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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.
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
"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?
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.
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.