Friday, 20 June 2008
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!
Tuesday, 17 June 2008
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.
Friday, 13 June 2008
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.
Tuesday, 10 June 2008
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.
Thursday, 5 June 2008
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?
Thursday, 29 May 2008
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.
Wednesday, 21 May 2008
Tuesday, 20 May 2008
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!
Saturday, 17 May 2008
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.
Thursday, 15 May 2008
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.
Wednesday, 14 May 2008
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!
Monday, 12 May 2008
PS- I'm now home- a bit early but on a promise not to do too much.
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, 11 May 2008
Saturday, 10 May 2008
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!
Tuesday, 6 May 2008
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.
Sunday, 4 May 2008
Saturday, 3 May 2008
Friday, 2 May 2008
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!.
Wednesday, 30 April 2008
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!
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!
Monday, 28 April 2008
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.