Attitude

Well I suppose I start this one with the obligatory apologies for not having posted in so long. In fairness I did say I’d drop in and out of this but, and not that I think people do follow this blog, I apologies if anyone has been waiting for an update.

To start on a positive so my cancer levels are still fully under control. I continue to take the chemo maintenance Revlamid (Lenolidamide) and it is really appearing to be doing its job. I did discuss a drugs holiday with my consultant this week as fatigue is still a major issue but we have decided just to keep things going as they are. Why rock the boat right?

Despite things being well its actually been a hellish few months. I’ve been suffering with chronic back pain. Ive been back on my sticks and using my wheelchair as it’s been so bad. I spoke to the pain clinic yesterday and they have another drug they are going to add to help me rattle a little more. At least I won’t be able to sneak up on anyone, unlike these bloody clowns that are all the new rage. The back pain has been pretty severe and ruined a recent break to Greece as by the end of the week I was practically carried from the Plane upon arriving home. Last Sunday I had another round of nerve blocking injections into my back and they have helped a lot. Although they haven’t worked as well as the previous round did they have definitely helped. I’m back on my feet and just using my stick. The pain is more like a dull ache at the minute so the relief is palpable. I just need to see how long it lasts. The previous round lasted about three weeks. But we just take it a bit at a time and work on to the next bit.

Its that theme of working on to the next bit that really has spurred the update to the blog this month. Unfortunately the wife of someone very close to me has been diagnosed with cancer and is going through hell. I’m not going to name them at all. They know who they are and thats whats important. It is really a vicious cancer that has reared its ugly head and it’s heartbreaking to see them going through so much pain. Physically and mentally. They know we are here for them and will do whatever they need to help. So many people offer that help in the early days but for whatever reasons it doesn’t always come to fruition and sometimes offers can seem a little hollow. I do hope that they realise that I really do mean it. I do hope that if required they will take me up on the offer. It’s been so tough watching them go through it all. I’m blessed that my cancer has been manageable and with very few complications. Mentally it’s been tough and I think really that is the hardest thing to deal with. With that said I think on the whole my attitude has been mainly positive and that has helped.

In the beginning of her illness our friend was struggling with the mental part of it all. We all got together and had a long old discussion. I can’t tell anyone how they should feel or how they should be handling their illness but I do understand how tough it can be and can at least empathise to some extent and maybe more so than someone who has not or is not going through cancer. I think it’s the unseen part of the illness that a lot of people don’t understand or take for granted. The mental strains of the illness. Of course the professionals in the main get it. They deal with it daily, but I certainly wasn’t prepared for what was coming my way. I consider myself to be strong minded, certainly opinionated, but I think it takes time to understand that it’s affecting you or even to admit that you’re not maybe as mentally tough as you think you are.

I’m a strong believer that what gets me through was the early understanding that it wasn’t all about me and that the people around me, that I love were going to go through their own battles and if anything I had to give things my best shot for them. The understanding that you can’t think about the endgame which to be honest comes to us all, but in fairness comes to a lot of cancer patients sooner that it should. The understanding that I was just going to throw myself into the hands of the NHS and that I would just cross each bridge as I came to it, particularly as you never know what is round the corner. You never know when the next breakthrough is going to be and even if you have only been given a short life expectancy then you don’t know if they will suddenly find something that will prolong your prognosis or even provide a cure and that with this in mind you have no choice really but to press on. There have been so many positive breakthroughs and advances recently.

I think this positive (as positive as it can be ) attitude helped me with my medication and made my life that bit easier to bare. I don’t pretend that it’s been a breeze. It would have been much easier to throw in the towel at the beginning, and at times it was so tempting. There have been and continue to be some very dark days. Anyway this is the vain in which our discussion went and I was told that it had helped and given some comfort. I really hope it did, certainly form the outside looking in it appears to have helped a little. Things have not been going well at all for my friends but I know that she is taking brave decisions that earlier on she may not have done. Not solely because of things I might have said but maybe she just needed to reorganise her thoughts a little and talking helped to do that. Our thoughts are with them always at the minute.

The message here is not one of patronisation it’s, that for me, the right frame of mind is vital and you really must look at the whole situation holistically because if you look at in terms of your own isolation then things are going to be much tougher than they need to be. As I said the professionals see it all the time and although I have put off speaking to anyone I have recently agreed to speak to counsellors and am just waiting for the appointments. Sometimes at the minute I feel like it’s engulfing me. Its hitting not only me it’s targeting  but those people closest to me, friends and family. I’m also meeting more and more people with myeloma at my monthly appointments and it’s becoming hard to keep up with all the stories being told. So It’s about time I spoke to a professional. I can’t expect my wife to be my only soundboard. I think that’s something I’ve taken a little bit too for granted and it’s not fair. Still a common theme of my previous posts is that you must find someone to talk too. Whoever that might be.

Cancer is a bitch and I’ve certainly had my fill of it this past year but it is what it is and if I can keep a positive mind then I’ll plod on like the rest of you.