Reading about the fantastic results of the TAILORx trials, announced at the ASCO Conference in Chicago. Over 30,000 of the world’s top oncologists gather here annually, and this year was buzzing with good news – for some, as the announcement came that chemotherapy might not be necessary for many in the future.  Me – I am pleased for those who will no longer have to face this gruelling regime,BUT I can’t help hoping that this announcement doesn’t herald yet another excuse for the NHS to abandon some of us.

I remember reading a similar ground-breaking announcement lying paralysed with Polio in Stanmore hospital: Sslk had just discovered a vaccine to prevent this disease.  The vaccine had come too late for those of us in that ward.  We were pleased that others would be safe, but little did we realise that one day the NHS would abandon us.  I just hope those of us with long-term side effects from cancer drugs aren’t dumped in a similar fashion.

Having an op to get rid of a cancer tumour is not the end for about 25% of us;  the consequences of that tumour can be a life-time sentence.  We have to  ensure we get proper care for debilitating conditions from side effects of chemo and hormone therapies.   I try and make light of walking as if I were drunk (from neuropathy), swollen legs (lymphoedema) heart problems, rough skin, fatigue, nausea and a few more long-term conditions that I ended up with.  Friends assume that once you come out of hospital you’ve beaten ‘it’.  You can’t blame them, but I do blame the GPs and nurses who think the same way.

Long term side effects from cancer treatment can live on in our bodies for the rest of our lives, similar to polio’s legacy. Recently the penny-pinching NHS decided that it can ‘forget’ about polio survivors and the care we still need need, and first I knew of this was when NHS Choices deleted mention of long-term care we require; now I am having to fight for care.  After five months wait I finally saw an eminent polio doctor in Oxford last week, who apologised for delay but told me the hospital administrators had said not to see me as  “the NHS wasn’t dealing with polio problems any more”.  Instead they are concentrating on PPS (Post Polio Syndrome), but this only affects some of us – the rest will have to fight for what we need.  Luckily the doctor is one of the ‘old’ school and told them to get lost!  And bless him, when I left he told me “I will see you again in six months” after arranging for physio I need, but NHS has been trying to forget.

Let’s hope the NHS doesn’t think the announcement that chemo won’t be needed for many doesn’t mean we will have to fight for the long term care we need after cancer.


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