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Archive for the tag “chemotherapy”

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.


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.

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