Unless you are very lucky, your GP is someone who is faced with Government paperwork, staff problems, not enough time and only basic knowledge on cancer – NOT good enough. And no time to keep up with all the complex problems the new generation of Hormone and Chemo drugs present. Even years after you have finished the course.
We need help NOW – not sometime in the distant future. The NHS says it can’t be done –but say they will have treatment strategies in place “by 2018” !!!!! P.S. This now seems to be 2020!! unless we learn to look after ourselves, we only have ourselves to blame when things go wrong.
hot off the press after a visit to a & e, and three days on a ward. the hospital where i was treated now practices doctoring by remote control. i told the person admitting me that i was in pain, and which drugs worked on ME, but paramecetol did NOT. 6 hours later, still in pain – but am on i/v paracetamol. my “persuasion” made them realise i was one of .01 % who don’t tolerate this – and was given what i asked for.
That got me started.
I asked around, and here are contacts I found. .
I would welcome any more names or centres to add..
Let’s all aim for better post cancer survival rates – bring us up to European survival rates.
If we could get help when faced with long-term side effects, this surely will improve survival rates so we reach levels experienced by other countries.
If you have
Heart Problems (possibly caused by Aromatase Inhibitors, etc)
Originally I consulted them privately in late November, but was easily tansferred to the NHS sector, and very little wating time. The team moved quickly to map out a plan of tests, stretching into January. My mind is reeling with all the helpful information that was discussed. I now know why I have so many other medical problems (apparently more long term side effects of drugs) and have a clear plan of action!
One of the tests I had was 24-hour Blood Pressure monitoring; this has also helped me with mapping out what treatment I need for Neuropathy; according to US research, high BP is a side effect of this. But trying to convince my GP to sort this out – you know the battles we have! Whatever the Minister of Health says, GPs just DON’T have time to keep up with what we need – we HAVE to sort out our care ourselves.
And I only got to see him because a friend suggested this – although I could see my GP’s surgery from his window!
High Blood Pressure US research has discovered that this often caused by drug side effects. One result of Dr. Lyon’s investigations was to have a 24 hour test, results of which I can now take to a doctor – WHEN I find someone who is dealing with and understands this.
Lymphoedemia – Stockings and other treatment didn’t work on me, so the British Lymphoedema Society recommended Sossi Yerrisian. £80 an hour for bi-monthly Manual Lymphatic Drainage (MLD) treatments with her, which has zapped the problem.
Nails I really felt a fool complaining about splitting nails, but getting dressed, when your split nails catch in everything, is painful. And as for shaking hands ……! After lots of embarrassed 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). Now my nails are split-free, and have even grown enough that I sometimes have to file them down!
Other drug side effects
Dr. Rose again, in conjunction with the British Heart Foundation, has written a brilliant booklet Heart Health and Cancer Treatment, This is useful for all survivors, as we seem to gather drug prescriptions like mad; once a doctor has their prescription pad out on the desk, there seems to be a compulsion to write something on it. Surprisingly, when I see my private doctor, I hardly ever get given one – when you have to actually pay cash for pills, it’s another matter! Pages 47 – 51 of the booklet lists ‘fashionable’ drugs, like Lisinopril, Atenolol, Atorvastatin, Simvasgatin, Furosemide,Aspirin, etc. and possible side effects. If you have been suffering Diarrhea, Vomitting, Indigestion, Dry Mouth etc. it might be a side effect of one of these. Get the booklet from Macmillan.
Skin Problems can be side effects of drugs. If you getHeel itchy skin, Flexitol make a Skin Balm and Heel Balm (for feet) both of which are obtainable on prescription. Otherwise look up info on 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 firstname.lastname@example.org.
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 drugs; 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 – whereas 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 :
- Breakthrough Breast Cancer
- Breast Cancer Care
- Prostate Cancer (has an excellent Forum with chat about drugs and side effects)
- Jo’s Trust (Cervical Cancer)
- Maggie Centres
- The Haven
- Cancer Research UK
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.
And remember – don’t be put off – we OFTEN know more than the GPs trying to treat us. A wise old Consultant told me those that make the most fuss have best recovery rate – so don’t be afraid to ask questions.
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