Cancer – there, I said it. According to the most recent research reported in the British Journal of Cancer, over half of us under the age of sixty-five will be diagnosed with cancer at some point in our lifetime. If you manage to dodge this bullet there is a significant chance that you will know someone who has cancer, and that some may die from the disease. I meet both the former and latter criteria, witnessing both my wife and mother-in-law succumb to this bastard of an illness. Yet, even in the face of these daunting statistics, there are reasons to be cheerful since cancer survival rates in the UK have doubled over the last four decades, and around half of diagnosed patients survive for more than ten years.
So why do I still struggle to actually say the word without a convenient slang term to fall back on, as emphasised by the choice of title for this piece? If I am honest it still scares me, and I have found it one of the most difficult subjects to talk about. For me it even eclipses death. I guess that many of you reading this will also struggle to comprehend what a sufferer will feel like unless you have trodden the same path. Having said that, both of my personal experiences of cancer were different, and it wasn’t until I was in the eye of the storm that I realised there are in excess of two-hundred types.
Because of the colossal emotion and daunting statistics, I had decided to file away this enormous disorientation, preferring the convenient comfort of the mantra, “It may never personally touch me.” But who am I kidding? A coin toss away is hardly a satisfactory statistic. And if I was lucky, what about those people, including my friends, who weren’t? Didn’t I at least need to better support them, rather than hiding behind a pathetic synonym? Nonetheless, there were many reasons to procrastinate. Until I met Tina.
I’ve known her as a work colleague for a little over two years. Elegant, vivacious, confident, and a match for anyone, especially any pompous blokes who would dare berate her. We quickly developed a professional relationship. COVID-19 couldn’t chip much away from her character even though our association became virtual, via Zoom and Microsoft Teams. Then she disappeared for a while and news started to filter through that her enforced sabbatical was health related. Sometime later it was confirmed that she had cancer. The WhatsApp group messages invariably carried the usual platitudes. But then, what can you say to someone with cancer? Or more to the point, what should you say? Better to hide behind cliches and what we British folk tend to excel at – stoicism – metaphorically doffing one’s hat in the direction of confusion, contradiction and on this occasion cancer. When Tina eventually appeared on the virtual meeting screen I assumed her headgear hid one of the consequences of her cancer, or perhaps the treatment. I had heard of chemotherapy, but I didn’t really understand it, and wasn’t even sure if Tina was undergoing this type of treatment. Emboldened by the fact that she knows I am a feature writer, I took a deep breath, and broke the impasse by asking her the question, “Can I please write about you and your cancer?” Tina simply replied, “Yes.”
What type of cancer has chosen you?
Tina responded with an air of pragmatism that immediately calmed my nerves, since I didn’t know exactly how this interview would go, “Ovarian cancer chose me out of all the other bods it could have.” She smiled momentarily, no doubt guessing that she had surprised yet settled me at the same time. Tina continued, “However, it took a scatter gun approach. Not confining itself to that organ and its friend across the uterus it also decided the ‘Hey, WTF approach’ was a good way to go! So, ovaries, cervix, fallopian tubes, uterus, and omentum were all removed.” At this juncture her rendition was more akin to an edgy, alternative comedy routine where the holder of the microphone teases the audience with other body parts. Tina didn’t disappoint, “Whilst the surgeons were at it they discovered some spots on, but not inside, the bowel, small intestine, rectum, and pancreas. Apparently this is good, and reasons to be cheerful!” Not knowing whether to chuckle, smile, look down or shuffle papers at this point, I decided on the former. Whatever cancer has taken, her glorious sense of humour is fully immune.
Concluding the tour of her lost organs, “Lumps of those were removed, reconstructed where necessary and for good measure, and the spleen was jettisoned. Abdominal lymph nodes retained. Oh goodie! I lost ten kilos and was on the operating table for nine hours.”
How did you discover the cancer?
“Sitting for many hours as you do when reading documents, scrutinising reports, answering the phone etc., you do tend to lean over your desk. At least I do. And I was getting pains in the waistband area of my jeans.” Reflecting on my own aches and pains, some more regular than others, I wondered what the ‘Fuck, this is serious point,’ was? Tina picked up on my unease, “When you get to a certain age the body has a habit of sending aches and pains intermittently. Not hideous – ones that you can live with – until, that is, you can’t. It’s when the pain shows on your face and a colleague points out the fact. So, after a few months I went to the doctor and had the bloods taken. The result was I had a CA125 reading of 130. Normal is 35. CA125 is the ovarian marker.”
What is your prognosis?
