Border Lines

From London to Berwick: Culture shock? Oh, yes!

Archive for the category “cancer”

I’m aware of bowel cancer. Obvs. But I don’t fit the profile, do I?

It’s bowel cancer awareness month. The thing about awareness is that it doesn’t necessarily equate to action. And it’s action as well as awareness that Bowel Cancer UK are focusing on this month.

Bowel cancer is treatable and curable especially if diagnosed early. The problem is that going to the doctor can feel like a faff for symptoms easy to attribute to other things…For example:

Irritable Bowel Syndrome, a tummy upset, piles, just your metabolism, busy life – we’re all a bit knackered, right?

Perhaps you check out the symptoms on a website. It may say something like ‘Most people with these symptoms (see below) do not have bowel cancer’. It will continue that you should still get checked out by your GP – but maybe you don’t really fit the profile of someone with bowel cancer…

You’re fit (ish) – or maybe you’re even very fit; you eat a balanced (ish) diet – maybe you’re a vegetarian or a vegan; maybe you’re young – 30s or younger, say. Maybe you like a few glasses of wine or beer or maybe not. But you are certainly not the classic profile of someone with bowel cancer.

So, what is the classic profile of someone with bowel cancer?

It’s a 35-year-old deputy head teacher who’s a bit of a fitness freak and a vegetarian… you can read more about her (you may have seen her on Breakfast TV yesterday, 1 April 2017) here

It’s a pharmacist in his early 50s who walks his dogs and is training to be a hypnotherapist – find out more about him here

It’s a 40-year-old teetotal knitting and sewing vegan who’s studying for a doctorate who blogs here

It’s a 39-year-old beautician who, as far as I’m aware (and you’re probably relieved to know), does not blog!

And it’s me. A 53-year-old woman (when diagnosed) who walks marathons and enjoys a madly busy life.

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Here I am with my beautiful London daughter, good to go for the 2012 Edinburgh Moonwalk.

I am eternally grateful for trained medical professionals who do not find my body embarrassing, revolting or unapproachable. They just want me to be well.

If you are in the slightest bit worried about stuff to do with your bowel, don’t hang about: go to the doctor. Doctors are not embarrassed about putting a finger in your rectum to check you out, they do not find it an inconvenience to refer you for a colonoscopy, send you for blood tests, or get you to do poo sticks (not pooh sticks, that’s something else entirely!). And that’s another thing, if you are of an age where you receive the testing kit in the post (screening is for over-60s in England, Wales and Northern Ireland, over-50s in Scotland: yes, I know, not one of my friends listed above is over 60!), don’t put it to one side for later. Do it. Now.

Here is a list of possible symptoms you might experience:

  • Bleeding from your bottom and/or blood in your poo
  • A change in bowel habit lasting three weeks or more
  • Unexplained weight loss
  • Extreme tiredness for no obvious reason
  • A pain or lump in your tummy

Find out more at Bowel Cancer UK

 

World Cancer Day – Feb 4th 2017

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Here’s a scary selfie to encourage you to support World Cancer Day on February 4th. Bowel Cancer UK is one of the ten charities aiming to get people talking about particular cancers, spotting and responding to symptoms, and dealing with treatments

Bowel Cancer is the second biggest cancer killer in the UK. As someone who’s just completed treatment for it, I  highly recommend that you get checked out if you’re at all worried. You can find a list of symptoms on the Bowel Cancer UK and NHS sites. You’ll find my own experience of discovering I had bowel cancer here.

I’m not a great fan of the language that’s developed around cancer. To me, terms like ‘beating’ and ‘fighting’ cancer are loaded and even unhelpful – you can read about why I personally feel that way here. However, I do believe that the more we talk openly about cancer, discuss the symptoms, and acknowledge the realities of living with it and through treatments for it, the more likely we are to save lives. Bowel cancer, for example, is treatable and curable if diagnosed early.

My own two favourite local charities that support people with life-shortening and terminal illnesses here in Berwick-upon-Tweed are HospiceCare North Northumberland and Cancer Cars (Berwick and District Cancer Support Group). I would urge you to support one or both of these splendid organisations. Alternatively, give to one of the big charities to support nationwide and worldwide cancer initiatives. Then get your phone out and promote a wider understanding of cancer and its symptoms by posting a wonderful selfie with a funky band!

 

 

I feel like giving two fingers to the big cancer charities that blithely ask us to ‘wage war’ on cancer

This is a version of an article by me published on Voice of the North (VotN) recently. I’m posting it here in the interests of completion in terms of my thoughts on having cancer. Thanks to David Banks editor of VotN for the photo idea (his execution is way lovelier than my smeary snap!).

