Cancer Research UK reports deaths from cancer are down Home I am one of an increasing number of cancer survivors – so why do I feel so gloomy?

Am feeling punch-drunk from battlng cancer and trying to get the treatment I need 

Cancer charities keep asking me for money ‘to find the cure’, but do nothing to help me deal with long-term consequences of cancer treatment.  It’s depressing, and occasionally I feel like screaming, particularly when someone says “you do look well”, when inside I am thoroughly depressed after yet another dead end trying to sort out long-term consequences of treatment.

My ‘battle’ with long-term side effects from drugs used to treat the cancer is still on-going, years after diagnosis. No-one told me this might happen – they just held out a packet of pills and said ‘take these’.  When inevitable side effects kicked in, I was told “it’s your age”, and doctors at the hospital where I was being treated told me it wasn’t supportive for me to write about these consequences – and heaven forbid suggest that European hospitals had recognised the problems and were actually dealing with them, and offering patients solutions.

I am alive, but just feel washed out.  In Britain it is such a struggle copng with a dozen long-term side effects, serious enough to warrent being under 12 different Consultants at 6 different hospitals.  (I could just go to the local Foundation Hospital, but I have become choosy and now realise I HAVE to be under a Consultant who knows about long-term side effects of cancer drugs – many don’t.  Hence the different hospitals).

  • I know that I am more likely to have a recurrence, even though ‘they’ don’t tell you this
  • problems often inter-relate so I need to know a Consultant I am under is happy to talk to another one.
  • there are Consultants who understand long-term side effects, but they are difficult to find

But, worn down with the relentless hard work needed to get the treatment I require, which often has been cut whilst the NHS sets its priorities elsewhere, today I hear that the Consultant who was dealing with Aneamia has left to go completely private, as he is fed up with NHS!

What gets me down
I try to stay upbeat, but get depressed and fed up with being targeted to contribute to charity appeals, just because I have had cancer; and constantly asked to contribute for research designed to help people get faster diagnosis, etc.
When I ask if a little of my contribution could go to helping survivors with the problems we face, I am told “this is not a priority”. Once you leave hospital after treatment, you feel abandoned.  If we are one of the 25% who end up with long-term side effects from the drugs we were given, we are generally brushed aside and made to feel a nuisance.
Why more survive
Major improvements in diagnosis and treatment, and fewer people smoking, means many more of us can expect to survive longer after a cancer diagnosis.
Unfortunately that is not the full story. “It is not that a magic wand has been waved and they are all cured,” said Ciarán Devane, ex-CEO of Macmillan Cancer Support. “It actually means many people will be living longer with the disease. The impact of cancer does not suddenly stop when treatment is over. Many cancer patients have to deal with the physical and emotional effects of their cancer for years afterwards.”
Friends expect you will get back to what you were before the assembly-line of cancer treatment. But “rates of depression and anxiety are very high when treatment ends,” comments Dr Michelle Kohn, director of Living Well, a programme that offers emotional and practical support to cancer patients at Leaders in Oncology Care, a private London-based clinic. “Other emotional issues, such as low self-esteem, anger, stress or sleep problems are also widespread.”
Problems still persist after treatment 
On top of this, cancer survivors are often battling with physical and practical challenges, anything from
  • huge financial losses
  • the side effects of medication
  • profound fatigue
  • a confused-feeling known as “chemo brain”
  • lymphoedeama (swelling)
  • osteoporosis,
  • night sweats
  • aneamia
  • fatigue. etc. etc.
 Friends and family might be increasingly baffled as to why we don’t bounce back and make the most of life. “People suffer for years, often in silence, without any real support,” says Kohn. “Life after cancer can actually be very difficult and lonely.”


Lack of funding plays a big part

Yet why do I get the impression that the NHS is waiting to cancer charities to pick this up – yet these charities prefer to concentrate on prevention as that brings in the cash because the public understands this.

