When Cancer treatment in hospital comes to an end, we want to get on with restoring our lives. So when daily visits to hospital finished, I thought I would get my life back.
BUT – no-one told me there always is another side which can make it difficult if not impossible to get your life back the way it was. No-one told me during treatment that about one in four of us will have long-term side effects from chemotherapy, hormone therapy (pills) and/or radiotherapy. Macmillan published a report in 2013 called “Cured – but at what cost” highlighting unknown and unexpected problems caused by Tamoxifen (just one of the Hormone Therapy treatments); saying these problems are common to many hormone therapy treatments, but by then it was too late.
These problems are common to many, and leave us with unexpected consequences. Today, doctors are more careful and look out for signs, and sometimes carry out tests to see if there might be consequences. I wasn’t told anything, but when I asked for help was told it was nothing to do with cancer drugs – doctors at The Royal Marsden Hospital tried to blame side effects on my age! Now I know that is untrue, but had a fight to prove it was the drugs that caused the problems.
Last week I was honoured to be invited by one of our major cancer charities to be part of a ‘think tank’ looking at the way we can be helped – more on this exciting project when it is ready!
Asking the ‘team’ to help us deal with consequences often isn’t easy.
The report highlighted what can happen, but missed the opportunity to suggest what could be done to treat side effects. So this was when I decided to write a website and include all the things I had learnt from helpful nurses and doctors (many abroad), and inexpensive to copy, and to highlight how easy and inexpensive I found it to get treatment at some of Europe’s top cancer centres..
NEVER did I imagine so many others would write and say they were having same problems; (see below). At first I thought all the comments were just friends having a laugh – but soon found they were genuine. So thanks, everyone, for the vote of confidence. Some mention alternative therapies; although I don’t believe in them myself, if they work for others I always have a look as one can learn all the time.
Dealing with complex problems
Those of us who had problems often reported staff were unhelpful and unsympathetic, When pointing out American research that warned us that side effects could manifest themselves years after we had finished treatment; and Cancer Helplines said they had lots of calls asking for help, I was dismissed as being too fond of using ‘Dr. Google’. and told there was nothing that could be done. This seemed to be the consensus across the British health service, although other countries acknowledge massive problems exist, and do something about treating them. Some of us pointed this out – forcefully – and there was a woeful attempt in 2008 to set up the National Cancer Survivorship Initiative (ncsi.org.uk)/ This was so ‘successful’ it was closed down in 2013 and a statement on their website said:
“the success of The National Cancer Survivorship Initiative, the Living With and Beyond Cancer (LWBC) Programme was set up in June 2014. It is a two year partnership between NHS England and Macmillan Cancer Support aimed at embedding NCSI priority findings and recommendations into mainstream NHS commissioning and service provision”. This has had such an impact that no-one seems to have heard of it. Have you?
What did come out of this was a Holistic Needs Assessment. Lovely little time-waster if you just have some minor problems, but patronising and unhelpful if your problems are major – and many are.
So readers based in UK have to work hard to find their own solutions; those of you who live in other countries, we envy you! We are willing to learn, so are happy to read about YOUR new initiatives.
Currently the NHS is in such trouble that funds to help treat cancer survivors just aren’t there, so we’ll get even less help. It is no good moaning about the fact we have the worst cancer care in Europe, we just need to realise we must get on with paying for it ourselves. Think of it as your payment to national health to bring your contribution up to what you would pay if you were a European.
But – for every ‘nasty’ that comes up, there is probably a treatment that has been trialled successfully in another country – one with a better post-cancer survival rate than ours. There are super products (developed after stringent testing and clinical trials) that help with side effects and make life easier and more fun. I write about them elsewhere on this website.
We know medical staff are overworked, and Cancer patients often feel they can’t bother busy staff to find solutions. The more I delved into survivorship issues and how to handle long-term side effects of drugs, the more I realised that drug side effects can cause the same basic problems, whatever cancer the drug was for. So on this site readers can look for help with handling side effects under various categories; e.g. skincare deals with the dry, itchy skin so many drugs produce, etc.
On this site you will find lots of possible solutions to many side effects, used in different hospitals and cancer centres in France, Germany, Australia, Austria, Italy, USA etc. Some can even be accessed on the NHS, or from organisations such as Cancer Charities.
I am not medically-qualified, but asked and asked questions of those who were – and found that the major American cancer hospitals and research centres are incredibly helpful with sharing information. European oncologists aren’t so Internet-savvy, but go out of their way to help.
Nice therapies are not just for fun – but can serve a very practical purpose. Using specially developed products and therapies such as massage, skin care, etc. not only help with side effects, but also aids long-term recovery and gives you a ‘feel good’ boost. Hope some of the information here works for you.
But before you try, ask advice from your medical team.
Sometimes Doctors don’t have time to help, and you can be made to feel sking awkward asking questions. Teenagers feel they must ‘get on with it’; older people are told “it’s your age”.Phooey!
