Friday, 30 January 2009

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.

Monday, 26 January 2009

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.

Friday, 23 January 2009

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!

Saturday, 17 January 2009

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!

Saturday, 3 January 2009


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