#030 The Stuff They Don't Tell You About Cancer

OFF TOPIC

This blog marks a temporary, but significant departure from our usual topics. It regards a subject which I have become unhappily familiar. Cancer. The carer's perspectives I share are mine and while I fully appreciate that other peoples experience of this disease are varied, I also believe there is a truth in what I write which will be recognised by many.

This is not a self-indulgent 'woe is me' cry for sympathy. I want none of that. For me, writing is cathartic but I've put off writing this because I don't feel that the current vogue for endless introspection and public baring of emotion is either healthy or useful.  Nor is it a critique of the NHS, who's doctors and nurses do their very best in less than ideal circumstances, so ambulance chasing lawyers can bugger off now. Shit happens to good people all the time, that's life.

The point of this blog is to share some of the things I wish I had known at the beginning of the story. In short, its the stuff they don't tell you about cancer.

WHERE IT ALL BEGAN

Twelve years ago my wife, Dolores, was diagnosed with bowel cancer. For anyone to hear the words "you have a tumour" is a shock, but by all reasoning she was a low risk category for the disease; non smoker, vegetarian, active and healthy lifestyle. We had recently been mountain trekking.

When I told a mate the news, he said "This will be the worst thing you will ever experience". No surprises there, cancer is hardly a bunch of laughs. But from a level headed, steady guy, his uncharacteristic anger, even resentment, was resounding. A close friend of his was killed by leukemia a couple of years previously. To say I can now understand his emotions, would be inadequate. It's not that detached, I now feel them.

The tumour proved to be particularly resistant to treatment. Daily doses of nauseating oral chemotherapy and a full course of radiotherapy only retarded its growth. Once the maximum doses had been reached, the cancer continued to invade and destroy tissue. It was only radical life changing surgery, as a last resort, which saved her life. At this point, you could jump straight to 'great', 'job done'. Which in many ways it was, but this is really only the start of the struggle. However, before we get ahead of facts, lets pause to look at pre-operative treatment.

CHEMOTHERAPY & RADIOTHERAPY

The rigours of chemotherapy are well documented in film and documentary, albeit in a fairly one dimensional, 'its crap', 'it makes you sick' and 'your hair falls out' kind of way. Not all chemo is the same. Some forms are injected, other forms are taken as a tablet. Not all chemo results in complete hair loss. Injected chemo is often administered in cycles with a rest period in between, giving brief relief from symptoms.

However, oral chemotherapy is taken daily, every eight 8 hours, with no break from the nausea and debilitating weakness. During the 3 month treatment, Dolores' weight plummeted by a third, setting her up with contributory factors leading towards long term health degeneration. During rapid wasting, the body burns muscle in preference to fats. Combined with long term chronic fatigue causing inability to exercise, her heart muscle would have lost condition too.

Simultaneously, she also received the maximum permitted does of radiotherapy treatment. The thing about radiation is that it burns. And although the gamma source has a short half-life, it continues to burn. Her skin in the target area literally fell off, painfully oozing exudate for weeks afterwards. The skin did re-form but has never fully healed. Radiation dermatitis is a side effect of ionising radiation. Twelve years on it is thinned, reddened, constantly inflamed and irritated, resulting in terrible soreness.

The focus of treatment is understandably on cure and immediate survival. But it appears to me there is very little public awareness of the long term affects of radiotherapy. Knowledge and informed consent, will help patients prepare for the consequences of it.

PAIN MANAGEMENT

Not all tumours exhibit symptoms. However, despite the best efforts of pain management nurses Dolores' tumour caused excruciating pain as it got larger eating into tissue. She was on high doses of liquid paracetamol and morphine. Drugs like these will have an effect upon the patient's perceptions and behaviour which they may well not be aware of. Cancer is far reaching, it eats away at person physically, stealing who they are.  And then, it continues to take from everyone who cares, indiscriminately consuming happiness and all that is good, ripples of misery radiating outwards.

A CARERS PERSPECTIVE

YOUR JOB: Caring for someone with cancer takes a lot of time and patience. If you're lucky you will have a sympathetic employer who will allow you time off work. I was fortunate that the company I was contracting for at the time allowed me to come and go at irregular times without question or continually asking permission to do so. Even so, I occasionally heard ignorant co-workers make comments such as 'part timer'.

