Mum sits across from me, on the bench in her garden which she calls her happy place. Ten months on from finishing cancer treatment, she is surrounded by the flowers she planted during her recovery period. They are all bursting into life now, just like Mum, enjoying their moment in the sun. You’d never guess she was 70, or a cancer survivor. Make no mistake about it though, she’s been through hell and back.
It’s impossible to talk about her cancer journey without setting the scene first. In her lifetime Mum has spent so much time in hell, she may as well have bought a house there. As a child she was diagnosed with severe scoliosis, meaning her spine curved abnormally. Treatment in those days was rather primitive, meaning she spent large swathes of her formative years in a plaster body cast. Try and imagine that. Spoiler alert, it didn’t help.
When she was 28 she had her first round of major surgery. Two titanium rods inserted into her back to stabilise her spine and stop her upper body collapsing onto her pelvis. The operation was a resounding success and the rods did their job. She was spared from a life in a wheelchair, and even managed to take up skiing (of all the sports!)
In time though, two of her vertebrae disintegrated, and her spine fell off the top of her rods. So the surgeon went in again and tried to extend those rods, but this operation turned out to be a resounding failure. All the metalwork then had to be removed and replaced, and by the time it was all done, Mum had endured spinal surgery six times.
Yet here she is sitting before me with her head held high. Looking calm and focussed, ready to talk about an entirely different life changing ordeal with her boy who wasn’t there to witness it firsthand.
She wastes no time in starting, telling me this garden is where she came at 5am every morning when she couldn’t sleep after chemotherapy. To walk barefoot on the grass when there was no point in trying to sleep anymore, no matter how desperate she was.
The cancer came out of nowhere
The cancer “came out of nowhere” she tells me. A growth the size of a grape, on the surface of her right breast. She didn’t think too much about it at the time believing it was a cyst. “Never in a million years did I think it was cancer.”
The mammogram at the Hospital five weeks later told a different story though. Mum recalls the nurses being stoically quiet when she asked them if everything looked ok. Then afterwards being led into a room where she saw a box of tissues on the table and the penny dropped. The specialist wasted no time in telling her, “Well Mrs Durham, you have cancer.” Even without a biopsy she had already made her mind up, it was obvious from the mammogram and ultrasound.
“I wanted to scream and sob but I contained myself” she says with the stiffest upper lip. “I felt physically sick, like I’d been kicked in the stomach. The adrenaline rush was something else.” Faced with this potentially deadly diagnosis I told her that her body had gone into fight or flight mode, an automatic physiological reaction to a terrifying event. The fight for her own life.
The specialist said they would plough on with treatment at the earliest opportunity and Mum swiftly switched to survival mode. This involved immediately buying a suitable wig and getting her eyebrows tattooed on because, “I had no time for self pity!”
On the 17th December, a week before Christmas, Mum had her surgery. The surgeon said he’d get it all, and he was a man of his word. The cancer was gone and thankfully it hadn’t spread to the lymph nodes. It was the outcome we’d all dreamed of and it felt too good to be true. It was.
Imagine being told post surgery that you are totally cancer free and the sheer sense of relief that would roll over you. Now imagine being told 4 weeks later that the aforementioned cancer had turned out to be “aggressive” and was very likely to come back, so you still had to endure chemotherapy, radiotherapy, hormone therapy, the works.
Mum’s cancer cells had been sent to America for testing, and the results weren’t good. They came back with a borderline score of “fast-growing high risk of return”. The oncologist told her he wanted to be absolutely sure and mop up any possible remaining cancer cells in her body. So Mum became one of the unfortunate few people who didn’t have cancer but would still have to undergo the months long treatment that gives you life whilst taking so much away.
Chemotherapy is barbaric
The news “flattened me” she says, “Chemotherapy is barbaric, like medieval torture. You get poisoned in order to get better.” It was her worst nightmare and they hit her with everything. So much they had to lower the dose after the first round.
She likens chemo to being abducted by aliens, “It takes over your body, robs you of your sense of taste and smell, your appetite, hair, nails, even your bone strength. You are totally at the mercy of the poison they put in you every three weeks. Then as soon as you start feeling better they put another load in.”
One thing Mum refused to have taken from her though was her hair. That’s where she drew the line and declared her own war on cancer. She did it by wearing a “cold cap” during her treatment. These are tightly fitting, helmet-like hats filled with a cold gel that you wear during chemotherapy infusions, which freeze the hair follicle to prevent the chemotherapy penetrating it.
