Attitude part2

Its been a long time since I posted so I thought it was time for a little update. In my last post I wrote of the difficulties my friends wife was experiencing. Unfortunately she lost her battle. It was a really difficult time but our focus was on helping her husband and child to get through the initial aftermath. So I’ve stayed away from blogging for a while. I’m not going to dwell on it apart from to let you know it happened and it was not the greatest of times.

For me its pretty much been the same old story. Good days and bad. Thankfully not bad all the time. I’m still getting a lot of bone pain and the med’s aren’t helping a great deal although I dread to think what it would be like if I wasn’t taking them. Tiredness is still an issue as is the issue with cold sweats. The other issue has been a kind of headache, not painful as such but debilitating when it comes on. It affects my vision and leaves me feeling pretty sick and disorientated. I raised the issue with the pain clinic and it turns out to be a side affect that some people get from taking Gabapentin. Its not happening all the time and is nothing really to worry about, just something to keep an eye on.I just thought it was worth mentioning in case anyone else is taking the same medication. My cancer is still very much under control. I’m taking a short break from taking the chemotherapy, Revlamid. Its just a break to see if it improves the quality of life and to see if it impacts my fatigue and to see if it reduces the number of crappy days. I’m still waiting to have the third set of injections in my back. I’ve been told that its going to be the last attempt with them and that if they don’t work then no further work will be tried and my back pain will just have to be managed with medication.

I think I hinted at it in my previous posts but the toughest part of things ongoing is not the med’s and the cancer, its the psychological part of things. I did go and see a counselor from Macmillan but its not for me so I stopped going after the second visit. Don’t get me wrong I’m not drowning in my own tears everyday its just the nagging that goes on sometimes in the back of my head. Some events make it harder like the passing of my friend earlier. It brought about a conversation with my wife were I mentioned that I wished my cancer had taken me quick. This caused a pretty shocked reaction that I didn’t expect. In hindsight I should have kept that one to myself. I didn’t mean it in a selfish way and explained that its just Myeloma is classed as a “stable” cancer but stable also means slow. One which can be managed but not cured. That’s all great but its still cancer and for the person with it, and I’m not the only person who thinks this from reading others stories, the fact that it doesn’t mean an imminent demise doesn’t make it any easier. Its difficult to explain and I’m sure people with cancer who don’t have a long time to live would wish to have the chance to have more time. I wish they had that extra time as well, Its just that sometimes it feels like I’m serving a sentence on Death Row for a crime I didn’t commit and I don’t think longevity helps. I don’t mean that to sound dramatic or say it to be a drama queen. In the beginning I was told that if I did not have treatment then I was looking at three years to live and that if I had the treatment then “I’d comfortably be given ten”. of course when my myeloma reaches the point that it needs treating again then I’ll get back on the roundabout. Ten years apparently (according to a Myeloma UK article I recently read) is a recognised limit for a high number of Myeloma patients. There may be a point where they have a cure for Myeloma but for now I wait knowing that at some point I’ll start again and that for me the clock is ticking and I don’t really know when it started.  Its easy to say don’t dwell on it but sometimes its hard not too. If that makes sense? Probably not but it does to me and sometimes its difficult to deal with.

Reading this back to myself as I edit it sounds pretty dramatic but its not meant to. The whole point of this blog is to tell it how it is and to be honest so I hope its the honesty that is coming across rather than the melancholies. I hope that if there are other people feeling the same way about their illness that they realise that they are not alone. The positive is that we just crack on and take it as it comes, warts and all.

Well that’s my “little” update lol. I’ll try and keep future posts shorter. The top and bottom is that its same old same old at the moment and things are pretty good actually.