Catch up time.

It’s been a good while since I posted so I thought it was a good time to provide a little update. Since the autoglas stem cell transplant things have been going well. I am still classed as being in remission. I am now taking a maintenance dose of Lenalidomide (a chemotherapy often referred to by its trade name, Revlimid ) along with a few other drugs. This will be a permanent arrangement until I’m no longer in remission which will happen at some point, however this could (hopefully) be a long way off.

I still take MST morphine twice per day and Orormorph (morphine liquid 10mg in 5 ml) as and when required. I’ve been to see a consultant about the continuing problems with my back. Initially he wants to try injections into my back to see if they relieve the pain. Got to say that I don’t think they will do much and I am not entirely convinced that the consultant fully understands what has been going on despite having met him three times now and trying to explain what has been going on. The first time I met him I thought he fully understood but now I’m not so sure. Still that can be sorted as time goes on. I did have a conversation with a patient who had been through exactly the same treatment as me and she reported identical symptoms to me (fatigue, bone pain) which for her lasted about a year after the transplant. Unfortunately a year on she is no longer in remission.

I’ve now retired from work. This was a really difficult decision and I miss it like mad. The decision had to be taken both for my benefit and the benefit of my employer, given the amount of medication I’m still taking and the fact that I’m having real problems with fatigue. which I’ve had a long time now Fatigue has been a symptom right through my treatment but it seems to be getting progressively worse rather than better. This may be something to do with my medication so I’ll be discussing it with the consultant this week. I also have to attend hospital every four weeks to have Zometa infusions and then again every month to see either my consultant or senior research nurse. Unfortunately things are a bit out of sync so I am there every couple of weeks.  With all that taken into account I was unable to give my full attention to work. It was a mutual decision supported by the pension’s medical officer. I have to say that my employer and colleagues have been fantastic right from the beginning. I couldn’t have asked for more support. Hopefully it’s a blip in the road. I am going to take a few months and then regroup. Who knows what opportunities will present? Onwards and upwards! My mind is already ticking.

All in all everything is still very positive and going pretty well.