What's happening once we finish 'official' treatment?

Cancer survivorship: after treatment what’s happening?

But for one in four survivors, NHS cuts make it difficult to handle the side effects treatment brings. Signs are that once the election is over, promises of extra funding will fall short of increasing need. There are approx. 2.5 million “survivors” in the UK; a pretty amazing lot, running races, organising fund-raising, and doing more than their fair share to help those coming after.

Or as one of their expert puts it so clearly: “An almost distinct sub-specialty addressing the sequelae of immunotherapy is evolving, and requires collaboration and dedicated multidisciplinary input”. Er – clear as mud.

Beware being neglected

Once hospital treatment finishes, we are no longer “interesting”. We’ve put up with being used as a pin-cushion (warning – next time I’m told ‘sharp scratch’ I am going to scream). Reality creeps up with the knowledge that patients = people with no brain.

What we do know is that CRUK tells us ” increasingly successful treatments can lead to frailty, pain, and often require long-term care, which no-one has budgeted for. Currently it’s not any particular physicians’ domain . e.g.everybody’s business becomes nobody’s business”.

The ‘cancer fight’ is now to get the care we need to handle ‘morbidities’ or long-term side effects.

There is a glimmer of hope. CRUK mentions cancer survivorship should be considered integral to the cancer pathway, and management of issues sits within the remit of palliative care, although many colleagues in the specialty do not agree with this. However, CRUK say this means “in some areas palliative care services are embracing the survivorship agenda by extending their enhanced supportive care input to patients likely to have longer prognoses”. e.g. Never use one word when you have a range to choose from.

Translation: if you need long-term care this might be handled by the ‘paliative team’ in your area.

However, CRUK say there is currently little uniformity in survivorship services amongst Cancer physicians, surgeons, nurses, general practitioners, allied health professionals, patients etc., and it’s left to us to sort out what we need

There are schemes galore, from Holistic Needs Assessment which promise Utopia but in reality can seem a tick-box exercise designed to satisfy Whitehall – and what do they know about genuine needs? And I won’t even mention the multitude of schemes that will be available “…in 2022/2025/2030 ” – take your pick.

So yet again it is going to be up to us, whichever party wins the Election, to fight for the care we want and need NOW – not in the far distant future.

Officialdom divorced from reality

CRUK says “We have established a cancer survivorship model and philosophy of care over two decades, focused on a multidisciplinary rehabilitative approach, and have measured outcomes in survivorship patients. ….patients are affected by global physical symptoms including fatigue, as well as a variety of tumour-specific symptoms, and psychological and social factors. …losses experienced by patients include physical losses (muscle mass ‘‘deconditioning’, change in body image, fertility, libido) psychological losses (confidence, autonomy, purpose, faith, control) and social losses (income, role), by adopting a multidisciplinary team approach”.

Translation: the MDT approach means you can blame everyone else. But not actually offer care for genuine needs.

The American Journal of Oncology Practice says we need counseling beforehand. I don’t think so; my kindly surgeon spent hours talking me through what was going to happen beforehand, but I can’t remember a single word.

I needed information AFTER the event – when side effects started to kick in. But it is obviously easier for the NHS to throw a chunk of information at us when we are only concerned with a recent diagnosis – not what is going to hit us in the future.

What IS going to happen?

IT’S UP TO YOU. You are going to have to sort out your own care. If you live anywhere like my area my GP is about to retire, worn down with trying to handle NHS paperwork, and fighting for appointments for patients with consultants, when there aren’t enough consultants.

I mentioned to him – jokingly – “perhaps I should go back to London to get an appointment? “Would you?” he asked. I now make use of hospital transport to drive me miles to see three different consultants, all of whom joke ‘what are you doing here?'”

What indeed – but costing the NHS the use of a hospital car for a whole day each time.

So,

Keep a diary/list on the fridge/notifications etc to remind yourself to chase up your appointments. No-one else will. (Warning – I still have skin problems – I finally saw a Dermatologist yesterday and realised this had taken a year to arrange – not good enough)
When ‘they’ say “be kind to yourself”, remember Massage is part of European cancer treatment and proven to be good for you
Make a genuine effort to exercise – authority after authority produces boring statistics proving it is good for you, especially to counter fatigue.
Weight – take time to learn food calorie values, and think what are low-calorie treats for when you are at the end of your tether.
Don’t be afraid to remind doctors of your needs. GPs are incredibly busy; once a patient has finished with hospital treatment they don’t realise we are going to need a lot of care from now on.
Don’t be afraid to take a short nap every afternoon.
Contact your doctor or specialist nurse if you have any concerns between appointments. Also contact them if you notice any new symptoms; don’t wait until your next visit.
Face up to reality – NHS cuts are going to affect your after-care, so it’s up to you to chase this up.

What’s happening once we finish ‘official’ treatment?

Cancer survivorship: after treatment what’s happening?

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