FL had his regular hospital appointment today.
The good news is that there is no news. His blood results (from a month ago) remain stable, and the doctor said if he wasn’t on a clinical trial he wouldn’t be having a monthly monitoring appointment anymore.
However, because of the trial, he has now had his dose of Thalidomide doubled to 100mg per day, despite our concerns about him losing feeling in his hands and feet. I had to quiz the doctor about this. Loss of feeling in the extremities is an irreversible side-effect of Thalidomide, and the doctor grudgingly conceded that if FL feels the symptoms are getting worse, he should reduce the dose back to 50mg, or even discontinue taking it altogether. If I had not asked, FL would not have been “warned” and would more than likely not have mentioned increasing problems until it was too late. I have seen patients in the waiting room who are unable to hold a cup of tea because they have no feeling in their fingers.
FL’s other minor complaint of cramp was put down to being a side-effect of his Zometa drip. Again, the doctor said that he could discontinue the treatment if it became “an issue”.
At what point does a side effect become “an issue” I wonder? Certainly FL does not want to lose feeling in his fingers or toes. But he doesn’t want the myeloma to rush back either and these drugs are allegedly keeping it at bay.
So while I know we should be celebrating FL’s comparative health and energy, I have this nagging worry that we aren’t sufficiently informed about the drugs he is taking and their side-effects, and that the doctors aren’t particularly “on the ball”. Certainly today’s doctor was not too keen on answering my questions and was trying to get us out of the consulting room as fast as possible, despite having waited almost two hours to be seen! So, I don’t know what to think. I suppose I should be thankful they are still monitoring his blood, so at least we will know when the MM comes back – although even then it will be a month after the event!
On an entirely different tack: I just looked up from my desk, which overlooks a Committee Room and there is a woman in a meeting who is knitting! She has short circular needles and is doing it continental style. Amazing! That sort of thing just doesn’t happen around here! Nice shade of berry red too.
My designs
About Me
- Roobeedoo
- I live with my First Love in a rural idyll, after a lifetime in exile. In July 2007 he was diagnosed with Multiple Myeloma: an incurable cancer of the blood plasma. We got married in December 2007. Carpe diem. There is lots of wind and sky where I live, which blows me away. I love reading and stitching and creating things. I have two lovely children, a dog and my First Love. The Roobeedoo Manifesto, January 2012: I hereby undertake to make all my own clothing or purchase it from ethically-minded independent designers. For now. For always.
5 comments:
Some practitioners don't seem to understand what 'informed consent' actually means. I understand that sometimes the clinician is walking a tightrope - some patients have a limit to the amount of information that they are willing/able to hear. But when someone is making it very clear that they want the information, some medics still can't seem to pass the knowledge on.
Hope the right balance can be found with the thalidomide.
Indai
Glad things are well. I can certainly appreciate the issues with side effects not being fully explained. The same thing happened to my mum with the drug she was on for her irregular heartbeat. It ended up doing more harm than good as the doctors only monitored the most common side effects (liver and kidney damage) and not the potential damage to her lungs. As her breathing got worse it was put down to her worsening heart valve so was undiagnosed for over a year. Why is it so often up to the patient and their family to work out what is best? I guess at least now we have access to information that would have been very hard to come by even 10 years ago. Maybe this is also a blessing in disguise. There is noone knitting here, but I have just had to use my tape measure to measure how much smaller our new desks are going to be!
Where does this guy think his wage packet is coming from - his own golden backside? Stupid git. Next time I'd ask him what he has to do that is more important than seeing his patients.
Wish we had people knitting in meetings. I'd get loads more done... Ooo! And I got the Sew What? book too yesterday. And may have bought fabric ;) Thanks for the recommendation!
Do you read Annie Modesitt's blog? Her husband has MM too. I don't think she's mentioned her husband having thalidomide, but she's a very helpful person and she'd answer if you emailed her; not necessarily with precise anwers to your questions but she'd have something to say. http://www.modeknit.com/ Sorry if you know all about her already :)
I just googled and found that Annie M's husband has taken thalidomide - she says that in the US it costs $5,000 per month, gulp. http://www.modeknit.com/2007/07/native-esque.html
Post a Comment