About me

Is this the reason why we have such bad post cancer survival rates in Britain compared with Europe?

The word ‘cancer’ can strike fear in to anyone’s mind, but I found Cancer treatment was a doddle.   I had confidence in my surgeon, Mr. Gui, so I didn’t see why I should worry.

Until ……….  I was put on the hormonal drug, Tamoxifen. I went blind in one eye, then came out with bloody peeling skin and blisters all over.  Don’t worry, there are recognised medical ways of dealing with these, and I am fine now – but the indifference with which my symptoms were regarded was incredible;  one of my oncologists even said, “do you want to come off the drug?”

So I started this website to tell others about treatments one can access in European hospitals – and as Europe has better post-cancer survival rates than we do, we should copy these.

I started this website because I felt I wanted to give back some of the marvellous care and attention I found – NOT give up!

And I am sure that if NHS doctors copied some of the treatment given to cancer patients in Europe – giving us the clinically-trialled products and treatments that are offered there to help with side effects -  our survival rates would improve.

This website features what helped me in Europe, and how we can access what is provided there. And as the products are often lovely skincare creams, and massage, this website had to be called HAVING FUN AFTER CANCER.

The British health service, both private and NHS, can fall down with help in handling drug side effects.   In Britain medics are 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 feel like giving up.  Are you 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 that we ARE doing what we should.
• We are taking up screening and having tests done – in fact we are one of most responsible nations in Europe.
• BUT … we still have one of worst post-cancer survival rates in Europe, only ahead of the Czech Republic for some cancers.

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.

What is even more worrying is that 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 side effects.

The good news is this problem is at last being addressed.  There is a Cancer Survival Strategy plan – but it’s not due to report until 2012 !!!!  Just hang in there!

Don’t weep!   Doctors admit that those of us who ask questions and demand better treatment survive longer.  You ARE going to beat this.    It’s not difficult, with so many excellent internet sites (don’t believe doctors who try and pooh pooh them – these sites are set up by the world’s top cancer hospitals in 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 – get browsing!

Necessities rather than luxuries As I looked for help, I found out that old therapies such as massage were incredibly helpful. At the Paul D’Auria Cancer Support Centre 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 Britain we don’t pay enough attention to Complementary Therapies (NOT Alternative – there is a difference), yet in Europe they are used as part of regular cancer treatment.

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!

Background – or why this website happened

It’s all been very satisfactory, hasn’t it?” beamed Dr. 30 Second, when I went for my check-up at the end of radiotherapy treatment. He nearly fell off his chair when I spat back “NO!” He had given me no help with dealing with Tamoxifen side effects – so I told him that I had been very disappointed in the standard of care, and we parted.

Having Fun After Cancer is about what happened next, and overcoming side effects caused by these hopefully effective but very strong drugs. I hate those “how I suffered” books – but if you are told “I’ve never seen this before”, by medics, print out this page with my good wishes and shove it under their noses.

Currently, the NHS’s own research says more than 60% of us are non-compliant. This means that we decide to come off the drugs, either telling our medical team, or sometimes just quietly throwing away the pills. This is wasteful – both for ourselves, and also of NHS resources.

The start

At first I meekly accepted that my symptoms might not even be caused by the drug; perhaps they were caused by an allergy to something completely different? Until I asked Revd. David Brown, The Royal Marsden’s Senior Chaplain at the time, who had kept all the notes from the Ethical Committee he was on that approved Tamoxifen. Each time I phoned about a symptom, he would look it up, and say yes, it was documented as a side effect, and even give me the percentage who had reported this effect during trials.

So much for the doctors saying they had never heard/seen my symptoms before.

When I started this website, fellow patients contacted me to say they had had the same side effects. And yes, the doctors had tried to deny they were caused by cancer drugs.

