Verite Reily Collins writes about Cancer Side Effects

WHY WRITE THIS?

Cancer treatment in hospital does come to an end!  As a patient , I suddenly found there is light at the end of the tunnel.  When daily visits to hospital finished, I could start planning fun things again.

However, I discovered that hormonal drugs (the little pills they tell you to take every day for five years) can have nasty side effects:

95% of us will get these.

But – for every ‘nasty’ that comes up, there is probably a gorgeous treatment or super product that helps with side effects – these make life easier and more fun.  I call these Having Fun After Cancer.

We know medical staff are overworked.  Cancer patients often feel they can’t bother busy staff to find solutions.  Others can’t stand side effects and make the decision to stop taking the drugs that cause the problem.

DON’T DROP THE DRUGS

Treat your side effects as a way of finding out happy solutions for the problem. Don’t follow the advice given me by my Oncologist, who only offered “do you want to come off the drug?”

No – no – no.  I was looking for help with handling side effects – not throw away pills that would help prolong my life.  Writing about skincare, I knew there had to be solutions to help me to stay on the drugs.  It should be possible to get rid of the side effects they caused, let the drugs do their work and help me live longer.

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 and the USA. Some can be accessed on the NHS, or from organisations like Macmillan.

Remember, I am not medically-qualified, but asked and asked questions of those who were – and found some wonderful products to use, and fun things to do.

Statistics prove if we take these hormonal drugs for the duration of the course (usually around five years) we have a far better chance of living longer.  And recent research by Cancer Research UK  says the nastier side effects may prove the drugs are working better.

Even better news -  the nice therapies that are offered to us are not just for fun – but serve a very practical purpose.  They can help us stay on the drugs.   Hormonal drugs, such as Tamoxifen, Aromasin,  Arimidex, etc. are very strong.  But using specially-developed products and therapies such as massage,  skincare,  etc.  not only helps with side effects, but also enables you to stay on these life-extending drugs, and gives you a ‘feel good’ boost.

So I set up this website to give some fun ideas for zapping side effects, and to readers that yes, some of the problems caused by side effects can be with us for some time – but there are fun and comforting ways of coping – in other words HAVING FUN AFTER CANCER.   Hope some of them might work for you.

But before you try them out, ask advice from your medical team.

Tamoxifen

I was given the hormonal drug Tamoxifen and told, “take these pills for the next five years”. One week after starting, I woke up blind in one eye.  “I’ve never seen this before”, said Dr. 30 Second (my oncologist). “Er – shouldn’t I go and see someone?”  “IF you want to”, he told me.  So first stop was to find treatment, and if this happens to you look under ‘EYES’ under categories listed on the right hand side.

Sometimes Doctors don’t have time to help, and you can be made to feel ungrateful if you ask 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 a French Consultant, who was reassuringly helpful, listened to me and sorted things out after testing my eyes for possible Tamoxifen poisoning.  His verdict was my sight would return within two months – and it did.

Next!

A week later I woke up with bloody sheets and skin lesions popping out all over my body.  This time I tackled Disappearing Oncology Nurse to ask what I could do.  Peeling a few more layers off, she couldn’t give me any help either.  This time it was  THE Professor of Dermatology who said, “it’s your age”.  When I challenged him, he swept out of the consulting room.

So back to France, where doctors knew these lesions were a side effect of Tamoxifen, and what to do.  Because they take time to help with side effects, I am sure that is why the World Health Organisation (WHO) says they have the best post cancer survival rates in the world.

On this website I mention lots of lovely things I was given in French and German cancer centres, plus research and medical information from Germany, USA,  Australian etc. , and how the same treatments and products are now becoming available all over the world.

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 they 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.  And most had been clinically trialled or were recommended by the 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!

I was treated for Breast Cancer, but talking to others I find that although we all have different side effects, for cancer, heart problems, etc., anyone taking medicinal drugs probably finds they have similar problems.  Since starting this website I have heard from  others in 142 countries, on medicinal drugs – and experiencing side effects too.

So I hope this website is helpful, whatever medicinal drugs you are on.

