Sunday, 1 November 2009

Nightmare of ductal carcinoma

Not sleeping as PET scan looms. I’ve read articles in the “Sunday Times” and “Sunday Telegraph” which make clear ductile carcinoma in situ can lie dormant for years and perhaps half of them never develop into breast cancer yet hundreds of women have mastectomies which could be unnecessary. If I had not been operated on or subsequently developed MRSA from the sequence of operations which followed my diagnosis would I be suffering from lymphoma today?

As far as I was concerned the late 1990s was a very difficult period. The operation itself was absolute mutilation – a 19th century solution to a 21st century diagnosis. From then on I found it difficult to get work as I had a history of “cancer”. I remember arguing with my new GP as to whether it really was cancer and if I had to put it down as such on my health form for prospective employers – I always opted for ductal carcinoma in situ. My life insurance doubled overnight and trying to find travel insurance became a financial nightmare.

I did not opt for a reconstruction immediately as the mastectomy itself was difficult for my family to cope with and this would have entailed very long surgery. As it was I lost a lot of blood. Each morning we were got out of bed to have our breakfast in another room so the surgeon could do the ward round without the bother of encountering any patients. The prosthesis was awful so on my return home I requested reconstructive surgery which I understood would take place about one year after the original operation.

At the time the only work I could get was adult education short-term contracts which ran from late September to May when the examinations took place. I therefore requested that I have an operation in May, June, July, August or September as I would have no sick pay. I could hardly take on an examination course in all conscience and then say that I would be off work for six weeks. It would not be fair to students. I made this very clear and regularly enquired where I was on the list.

Then I had a very special offer. I could have my reconstructive surgery in June (12 months after my mastectomy) PROVIDED I AGREED TO BE TELEVISED – I believe it was for Channel 4. As my children were teenagers I knew this would be horribly embarrassing for them and refused. I then asked when my surgery would be if I couldn’t have the operation in June. I was told October – just at the start of the academic year for adult education. If I behaved ethically and did not take on any work, then I would be deprived of all my classes for that whole year and there was no guarantee that the Adult Education Centres would then come back to me the following year.

I explained that October was impossible and if necessary I would wait until the following summer. At that point I was told if I did not accept either of these offers my name would be put to the bottom of the list i.e. I would not be operated on at all! From then on the nightmare got worse …..

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