We don’t have to Fight CancerTwo girls fighting on a white background

Let’s be sensible about follow-up care when treatment finishes

Sitting across the desk from the doctor, I was searching for the right words to tell him that if he had read my notes, he would realise that King’s College Hospital had already done tests which negated what he was proposing.  Think quickly;  how could I save his face and get him to refer me to someone who had actually done research into neuropathy?

When we are told we have to ‘fight’ cancer, did anyone explain that this may mean we have to search out our own treatment plan, and the prepared to fight to get what we need?  Especially with the NHS surreptitiously cutting services?

I often have to ‘fight’ to get the appropriate treatment to survive comfortably.  We have to pick our way carefully and  not upset any fragile egos;  try to make it seem as if they have come up with the answer – and wonder why medics won’t work with us to find solutions.

Back to the uneasy doctor. Phew!  He cottoned on at last, and I got the referral I wanted.  Getting cancer was my bad luck – it could happen to anyone.  What I didn’t realise was the constant fight to get proper treatment out of the NHS.

Time and time again people come up with the mantra “patients must be involved” – but we get overlooked .  Involving us might actually save money;  we know what works, but are expected to go away and submit to Counselling;  this can be incredibly helpful in the right circumstances, but for what I needed it seemed the modern equivalent of a pat-on-the-head. But as it doesn’t involve using expense, such as MLD, hydrotherapy, physio etc. the NHS tries to get everyone on a course.

Start a revolution – listen to us! 

WE are the experts.  WE have probably tried all the treatments suggested – we KNOW what works -can feel it in our bones if something is a waste of time, but want to get on with it and hopefully get some life back.  So do yourselves a favour and ASK US !!!

If someone actually listened when we asked for what we know we need, it might save money.

Today’s care

We find we have to deal with unexpected consequences, such as

OK – the NHS is underfunded etc. yeah yeah.  But thanks to the Internet anyone has access to incredible information.  I reckon the scare stories about Dr. Google are put out by the people who write NHS Choices.  Just check out their site, I’ve had to pull them up on Rabies, Polio etc.  But if they bother to look at th websites of the major cancer centres around the world, they could learn a lot.

I trusted the doctors who told me what pills, drugs etc. I needed for treating my cancer.  OK – when things didn’t go well, I just thought this was the luck of the game, but expected my doctors to help me with side effects.  As a Belgian Oncologist told me, “you British don’t take control of your health – you leave it all to the NHS ” and the NHS is there to treat the mass, not individuals when things go wrong.

I tend to look on US websites.  Of course, there are many crackpot ideas to ‘cure’ cancer, but official sites such as ASCO (American Society for Clinical Oncology) and massive hospitals like MD Anderson, Dana-Farber, Johns Hopkins etc. put out incredible information and deal with questions in an exemplary fashion.

When I was sent the following information – in conjunction with Livestrong (major US cancer charity) it all made sense, so here are their latest ideas:- .

Maintain a Healthy Lifestyle

As you move beyond cancer, it is important to continue to maintain a healthy lifestyle. What does this mean?

  • Don’t smoke. If you smoke, talk to your doctor about quitting.
  • Get proper nutrition. A healthy diet will help you keep off pounds. This is important because studies have shown that gaining weight after completing cancer treatments may increase your risk of a cancer recurrence.
  • Exercise. Keep moving. Walk. Do yoga. Swim. Garden. Being active will help you keep the weight off and may help prevent a cancer recurrence.  (This was probably the most useful advice to help with my recovery – yet I’ve moved post-codes and am back where I started).  
  • Pay attention to your emotional health. Life after cancer treatment isn’t always easy. You may experience a rollercoaster of emotions after treatment ends, including fear of recurrence. You may be sad or angry about the way cancer has affected your life. If you need to, talk to a counselor or psychologist or join a support group. Within the cancer community, there are others who will understand your experience and what you are feeling.  Best advice I had from a friend who had been through cancer herself was “be easy on yourself, and never put the shopping away until you’ve had a rest!”

The Americans are great with help in looking after yourself, but if something isn’t working well, American cancer survivors get together and lobby for better care.  It was their Pink Ribbon campaign that enabled people to talk openly about breast cancer, and eventually other cancers.

So look on their websites.  Go to American Websites category on the Right hand side of this page, and look them up.

CancerSupportCommunity.org

And let’s get some thoughtful after cancer treatment care.  And if we don’t get it, take advice from the noted guru Roy Lilley, who says 

Now is the time to start running (the NHS) properly, funding it properly and people making a proper fuss if it isn’t.
And that means YOU !

 

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