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!