Two years on Revlimid

I’ve now been on Revlimid for two years! Still hard going, but keeping me in remission. I managed to get over my c.diff though it took an age to get my digestion back to normal.

I was recently taken off my bone-strengthening Zometa injections as if you are on them long term there is a (small) possibility of a serious jaw condition developing and as I’m in remission the consultant decided it might be safer. I was put on Alendronic Acid – a large tablet once a week. Unfortunately it can have awful side effects for some people- especially in terms of indigestion and attacking mucus membranes, as well as the usual collection of other effects. I’ve had three pills now and my throat and oesophagus are burning and I have developed bad diarrhoea, partly also as a result of taking Gavescon, which doesn’t really agree with me, to help with the symptoms. I am definitely not taking it this week – we need to look at alternatives. I wonder if my old Bonefos tablets might be better. They did give me indigestion, but not like this.

However, we had a good few days in Bruges some weeks back – we’d been before but took my son and his wife with us this time. I was a bit worried that I wouldn’t be able to eat properly, but I was fine and managed to walk quite long distances and eat quite a bit! Mind, I did have rather a large number of eggs which did necessitate a few days of Lactulose when we came home! Before we went away I had been having problems with pain in my ribs and back on my right side, but this subsided with all the exercise. I am waiting for x-ray results but the pains do seem more muscular than bone related – though of course myeloma can cause these pains if the bones are affected. I sleep propped up because of the acid reflux and I think this causes some of the aches and pains.

Bob and I are off to Guernsey for 5 or 6 nights at the end of July. The annoying thing is the cost of travel insurance. Bob’s is very cheap even with the specialist company I’m using, but our total for this holiday coming up is around £108, partly as Guernsey is counted as part of Europe, not the UK. Also, you have to declare everything for the last 2 years, and for me that has included removal of my gallbladder, shingles, c.diff, chest infection etc. I can probably understand that I am a bit more of a risk, but the costs can be stupidly high for people who have been treated for conditions like breast cancer and are in remission and not likely to suddenly fall ill as I might.

Other good news has been my son getting a new job – still on a low salary, but with better promotion prospects, and my daughter getting a First at Uni. Now she has to get a job!

So things are ticking along – hoping for better health over the summer so we can enjoy our holiday – and of course better weather too!! I hope you all have a good holiday as well.