I am NOT medically qualified, so relied on others to tell me what was

• Clinically trialled in France, USA, etc.
• Approved by FDA (Food and Drug Agencies) of Australia, USA and Europe
• Recommended by charities such as Macmillan etc.
• Or can be prescribed on NHS

However, before trying anything, ask advice of your doctor, oncologist or nurse.

Solutions

Choose a catergory (on right side of pages), click on your ‘problem area’ category and find 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, they make money, but in return they really help)

What helps

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”.   I suspect doctors in Britain are too busy with running a general practice;  although I do think it is time that the NHS paid them extra fees to handle cancer cases, as is done for diabetes, etc.  So that we get the same care and attention that is given to these side effects abroad.

French and other clinical trials are producing fantastic creams and lotions to help patients, and surely superior survival rates prove staying on drugs is one way to live longer?

According to the World Health Organisation, NHS, The Lancet, etc., France comes tops in the post cancer survival league.  Britain has one of the worst post-cancer survival rates in Europe  – on a par with those at the bottom (best statistics show us between 13th – 17th, depending on the cancer).

But  Europeans expect their doctors to deal with skin and other problem (sometimes British patients are too meek!) So have fun trying out the products prescribed by their doctors, which are available around the world.

Remember – what worked for me may not work for you – but hey!  even if something I tried didn’t work for me, it was fun trying it out!

Writing about skincare, I knew there had to be solutions for skin problems at least to help me to stay on the drugs.  So it should be possible to get rid of other side effects, too – by doing some research – and let the drugs do their work and help me live longer.

Dept. Health

Yet when I asked our  Dept. of Health what plans they had to study what was happening in Europe, they replied “Nothing.”

This shows the sheer arrogance that we put up with in Britain, and when eminent medics say patients’ concerns must be addressed, they should be listened to.

So I followed Kylie Minogue, Marianne Faithfull and wives of eminent NHS surgeons and went to France and Germany to find out what could be done about cancer side effect problems.  And the answer is:  LOTS!

This website is all about dealing with side effects, or as I found out:  Having Fun with the lovely treatments and products that European women are given as part of their recovery path.

So 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. and 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.

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.  What are the drugs they recommend we take, if not commercial?

My side effects

95% of us suffer from side effects. I was blind in one eye (for two months), and had bloody, peeling skin lesions all over my body,but had fun finding out what could be done.  I was lucky.  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 from the drugs, don’t come off them – copy others abroad  – see the details 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 my sight is restored, and Nurses say “you do have lovely skin”.  No thanks to the NHS though.

NASTY, not NICE

NICE stands for National Institute for Health and Clinical Excellence.  Theoretically NICE are there to protect us from being given drugs that don’t work. BUT -  I fail to see why they have to waste our money, trialling drugs again that have already gone through trials in Europe – where cancer survival is far better than ours.

Talk about re-inventing the wheel.  But of course they do employ a lot of administrators, sitting in expensive offices in Central London.

This I couldn’t understand. Until a recent Daily Mail front page spilt the beans, saying NICE spent more on PR than on researching new drugs.  According to the Mail, what NICE spend on PR would have paid for 200 kidney patients to receive the drugs they are currently denied.

We are in the EU, so why doesn’t NICE take advantage of their research?  Copy what has been discovered. Then approval for drugs would be up to Europe’s time scale, and their skincare products could be prescribed in Britain, without the need for expensive, duplicate clinical trials here.  Most skincare companies are reluctant to spend millions on just getting clinical approval in Britain, when their products are already clinically trialled in other countries.  When La Roche Posay launched in Britain, they knew that thousands of British women were already going on their website to order their products – so why bother about NICE when there was a ready market?

IS Clinical had been developed in Washington Cancer Center – so quite rightly thought that was good enough.  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 what next?

Our doctors and nurses are overworked. It’s not their fault if they don’t have time to read up on all the new advances in Cancer treatment. But if we get nasty side effects from hormonal drugs (those we are on for five years), the way to survive is not to come off them – but learn how to deal with them as they do in other countries. That way we survive longer.

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 veriteatgreenbee.net

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..