That gel is bitingly cold, and causes agonizing levels of brain freeze. Imagine eating six ice creams in quick succession and you get the idea. Most people last around 9 seconds in the cap, then give up. Mum lasted over a minute, despite wanting to throw up immediately. “Maybe I’m vain,” she says. But her hair meant everything to her, so she didn’t just do one cold cap in that first session of chemo, she did six. “I can’t walk past that ward now without getting PTSD!” she exclaims. Mum still lost over 50% of her hair but she is convinced the cap helped it grow back quicker.
A two and a half hour treatment could end up taking 6 hours
The picture she paints of that treatment room is bleak at best. “There were so many people in there, you had to wait for a chair, sometimes as long as two hours. There weren’t enough nurses to come around and change people’s infusions on time, so a two and a half hour treatment could end up taking 6 hours.” One time she was sent home without any treatment at all because they came out with the wrong dose.
Yet anyone you ask in the village where my parents live will say to you that Mum sailed through chemo. No one could believe just how well she took it all on the chin. She tells me now there were good days and bad days, but as treatment progressed almost everyday became horrendous. A vast network of friends offered up their support and even created a Whatsapp group to lift her spirits, but cancer still left her feeling isolated.
“You can't really explain what it’s like to people and a lot of them don’t really want to know because they are frightened of it. No one wants to hear the word cancer, it terrifies them, so you feel obliged to keep it to yourself. I’ve never shown how I truly feel, I learnt how to do that when I was being treated for scoliosis. That prepared me for cancer and taught me, at the end of the day only I can get myself through this.”
And that she did. Getting up every day without fail during her treatment, the same way she did whilst recovering spinal surgery 40 years ago. Relying on routine, rather than support groups, and putting on what she calls “a giant front” everyday to try and maintain a sense of normality despite being in the fight of her life.
Keep calm, carry on, and try to hang on to some of your hair. That was the philosophy that ultimately guided her through six cycles of chemotherapy and ten rounds of radiotherapy. Even when the radiotherapy machines broke down twice, seemingly worn down by their constant use serving an endless line of patients.
Here’s the kicker though, when the treatment finally ended the suffering most definitely did not. Her anxiety about dying simply took on a new face. Looking into the distance tells me, “You weren’t wrong when you warned me about PTSD, I’m constantly paranoid that the cancer will come back, and I often feel like I’m on the verge of a breakdown.”
Cancer started all over again after my treatment ended
The emotion on her face is visible now as she gathers her emotions. “Cancer started all over again after my treatment ended. It never goes away, it takes up residence in your head. Post treatment mental health support is almost non-existent in the NHS. Once you’ve finished chemo and radiotherapy the safety net they provided, just disappears. You’re left alone, tired, and anxious.”
She’s foregone the hormone treatment which decreases the chances of cancer returning though. Her choice, one that the NHS strongly advises against making. The treatment takes 7 years, and Mum is 70. The maths simply don’t add up when you consider the side effects, which include depression, insomnia, nausea, and extreme tiredness. These can decrease over time, but Mum decided to take her chances after experiencing many of them.
Instead she is pursuing alternative treatment methods now, to try and stave off the return of this all consuming illness. The NHS doesn’t offer holistic treatment and she asked the oncologist about alternative avenues they simply told her that even discussing them with patients within the four walls of the hospital was not allowed.
I ask her if you ever really win the battle against cancer. She purses her lips. There is clearly some anger left inside her, even in recovery. She says she doesn’t know what caused her cancer but she knows it can come back. She now wants the UK to adopt more frequent and more advanced testing with more support after treatment. She missed a routine mammogram in 2022 because breast screening was suspended in March 2020 to try to reduce the spread of Covid-19 and to free up resources for the NHS. An seemingly unavoidable turn of events that has left her wondering what if.
Cancer was a test which changed me for the better
Smiling again now though with the sun in her face (shielded by her trademark visor) she says she is looking forward to going on holiday. Having been “to hell and back”, she now plans to go on as many holidays as possible. She says she doesn’t feel short changed by life and, “Cancer was a test which changed me for the better.” Even though she still feels tired and sick almost everyday, her destiny is in her hands and it’s up to her to get out of bed and live her life.
And that she will.
**Mum wishes to say a big thank you to all of the people involved in her treatment and recovery, especially members of the “Soo’s Positive Vibes” whatsapp group, and Twitchy (her husband).
