Wednesday, 10 December 2008

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.


Cameron said...

Hi Stewart.

Targets - that's what we all need! I am a great believer in setting realistic targets and getting our minds firmly fixed on them. We have two overseas holidays arranged next year in February (Tenerife) and May (Almeria in Spain) and as the flights are already paid for, like a true Scotsman. I'll be there!

Hope you are well enough to manage the Dutch Golden Circle. On our last visit to Tenerife we met a very nice Dutch couple who own a pub called Cafe Bok in Enkhuizen, which I think is in the region of where you're planning to be. They are very keen cyclists and have a room available in their pub. Let me know if your plans get to fruition and I will fix you an introduction.

I saw my consultant today at the QE in Birmingham and my paraprotein is still stable, no symptoms and as he said, " I was smouldering away nicely".

Have a great Christmas and all the best for 2009 and beyond.


Don said...

Wonderful to have such caring people as your medical providers are. And we must think that it is due at least in part to the spirit and toughness of the person they are caring about.