Cancer Survivors find out information for themselves – and where they find this

Insurance

Survivors must help themselves

As UK has poor cancer survival rate compared with Europe
NHS has plans to help survivors – in the distant future   

NHS is always pleading poverty, so one wonders if providing nothing is a way of saving money?  Instead we have to rely on cancer charity Helplines, (funded by us – not the NHS); these say survivors are reporting problem after problem from long-term cancer drug side effects, but there’s not much help they can offer when dealing with these.

Dept Health peddles Pie in the Sky

Three years ago, the Department announced “In 2014, we want to match the average cancer survival rate in Europe to save an extra 5,000 lives every year“. This pious statement is still on their website, and our survival rates are still bottom in Europe.

So if you want to live to a ripe old age ,after cancer treatment it’s up to you to fight for what you need.  As a start try Contacts below:

What’s available in Britain

There are some wonderful medics – often battling to get more funding to treat us – whom I have found incredibly helpful.  For –

Heart Problems caused by side effects of cancer drugs

LyonThe Royal Brompton Hospital – in particular Dr. Alexander Lyon

whose specialist interest this is.  When I consulted him, things moved incredibly fast.

In November we talked about problems cancer drugs cause the heart, and what had happened to mine.  Another appointment two weeks later with him and his team, mapping out a plan of tests, stretching in to January.  Results have been discussed on phone, and now I see him at end of month.

High Blood Pressure  US research has discovered that this often caused by drug side effects.  One result of Dr. Lyon’s investigations is results of a 24 hour test, which I can now take to a doctor – WHEN I find someone who is dealing with and understands this.  Anyone have any ideas?

Lymphoedemia – Stockings and other treatment didn’t work on me, so the British Lymphoedema Society recommended Sossi Yerrisian.  £80 an hour for bi-monthly MLD treatments with her,  which has zapped the problem.

Nails I really felt a fool, but getting dressed, when your split nails catch in everything, is painful.  And as for shaking hands ……!  After years of embarassed complaining, and feeling doctors thought I was making a fuss over nothing, someone at La Roche Posay told me to go to Dr David Fenton. Working in Harley Street, he also does NHS work at Guys and St. Thomas.  After trying several things, he put me on Solvazinc zinc tablets (obtainable on prescription).  My nails are split-free, and have even grown enough that I sometimes have enough to file down!

Skin Problems as side effect of drug. If you getHeel  itchy skin,  Flexitol make a Skin Balm and Heel Balm (for feet) both of which are obtainable on prescription.  Otherwise go to Skin categories on right hand side of page. http://after-cancer.info/category/skin/

There are other medics with an interest in this subject, but I hesitate to recommend them as they are SWAMPED.  But if there is one who has room for new patients, or a hospital that welcomes new patients, let me know at verite@greenbee.net.

GPs – is yours helpful?

After treatment finishes in hospital, we are told we will now be cared for by our GP.  Some GPs regard us with dismay, seeing us as a drain on their budgets.  So it can be left to you to find what you need.

Recently National Audit Office and Macmillan announced that the UK has some of worst post cancer survival rates in Europe.  About 25% of survivors have major medical problems with long term side effects from drug; these sometimes appearing years after treatment ends. If GPs can’t or won’t help, it’s something we must do ourselves.  If you have enough funds, you can go abroad, where specialist doctors deal with survivorship issues.

Don’t be put off by GP sneers over “Dr. Google”, just go on overseas websites, particularly those in US, and marvel at how our cancer hospital puts up videos showing off Celeb fundraising parties – the Americans focus on clear, informative and interesting videos giving us accurate and useful information

So -contacts I have found on Internet

Most cancer types have their own line dedicated to a particular cancer, but there is nothing to stop you looking, or asking for help for general problems.  Some well-known Helplines are :

  1. Breakthrough Breast Cancer
  2. Breast Cancer Care
  3. Prostate Cancer (has an excellent Forum with chat about drugs and side effects)
  4. Jo’s Trust (Cervical Cancer)
  5. Macmillan
  6. Maggie Centres
  7. The Haven
  8. Cancer Research UK CRUK

N.B These all offer excellent help, but because some are geared towards offering NHS approved advice, you may find more up-to-date information if you try American websites.

And don’t expect any Helpline Advisor to point you towards any treatment option abroad, if we can’t handle it in UK.  For some reason the British system doesn’t look further than our shores – and doesn’t acknowledge that sharing knowledge could be the way forward.   Or least suggest good official websites abroad.

American websites

Britain may have set up the World Wide Web – but boy, the Americans are showing us how to use it for the benefit of cancer survivors.

These are sites I visit regularly.  They are run either by the US Government, famous cancer hospitals (streets ahead of ours) or American Cancer charities.  What I like about them is their frequent use of short, informative and easy-to-understand videos.

Incidentally, both Livestrong and Susan G. Komen for the cure have had problems recently, but seem to have risen above them.

ASCO – American Society of Clinical Oncology

Cancer.net

Try these links:  http://www.cancer.gov/cancertopics/types/breast/beyond-cancer-video

http://www.cancer.gov/cancertopics/types/breast/beyond-cancer-videos Ce

Memorial Sloan Kettering Cancer Hospital

MD Anderson Cancer Center

Mayo Clinic

Dana-Farber/Brigham and Women’s Cancer Center

Johns Hopkins Hospital

University of Washington Medical Center

Massachusetts General Hospital

UCSF Medical Center

UCLA Medical Center

Stanford Hospital and Clinics

Livestrong

Susan G. Komen for the Cure

And good luck!

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