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I’m increasingly overwhelmed and irritated by some of the viral and advertising cancer campaigns that inundate our daily lives. I didn’t think I’d ever jump on the Jenny Diski ‘don’t call me brave’ bandwagon. I thought it didn’t matter how others perceive you or the way you live through cancer. That’s up to them, I thought. However, the pigeonholing of people with cancer as universal footsoldiers in the eye of a horrific conflict is pretty unrelenting. Targeted marketing on social networking means that as soon as there’s a whiff of cancer about you, your timeline is dotted with ads and rallying cries from cancer organisations to fight cancer. And there are SO many organisations that it’s hard to make sense of what they all actually do, other than encourage us to part with our money.

And it isn’t just online: you can’t walk out of the door or turn on the TV without an advert, poster, or message about some aspect of the condition being presented to you. Advertisers (and friends and family, of course) are extremely keen to see you conquer the disease, and to battle on, showing how brave, inspirational, or indomitable you are. Sometimes it can feel as if it is your duty to deal with this feared enemy in a suitable way. A way that, perhaps, encourages others to feel that they would do the same in your shoes. Most importantly, you should strive to be among the percentage who conquer cancer and go on to live a long and cancer-free life. If you’re unsuccessful, it’s important that you exit this life at peace after your brief or long contest with the mighty demon cancer. It’s a big responsibility alongside feeling like shit!

Cancer, of course, is not simply one illness. It’s a multitude of illnesses linked by the fact that they all involve mutating cells in some form or other. Of course no one wants to have cancer but the reality is that one in two people are currently likely to get some form of cancer. So it’s not unreasonable to suppose it might be you. Obviously, I hope it isn’t you. Don’t get me wrong, our family has experienced many blessings through cancer (and cancer is a shared family experience), including feeling more closeknit, communicating more openly with each other and meeting some fab people. Personally, I relish each new day in a way that I hadn’t realised I didn’t do before. But, overall, having cancer and being treated for it isn’t much fun.

So, endless images and conversations that present you and the illness you have in a way that you do not perceive yourself gets wearing. At the end of the day, you have no choice about being someone with cancer. It’s part of life and you find the best way to live with it and through it. Of course it helps having people cheering and praying and encouraging from the sidelines – the support and care of all those around you is thrillingly life-enhancing. And, of course, those who have life-threatening or shortening illnesses are wise to remember how difficult it can be for others to express their support – being seriously ill can make you a bit touchy!

During my operation and subsequent chemotherapy for bowel cancer there was a particular advert on TV that at first grated and then just got me down. It was a man who shivered alone in an icy black and white wilderness, unaware of the people around him. Then a nurse from the particular charity joined him and everything became full colour and he was not so lonely. I can’t pinpoint exactly what it was that annoyed or upset me about the ad (although the fact that my 14-year-old had to leave the room every time it came on will certainly have been a factor) – to be honest it might just have been that it was there!

It is lonely having cancer: the realisation of its impact on your life and the lives of your friends and family isolate you in an inaccessible way. Thoughts of cancer run like a constant tickertape across your mind. When you’re cleaning your teeth, when you’re reading a book, when you’re chatting to someone and telling them how ‘fine’ you are: it’s always there – in the way I imagine tinnitus to be a constant and wearisome companion.

Perhaps the ads and campaigns, such as the recent viral tic on Facebook to turn your profile photo monochrome as a symbol of solidarity against cancer, are simply too in your face for those who have (or have had) cancer.  So I do have sympathy with the woman who was so incensed by the black and white profile pic thing that she took a selfie in a mirror (defiantly bare-breasted and nipple-less) flicking a V sign, to underscore her disgust at the simplistic and lazy idea that recolouring your picture will somehow show solidarity with those who have cancer – or, more importantly, do something to help or support them. Personally I have no desire to reveal my cancer scar – although I acknowledge that many find it cathartic. I also acknowledge that there are campaigns about raising awareness of particular cancers, encouraging people to get themselves checked out, offering support services, and raising funds to find better treatments etc. But I do think that marketeers have got rather carried away with themselves.

This morning it was Cancer Research that got up my nose with the following ad on my Facebook timeline:

Stand Up To Cancer UK

For too long, cancer’s been playing dirty. It’s been going after kids, targeting grannies… and even taking cheap-shots at our breasts and testicles. It’s time to rebel against cancer.

What does this even mean? I can’t believe that personifying cancer is useful in any way, shape or form. I don’t see cancer as ‘playing dirty’ and I don’t see myself as a ‘rebel against cancer’.  Have these money-raising campaigns lost sight of why they are doing this? Have they forgotten about the people with cancer and focused instead on an idealised picture of having cancer? Or have they got carried away with the sheer joy of being able to pop out to run a marathon, walk a mountain, fly along a zipwire, and the satisfaction of getting sponsored for ‘a good cause’ for doing it? I often wonder just how much these big organisations spend on communications and advertisements. How much sponsorship never arrives at the charitable destination of choice?