If doctors and nurses haven’t time to give individual attention to you – you have to work things out for yourself. I found French Consultants reassuringly helpful when I went blind in one eye, then came out all over with bloody skin lesions, 3 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.. Because the French take time to help with side effects, I am sure that is why WHO rates French cancer treatment so highly.
On this website I mention lots of lovely things I was given in French, German and other European cancer centres (I had a wonderful job that took me around Europe, so took full advantage), plus research and medical information from Germany, USA, Australia etc. The same treatments and products are now becoming available all over the world and show that Having Fun can be part of cancer treatment.
So why bother?
Why not? If asking a few questions, using the internet or phone can get you relief from side effects – go for it. The trick is to ask around to find solutions for clearing up or making side effects tolerable; I found plenty, and many were fun. 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.
HAVING FUN AFTER CANCER was a fun quest for treatments helping me stay on the drugs. Who could object to having 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!
So I hope this website is helpful, whatever medicinal drugs you are on.
HOW TO USE THIS SITE
Choose a category (see column on right side of pages) for advice and possible solutions for problems with:
- Body Skin (arms, body and legs)
- Facial skin (what to do when drugs make us look old as the hills)
- Hands, Feet and Hair
- Products (yes, suppliers make money, but in return they really help)
Often the leaflets that come with the drugs will list possible side effects, then say “Ask your GP/doctor for advice on dealing with this”. Most GPs seem too busy to help us, although I do think it is time that the NHS paid them extra fees to handle cancer cases, as is done for diabetes, dementia. etc.
Europeans expect their doctors to deal with skin and other problems (sometimes British patients are too meek to ask for help!) So what worked for me when prescribed by doctors abroad may not work for you – but hey! even if something I tried didn’t work for me, it was fun trying it out! And as long as the product you are trying is made by a reputable company, it’s highly unlikely to contain poisons anywhere near as harmful as those in our drugs!
I did ask Andrew Lansley what we were doing to copy European care, so that our survival rates might improve. “Nothing” was the reply. This shows the sheer arrogance that we put up with in Britain, and I haven’t noticed any difference in Jeremy Hunt’s attitude, although all the wailing over Brexit makes me laugh. We didn’t consult with European hospitals when we were IN Europe so why are we making a fuss now that we are quitting?
Before your medical team turns up their nose, everything I mention on this site has
- been clinically trialled in France, USA, Australia or countries where post cancer treatment is superior to ours
- Or been approved by FDA (Food and drug agencies) of the above countries
- Or recommended as a treatment by charities such as Cancer Research UK, Macmillan etc. or offered as normal treatment to Europeans by their doctors
- Or available on NHS prescription
Although there are probably many herbs and alternative treatments that have helped some people, I believe that research is the best path for help, so put my trust in what medical teams had produced abroad. The only product that hasn’t had clinical trials will be chocolate – but I believe everyone deserves a treat – and that is mine!
And the next medic who smugly says “we are not allowed to recommend commercial products” (even though they are recommended by doctors in Europe) might make me guilty of assault. The drugs they recommend we take are made by some of the most commercially profitable companies in the world!
My side effects
95% of us suffer from side effects, but as a journalist I knew whom to ask for advice, and where to go.
So – if you have dry, itchy skin, peeling nails, straw hair, brillo pad face skin, cracked feet or any other skin problem – see details of treatment on this website.
Many of the products recommended to French and American cancer patients are now coming into chemists in Britain. We have to pay for them, but they work wonders on skin. Now Nurses tell me “you do have lovely skin”. No thanks to the NHS though.
Skincare IS important
What doctors don’t tell you (although some Nurses will) is that today’s drugs often produce horrible skin problems. Countries abroad often co-operate with their Cancer charities to produce targeted skincare. Some of the best that I use constantly are:
Living Nature which was developed in New Zealand with co-operation from their cancer authorities. Products are good, and it is relatively inexpensive – don’t know how they do it at the price.
La Roche Posay ia he French cancer skincare product, now launched in Britain; they knew that thousands of British women were already going on their website to order their products; now we can get same canceer skincare as the French.
IS Clinical had been developed in Washington Cancer Center. The cosmetic surgery industry in Britain is mostly private; they read results, and realised IS Clinical’s products would be excellent to help patients recovery from face lifts – so Harley Street knows all about the creams – we have to find out for ourselves.
So this website is for those of you who are fed up with doctors saying they can’t help and don’t know what to do about side effects. Become an ‘Expert Patient’ and tell them! Apologies if I often repeat myself – but I have written the articles they way that I found helpful – by repeating and analysing those phrases or things that explained how, where, when, what and why.
And HAVE FUN AFTER CANCER!
If you want to contact me email me at email@example.com
The contents of this website are not intended to replace professional medical advice. If you are ill, have a medical problem or question, please consult a doctor or physician..
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