Goalposts move again 

Brace yourselves!  Don’t think the ‘promised’ £38 billion for the NHS is going to benefit cancer care very much.

Yet again the goalposts have moved, so isn’t it  time the NHS made a New Year Resolution to tell us the truth?

New Cancer ‘Czar’ appointed

A new supremo, Peter Johnson, has arrived with the announcement that we’ll get the support we need ‘by 2021’. Thanks a bunch; this means promises given about cancer care deadlines have been extended – yet again !  PLEASE will the NHS,  Dept. Health, Matt Hancock et al realise that we need care NOW – not in some distant future.

Things are dire – today I’ve had the latest report from NHS Engand and NHS Improvement (that’s a misnomer for a start) which proudly makes a mockery of Johnson’s aims, saying “report covers the range of work that the NHS Cancer Programme is implementing, with the aim of diagnosing more people at an early stage and improving survival by 2028

No apology – no explanation as to why the goal-posts have been moved yet again.  Not even an apology as to why expensive Whitehall mandarins don’t consult each othr before issueing ‘targets’.

No wonder Macmillan Cancer Support says “patients are at breaking point”, calling its helpline, feeling they cannot ask questions of overstretched doctors and nurses caring for them. Chatting to a senior Helpline nurse she admitted she is constantly asked about long-term side effects, survivorship, etc. and can offer little practical advice. So we are on our own trying to find correct treatment.

Asking Macmillan what they were doing to support us in a practical way – i.e. campaigning for better recognition of side effects and what to do about them – the Macmillan ‘person’ flustered away. No, Macmillan wasn’t going to change.  It was still going to advertise ‘it’s there’ for us;  but as for supporting us when we ask doctors what can be done to help us when fighting for better quality of life – that’s not on Macmillan’s agenda.  So we are going to have to do it ourselves.i

Dealing with side effects

No-one knows how long side effects from treatment can take to appear.  Dana-Farber, the eminent American cancer hospital, say “even though chemotherapy is rapidly metabolized and eliminated from the body, the effects — and side effects — of the drugs can last a long time, depending on the type of chemotherapy involved”.

And by drugs, this also covers hormone therapy pills.

The good news is drugs pumped in to us help us live longer = good result. But, so often we are left alone to deal with the toll they take on our bodies, and have to find out how to deal with consequences ourselves.  The powers-that-be tell us we should be grateful we are alive, as though side effects are inevitable.  But is it wrong to hope for a reasonable quality of life?

After a recent visit to A & E because of a frightening dizzy spell,  I was sent home with no diagnosis.  Researching an article about Neuropathy (side effect of cancer drugs), I find that what sent me to A & E was probably long-term side effects, which doctors examining me had totally overlooked. So I  research that I’ll need to be checked out by a Neurologist, which means I’ll have to waste my time getting a referral from my GP,  when a bit of care in A & E would have short-cut this – simples!

Is it too much to ask that someone should have found out what caused the dizziness that sent me to A & E?  Don’t just check me for a heart attack, then tell me “we don’t know what’s wrong”.  Find out what IS wrong whilst I am in the hospital.

So I had to go to my GP, he wasted his time writing a referral.  Then Appointments got involved, and finally the day arrived with an expensive trip in hospital transport to and from the hospital. Not to mention the time spent with the Consultant. Luckily he was an old-school doctor, here as a Visiting Professor from Europe. He raised his eyebrows, seemed astonished that I hadn’t been given tests, gave me some then and there,  then asked if I minded if he fought on my behalf for the treatment I needed!  As if!!!

A short time later I was sent another appointment and I could see a massive file of print-outs on his desk, plus lettters from Consultants who had treated me.  He had taken note of all that I had been under, contacted them to discuss possible care plans, checked on American websites (we agreed the NHS’s were rubbish), and eventually told me what was wrong. Apparently my dizzy spells were probably due to Neuropathy, and he was able to tweak my medicines and tell me what to do.

Even though chemotherapy is rapidly metabolized and eliminated from the body, the effects — and side effects — of the drugs can last a long time before they make an appearance, depending on the type of treatment involved. Those side effects can normally include some or several of the following: 

  • Fatigue
  • Hair loss
  • Easy bruising and bleeding
  • Infection
  • Anemia (low red blood cell counts)
  • Nausea and vomiting
  • Appetite changes
  • Constipation
  • Diarrhea
  • Mouth, tongue, and throat problems such as sores and pain with swallowing
  • Nerve and muscle problems such as numbness, tingling, and pain
  • Skin and nail changes such as dry skin, colour changes, splitting nails, itchy scalp etc.
  • Urine and bladder changes and kidney problems
  • Weight changes
  • Chemo brain, which can affect concentration and focus
  • Mood changes
  • Changes in libido and sexual function
  • Fertility problems

If you have unexplained symptoms you can research these on approved U.S. Gvternment websites, etc.  https://aftercancers.com/helpful-websites-for-survivors

Make a New Year Resolution to take charge of your own care

Europeans are far more likely to do research into their health conditions, then go to their doctor armed with knowledge of what’s wrong.  They follow what advice they are given, rather than ‘forget’ to take pills or don’t bother to turn up for physio. Could this be a reason why their post-cancer survival rates are better than the NHS?

Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine, who says “.It used to be that the fear of recurrence was the only big fear we had to face after treatment for cancer, but things have changed in the past decade with the discovery and validation that there are a number of long term and late effects that need attention after treatment. …..

I can remember having a heart scan when I started treatment to be sure my heart was healthy enough to proceed with the drugs that had shown possible cardiac problems after treatment. All was well back then, but not so since then.

Because I have been so immersed in survivorship issues, I had my first heart test some 15 years after treatment ended. There were little things that could be better but nothing to say my heart wasn’t doing well enough to keep going for quite a while. I did have to convince the receptionist that seeing a cardiologist after cancer treatment was legitimate and I wasn’t a hypochondriac.

In fact, heart problems were beginning to show up in the survivorship community, and doctors began to connect them to cancer treatment. Cardiac issues have become so prevalent that there is now a cardiac specialty called cardio-oncology, which focuses on the patient’s heart after their cancer treatment.

I can agree with that, having had major heart surgery (7-hour op) at the Royal Brompton Heart Hospital, where they now have specialists dealing with this problem – and very well they do too.

Other late-term issues include hypertension, soft tissue problems, learning and memory problems, and peripheral neuropathy.

So make it your resolution to take care of YOUR health in 2020

Don’t wait until things get so bad it’s too late.  Go to your GP;  ignore the Receptionists who make you think you are making a fuss over nothing – you are NOT.  If you land up in A & E don’t leave until you have been given an explanation of what bought you there.

Make a fuss – I know if’s not British, but it’s YOUR life, and the NHS is sometimes not very good at looking after it. Every email to the local CCG, CRUK, your local Trust, your MP, Patients’ Association etc. to let them know you are not happy at the way waiting times are being extended, and even so you are not getting the care that others get in Europe, might gt them thinking of what they can do to improve.

Think back on the scandals that have recently have come to light in hospitals, then be brave and stand up like Julie Bailey  https://aftercancers.com/the-cure-itv-shows-worst-side-of-the-nhs/ .

P.S. Latest Report from NHS England on reported outcomes of cancer survivors in England makes depressing reading, particularly as it highlights large number of survivors reporting poor Quality of Life https://www.england.nhs.uk/publication/patient-reported-outcomes-of-cancer-survivors-in-england-1-5-years-after-diagnosis-a-cross-sectional-survey/