And I think that’s it: all the adjectives and hyperbole seem to me to be a bedspread under which the process of breeding money has become a self-flagellating dirty secret. Cancer fundraising is increasingly all about itself rather than about the reality of the people who are dealing with cancer – whether they be medics, researchers, care workers, people with cancer or their families. Whilst I applaud the idea of raising money to support good causes (and medical ones) on a large scale, I wonder if big charities need a reality check, time out to revisit their purpose and ethos.

I would suggest that it is on the local level that cancer support charities meet tangible needs at source. Here in Berwick, Berwick Cancer Cars (Berwick and District Cancer Support) ferry people the 80-100-mile round-trip to Newcastle-based hospitals. For someone undergoing radiotherapy, that’s a daily journey – often for six weeks or so. HospiceCare North Northumberland provides free support to patients, carers and families – and care in their own homes for those who wish to die at home. This is the up-close-and-personal end of serious illness.

I’m not saying we don’t need research, and organisations with a macro, nationwide and global view. I am saying that such organisations need to ensure that what they are doing is about real things; real people, and not just about raising money for the sake of it.

Falling off the edge of chemo…

Chemo is done. Completed. Finito. Hurrah. I had the last shot in the arm a couple of weeks ago and finished my subsequent two weeks of tablets a few days ago. Such a relief.

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The last shot in the arm.

Oh, but there is a strange thing that happens post-chemo – or, more accurately, doesn’t happen. I’ve mentioned in a previous post the dire warnings one receives before starting chemo: the possible infections (soon my surreptitious antibac habit can be consigned to the handbag of history); the sore mouth (kiddies toothbrush only, no flossing); tingling and sore hands and feet; dietary restrictions (bit like a pregnancy diet – no cured meats or fish, runny egg yolks, paté, shellfish, cream or blue cheese etc). You’re even issued with your own thermometer. I’m not sure mine worked properly: when I took my temperature it always seemed to be exactly the same. Or maybe I’m just thermally stable!

A fellow chemo imbiber confessed at round two of the six-month long chemo experience that she’d been unable to resist a smoked salmon and cream cheese bagel. Was I jealous? Oh, yes! But I was simultaneously full of anxiety for her. Your chemotherapy record book contains a terrifying traffic light chart – repeated every other page just to drum the dangers home (and, no doubt, to help you find it easily in your chemo-induced befuddlement)!collage-1470649101490

So you live with the fear for six months. And then? Well, then nothing. At my last IV session, I asked my chemo nurse when I might resume a normal diet. She gave it some thought and suggested that I wait for two weeks after what would have been my next IV chemo date. ‘Hmmm, okay,’ I said. ‘So then I can sit down to chicken liver paté, followed by a huge plate of fruits de mer?’ ‘Maybe reintroduce things one at a time,’ she replied. ‘You know, take it steady’. I remembered my brother being told after he’d had his wisdom teeth extracted that he could resume a normal diet straight away. In his early 20s’ mind this equated with immediately eating a family bag of dry roasted peanuts. His gums have never been the same. I decided to heed the nurse’s advice on diet and seek her input on taking up flossing my teeth again. ‘Ooooh,’ came the reply. ‘Leave that a bit longer. Say, six or eight weeks.’

I’m really glad I asked these questions because otherwise, how would you know? Not for the first time in NHS world, I wondered why there isn’t a handy checklist available for the overworked nurses to hand out – so that you can read it at your leisure and ask questions later if necessary.

Post-chemo life is a work in progress, but I am so grateful to all the nurses for their care and attention, as well as to my fellow chemo patients who have entertained and encouraged me along the way. I am also truly relieved that chemo is over for me.

What’s life after chemo going to be like? Hang on to your pelvic floor and get ready for what the future might hold.

You meet all sorts of people at all sorts of stages of treatment at chemo clinic. There is a man who is there every time I go, and seems to spend all day every day hooked up to one drip or another. One woman I met had been and gone, seemingly forever, before the IV line had even been inserted into my recalcitrant vein. Last time I was there an elderly gentlemen confided in me that he’d been ‘coming for eight years’. Chemo clinic can be encouraging and depressing in equal measure. Once treatment’s done, will you sail off to enjoy many cancer-free years, or will you have a recurrence in a few months’ time? Of course one tries to banish negative thoughts, particularly since people are queueing up to tell you how ‘positive thinking’ has untold health benefits. Realistically you can’t erase thoughts but there is a balance to be struck: an acceptance that cancer and thoughts of it are likely to be the subtext of your life now you’ve had it. It’s a bit like the death of someone you love: you’re never going to forget that person but as time passes the pain diminishes and the joy of having had that person in your life resurfaces. I’m sort of hoping that’s what will happen for me post cancer treatment. Don’t get me wrong, I’ve not lost my zest for life – in fact my appreciation of it has probably increased – but cancer has certainly been a dominant presence since my bowel cancer diagnosis in October 2015.

