Cancer support = survivor???

Why is cancer support only about being a survivor? I recently contacted a local cancer trust to enquire about retreats that they now run not far from where I live. Regrettably I do not feel that I would be welcome at the retreat because the focus will be life ‘after’ cancer because they expect those taking part to be four to six months post treatment. For me, barring a miracle, there is only death after cancer. The whole ‘survivor’ industry that has grown up around cancer in any form, but most oppressively with breast cancer, excludes those that should be the focus. Money is raised on the grounds of the number of people who die of cancer and yet 97% of the research funding for breast cancer goes to early stage breast cancer and 3% to Metastatic Breast Cancer.

I live in a Twilight Zone. It is the space between being a survivor and being at the end of life. The only place I can get support is from my local Hospice. Over the last few months they have really made me feel as though I am fully supported, physically, medically and psychologically, but there doesn’t seem to be anywhere else to go. The Hospice movement is wrongly thought of as being solely about the end of life, but in reality it is there to enhance the life of a person with a life threatening disease (and not just cancer), but naturally those most at need are those at the end of life who require the most intense support and I know that their immediate support for me can only be temporary. The Twilight Zone is also the space between being able to work fully and live a relatively normal life. It is the space between being able to earn a living and have a fulfilling life, and where work becomes such a negative and so draining that it is ruining my Quality Of Life … that all important aspect of living with incurable cancer.

In the UK changes to the rules about disability benefits mean that many can’t access this support, and if we do we are made to feel guilty, and a drain on the economy. We are an easy target. High profile cases of people claiming the full Disability Living Allowance have got a lot of coverage in the media because some of those in receipt have been found to be well enough to referee a football match etc. or run a marathon. It has been made to seem that anyone who tries to claim this allowance is a scrounger. The likelihood that I will get to retire on my state pension is astronomically small because I will have to wait at least another 13 years. Even so, at the rate things are going, the retirement age may have been raised again for the state pension. I don’t want to be a drain on anyone; I don’t want to be a burden. But support is interpreted as being all about survivorship. It is all about life after treatment. I feel as though I have gone to the ‘dark side’ of the Twilight Zone; into the Land Of The Living Dead. Is it wrong for us to expect some support and understanding to help us maintain a worthwhile Quality Of Life for as long as possible? Those who face the possibility of life after treatment can get support, but what about those who face death after treatment? We should just keep quiet and not upset the survivors with the reality that where we go, they may follow.

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