Needless to say, it's unlikely your partner will be able to work during treatment. It takes all their energy to fight the disease. Forget all these celebrities 'bravely continuing their busy schedule' all through chemo. Bullshit! Firstly, these celebs are likely to have and afford a comprehensive support structure. Secondly, a few media engagements is hardly working down the pit or coping with the demands of a proper job. Thirdly, such pseudo self sacrifice and the paparazzi attention it attracts, does nothing to help an ordinary person struggling with an employer who does not understand what cancer treatment truly entails.

YOUR INCOME: I have been self-employed for the past 17 years. I enjoy the independence, personal accountability and responsibility it brings. Cancer effectively halved my income, very quickly going from doing OK to completely struggling, with no financial help. It ultimately resulted in a decision to move house rather than be financially ruined by mortgage and health care costs.

It's a issue that hasn't completely gone away. Imagine how humiliating it is not to be able to join in a team celebration after a successful event, or having to turn down an invite to the party of a good friend because you cannot afford the diesel. Cancer keeps you poor and isolated.

YOUR WELL BEING: Being a carer is a utterly exhausting combination of mental and physical stress.

• During Dolores' daily radiotherapy sessions my typical day went: Wake up, make breakfasts, try to get her to eat. Help her dress and walk downstairs. Walk the dogs. Drive 1 hour to hospital. Wait 2 hours (sometimes longer) for treatment. Drive back home, drop Dolores off. Drive 45 mins to work. Do 4 hours. Drive back. Sort dinner, encourage Dolores to eat something. Tidy the house. Walk the dogs. Bed.

• During the 5 weeks she was in hospital the daily routine was: Wake up, no time for breakfast, walk dogs. Drive to work, do 6 hours, drive back home. Feed the dogs and let them out for a pee. Drive to hospital, 2 hours visiting, drive home. Buy fish and chips if they were still open. Try to eat while answering a stream of telephone calls from Dolores friends. All of whom were naturally concerned, some of whom were angry at me for not promptly replying their answer phone message. Collapse into bed. Sleep for two hours. Spend the rest of the night at the wide-awake-club staring at the ceiling.

Some advice, if you're calling or visiting someone with cancer or their carer: Don't expect them to want to be constantly talking about the state of their health or treatment. Quite simply, constantly relaying updates every evening does not allow that person a mental break from the cancer. Re-living the emotion time and time again is very destructive to that person's well being.

REST BITE CARE: Good luck with accessing professional help on this one, unless you're wealthy and can afford it. On the few occasions I have managed to organise a care package while I have worked away from home it has cost me more than what I earned.

There's advice for carers on the internet for how to manage this unfamiliar and often sudden change in circumstances, for which you will probably have had no formal training. Stuff like, 'If you're feeling stressed visit a friend', or 'organise some rest bite care'. All well intended but, in practice, useless, effectively just reinforcing how shit things have become and alone you really are. If you had that much time on your hands you wouldn't need the help and you'd be able to go to work.

Also considering the patient, who may feel emotionally dependent upon the carer,  rest bite needs to be handled compassionately so that it is not stressful or disruptive for them.

ISOLATION

Fighting cancer is a lonely place for both sufferers and carers, even with the support of friends and family. I was wholly unprepared for the sense of isolation I experienced  during the period of Dolores treatment and the months after her surgery.

Not knowing what help was out there, I called Macmillan cancer support charity for advice and someone to talk with. "We don't deal with that sort of cancer" was the curt response from an irritated voice on the other end of the line. Not the response I had anticipated, nor the message that they put out on the television asking for public donations.

Take a look at charity websites and you'll see it's all about what you can do for them and their CEO's six figure salary. Now try to find the bit where they actually help you. If you're lucky you'll find it buried deep in the menu structure or accompanied by some off-putting statement such as 'applications may take some considerable time to be processed and assessed'. They're quick enough to take your money, just not so quick to do what they're supposed to with it.

The council in Hampshire, where we used to live, was equally inept. Following discharge, Dolores was left with permanent open surgical wounds. Their response to an enquiry regarding bathing aids was that if she can stand up in front of a sink and wash then she would not be eligible for help. Thank goodness Derbyshire had a more caring approach to disability.

