Survivorship – it keeps us going

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But it’s no use sitting there and doing nothing

Once Treatment is over -we have to get on with surviving.

What no-one tells you is that YOU have to work darn hard at this.

Friends know you have finished with with hospital treatment, so assume you are ‘cured’.

Your doctors often give the impression that they’ve seen you through – now, “where’s the next patient?”

And you can’t understand why you can feel worse than you did during treatment.

At last year’s Macmillan Conference a speaker (doctor) mentioned that ten years after initial diagnosis, 60% of us will still be attending GP’s surgeries with side effects from the drugs we were given.

That’s the gloomy news – now all sorts of plans are in place to help us.  But if you want to survive the jungle you are going to have to give your chances a boost.  Andrew Lansley, the new Health Minister, has been ‘speechifying’ about Patients Taking Charge – now let’s do it!

  1. You are NOT taking up doctor’s time wanting treatment for still current problems.  If the medical profession want us to take the tablets, they have to realise that there is a lot of ‘mopping up’ to do.
  2. Ask for help – there is a lot out there, particularly when it comes to finances, benefits, insurance and other documents.
  3. Trawl the internet.  Make a plan for a weekly ‘sweep-up’ of useful websites, particularly those put out by the American Cancer Centres (sorry, centers!).
  4. Play fair with employers.  Give them an honest assessment of how you feel, and how you expect to feel.  Then work out a fair solution for both of you about what work you will do.  And don’t forget that although your colleagues will be pleased to see you back, they are not going to be too happy if you take time off for a sleep in the afternoon (although this is a sensible action), unless you and your bosses show that this isn’t going to impact on their workload.

Survivorship Projects

In Britain we have Professor Mike  Richards, known as the ‘cancer czar,  in charge of survivorship. Over a year ago I asked him when the national survivorship committee were to report.  Apparently in 2012.

Not much to be expected there.  So treatment is now up to you.  And you are going to have to work at it, unless you are incredibly lucky and treated at one of those hospitals where they take survivorship seriously.

Some time ago I went to see Macmillan, the cancer charity, to put the case for a programme that would help us to gather all the tools we needed together, to enable us to get the best possible care – wherever we lived.

I could see the possibilities of the Internet.  Wherever we were in the world, if we knew a web address we could be in touch with top-class information, and if we could meld this together into a service accessible where we lived, we would be able to make use of the superb information that is out there, but so often unobtainable as we don’t know it exists.

Again, having now joined up with the NHS, Macmillan say the programme will be coming around 2012.  They have set up a website for the National Cancer Survivorship Initiative www.ncsi.org.uk

I mentioned to Macmillan that the website was mostly blanks – and suddenly the pages started to fill!  But currently most of the articles are either dictionary definitions or statistics, nothing that one can get on with.  There is a Health and Wellness Clinics Category – which has an outline map of Britain and Northern Ireland with coloured dogs.  Click on these, and nothing happens.

So, go on American sites, and click on Survivorship – you would be surprised at the helpful information they offer, and much of their employment law is basically the same as ours.  Watch this space for a list of helpful sites.

And Good Luck!  We have to get on with things ourselves.

On the HAVING FUN AFTER CANCER site I have tried to address

  • Handling Side Effects
  • Finding Cancer Support Centres
  • Suitable food to build up our strength
  • Skin problems, eyes, hands, hair and feet and possible solutions with Clinically-trialled and FDA approved products
  • Lymphoedema
  • Health problems – where to ask informed medical advice for the many tiny problems we get
  • Research from reputable centres
  • Finding work

Re the last item – I have just come off the phone talking to one of the ‘new’ entrepreneurs who are making headlines in the Business sections of our newspapers.   He has sensible ideas – not vast money-making ones, but ones that could be carried out at home, keep our brains in gear and give a good basic salary – not pay peanuts.

Watch this space.

Help needed?  Try CAB

If finances are getting you down, grab your papers – anything you think MIGHT be useful – and make an appointment with the Citizens’ Advice Bureau.

I don’t know what made me do this – just sheer bxxxxxmindidness to get out what I felt about bureaucrats, I suppose.  I gave Judy an outline, then she started rifling through my papers and working away.  Every so often she would fire a question at me.  Then about two hours later she tidied up the papers, and told me to go home and she would be in touch.

Two weeks later some incredible things started to happen.  Judy was beavering away contacting offices and officials on my behalf.  Policies I had forgotten about started to pay up.  Rebates arrived from the Income Tax office.  I got things I had spent out re-imbursed (I had thought it wasn’t worth claiming, but Judy showed me just how receipts mounted up).  And a plan arrived with a realistic assessment of what I might earn, and all the things I could now claim for.  I was a lot more cheerful when I looked at the list, and realised that for the next year or so I wasn’t going to have to pay any income tax!

Hope you are as lucky!

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