The first 6 months of 2010 was filled with appointments – surgery followed by chemotherapy and then radiotherapy. Then nothing – my safety net was pulled from under me after my last radiotherapy session and I was left to “get on with my life”. Had it not been for a wonderful lady who became a good friend, my wonderful Macmillan nurse Morag, I would have sunk in the depths of depression. She was my rock for 4½ years until she left the area.
If you had told me back at the beginning of 2010 that my health would be as bad as it is now then I would probably have not believed you. After all, the information I had read online said that I had a “good” cancer and one of the “best types” of cancer to get. Apparently womb cancer had good outcomes and the recovery statistics were very good. So what had I got to be worried about? Have the treatment and then get back to “normal” and live the rest of my life to the full.
If only it was that easy. Not being given full and accurate information about all possible side effects meant that I was in effect being misled and that means that I was not able to make an informed decision.
My health has got progressively worse over the past few years with various side effects, some of them inter-linked, having a long term impact of my quality of life. The bowel adhesions that cause me to have alternating constipation and diarrhoea; the epi gastric hernia that they won’t repair because of the bowel adhesions; the lymphoedema in both legs that limit my ability to walk; the underactive thyroid; the psoriasis; the insomnia and serious fatigue; the cognitive and memory issues; the depression that sweeps over me on a regular basis. All this and more means that the last 7 years have been a downward spiral – a black hole of negativity and depression that I find hard to get out of.
Being told by my GP to just “learn to live with it” doesn’t help. Feeling abandoned and forgotten about by the system doesn’t help. Having people think that just because I am no longer having cancer treatment must mean that I am ok doesn’t help. Trying to explain to people about the issues I face on a daily basis and being told “I hope you feel better soon” doesn’t help.
The lack of long term support for cancer patients means that there are many like me around the country, struggling to get through each day. Living with chronic side effects that drastically impact on our quality of life. But hey, at least we no longer have cancer, right? We should be thankful for that, shouldn’t we?
Many cancer patients are able to move on and put their cancer diagnosis behind them to some extent; it may take some time but they do move on and continue to live a fulfilling life. Some of us however will never be able to do that.
I regret having the treatment I had – had I known then what I know now I would never have agreed to it. I wish I had taken my chances. At least I might have had some semblance of a life.
I want all cancer patients to be given the full facts about all the possible side effects of treatment. That includes emotional and psychological ones. I want patients to ask questions and I want Oncologists to be honest with their patients. Stop treating patients as numbers on a chart and start treating us as people who have lives and families. Stop treating patients with contempt when they say they want to try an alternative approach or want to wait before starting treatment.
We deserve so much more than we are getting at the moment.
xx Kaz xx