Three things started me thinking about how life will be when I finish chemotherapy. First, my final cycle of chemo (that’s number eight of eight) starts with an IV infusion (infusion makes it sound like a nice cup of tea; it isn’t) this Thursday (21st July). Woo hoo! Second, I found myself asking my husband ‘do you think I’ll ever feel like me again?’ I meant mentally as well as physically: chemo and cancer do such weird things to your sense of self and your perceptions of your body. Finally, an article earlier this month by a fab young woman, Laura Regan. Laura, a former head girl of a local school here in Berwick-upon-Tweed, was diagnosed with cancer as she started her degree. You can read Laura’s words in Huffington Post here and check out her blog here. In looking towards life after cancer treatment, I have come up with five things that may help with the uneasy transition from cancer patient to (I hope) post-cancer patient.

  1. Face the fact that there will be fear: while you’re in treatment, no matter that it’s pretty ghastly, you have a strong connection to the medical profession: you’re like a work in progress and you feel people are keeping an eye on you. But I remember the words the oncologist said as I started chemo: ‘Once you’ve finished with us, we throw you back to surgical’. I’m guessing that means as long as my post-chemo scan is clear, I become a name on oncology’s books rather than a patient. I’ve slightly mitigated against this by agreeing to go on to the Add-Aspirin clinical trial. This means I keep contact with the oncology unit for five years and, hopefully, contribute to better treatment for future cancer patients. Meanwhile the surgical team will no doubt be calling me in for regular check-ups. Groan. That’s more cameras up the bottom, and more drinking ghastly ‘emptying’ fluids. These drinks make you feel like Dumbledore in “Harry Potter and the Half-Blood Prince” when he drinks the Potion of Despair. But, hey, it’s to ensure you’re well, so suck it up. Literally.
  2. Start doing things that you used to do but put on hold: this is a tough one. I am fortunate because I have no financial worries and I have a partner who has been superb at supporting me and gentling me through. Many people have to try to (or choose to) slog on: working, looking after small children on their own etc. Back in November, I stepped down from all the committees I was on, stopped writing my column for the local paper and the various other bits and bobs of writing and reviewing that I’d been doing, and I pretty much stopped socialising (this was practical, too, since when you’re on chemo there’s a constant fear of getting infections and viruses which will set you and your treatment back). I continued trying to run the home and be a mum to my teenager and I opted to stick with my Open University module which I’d just started. I am so glad I did: what a sense of achievement to successfully complete that module! But I realise that a lot of the time during this year I have been, not filling in time exactly, but sort of waiting. Waiting to see what happens, waiting to see how I feel after treatments, waiting for inspiration, for energy… This has taken the form of activities such as little sewing projects, pottering in the garden (you should see my lettuces!), and volunteering one afternoon a week in the fantastic HospiceCare Northumberland Wear & Care shop (something I intend to continue doing). Then it dawned on me how hard it was going to be to re-enter the real world. So, despite exhaustion and an overwhelming desire to sit on the sofa watching Netflix and eating crisps, I’ve started committing to things. I’ve been writing a few pieces for online local paper Voice of the North; I shall be blogging for the Berwick Literary Festival in October; I’ve gone out to a party or two and fought the urge to antibac my hands and cheeks every time someone moves in for a hug – at least until they’ve moved on!
  3. Consider how you’ll deal with body changes: I’ve put on weight since I started chemo: a blend of steroids and comfort eating. Food has always been a great love and in many ways I’ve been fortunate to keep my appetite and not to suffer greatly from nausea. In fact, cooking delicious meals has been another coping mechanism for me. I’ve tried to keep walking and getting out in the fresh air (see gardening above) but jogging, tennis and the gym have felt a step too far, and I’m not a big fan of swimming. So, like naughty twins at bedtime, my fitness and waistline have disappeared. Considering all that’s happened in the last year, these seem trivial things to get upset about – but that’s real life. Of course there are other things to deal with. I am truly grateful that my drugs mean no hair loss, but I do have sore hands and feet and weird neurological side effects which may or may not completely go. Also, I’m a woman of a certain age. Even before treatment my pelvic floor was no longer the ebullient trampoline of my youth. However, despite rigorous pelvic floor exercises, I discovered the elastic was even saggier than I thought. At a friend’s party, we rather wonderfully all traipsed onto the beach to play rounders at around 9pm or so. Girls v boys. I am notoriously competitive: we had to win. I whacked the ball and set off to achieve our first rounder. All I can say is thank God for long skirts and sand! I am now even more focused on pelvic floor exercises. We did win, though.
  4. Plan (or at least talk about planning) something special: a holiday, a day out, a party, lunch or a night out, a special walk or visit to relatives, time with your partner, your first bike ride. Even though you want to hold your breath and wait to make sure you’re all clear, it’s fun to plan and to look ahead and, whatever the news or outcome post treatment, some of the things you plan will probably be both possible and enjoyable. I decided I would try a gentle knock of tennis during my seventh cycle. I was terrified that it would be too much. In fact, it was wonderful and is now one less thing to wonder if I’ll be able to enjoy again. Nudging myself to reconnect to certain activities even before the end of treatment has been really positive.
  5. Remember how having cancer made you want to let everyone know how much you love them and why? Keep telling them: I also find myself saying pretty much every morning: ‘Hey, I’m still here! Thank you God!’.

