Action Plan for all

Why this website happened

 

Dealing with the revolving door

When it hits you in the back

 

“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 prescribed Tamoxifen, then given me no help with dealing with side effects, which included temporary blindness  – 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.

Many cancer patients find once hospital treatment is over, they are ‘abandoned’, and have to work things out for themselves.  If this happens to you, hopefully this website will give you ideas and information of where to find help, and give examples of what others have found out.

In other countries doctors have more time to deal with side effects, even those countries with State organised treatment, and this can make a difference.

Truthful medics admit that side effects are a problem – but main problem here in Britain is finding medical time to deal with these. Things work better in other countries, so I have included examples when treated in other countries.

Finding the ‘Double Whammy’

You get Cancer.  Try to follow and do what Doctors tell you.  Then you find the drugs you have been prescribed, are making you ill.

At first I believed the doctors, and meekly accepted that my symptoms might not even be caused by  drugs.  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.  One wonders if they ever read up clinical trials for the drugs they dish out to us.  Recently the British cancer charity, Macmillan, produced a report, Cured – but at what cost – which stated that 25% of us who had taken Tamoxifen had major long term side effects from taking this drug.

Now, studies by the respected American research centers, such as MD Anderson,

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

  • I met one doctor, more honest than the rest, who said “you must realise these pills are like having mini-chemo for five years“.

So off I went and found so much that really helps, which I have postd undeer suitable Categories (on right hand column):

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

A friend had dreadful hot flushes; her doctor didn’t do anything to help until one day during an examination she had an episode – and sweat poured off her in rivers. That made her doctor sit up and say “I never realised it was so bad”.  But why didn’t he listen to her before?

What’s  wrong with listening to patients?

Ever since Andrew Lansley (ex-British Minister of Health) said that we had to be at centre of treatment, and listened to, there has been a big industry to teaching the NHS all about ‘involving patients in their care’.  This idea makes huge profits for the companies running conferences attended by NHS staff, on expenses, at around £500 a day plus – but they return home and carry on as before.

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 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  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 the site asks for money –  it’s probably best avoided
  • Cancer helplines are getting better, and can offer good advice.

EUROPEAN SOLUTIONS

WhO (World Health Organisation), David Cameron and others all agree (statistics back them up) that cancer treatment is better in Europe.  I travel to Europe with my job, and thought “we visit Museums to help improve our minds, so why not visit the local cancer centre to improve our health?”

Asking European tourist boards if they had a centre that treated post cancer patients were proud to book me into the local cancer centre,and introduced me to top medics who produced a stream of information. Most Tourist Boards are delighted to promote anything in their region, provided enquirers realise they have to pay;  although European hospitals generally charge far less than the NHS. They are incredibly helpful, and I learnt why Europe generally has a far better post cancer survival rate.

Sometimes you can get treatment abroad paid under the EHIC rules.  But if you have to pay, often charges are below what we would have paid for a private consultation in Britain.

e.g. In UK the NHS charge my insurers £120 for a DEXA scan (for Osteoporosis).  In Italy I was  charged €50 (about £40).  It just shows the way the NHS could be ripping off private insurers 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,
  • 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.
  • 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 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!


All writing on this site is copyright of the author,  and all photos are copyright of the photographer. You may not copy or otherwise reproduce any of this material without prior written permission. All rights reserved.

Contact Author:  verite@greenbee.net

 

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