With typical practicality Tina summarised her immediate journey, “Fifteen months of immunotherapy infusions and tablets for three years could double my life expectancy. No one actually says what the prognosis is, so goodness knows what life expectancy is. No one wants to put their neck on the block.”
I am pretty sure that there is a statistical table in existence somewhere that is the cancer equivalent of the bookie’s odds checker, but neither Tina nor I had much appetite for figures. She smiled, “Who knows actually anyway – all we are told in a jovial manner is it’s gonna get you some day if you have it. Sword of Damocles hanging by the hair. Look over your shoulder for the rest of what God has given you. Any ache or pain, every ache or pain, could be the overture to the legacy. It’s what you have to live with.”
Given that Tina’s sense of humour was still fully functional with great dollops of delightful frivolity splattered upon my face like a typical custard pie routine, I am glad to report that her optimism was in overdrive too. “One of my friends is in remission after eight years – another, eleven years. For them, good news, however my age may limit the expectancy because of course they developed it at a much younger age.”
What is the treatment?
“An op. generally, and chemo. I had six rounds of chemo. However, treatment depends on the cancer and your strength.”
“First you have your bloods taken to see what the magnesium content is, how your platelets are, what the cancer marker is, and how bones, bile, and liver are doing, and a bundle of other hidden little gems, and those readings will determine whether the next round of chemo. can go ahead.”
“If your bloods have indicated that your haemoglobin is not where is should be you will be given a transfusion. I elected to have one as my legs and muscles were aching – a by-product of the poison. If magnesium is low there is an option of chewable foul tablets or sachets to mix with water – equally foul.”
“The first session you are in receipt of twenty-five vials and needles for daily injections for thinning of the blood; the following sessions – your ‘au revoir presents’ – consist of two bottles of anti-sick to be taken for, and up to, three days with meals and any other meds your treatment requires.”
“I had two lines of chemo. lasting five to seven hours all-told every three weeks. Coffee/tea and biscuits, sandwich lunch with fruit, all provided in the fantastic St Luke’s in Guildford – the premier location in the South-East of England for treatment.”
“The chemo. while killing off cancer cells, also kills off the good stuff like the bone marrow. I had to give myself subcutaneous injections of some stuff to bolster the haemoglobin. These injections are not like those of the pierce and pop type after the first round of chemo. to thin the blood. These are the slide under the subcutaneous fat type. Well, for heaven’s sake! I’m not a nurse! I completely bogged up the first one.”
Even Tina’s dose of humour at the end failed to lift my gloom. This process was truly heart wrenching.
How does it affect you physically and how does it make you feel?
“From July to the back end of October I had to live like a hermit, not only due to COVID-19 but also being vulnerable to all sorts of infections as the chemo. affects susceptibility, and I don’t have a spleen. I have to take four tablets a day for the rest of my life. Not a big ask!”
“The chemo. made me feel pretty weak, but as I couldn’t go to the gym (yeah right!) my exercises consisted of cleaning, dusting, washing floors, and hoovering. Really works for muscle tone. My study is on the second floor of our house, so up and down stairs is a good exercise. It is reckoned that for every hour spent on the operating table it takes a month to recover from the operation.”
In true form Tina couldn’t resist, “If I had company, it was in the garden, and I sat well away from visitors. So, my semaphore came in handy!”
Diet was a disaster zone too. “All I got sent were documents to say what I should be eating. But not saying why. You can eat marshmallows. Wowser! I didn’t eat them before I was ill, why would I eat them now? I got cross. I worked out fish loosens you and bananas tighten you. I’m sure you can work that one out!”
“Sleep is a catnap only – with a twenty-minute doze and then up again to visit the bathroom. And some nights nothing. Lying awake. Some people, I believe, have riotous or erotic dreams. I thought of burgers, pork pies and gherkins, sponge puddings and hot jam and custard. And I could smell them too! Apple crumble. I got some lovely apples and made a crumble adding custard and spent forty-eight hours in the en-suite. That’ll teach me!”
“Chemo. brain has to be reckoned with. Thoughts and words are not necessarily in tune with each other. If I call you by another name – hey that’s affection because I could ignore you!”
In defiant mood Tina exclaimed, “I could feel like a victim and let cancer define me – or tell it to bugger off – I’m busy! And I don’t care that my hair has fallen out. I’m not drying it for forty-five minutes!”
“The night when we got back from my first dose of chemo. I could smell burning. I asked my husband if he’d left the hob on. I discovered the burning was me – it was the poison that was pouring through my veins.”