“Welcome to the weird and wonderful world of chemo”

‘I still can’t believe we’re going through this.’ The sight of my morning drugs: steroids and Capecitabine (a drug that stops cells making and repairing DNA so that cancer cells cannot reproduce and survive) prompted my 14-year-old’s comment.

‘It’s surreal, isn’t it?’ The voice may or may not be mine and may or may not say the words I think it’s saying.

I am at the point in my chemo cycle where the world is a distant, lost place. A place I observe from outside. I make a mental note to an area that must still somehow be wired to the real me that, if I ever set up a cold-calling scam, pressurising cancer patients at key points in their chemo cycles would ensure a really great hit rate. Personally, I’d sign up to anything in my current state of abstraction.

Six months ago our little family was in manic upheaval. The 14-year-old (then 13) was heading off on a new adventure. For two years my husband and I waged a battle to dissuade her from going to boarding school: there were our principles (already smashed by private school attendance of her three half siblings); the finances; and the fact that I simply didn’t want her to go. After all, what was the point of me without a child at home? But she slept with the prospectus of her chosen school under her pillow for a year. Her persistence wore us down. We dithered and said she could sit the exam. The battle was lost. Or won.

On 2nd September 2015 we took her to the school and agreed that we must put all our misgivings aside and get behind her new adventure. In fact, my husband had begun to relish having a little more time with me – who wouldn’t?! And he’s been granted that, but maybe not quite in the sneaky long-weekend-away manner he’d anticipated. By the time our 14-year-old was on her way home for October half-term, I’d been diagnosed with bowel cancer (if you’re interested you can read more about that here) and we were wondering how we would tell her, her sister and brothers, and the rest of our family and friends.

And now, a colossal operation down the line, we have entered what one of my new cancer buddies dubs ‘the weird world of chemo’. I added ‘wonderful’ because there is something so extraordinary about the effects these drugs have on you that it is difficult not to have a sense of wonder about it all. Who’d have thought a dose of drugs would make your nervous system so sensitive to the cold that you’re not allowed in the fridge or freezer for 48 hours in case your oesophagus goes into spasm? The good news for me is that I’m not going to lose my hair. But I feel almost guilty about that. A chemo fraud, if you like.

Dressed for the fridge

Dressed for the fridge

Post-operation and during the general trauma of being in a ward where it feels as if doctors and nurses are just about managing to remember how many patients they have and what they are in for, you think you’ll never forget the small indignities. The waiting for your wound to be examined by a team that doesn’t look you in the eye; having your urine bag emptied; being asked a checklist of questions about how much you’ve drunk, how much you’ve peed and whether you’ve opened your bowels – and sensing that asking the questions is more important to hospital life than your answers.

A lot of the time it felt like being in a class of 30 primary children with just one teacher. Although in class vomiting or soiling yourself would probably put you in pole position for attention. I don’t blame the doctors or the nurses for this – although just like in real life there are people who work in medicine who are nice and those who are less nice. On the whole I blame lack of resources – particularly human – and an attitude that, I believe, has built up by stealth over many years since management started trumping medicine. As a patient, you always know they want you out of that bed to make way for the next body. You are also keenly aware that you are trespassing in an environment that is not your domain. That sense is compounded by a sort of conspiracy that ensures that you will never feel totally welcome there. For example, people walk into rooms and don’t acknowledge your presence, because you’re in their space not somewhere you truly belong.

As a patient you always know they want you out of that bed to make way for the next body

When nurses stand around your beds in the ward discussing how they can’t wait to be out of there, and how they want to be on holiday now, and how no one wants to go to ward such-and-such because it’s a poison chalice, you know things aren’t quite right. When a night-shift nurse comes into a post-abdominal surgery ward with a streaming cold (the terror of anyone who’s had their belly slashed in two is having to vomit, cough or blow your nose), a relentlessly loud voice and squeaky shoes, you know things aren’t quite right. When you’re told they’ll be ‘right back with your painkillers’ and a couple of hours later there’s still no sign, you know something’s not quite right.

Of course, you are also ill, frightened, and in pain. Probably no amount of care is going to stack up to exactly what you think you need. Even so, I can’t help thinking that if hospital wards were run more along the lines of ‘this is your home during your stay here’ rather than ‘you’re just someone else passing through’, healing and spirits might be improved (don’t get me started on the food). Part of me craves for the return of the Staff Nurse or Matron who – when I was six and having my tonsils and adenoids out – seemed to know exactly what was going on in his/her ward, and who was doing what at any given time.

