Progressing quietly

Just a short update as I realise it’s ages since my last blog. I don’t have very recent news, but at my last consultant’s appointment a couple of weeks ago, she gave me some figures showing the first cycle of Velcade has brought down my myeloma levels a fair bit, so good news there. Everything is always behind hand, as I don’t get the next blood test results until the next appointment, so I can’t say how round two has gone yet. Two weeks into round three atm.

I am finding the treatment regime quite hard work but doable. Since the first round I have been lucky and not had to have more blood. I think my blood pressure is pretty low sometimes, but I have been OK. The injections in my stomach haven’t left the very bad blotches some people have – I am rubbing my stomach with evening primrose oil as suggested. Atm I have some bruising, but it’s not too bad. I don’t get any bad nausea and only the occasional bit of a headache.My main issue is the fact that my peripheral neuropathy (nerve damage) does seem to be worse and has advanced a bit more up my legs and is also now in my fingers and possibly arms. In fact I seem to get the odd face tingle too. So I am having a nerve induction test on Thursday to see how bad it is. It is quite difficult to be objective about it, as the feeling does change from day to day and when I am puffed up from water retention the PN seems worse.

The steroids are a real pain. Sleeping is very difficult for the two weeks I am on 80mg a week, and I am lucky to get a few hours a night. I also find it’s tricky to nap however tired I feel. I have been trying to do some useful things at night. I have found myself overdoing it some days and wanting to buzz about. My muscles are completely weak and I’m not yet in a good exercise routine. Must do it!!

Then withdrawal in the final week is horrible – very tired, shaky, irritable etc. My stomach and guts are permanently inflated for much of the cycle and my consultant doesn’t really want me to take probiotics, which aren’t recommended for people with low immune systems. I’m trying hard not to give into the terrible munchies I get all the time, which makes the problem worse. I am very puffed up and have a mild diuretic, which is so irritating, what with all the peeing!!

I am going to the hospital maxillofacial unit today as I have a tooth problem and the meds I was on (Zometa) to strengthen my bones, can lead to a nasty bone problem called osteonecrosis of the jaw (ONJ) if a tooth is extracted. I will do more on this once I have had some info as it should be of interest to myeloma patients.

However, when all is said and done, I am managing to toodle along, with some adjustments to lifestyle. I have withdrawn a bit to a quieter time at home and I guess this will be the pattern for a while. I am trying to do a few things to keep me sane. I keep up the union and political blog writing and editing. I have enjoyed seeing recent visitors who blow in fresh air with them! I am at the theatre this evening to see a Jane Austen production with my daughter and daughter-in-law and we have a couple of comedians to see coming up. We saw the local Diwali procession in town on Saturday which I enjoyed. Also I am baking! It may not be swimming with dolphins or sky diving but it suits me just fine and I am grateful for what I have.