Cancer treatment was a doddle.
With confidence in my surgeon, I didn’t see why I should worry.
But little did I know what would eventually happen
Or how I would find medical professionals had changed since I was a teenage; I spent a year in hospital after catching Polio and told I would never walk again. I was determined I WAS going to walk Everyone at Stanmore Orthopaedic Hospital helped me with my ambition to get back on my feet, and I walked out of there.
But, I wasn’t prepared for the attitude I encountered when side effects from cancer treatment kicked after I was put on the hormonal drug, Tamoxifen.
- I woke up blind in one eye (limited sight eventually came back)
- came out with bloody peeling skin and blisters all over
- I was changed to Aromasin, then Arimidex, and more side effects – even nastier.
- and years later late effects still crop up – no-one warned me this could happen
I expected to work WITH the team looking after me, but when I asked my Oncologist what I could do, I was shocked to be told “well, you are alive“. He didn’t know what treatment would help. No “try this” or any other suggestions.
This defeatist attitude seems to have permeated today’s NHS, but would never have been allowed by Sister at Stanmore. The once-superb NHS iservice seems to have crumbled, so I becomes dependent on the Internet to find out what other countries are doing. and copy,
World Health Organisation
This globallly-respectd organisation is the Public Health arm of the United Nations; it consistenrly places the UK way down in cancer survival rates.
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.
BUT – I am NOT medically qualified.
- What I write about are treatments I have learned about, carried out in hospitals or medical centres 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 profession. 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.
Sadly, scientists and medical professionals will tell you 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 – be prepared to ask questions
Doctors admit they HATE Patients such as us – but also admit those of us who ask questions and demand better treatment LIVE LONGER.
About me – Page 2
Luckily I knew Revd, David Brown, Chaplain at the Royal Marsden hospital. He reassured me that I was not alone; he heard the same comments from other patients who had same problems with side effects from drugs.
When I told him doctors had said that problems were “due to my age”, etc, he said this was nonsense, and to go to France. He recommended cancer centres there, where I was dealt with as a patient who presented with normal side effects which they were trained to deal with.
David had been on the Ethical Committee which approved Tamoxifen, so had all the statistics about how many suffered from side effects. He had been well-known in the cancer field, and often invited to speak at conferences, so was a wonderful source of information on what was happening abroad. I was very lucky to know him.
I started this website to tell others about treatments one can access in European and other hospitals – and how to copy these. I wanted to give back some of the marvelous care and attention I found – NOT give up!
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. And I wasn’t once put on expenive drugs or pills, but was treated with common-sense; which can be copied anywhere.
This website features what helped me, and how we can access what is provided in other countries. And as the products are often lovely skincare creams, and massage, this website had to be called HAVING FUN AFTER CANCER.
However, with all the cuts that are being foisted on the British NHS, I have started to write practical advice about how WE can ensure we get better care. In Britain medics are often too busy dealing with the basic disease, and have no time to help once you are off the treatment conveyor belt. It seems incredible in this day and age, but however intelligent and feisty you try to be, when faced with a doctor who denies that horrendous side effects you are experiencing are due to the drugs, you can feel you are going mad!
Instead, in a nasty about-face, the NHS tries to blame poor cancer survival rates on us – saying it is OUR fault that survival rates are worse than Europe, because we don’t take up screening and tests when we should.
- But in Dec. 2009 came word from the WHO (World Health Organisation) that we ARE doing what we should.
- We are taking up screening and having tests done – in fact WHO say we are one of most responsible nations in Europe.
- BUT … we still have one of worst post-cancer survival rates.
MY THEORY? I have been treated in other countries, and know that doctors in France, Germany etc., spend time working on drug side effects; treating side effects helps their patients stay on these drugs.
In complete contrast to how I was treated in Britain.
So I am convinced that one reason why we have poor post-cancer survival rates is because we find it difficult to have side effects treated, and aren’t helped to stay on hormonal drugs.
The NHS is constantly promising “Holistic treatment”; “Recovery programmes” ; “Treatment for long-term conditions” and other pious promises. But it is what Churchill called Jaw Jaw – you can’t access this – sorry.It’s all pie in the sky, but helpfully we should get this by 2025 !!!!!!!
What is even more worrying is that with so many powerful drugs being prescribed, doctors have little or no training in dealing with the side effects. Hence over 60% of us come off the drugs prescribed for us (according to NHS surveys), because we can’t handle these.
Action Plan for everyone
Doctors admit that those of us who ask questions and demand better treatment survive longer.
It’s not difficult, with so many excellent internet sites (don’t believe doctors who try and pooh pooh them – many sites are set up by the world’s top cancer hospitals in the US), and those products that you are prescribed in France and US can now be bought in British pharmacies. Many are mentioned in the different categories on HAVING FUN AFTER CANCER.
Breast Cancer Care say 74% of us look for information on the web, and many solutions are there – so get browsing!
But you MUST help yourself, and learn to be assertive when you don’t get what you know you need. We get the NHS we deserve as so many of us ‘don’t like to complain’. Well, it is our LIFE; our NHS, we pay for it – so make sure it gives you what you are entitled to.
Necessities rather than luxuries As I looked for help, I found out that old therapies such as massage were incredibly helpful. At Paul’s Cancer Support Centre in London they told me, “it is important to emphasise that, while services like massage and reflexology may seem like luxuries for people who are well, they are actually critical in reducing distress and increasing wellbeing for people with cancer”.
In France and Germany massage is frequently prescribed for the years patients are on hormonal drugs.
So – I was able to take advantage of some treatment in Europe, and this website gives information about what I found, the clinically-trialled products I was prescribed, and how and where we can get these in Britain. Good luck – follow me – HAVE FUN!
Prof. Sir Magdi Yakoub has said, ‘We in the medical profession…have to listen more to our patients”.
But how can a doctor have time to listen when you are scheduled for a ten minute appointment?