You are ill and frightened and probably no amount of care is going to stack up to exactly what you think you need

But, as I say, time moves on. And, so do you. Frankly, you’re just relieved to be alive and out of hospital. And very grateful that there are people in this world who are prepared to poke around in areas of your body which most of us associate with graphic veterinary programmes. Not to mention people prepared to work excoriating hours because there simply aren’t enough of them, suffer abuse at the hands of those they treat,  and have their morale battered through the endless political shenanigans that are tearing lumps out of our wonderful NHS. No wonder doctors and nurses are as keen to get home from hospital as the patients.

So. I have left the ward to the next tranche of patients. And the next, and the next… I have all but forgotten the eight weeks spent showering with a plastic bag taped over my wound, the infections, and the scares. Even the shocks and disappointments that felt so huge at the time now gather dust like discarded party balloons. I have entered the next chamber of the cancer machine. I am on my third of eight adjuvant chemotherapy cycles. This treatment is designed to reduce the risk of the cancer coming back. The op to remove the tumour in my bowel was completely successful, but the tumour had grown through my bowel wall and was present in five of 28 lymph nodes – thereby increasing the possibility of some loose cancer cells drifting round my bloodstream and potentially leading to secondary cancer. Knowing that this treatment is incredibly brutal I did ask my oncologist if, in my position, he would go ahead with the chemo. Perhaps predictably he said yes.

I’m grateful that there are people who are prepared to poke around in areas of my body which most of us associate with graphic veterinary programmes

And so chemotherapy begins

And so chemotherapy begins with an IV shot in the arm

We looked forward to the chemotherapy with a desperation that bordered on fanaticism. I needed to be well enough to start it, the sooner we started, the sooner it would be over, then we could put all this behind us….We read about the side effects and wondered what that would mean in real terms. How hard can a bit of pins and needles in your arm be? Tiredness? Nausea? The latter was my biggest fear and the one I have been troubled with least so far. In fact, irrationally, it was a purple blob which appeared on my forehead one post-chemo morning that reduced me to a gibbering wreck. It went pretty much as quickly as it arrived and, whichever way you cut the side-effects, life simply doesn’t let you dwell on stuff too long. There are beds to be made, school trips to stock up for, meals to be cooked, walks to be had, and, yes, laughter and silliness to be embraced.

The husband was galvanised by the news that unprotected sex during chemotherapy was out of the question – unless he wanted some buckshee doses of chemo. We live in a small town where attempts to discreetly buy condoms thrust you back to the mumbling paralysis of teenage years. My husband set off to an out-of-town supermarket and bumped into a friend on his way in. He bought some chewing gum instead, worried that they’d think he was having an affair. I found it a tad hard to engage with his attempts to ensure sex would be possible through chemo. Possible was one thing. Probable quite another.

Nevertheless, there’s a weird paradox about having cancer. You really don’t want to think about it too much. You long to do ordinary things and to have ordinary conversations and be able to continue with ordinary life. But, somehow, you’re thinking about cancer all the time. It’s always there. It has changed your life and it will continue to do so. It refuses to be ignored. And, so, in amongst it all, my husband’s quest for condoms was actually a source of light relief and entertainment for both of us.

You receive dire warnings about your compromised immune system during chemo. You might be struck down at any minute by a dramatic and life-threatening infection. The merest prick of a rose thorn could lead to septicaemia, an infant’s cough could send you to A&E with pneumonia. This does make it almost impossible not to be self-obsessed and cancer-obsessed. One part of you wants to enter a chemo purdah until it’s all over. The other wants to be as normal as possible – grabbing a coffee with friends (when you have cancer loads of people want to have coffee with you – and pay for it: win-win!) whilst trying not to worry that someone with some awful stomach bug sipped from the cup before you.

You try not worry that someone with some awful stomach bug sipped from the coffee cup before you

I always hoped that if I was seriously ill I would be like Cousin Helen in What Katy Did or Beth in Little Women. Suffering beautifully and inspirationally and encouragingly. People do respond well to a positive sick person. Positive sick people are way easier to be around. I guess it’s a two-fold thing: (1) It’s really hard to know what to say to someone who’s going to pieces or moans all the time (and, trust me, well-meaning as it is, ‘It’s going to be okay’, isn’t totally the best choice) and (2) It’s nice to imagine that you would be ‘strong’ and ‘positive’ in their situation. I’ve met inspirational people on their third rounds of chemo, facing unimaginable discomfort and anxiety, who laugh and joke and encourage. And, although I’ve not seen it, I’m guessing that like me they crawl under the bed sheets from time-to-time and have a good sob. Not because they’ve ‘given up’, and not because they’re ignoring the countless blessings they still have despite their illness (yes, you can be fed up and know you have many blessings in your life, and that there are others worse off than you). No. Because, like my 14-year-old, they can’t quite believe they are going through this. And it’s hard. And there’s no right way to behave or deal with it.