People live busy lives. In the days and weeks following diagnosis, the patient and their carer may receive more offers of help from friends than they know what to do with. It goes something like "Just let me know if there's anything I can do". But, the cancer regime isolates its participants from their normal social activities and so those offers of help get fewer as time moves on.

I am lucky to have a couple of people who have stuck the course and are always there. I'm certain there are many, many folks out there, silently struggling, who's isolation is total.  So, if you know someone in that situation who you haven't heard from in a while, you might just be in a position to make a difference at a time when the most need it. It may only take a few hours out of your busy life.

THE PARACHUTIST

Cancer, or indeed any serious illness, is challenging for everyone.  I know several friends who were the primary carer for a loved one. They did their very best for that person, neglecting their own needs at a cost to their physical and emotional health. For full time carers it can be difficult to separate the caring regime from their relationship with the person who was once so full of energy and vitality. So imagine what it feels like to have someone turn up once every few weeks, or months, picking holes and criticising. Ask yourself, are you being a parachutist, arriving with the big gesture while others are left dealing with the routine and difficult stuff?

THE CRANKS

You're half way through treatment, feeling sick, exhausted and your skin is falling off. Then a well-meaning friend says, "they've found this miracle that shrinks tumours. It's Apricots!" Humans are a resourceful species and have been around for quite a while. If curing cancer really was as simple as scoffing a few apricots, or any other crack pot potion, we'd all be doing it by now. Don't be a crank, it makes you sound like a loon.

AFTERMATH

After shock, came anger. Anger at the random destructiveness of cancer, at what it had taken away on so many levels. The months blurred together and became a year. More than a year, nearly two. By the time Dolores was finally discharged from medical care, I felt nothing other than a pervading numb exhaustion. In fact the most entertaining counterpoint to this were frequent head splitting migraines. "You should be happy" I was told by one person who had made occasional appearances,

Things hardy improved for Dolores either. She had a surgery and radiation wounds which would never fully heal and half her insides cut out. She managed this with inspiring fortitude. Slowly she regained some strength but it was obvious from the beginning that life would be very different.

SECOND CANCER

In the UK, the remission period for cancer is 5 years. After which cancer is considered to be cured. Just as Dolores crossed this landmark of time, a different type of tumour struck, this time on the side of her face, at the temple. Following the initial consultation, the doctors gave what seemed to be a ridiculously long waiting time. Neither of us wanted to go through that protracted process again, so I took out a loan and borrowed £1000 I could ill afford, to start the process off with immediate tests and biopsy at The Spire BUPA in Havant, Hampshire.

The results were sent back to Dolores' GP, which confirmed the tumour was cancerous and required surgery. The same consultant was then supposed to continue the process under the NHS. However time went by and we hadn't heard anything, neither had the GP. He measured the tumour, it had doubled in size, now getting worryingly close to Dolores' left eye.

We wrote to the head of local hospital trust, explaining the situation and how we had paid our own money for initial investigation. They responded very quickly, well I suppose they would do if it got into the papers that ordinary folk are taking out loans to get urgently needed treatment. It turned out the consultant had broken his arm whilst skiing and that Dolores' case had been forgotten about. Fucking great, they had effectively taken our £1000 and wasted it. The cancer was eventually operated on and cut out. The delay in treatment meant a much larger skin graft was needed to replace the tissue.

TELEVISION

A few years ago I participated in a TV advertisement for Cancer Research. At the time I thought it would be a good opportunity to help raise funds towards the wider battle against cancer. This particular advert, one of a series, featured people who had cared for relatives with cancer. I decided to play it straight, to be real and true to myself and my own experience. Not to indulge the popularly held, myopic belief that once the cancer is beat everything is fine and dandy.

Afterwards, some of the production crew approached me and thanked me for my honesty. One of them was going through a similar process and they realised they were not alone. However, the interview stirred up a lot of feelings which I thought I had put to bed. More than anything, it stirred up the anger I felt towards the disease and all it had inflicted upon us.

NEW LIFE

I returned to full time engineering work, surrounded by bullshit bingo, a significant few conflict driven egotistical managers, turning every meeting into a cock fight  (is amazing how one or two of these drag down the morale of a company) and employees who's enthusiasm and creativity had long since been snuffed out. Many were counting the days, weeks, months and years to retirement. The frequency and severity of my migraines intensified, I was burnt out and popping sumatriptan medicine like smarties.