LackOfFunding.gif (705×677)Currently the NHS hasn’t enough resources or trained staff to support increasing numbers of cancer survivors.  Many of us turn to American webites, where most major cancer units have survivorship programmes where teams of psychologists, nurses, physiotherapists and other specialists offer ongoing information, advice and emotional support to patients when treatment ends (funded by US health insurance).
I can only drool in envy, and try and attempt to copy the same after-care in England., which is a struggle.
Trying to get help with neuropathy
NHS consultants have
  • denied it exists
  • denied it has anything to do with drugs (even when confronted with print-outs from ASCO, etc)
  • tried to deny I have it
  • tried to blame this on other conditions they think I have
  • dished out pills galore, even tried to put me on tranquilisers
  • and made my life hell
It is only after I spent 3 months tied to a hospital bed last year, when my weak ‘neuropathy leg’ gave way.  I fell badly, because I also have osteoporosis (another condition caused by cancer drugs), causing me to fracture seven bones, that finally I am getting some attention for this – but I fear it is too late.
This made me feel lots better!
Recently I have seen two consultants whom I should have seen years ago.  Both gave me unexpected praise, saying that by rights, with all the conditions I have caused by drug side effects, I shouldn’t be walking. I have worked hard at exercising to keep mobile, so this was a tremendous boost to my self-esteem!
For me, it is too late to stop what has happened, but both consultants promised the condition won’t get worse. One is organising some special targeted physiotherapy, which I had been trying to get. Both say Hydrotherapy will be very, very helpful.  And at last i had been seen by consultants who gave me an incredible amount of time, and LISTENED to what concerned me.  Wonderful!
TLC can be more helpful than laughing
Yes, I know I usually brush aside questions of my health and say “I’m fine”.  But when I actually tell the truth it’s because I am fed up with trying to laugh.  So comments like “you’ll have to stop taking gin on your cornflakes” don’t do much for my mood.
In contrast to what is on offer in Europe and US, NHS post-treatment advice is limited – not only isn’t there money, but I find apathy.  As one Oncologist said to me, when I had asked for help to handle neuropathy, etc., dismissed my concerns with  “well, you are alive, aren’t you?”
Quangos don’t help

Money has been used (or should I say wasted) on quangos like The National Cancer Survivorship Initiative (NCSI)  Launched in 2008 as a partnership between the Department of Health and Macmillan, all it came up with, before closing down, was a Holistic Needs Assessment – asking questions like ‘what was your mood last week?’;  this is REALLY helpful when dealing with osteoporosis, Lymphoedemia, etc.

They did come up with research that 60% of cancer survivors have unmet physical or psychological needs; over 33% have problems with close relationships, careers, or have difficulty performing household duties; over 90% have suffered financial losses. But all the years of meetings, and not one practical idea to deal with our problems.
Training for post-cancer
Many cancer organisations run a free six-week programme on “Where Now?” or “Way Forward” etc. aiming to help people adjust to life after treatment ends.  I took a course, and went along ready to fill a notebook with useful tips and addresses on where to go to get practical help – and came away with nothing except basic advice on nutrition, exercise etc. but NO practical advice about how to fight for what we need.
What we need are Advocates, similar to what they have in America, who can help us fight for better post-cancer treatment. There are many highly effective ways to cope with tricky post-treatment issues. But without expert guidance, few people know where to begin. “The fear that cancer will come back again is huge for me,” say many.

Then friends often say things without realising the impact they’re having.  “Expect you are glad that’s over”, when you know it isn’t, or tell me about someone they know whose cancer came back, spread and killed them. One has to grin and bear these..

As survivors say – you can feel very alone.
Ask the doctor?
We are told to ask our GP if we need help and advice, but they are a mixed bunch.  If you are lucky yours will be supportive, but they are not experts and often don’t know where to go for help or what you need. One just told me “you know much more about cancer than I do”.  Thanks a bunch – and she never bothered to find out anything helpful. Luckily I now have found one who is supportive, but it has taken ages to discover her.
If you are lucky enough to live in an area where there is a My Care, My Way service, and you are over 65, this service is there to give sensible, practical help to those trying to navigate NHS care.
I have found them brilliant at organising appointments – no longer do I sit on the phone waiting for the Appointments call centre to answer – they do this for me!  As well as offering practical treatments such as massage – at last Britain is following a European lead.

None of my moans must dampen the brilliant news about falling death rates. But there is a clear message behind the headlines, and one that must not be ignored:

NHS post-cancer treatment services need to improve dramatically.

In the meantime, I will cheer up – but it is a struggle when the world expects you to be glad “it’s all over”.  And for you it isn’t.

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