Yes, but what cancer is it and how did you find out you had it?

This week both David Bowie and Alan Rickman have died of ‘cancer’ and I find myself desperate to know what cancer they had.

I received my cancer diagnosis on October 14th 2015 in a slightly untidy rather cramped examination room in Alnwick Infirmary in Northumberland. The crumpled bed was a slightly weary witness. Barbara, the nurse specialist, was gentle and apologetic as she explained the situation. I didn’t burst into tears. I didn’t actually feel particularly surprised. The fact that a large polyp had  been found during my flexible sigmoidoscopy (tube plus camera up your bottom) the previous week, and that I’d been summoned from Berwick to Alnwick (30 miles south down the A1) for a face-to-face chat was a pretty strong heads up. But that was me. Everyone will react how they react to such life-impacting news.

I’ve now had plenty of practice at telling people I have cancer. And I know that hearing that someone has cancer is shocking and can fill people with a terror more intense than that felt by the person who actually has the cancer. Telling my two daughters was one of the most distressing things I’ve ever done: I didn’t want them to be hurt and upset. Of course they were. But we wept, hugged, talked (eventually) and are getting on with our lives, incorporating our new guest into the day-by-day as best we can.

I confess that one of my initial reactions to my diagnosis was: ‘Phew. So this is how it’s going to be. At least I know now. It’s not going to be a car crash or a heart attack or….’. This was quickly followed by a strange sense of relief that I’d be gone before my husband and wouldn’t have to deal with clearing out the garage! My Christian faith means that I am also pretty fascinated – excited even – about what comes next… although I’ve since realised I’m not quite ready to find out yet!

Such thoughts were quickly followed by a realisation that the times I treasured most and wanted to revisit were family times. Not once did visiting the the rose-red city of Petra crop up, or swimming with dolphins, or abseiling from Sydney Harbour Bridge. No, it was all about family gatherings (my brother at the barbecue, sister-in-law on pudding duty, husband on music selection, Mum and I with a glass of fizz and loads of laughter all round); it was hill walking and chatting with friends; and, perhaps most potent symbol of being alive, it was lying skin-on-skin with my darling husband, just feeling his warmth and our heartbeats.

I now see that I did enter a cancer bubble. This is a place where you drift through various scenarios in your mind without any of them seeming real: your own funeral, other people’s reactions, the things you won’t have to do now (see garage duty above!). Simultaneously, everything seems brighter and more defined than ever before: the colour in the sky, the way your hands rest on the steering wheel, the sound of someone scratching their chin, the scent of wet leaves. A few months and a major operation down the line, I have adopted a more pragmatic approach: if I am going to die from this, it’s not going to be just yet. So, I’d better get on with my tax return, making a will (both jobs done before the op), and plod on with finishing that Open University degree I started an age ago.

Despite the fact that our ability to treat and cure many cancers has come on leaps and bounds, it still strikes the fear of God into us when we hear someone we know has got it. Part of this is terror that it’s a death sentence for our friend or loved one and part of it, I believe, is a sense of relief that ‘it’s not me’. This is a visceral human reaction – if someone you know has cancer, surely the odds on you getting it must somehow be reduced? I have found that almost the first question many people ask me is: ‘How did you find out? What were your symptoms?’ So, back to the sad deaths of David Bowie and Alan Rickman of ‘cancer’. As I say, I’ve found myself desperate to know which cancer/s they died of. Perhaps this is the person with cancer’s equivalent to ‘what were your symptoms’? There is a sense of relief that comes with the knowledge that the person who died didn’t die of your cancer, just as it’s a relief to learn you don’t have the symptoms that the person with cancer had.

So, just in case you don’t know or haven’t worked it out: I have bowel cancer. One of my doctor friends was angry with me. How, he asked, if someone who is articulate and engaged can ignore/be ignorant of the symptoms can we get the message out there and save more lives?

He has a point. Caught early, the prognosis for bowel cancer is good. And, according to Cancer Research UK, it is the fourth most common cancer in the UK (after breast, lung and prostate) and the second most common cause of death after lung cancer. Of course, now I know, it seems obvious that the symptoms I had might indicate bowel cancer. However, at 53 I’m youngish, I’m pretty fit, I eat a pretty healthy diet. Additionally my symptoms did not happen simultaneously or even in a neat identifiable pattern. No, they were intermittent and, to me, unconnected. It seemed reasonable to suppose that I was having a bit of irritable bowel syndrome here, a haemorrhoid there, and a bit of menopause thrown in. Certainly nothing to trouble the doctor with. And that seems to be the reaction of the majority of those with bowel cancer who, like me, are diagnosed at Stage 3/Dukes’ C (Cancer Research UK cite 24% of people as being diagnosed at this stage with just 15% at Stage 1/Dukes’ A).

For the record, and your information if you would like to know here is a list of what I believe were my symptoms and a link to the Bowel Cancer UK website and NHS Choices and the symptoms they list.

