This week brought me a fresh dose of reality when I had another two days of my regular treatment. It has been six weeks since my last session, as we slowly look to stop this regime, which has continued for nearly three years. I have had more than two years of fortnightly sessions which has now had the optimum effect and we need to slowly stop it and then see if my body is finally clear of graft v host disease (rejection issues.) Slowing sessions has enabled me to have more personal time, and my health has been good, so I was starting to forget about my issues for a bit.
I have been able to do lots of exciting things in relation to my work, so my mind has been occupied positively. My treatment is very specialised and is specifically for people that have blood cancer and stem cell transplants, and I meet so many lovely people who have a variety of issues. The treatment takes time to be effective, so it is not unusual to see the same people frequently. This time I met some regulars and some relatively new patients, and it occurred to me from talking to everyone in the room, what a real mixture of emotions we go through once cancer enters our lives.
There I was laughing and joking with everyone feeling pleased, and looking forward to my treatment ending, but there were people who were frightened and apprehensive as they started their own regime. I understand totally what they were going through as I also have been in that place. But it made me think what torture we endure with the constant shift of emotions, rarely staying on one cycle long.
During my own seven years, I think I have encountered every possible emotion, from despair and desperation to elation. But the most difficult thing I find is not knowing from day to day how I’m going to feel. Obviously my mental well being is linked to my health, which at times can be so unreliable, my emotions fly all over the place. Currently I am struggling to believe how positive things have been, and I find myself already preparing for the next cough, cold or flu session, when I should just be enjoying this spell. I’m looking for complications which currently do not exist!
But seeing some of my fellow patients again reminded me what a fragile life I now lead. Some have become worse, despite their treatment but others have also finished successfully. However we all know that with the nature of not only the cancer we have, but the rejection problems we encounter, it will only be a matter of time before we face our next challenge.
One of my friends on the ward has been treated for 8 years, and is slowly also reducing his treatment. He was concerned that his benefit would be taken away, and would be unable to work again, at the age of 47 he felt he was finished financially. These issues are reality for many patients, including myself. Not just trying to stay alive, but trying to create some sort of life to live, with unreliable health as a constant companion. Another gentleman there was a builder, now he is unable to even walk and needs his wife to push him in a wheelchair. I can’t even begin to imagine what is going through his mind.
In that room there was an incredible range of emotions happening, and we have all had most of them at some time, how do we cope though? During every week I am communicating with many people affected by cancer, either face to face or via social media, and things can change for us all so quickly. On Monday I will be helping at the monthly Prostate Support Group at my local cancer centre. Some guys will be better than last month, others too sick to even attend.
Nothing that was talked about prior to my treatment could have prepared me for what cancer has done to my mind. Some people are affected more than others and differently of course, but there is no mistaking that psychologically and emotionally we are changed by a cancer diagnosis. On reflection in my own case, although the treatment was horrific for a long time, then complicated later, the pain has lessened, but in my head is where the chaos is. My struggle is to focus on the things I have, rather than the things I have lost.
You would have thought that after seven years I would be able to do that, but it seems I can’t! My life has been enriched in so many ways since cancer introduced itself, and I have many things to be thankful for, not least my ‘extra time.’ But even now I struggle to understand what has happened to me, I still feel that I am living someone else’s life.
This week I took time out to visit my ex business partner in the East End of London. So much happening and new ideas developing, which I would have been at the centre of. I felt I could still add a lot to things, but now, just the travelling exhausts me. Frustration was the emotion I left with, as I knew that was yet another thing I would never be able to do. As I deal with my own life and struggle frequently with these issues it is also difficult to see how we can solve this problem. Most physical issues have an answer, but these difficulties are unique for all.
I’m not convinced that drugs and counselling, are long term answers, and I am sure that we need to take into account our psychological and emotional wellbeing when talking to patients during their own journey. My experience has shown me that there is a silent majority out there doing the best they can to cope, but are struggling from day to day. The truth is there are currently not enough of the right resources available, and until we understand the problem correctly it will be impossible to work on a solution!
How do you or your friends and family deal with the psychological and emotional issues of cancer? Are you one of the lucky ones who has things in check now? Please feel free to share your thoughts and ideas here.