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Be your own champion
Practical Tips not Pity
Livestrong, the American cancer charity, says “we believe in information – not pity." This was exactly what I wanted when I got cancer. I did not want “poor you” comments. Neither did I want advice on eating miracle foods, nor alternative treatments.
What I did want was sensible, down-to-earth medically-approved advice based on clinical trials and scientific evidence – and understanding and help for what my body was going through, especially handling poisons contained in cancer drugs.
Strangely, help was difficult to obtain. All the charity adverts on TV tell us ”we are there for you,” but cancer charities in Britain tend to follow the NHS line, and this service is one of worst in Europe for dealing with cancer issues. Every major survey of European post-cancer survival rates places UK near the bottom of table, but try to find out what is happening in America or Europe, and you come up against a brick wall. Sadly, just because a product has been developed in cancer hospitals abroad, doesn’t mean that NICE will approve it; companies have to pay a huge amount for their approval. Meanwhile, many products have been approved in major hospitals abroad, without having to pay NICE. Since they have better survival rates than the UK, they are obviously doing something right.
Abandoned After Treatment
Once hospital treatment is over, patients often talk of feeling ‘abandoned’, and we can find it difficult to obtain information about where to find medically-approved help for the many long-term drug side effects, although researchers now tell us it can take years for these to develop.
When I had polio I discussed my treatment with my consultant and nurses, asking questions and evaluating possible courses of action. But that was then, when the NHS was ‘young’ and under Matron’s wise guidance. These were the days before ‘outcomes’, MDTs, tick boxes and computers – when the Patient was at the heart of treatment; not made to feel we were on a production line, to be abandoned once they reached going-home time.
Instead, so much of what we are offered today is pity. Getting practical, solid facts to make an informed decision can be difficult.
Sometimes doctors don’t have time to help, and you can be made to feel awkward asking questions. Teenagers feel they must ‘get on with it’; older people are told: “it’s your age”. I found there was an impenetrable barrier, with medics unable to allocate enough time to discuss options.
To all this, I say phooey!
If doctors and nurses haven’t time to give individual attention to you – you have to work things out for yourself. Asking a few questions, using the internet or phone can get you relief from long term effects of cancer – so go for it.
The trick is to ask around to find solutions for clearing up or making side effects tolerable; I found plenty. Using my brain cells (even though some doctors seem to think we lose them with cancer) and lots of research here and in cancer centres abroad, I found lovely products and therapies, particularly for skin problems, which had been clinically trialled or were recommended by hospitals – so they weren’t untested.
Personally, I found French consultants reassuringly helpful when I went blind in one eye, then came out all over with bloody skin lesions, three days after starting on Tamoxifen. They listened, and sorted things out, where British oncologists had produced excuses from “I’ve never seen this before,” to “it’s your age!’
No Frenchman would dare be so dismissive, and thanks to them I was helped – and have written about their treatments. The French take time to help with side effects, I am sure that is why WHO rates French cancer treatment so highly.
And actually I found most of the things I tried were fun! It became an enjoyable quest for treatments helping me stay on the drugs. Who could object to having a massage to relieve fatigue, or being handed a jar of a gorgeous skin cream and being told “use this twice a day for your skin”? Not me!
I would encourage you to try things – but of course always ask your GP, oncologist or nurse specialist.
Verite Huguenot blogs on https://aftercancers.com sharing her experiences of life after breast cancer and tips for long term side effects.
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Just to add to the above, if anyone lives near Oxford, on April 12th there is a Wellness Day devoted to giving information and help about problems we encounter after cancer treatment. It is at the Village Hall, Queen Street, Dorchester-on-Thames OX1 7HR 11 am - 4 pm. Free see more on aftercancers.com/categories/a-wellness-day