This is the story of the journey through the "breast cancer experience" of one woman, Sandra Lovegrove, as put together by me, her husband Roger. It is told principally through her poetry, written under the pseudonym "JPoet", and emails as written at the time. It is not a happy tale, but it is a truthful tale.
Sandra's view was that is too easy to write about the cancer experience in a very positive way, full of reassurance and platitudes. Indeed, there seems to be a philosophy in some quarters that this is the only way to write, and that to describe the situation in any other way is to be avoided as being too dispiriting. But this can make patients feel isolated and exceptional because their experiences and feelings do not match what they are reading or hearing. It can also mislead non-sufferers, especially carers and family, into not fully understanding what having cancer can be like; what it feels like, not just physically but also emotionally. Worst of all, it can cause people to expect the best and plan for the best when they should perhaps expect the best but plan for the worst.
The sense of frustration caused by this lack of reality and overindulgence in platitudes is neatly summed up by two messages posted on one of the breast cancer forums which read:-
Do you think they will get down to the real real-life stuff such as:
"My chemo constipation nightmare"
"I haven't had sex for a year thanks to bc"
"If someone tells me to be positive I'll scream"
"Steroids turned me into a big fat blob"
Or are there some things that are just off limits?
Claire
and
I'm in the camp that finds calls to be positive, irritating at best and potentially harmful at worst. Harmful because unthinking calls to 'be positive', like calls to 'fight', put huge pressure on people at a time when they have enough to deal with. I also deplore the huge industry built around false messages of hope.
Jane
By addressing her own true feelings, Sandra's work was intended to unite sufferers and non-sufferers into a truer understanding of what they are going though. It is not predictive, saying this will happen to you, or you will feel like this: no two people have the same experience. It says that if you are feeling like this then you are not as unusual, not as alone, as you might think by reading all the platitudes, all those calls to be positive.
Her poetry is best viewed as being a pick 'n' mix. Perhaps none of the things she experienced will be relevant to you; perhaps they all will be. A more likely scenario is that some of them will be but some will not. Just pick those poems (if any) which you can relate to at the time.
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on 14 November 2006