cancer

It Shouldn’t Be Like This (But It Is)

/ Dominic / 6 Comments

Go with me on this…

Someone finds a funny lump on their testicle or breast so they call the GP to book an appointment and get it checked out. Once the GP has checked it out and is suspicious, the person is catapulted onto a cancer pathway that presumes it is cancer until proven otherwise.

This happened to me recently, and in the UK this is called an ‘urgent suspected cancer referral’ and, thankfully, 90% of people do not receive a cancer diagnosis. Panic, panic, panic, and breath, no cancerous mole for me.

What about the 10% that do get a positive diagnosis of cancer? If this frightening news was treated in the way that many MS diagnoses are then the following is a rough approximation of the next steps:

Try to imagine that this newly diagnosed testicular or breast cancer patient were dispatched from clinic by the oncologist, or possibly even the oncology nursing team, with a handful of leaflets about the available drugs (some of which, if we are frank,  are the modern equivalent of having surgery after a hanky with chloroform has been held to your face) and then offered an appointment in several months’ time to check how the tumour is growing and discuss options and choices.

So far, not wildly shy of the mark for many MS patients. By the way: the drugs? All of the drug options for MS sound horrendous to the uninitiated, and with no idea how to interpret the dreaded side-effects listed it is little wonder if you baulk. Grasping the leaflets about these Disease Modifying (not curing) Therapies the vast majority of patients realise that they have to learn a totally alien language at the same time as coming to terms with the diagnosis of chronic disabling disease. The faster the better. The newly diagnosed patient is on their own and with a complete freak-out diagnosis having been handed to them they do what everyone does these days and Google it despite being told to stay away from Google (for the record the most facile piece of ‘advice’ ever). 

Is it lacking context? Definitely.

Are you confused? You will be.

Are you scared? Guaranteed.

Of course, that doesn’t happen with cancer (except the Google bit!). No one would dream of treating a cancer patient like this. However, that is the exact experience of far too many newly diagnosed MS patients.

Compared to the relatively well-funded oncology services in the NHS the MS service is the poor relation and when the MS patient finally gets their confirmed diagnosis of an incurable, lifelong, and progressively disabling condition there is relatively little support. The nurses are amazing but they have a ridiculous patient load.

It’s odd though. For all the patient-centricity that is talked about you still hear about the occasional diagnosis by post, the gaslighting of patients who want to get on the most efficacious therapies the soonest (a proven beyond doubt way to mitigate the long-term effects of this ghastly disease), the patients who are told to choose their own medication (you are assumed to be an expert in pharmacology, pharmacodynamics, immunology, neurodegeneration etc) and to try and get the best outcomes the MS patient is going to have to become expert in the disease and the treatments, and if they have read much they’ll know that whilst things take the time they take their brain and nervous system is deteriorating at an unknown rate. With every day that passes they are a stage nearer to a host of repeatedly proven disabilities, both physical and mental. 

In case you are wondering, in the UK once cancer is confirmed there is a two-week target to start treatment. Two weeks from diagnosis. Two weeks! Not always hit I grant you but a stated ambition nonetheless.

“But (at least?) it isn’t cancer” or variations thereof are trotted out at this point as if comfort is to be taken from this spurious and slightly odd comparison. Odd,  because at least many cancers are curable whilst MS remains an incurable disease. The available drugs merely – to differing degrees – modify the disease course. There is no cure. MS is progressively robbing the patient of everything they took for granted, usually when they are in the prime of life.

The sad fact is that cancer is, rightly or wrongly, strongly associated with premature death, and in our society especially, we are very scared of death. A bit like Harry Potter’s  Voldemort it is customary to call it something other than what it really is. Death is powerful, frightening and to be avoided. We go so far as to publicly lionise people whom we feel have given their lives to preserve ours/others. It is called the ultimate sacrifice and valourised through the award of medals for bravery. Life is to be treasured and celebrated, the selfless giving of it for one’s fellow man doubly so.

You see, MS doesn’t kill you. You tend to die with MS and not from MS and this fact alone makes it infinitely less scary to an outsider, be that a friend or a neurologist. I can only imagine that this is the reason why MS is not taken as seriously as cancer.

Let’s return to death for a moment; the uncontested outcome, the undeniable and unavoidable endpoint for us all. I believe this is the real problem when holding the approach to MS care against that of cancer care. The focus is on the endpoint and isn’t really on the journey. MS patients are set for a long and difficult journey and yet that journey seems overlooked, devalued, unimportant when held against the fact that it is unlikely to lead to premature death. With MS the journey doesn’t seem to matter, only the denial of death. 

There has been no serious systemic change in MS care, as there was with cancer treatment. Perhaps it’s time we started that conversation? 

(Is the system perfect for cancer patients? Undoubtedly not. However, my point is that the professionals treating cancer or MS tend to have quite different feelings about the seriousness of the disease. This is a historical thing and the entire system surrounding the perception of the seriousness of MS is structurally flawed, or it would be taken more seriously, as a rule, not an exception.)

By: theMSguide.com with the capable help of top-notch proofreaders Rachel and Kathleen

Death Comes To Us All

/ Dominic / 1 Comment

No, this is not about murdering bullies. I was going to try and up the mood a notch after the last few posts with the woe is me theme. Unlucky as when I was tootling home from a very satisfactory swimming session (trying to stay fit and be a coffin dodger myself) when I hear this amazing young woman talking on Radio 4 – if you are in any doubt it is the most amazing radio station in the world – about death. She is a palliative care doctor in her early thirties and was diagnosed with some filthy cancer a few years ago and is now confounding the statisticians by living well past her sell by date.

Although she knows that she is now, in old doctor chart speak, CTD. CTD is shorthand for Circling The Drain and is not written with any mocking, just a factual observation that death is very near for the patient concerned. In the mollycoddling PC world that we live in today I am told that this is discouraged to the point that doing this could lose you your job. Pity, because it is quite a clever and amusing TLA in the world of death that doctors mostly exist in. My personal favourite though is DTS, as in Danger To Shipping, to describe someone who has become, how do you say this delicately, I can’t so extremely obese will just have to do. Pejorative to fat folks apparently. The fact is that there are few things within ones gift to control. Being fat, or not, is one of them. Same as smoking. But I digress. Back to the imminent arrival of the Grim Reaper.

I think this woman – Dr Kate Grainger – is doing a great service. She tweets, has written a few books and is generally interested in ensuring that an inevitable process is made comfortable and the mystery that some people are determined to cloak the process in is stripped away . Death is an inexplicably taboo subject and I can’t see why we need to avoid it. The terms deployed to camouflage death are numerous and baffling. Passed, passed on, gone to a better place (really, a crematorium or hole in the ground is always better?), no longer with us (no shit, I thought they had popped out for milk?) and so on. If I have to use a silly euphemism for death then it has got to be “shuffled off this mortal coil”. Brilliantly English way of getting the point over whilst dressing it in a bit of wit.

Dr Grainger has plans to Tweet her own death as a way of making death more socially acceptable. Bravo. It’s a free world and she is getting the PR and bringing the issue to forefront. Follow Kate at @GrangerKate . Wish her luck, give her strength, say goodbye. It’s natural and you have the opportunity to improve the lot of a fellow human. Good eh?

I may be being a little flippant, but I do realise and have experienced the emotional trauma and loss that a death of someone close, that death comes freighted with all manner of pain and suffering. That too is natural. I still don’t think we need to pussyfoot around the topic.

Although there is no need to bash on and on about it as your friends end up marking you for a morbid bore. Oh wait…, never mind. Oh yes, that’s it, one of life’s few certainties is death. And taxes.