Before Dolores became ill, I had been questioning the sanity of a life on the conventional treadmill of work, taxes, mortgage, pensions, ending with a few years of freedom, if you're lucky, then die. My grandfather's generation had subscribed to this model. He was dead within 24 months of retiring, most of which was spent in agony, enduring treatment for prostate cancer.

I met one expedition leader who clarified my thoughts. He said "Stu, you can work like a dog all year in order to enjoy a couple of weeks of adventure as a client. Or, you can get qualified and be paid to lead in the outdoors. You'll never get rich, but you'll have a fulfilling life".

He was right. I focused on achieving the Mountain Leader award, gaining experience, volunteering and supervising youth groups. It was a gradual process, I couldn't afford just to give up the day job. The day I passed my ML assessment, I was more chuffed than when I had got my degree.

TWELVE YEARS ON

Having large sections of your digestive tract removed has a number of serious implications in the long term. Firstly, uptake of essential nutrients and re-absorption of fluid is compromised. Meaning that types, frequency and quantity of food have to be carefully considered, as is the case for liquids. Over the years, chronic dehydration damages kidney function.

While digesting food, Dolores has pain on a daily basis, probably due to scar tissue sticking together. Last year this resulted in a blockage for which she required emergency surgery to prevent death by peritonitis. It's empirical evidence, but three out of the four people we know who have had similar surgeries to Dolores have also suffered from intussusception or other obstructions. It's not something that was discussed as a risk, either at the time or during recovery from the original surgery.

Then came the heart attack. Wasting during chemo and then inability to exercise, weakened the muscle resulting in a silent heart attack and progressive heart failure. Also, research is highlighting a correlation between the chemotherapy drugs and heart muscle damage.

Dolores now suffers from chronic fatigue and struggles with routine tasks inside the house. It is enormously frustrating and upsetting for her not to be able to cook a meal or enjoy a little gardening.

Needing a wheelchair to go out was a further blow to her independent spirit. Being in a wheelchair or pushing one around town is a real eye opener regarding attitudes to disability and accessibility, everyone should be made to try it! Like many people, beforehand I hadn't given much specific thought to wheelchair users. Its a awful, dis-empowering and frightening experience, several times folks reading their smart phones rather than looking where they're going have almost fell onto Dolores. I've lost count of the shops we cannot access. Then there are the people who look at you then deliberately stand in the way!

Of course, the recovery prospects for different cancers differ enormously. Anyone who has lived through this horrific ordeal deserves all the love and support of friends and relatives. But, for some, survival comes with a heavy cost. Their story does not end with remission. Cancer continues to take, and take, and take. It is a thief.

The most precious thing it will steal is time. Cancer patients and carers will lose the best, potentially most productive, years of their lives. You never get this back.

LOOKING TO THE FUTURE

Moving house helped give me the time needed to provide nearly full-time care, whereas remaining in Hampshire, trying to pay a mortgage, work full time, be a carer and paying for extra care would have exacted a ever increasing heavy toll.

However, if I were to think of one thing that would be of the most help in the future, as well as in the past, it would be rest bite care. In 2017 I was unable to renew my Mountain Leader work with two great companies because help is both difficult and costly to organise.

When the phrase 'rest bite care' is mentioned, I imagine many people think of it as a holiday for the carer. I don't event want that. For me, time off is time wasted. I'd just like to be able to do the job that gives me fulfilment for a few days each month, in order earn a modest amount of the stuff that puts food on the table and pays the bills...with the peace of mind that Dolores is safe and being looked after.

IN SUMAMRY
As a non-voluntary unpaid carer you should expect, for a unspecified, unlimited time...

• To sacrifice your well being
• To keep going no matter how mentally and physically tired you are
• To have your income slashed
• To pay out extra 'disability tax'
• Not to expect help from the state, they really don't care about carers
• There is little or no access to real help from non-government organisations

So that's it. No final upbeat message. No prospect of significant recovery. And I'll not insult you with glimmers of false hope.

Instead, I'll leave you with the following. It's good advice....

Value your health, cherish and nurture it.
Buy memories, not things.
Use your time wisely.
Look after each other.
Do stuff that makes you happy.

Because one day you may not be able to.