Cancer treatment doesn’t make us lose brain cells

So why on earth do doctors think we are so stupid we will believe it when they deny side effects that are presented to them? Do they suffer from collective amnesia and forget the papers they read about clinical trials? We don’t lose our brains cells as a result of cancer – so I objected to my concerns being brushed aside.

Helpful doctors admit that colleagues are arrogant; but sometimes I feel it is because they are so over-worked they don’t have time to deal with the paper-work and us. Something has to give!

SIDE EFFECTS

So off I went and found so much that really helps:

• treatments and therapies (see under massage)
• products that restored my skin – look under: Face, Body skin, Hero Products, Hair, Hands and Feet, etc.

Anne-Marie had dreadful hot flushes; her doctor didn’t do anything to help until one day during an examination she had a flush – and sweat poured off her in rivers. That made him sit up and say “I never realised it was so bad”.

Why? What’s  wrong with listening to patients?

Eventually I got the message that I had to find my own solutions. Medics in Britain just don’t have time to treat problems – only to deal with the primary cause.  With 10 minute appointments (doctors are pressing for time to be increased to 15 minutes, but the money isn’t there to pay for extra doctors) and only 6 QOFs (points) allocated for GP’s payment each time they see us (diabetes, dementia, etc. get up to 93 QOFs) it is easy to see why we are getting ignored.

And the Chaplain admitted “doctors come to me and say they don’t know how to talk to patients”. But there are really, really helpful medics out there – it just takes time to find them!

• I met lovely people like Dr. Paul Clayton who agreed some doctors in Britain are ‘barbarians’, and I could quote him!
• I tried the Internet, and found America seemed to have the most helpful and accurate website information. But watch out that you look at official sites from approved charities or their excellent cancer hospitals.
• There are some weird sites, selling ‘cures’, and other money-making products that do nothing for us, and can even be dangerous if you follow them.  Go to About/Home/Our mission or similar headings to find out if they are official/medically approved, or someone with an axe to grind.  NB. If they ask for money avoid the site.
• I contacted cancer helplines, but eventually gave up when the nurses would tell me “you seem to know more about this than we do”.
• I met one doctor, more honest than the rest, who said “you must realise these pills are like having mini-chemo for five years“.

I hope you are one of the lucky ones who DON’T have these side effects – but if you do, you are not alone, however many times medics tell you “I’ve never seen this before”. Maybe they should go to SpecSavers?

EUROPEAN SOLUTIONS

When I had to go travel to Europe with my job, I thought one visits Museums to help improve our minds, so why not visit the local cancer centre to improve our health?

Asking local tourist boards if they had a centre that treated post cancer patients produced a stream of information. Most Tourist Boards are delighted to promote anything good in their region. They were proud to book me into the local cancer centre, introduced me to top medics who were incredibly helpful, and I learnt why Europe generally has a far better post cancer survival rate. So don’t do what I say – copy what I did!

Sometimes you can get treatment paid under the EHIC rules;  sometimes doctors thought I was an ex-pat so treated me free, and sometimes I had to pay.  But I found charges were below what I would have paid for a private consultation in Britain.

WARNING! As I write about skincare I realise that not all chemicals are bad, and not all so-called ‘pure’ products are that. But anything I mention has either

• been Clinically trialled,
• or can be prescribed on the NHS,
• as far as I know is genuine about being pure or even organic, with a minimum of chemicals – but not all chemicals are bad.  Parabens are used in many medical procedures.
• and/or has passed the US Food and Drug Administration tests (or similar ones in places like Australia, where they have excellent post-cancer care).
• Or is a treatment approved by a charity such as Macmillan, Cancer Research UK, etc.

I am NOT medically-qualified, and although I have been very careful only to mention products and treatments that have been approved in some fashion, there is always the chance that a product that works extremely well for others, might not suit you, especially if you are on a cocktail of drugs.

1. So take a list of ingredients of any product to your Oncology Nurse to look at
2. Ask skincare Consultants to give you a patch test.

Then try the products, therapies and treatments – AND HAVE FUN!