“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.
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
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.