Then with slapstick timing Tina turned to the constitutional heart of British humour – the bottom!
“Diarrhoea or constipation? That determined my diet, and as I had a bowel reconstruction and a lump of rectum removed, it was a change of diet on a daily basis. Night sweats. Muscle and bone pains. Cystitis. Runny nose. Eye pressure and change of shape of the eyes. Photophobia. Numbness in toes and fingers. Pins and needles in toes and fingers.”
What annoys you the most about your current condition?
Tina’s composure changed. She looked reflective and I instinctively knew that this account would perhaps be devoid of flippancy.
“I feel deprived. I lost a whole year of interaction with grandchildren and sons and their wives. I felt jealous when people were going on holiday. I couldn’t leave because of the three-weekly chemo. cycles and having to be more than careful due to ‘vulnerability.’ ‘Hi there’ from one end of the garden to the other. ‘Hope you are well.’ ‘You what?’ ‘Yes, its three o’clock.’ Oh, for pity’s sake!”
“What annoys me is that some doctors are brutal in delivering their findings after the ‘bloods’ or scans results. When giving me the results of the initial scan the first doctor said: ‘You have cancer. It is everywhere.’ Well thanks mate! Well delivered!”
“After each one-to-one with the doctor from the oncology team I find I have something else they didn’t tell me about – like a dodgy lymph node in my neck; some in my abdominal space; fluid around my pancreas.”
How do others react?
Tina smiled broadly and announced, “My five-year-old grandson confidentially told his six-year-old counterpart, ‘Nonna has to wear a wig because she is ill, and her hair has fallen out!’ Bless him! They still treat me in a very gentle way. I wish for the shoving and pushing and running around with them again. They’ve put themselves at arm’s length. I miss them.”
Husband Bruce was deserved of an MBE (Maintaining Brilliant Environment). “I was in too much pain, but he organised it. Amazing man. I can honestly say I wouldn’t be here if he hadn’t been in charge for the first month.”
Following this touching disclosure, she seamlessly returned to comedy, “Friends ring and ask for news. Do I want to bore them with ailments like ‘Oh I’ve got piles now – bit of a pain but hey that’s high fibre for you!’? So, after ten nano seconds I reverse the conversation. I’m asking what’s it like on the outside?”
I was keen to understand what dialogue she loathed. Tina simply replied, “Tumour. Cancer. They apply to others not me.”
Asking her how she would prefer people to react, Tina didn’t mince her words – “As though I have a cold. Be themselves. Please, no unctuous tones! My spirits lift when I see and hear people laughing!”
Why are you wearing a headscarf?
No sooner had the words left my mouth than Tina dismantled my obvious awkwardness. “Because my flipping head is cold! My hair has fallen out due to the chemo.” She continued, “Once the hair is gone – and I had lots of it – the pate is vulnerable to the seasons, and the head loses a huge amount of heat.” There – that was me told!
What piece of advice would you give someone else who finds out that they have cancer?
Tina drew a gulp of air and exhaled. “You are you. Ask the difficult question: exactly where is it located? Is it a tumour and how big? Should I have some chemo. first, then the operation, then the rest of the chemo.?”
“Ask reasonable questions of the oncology team – detailed information from the bloods. Don’t be content with ‘they’re fine.’ What are? What is the norm for that reading? What did it look like last time? It’s your data and you are the data subject – it’s your information. If you have had scans – likewise, ask the searching questions.”
Her practicality knew no bounds as she confidently declared, “Get a ‘buddy’ on the oncology team. I have a lovely nurse who came to get some samples from me whilst I was undergoing the chemo. We struck up a nice little relationship and she is my go-to – by email – if I have a problem.”
When I embarked on this investigation, I was expecting a roller coaster ride, with significantly more dips than exhilarating highs. My conversation with Tina emphatically turned this notion on its head. Sure, our time together was poignant, but I couldn’t help thinking that Tina had an exclusive comedy routine in the making. The most important learning for me was to cut the crap and engage with cancer even if the initial narrative may be clumsy. Each cancer is different, and every person is unique. Tina’s testimony was about hope over adversity. Living in the moment eclipsed longevity, even if discomfort was a constant companion and physical changes could be major.
The last words have to be from my incredible friend. “This has been a cathartic exercise. I’m bored, tell you the truth, with this cancer thing. I have had a glass of Cava – my favourite after Piper Heidsieck – the first taste of alcohol in a year. Cheers!”
© Ian Kirke 2022
Title photograph by National Cancer Institute on Unsplash
All other photographs reproduced by kind permission of Tina McKenzie-Boyle