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. And no knowledge of treating long term side effects.
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 2020” or later, amended to “by 2022” !!!!! So 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; emphasised I was one of few that paramecetol did NOT work for. 6 hours later, still in pain – find this is becaue the paon-relieving drip containts paracetamol! I made a huge fuss, and so much noise they had to run round giving me proper pain relief. But I was exhaused, and left wondering what else they would muck up
So, that got me started, and .
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 cancer survival rates – to 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)
Split Nails see http://126.96.36.199/~aftercan/2016/01/free-skincare-on-nhs/
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 may HAVE to sort out our care ourselves.
High Blood Pressure US research has discovered that this often caused by drug side effects.
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.
Other drug side effects
Dr. Lyon, in conjunction with the British Heart Foundation, has written a brilliant booklet Heart Health and Cancer Treatment, Macmillan hss also ‘used’ him for their booklet; 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 a compulsion to write something on it.
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 top 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 (see under Contacts category).
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 the best recovery rate – so don’t be afraid to ask questions.