‘Cancer Blog of the Year’
Prof. Karol Sikora, the cancer guru, calls
the NHS Appointments system.
“the last bastion of Communism in the Western world“:
Cancer Care should have been a doddle; after all, I had spent a year in Stanmore Orthopaedic Hospital with Polio, where everyone helped me get back on my feet, so I walked out of there.
I expected the same “let’s work together to beat this” attitude when it came to overcoming cancer. But this time, I wasn’t prepared for today’s NHS Conveyor Belt treatment: i.e. the ‘clinic’ system where instead of seeing ‘your’ specialist you could see anyone.
And the unhelpful ‘brushing aside attitude’ when side effects from cancer treatment kicked in. Today, TLC seems non-existent. When I came out with a rash all over my elbow – painful and unsightly – plus little itchy red spots, I naturally phoned for an appointment to see the wonderful dermatologist I am under.
Yes, I could see the doctor – in three months.
But what do I do in the meantime? And suppose the rash has cleared up by then?
Down the telephone line came the unspoken suggestion that it was up to me to go privately and see the dermatologist before the rash became a problem. That was the best the NHS could offer; just like in the old days under Communism in Eastern Europe. Pay up or shut up.
Have you noticed more and more that the NHS is trying to encourage us to go privately.- again back to the Communist system.
See more of Sikora’s sage sayings under https://aftercancers.com/2016/05/karol-sikoras-tips-on-dealing-with-the-nhs/
After I was put on this hormonal drug
- I woke up blind in one eye (limited sight eventually came back)
Came out with bloody peeling skin and blisters all over – yet the hospital denied that these were caused by Tamoxifen.
- I was changed to Aromasin, then Arimidex, and had more side effects – even nastier..But I was still told “you are the only patient who has these problems.
Years after, late effects still crop up
- no-one warned me of side effects that might happen.
- I expected to work WITH the team looking after me, but was shocked to be told by my Surgeon, “well, you are alive” and he didn’t know what treatment would help.
This defeatist attitude seems to have permeated today’s NHS, but would never have been allowed by Sister at Stanmore. The once-superb NHS service seems to have crumbled, but I was incredibly lucky that my dogs had made friends with Nigel, the dog belonging to Rev. David Brown, Senior Chaplain at the Royal Marsden Hospital. He had been on the Ethical Committee that originally approved Tamoxifen, and told me my side effects had been well-reported, particularly amongst European and American oncologists.
Finally, Macmillan has published “Cured – but at what cost“, and when I read this I realised I was NOT the only person complaining of side effects from drugs. Apparently 25% of cancer patients get them to a lesser or greater extent.
It’s a sad reflection on how today’s NHS has been left behind; so Britain has some of worst post-cancer survival rates – bottom of the European league for most cancers. (National Audit Office, World Health Organisation, etc.)
David’s network of contacts was immense; I would report a side effect, and he would say “you should go and see So-and-so – they are the experts”. As my job took me all over Europe, I was able to tap into the best treatment for whatever side effect was hitting me, and consulted experts in cancer drug side effects in Austria, France, Germany, Italy and Switzerland. I was very lucky to be able to access these experts, and the more I travelled the more I realised our post cancer care is way behind other countries. Sad.
Today, I can’t travel so easily, so am learning to dig out those medics in London who are intrigued and interested in helping survivors who have long term side effects .
World Health Organisation (WHO)
This organisation is the Public Health arm of the United Nations, and places the UK way down at the bottom of European cancer survival rates: 25th out of 27 !!! Shocking!.
So, determined to overcome the often-frightening long term side effects from cancer treatment, I set up this website to tell others what I found worked for me.
Warning! I am NOT medically qualified.
- I write about treatments I have learned about, are carried out in hospitals or medical centres, sometimes in other countries with better post-cancer survival rates than in UK.
- Products that have been approved by authorities such as cancer societies in other countries – many have undergone Clinical trials.
- Or what has been recommended to me by a medical professional, by helpful doctors and nurses in Britain and other countries.
Macmillan’s report: Cured – but at what cost? says about 25% of those being treated for cancer will need on-going treatment. But no mention of what they are doing to ensure that the NHS acknowledges our problems, or lobbies for improvement in our care.
In Britain, we have the research organisation CANCER RESEARCH UK (CRUK).
This is research organisation is highly-respected all over the world, and known as one of best. But their scientists and medical professionals say that the chains of communication out from CRUK fall down, and we in UK don’t get the benefits we should. Add to this the arrogance exhibited by medics, and our treatment is woefully lacking.
So I hope that this website will help you realise you are not being demanding if you think there are things you can do to handle long-term side effects.
You can take charge – and start asking questions
Doctors admit those of us who ask questions and demand better treatment LIVE LONGER.
I am sure our woeful survival statistics would improve if NHS doctors copied some of the treatment available to cancer patients in Europe – giving us the clinically-trialled products and treatments that are offered there to help with side effects. A recent report said that Europeans probably received less drugs, but those they were given were more up-to-date.
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