  1. A couple of year ago (or maybe slightly more) I had a strange sort of after-burn ache in my back passage (sometimes quite painful) after I’d done a poo, and sometimes it just seemed to occur a bit randomly (often at night) as if I needed a poo or had wind. This happened a few times but very intermittently and then went away. I put it down to just one of those things.
  2. A couple of years ago I had bright red blood when I did a poo. I thought it was probably a haemorrhoid but promised myself I’d go to the doctors if it happened again. It did happen again but about a year later, so…
  3. About a year ago I very rarely seemed to do poos that were formed. Mine were always a bit sloppy. I put this down to eating lots of fibre and roughage, and the fact that I’ve always had a rather temperamental tummy.
  4. Intense night sweats (I’m a woman of a certain age so, obviously, I put this down to the menopause) which I now know are a common symptom of various cancers.
  5. Last summer this symptom stepped up and I realised I was worrying about it. Then I started to get flecks of blood and mucus in my poo. I looked up bowel cancer symptoms on the internet.
  6. But it wasn’t until I saw Ed Byrne at the Maltings in Berwick in October 2015 and he told a joke about going to the doctors with a long-term case of the squits (you can read about that here if you’re interested) that I finally decided to get myself checked out.
  7. I was exhausted – but aren’t we all? And besides I was still managing to walk for miles and go out for runs and entertain and….and…and…

I did not suffer from weight loss or general abdominal pain.

And for your delectation, here’s a pic of me just before I went into theatre on 9th December 2015.

IMG_2240

I did not look quite so chirpy after the op. Five weeks on I am recovering and hoping to start chemotherapy in the not too distant future.

My journey into Cancer Care starts with an Ed Byrne joke

Yesterday I stood on a threshold.

Stepping over it is the beginning of a journey. Not like the journey my family and I undertook five years ago when we relocated from North London to the northernmost town in England. Nevertheless I shall be joining a well-travelled path, trodden by mothers, sons, daughters, grandparents… and now me. It involves a word that is simultaneously revered and feared a bit like Voldemort in Harry Potter: Cancer.

It started with the comedian Ed Byrne’s visit to the Maltings Theatre in Berwick early in October. The Maltings is a venue our family has treasured since we moved to Berwick and, believe it or not, we did not even know it was here when we first moved! Great research, eh? The Maltings is a place I’ve imbibed (literally in the bar and restaurant as well as figuratively) original drama, art, musicals, comedy, pantos etc., and latterly performances streamed live from the National Theatre and Royal Shakespeare Company. It’s a place I love and that I suspect will come under increasing threat as the ripple effect of austerity bites and funding is whittled away.

Some may say that the arts should stand or fall on their own merits. Why should our taxes fund high-falutin’, weirdy beardy stuff – some of which we don’t even want to see? I say the arts give us a precious space to explore boundaries in ways that change and shape lives; and allow young and old to express themselves, explore who they want to be, and consider how they are going to engage in the world. At the Maltings, for example, a recent packed audience (which included many rows of school children) heard Zdenka Fantlova, one of the few remaining holocaust survivors, share her heartrending story. In the listening, we all became tear-stained witnesses to something that, for God’s sake, should never ever happen again. Back in today’s real world we see and hear vitriol randomly piled on ‘migrants’ and ‘refugees’, partly because they present a very challenging global phenomenon but also because they’re people ‘not like us’. Hopefully all of us will say: ‘No!’ to attitudes that are a cancer of our age.

The arts give us precious space to explore boundaries in ways that change and shape lives

It was a joke that Ed Byrne told about visiting the doctor for a severe case of the squits (Go Ed! that one will run and run…) that prompted me to visit Berwick Infirmary via my GP. One thing my husband hoped for when we decamped from London was a training hospital (the old people’s friend). The Infirmary may not be that, but it’s a damn good facility, peopled by some damn fine staff.  Looking at our area and seeing how far the nearest hospitals are, makes you wonder why Berwick Infirmary isn’t packed. I’d suggest that a decline in users directly correlates with a decline in provision. As funding and services are siphoned off to ‘centralised’ facilities, that’s inevitably where patients are referred to. People in and around Berwick need more than a building, we need ready access to a range of high-quality treatment equivalent to that afforded to city dwellers. That means facilities and trained staff deployed across the region.

True care is something we should all receive, whoever we are and wherever we are

My own trip to the Infirmary involved an intimate procedure (cameras, tubes, need I say more?) which could have been embarrassing and humiliating. However I was treated with understanding and compassion – a person not a case. I was even given a cup of tea and biscuit before I left. This is true care. And we should all receive it, whoever we are and wherever we are.

It’s been a great laugh and privilege sharing my tales of moving from south to north through this column for five years. Now I’m going to take a little time out to pause and concentrate on this new journey.

(A version of this article was first printed in the Berwick Advertiser on 29 October 2015)

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