IT was just a small bump. About the size of a marble, sitting on my son’s left leg, it looked fairly innocuous. I was fairly laid back about it, but my wife wasn’t so sure.
“It feels hard and it doesn’t move under the skin,” she said. “I don’t like the look of it.”
Our son, Jack, was just about to turn 18. At his age, I figured, it couldn’t be anything serious but we thought it was a good idea to get it checked by a GP, if only for his peace-of-mind with A-Levels on the horizon. So off they went to the surgery.
Things took a worrying turn for the worse when they returned. According to my wife, the doctor had conducted an examination and booked Jack in for an X-Ray. “You can go anytime,” he said. “But I’d go today.
Jack tried to find humour in his predicament
“In fact,” he added, looking directly at my wife, “if I were you, I’d go immediately.”
That conversation took place in April 2023 and it was the beginning of a nightmare the like of which we had never experienced.
A few weeks later we were sat in front of Tom Beckinsale at the Freeman Hospital, in Newcastle. Tom is a consultant orthopaedic oncology and trauma surgeon, specialising in soft-tissue sarcomas and primary bone tumours. He’d carried out a biopsy on the bump – which had grown markedly since Jack first spotted it – and now he was telling us that Jack had cancer.
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Cancer. Few other words in the English language are as frightening.
As a parent you expect your children to grow up fit and healthy. There may be the usual coughs and colds, the odd bump and scrape, even a broken bone or two, but nothing that a good night’s sleep and a few days laid up in bed can’t cure. The idea that my son could have cancer seemed… ridiculous. After all, isn’t cancer primarily a disease of the old? Don’t our chances of getting that terrible news increase with each passing decade?
Sadly, it’s not as unusual as you may think. Every day, seven young people hear the words ‘You have cancer’ and the figures are growing. Doctors across the world have noticed an epidemic of young people being diagnosed with a disease more commonly associated with the elderly. Since 1990, cases of cancer in the young have soared by 79 per cent. If the figures carry on growing, by 2030 ten young people in the UK could be given the same devastating diagnose as my son every day.
Jack’s cancer was unusual. His tumour was sat on the bone and hadn’t erupted from within, but that didn’t make what came next any easier. Tom told us Jack would need an osteotomy – the bone in his left leg would be cut out and replaced with a ‘donor bone’; the new bone would be attached with screws and a metal plate. At the same time as the surgical team was doing this, a second team of plastic surgeons would remove skin from Jack’s right thigh and use it to cover the excised tissue from the left. It would be a huge operation, taking all day, and afterwards it would be a long time before he could walk unaided.
As Jack’s cancer was considered ‘high grade’, and thus more life-threatening, he also faced months of gruelling chemotherapy at the Great North Children’s Hospital, in Newcastle.
In many ways, this was worse than the operation which, mercifully, went well. Jack had to stay in hospital as the drugs were administered via as many as three electric pumps into his bloodstream via a central line, a soft, thin, long, hollow tube that is put in through a vein in the chest and goes into a larger vein just above the heart. The line works but brings with it the very real danger of infection and, as the chemo destroys the body’s ability to fight off infections, even relatively minor ailments can be life-threatening.
For us, the worst moment was when Jack developed sepsis via bacteria that had found its way into his line. We saw our son go from complaining about a minor headache, to being on life-support machines in an intensive care ward within a matter of hours.
The chemotherapy brought with it the inevitable side-effects. Jack’s hair fell out, he lost weight, he couldn’t eat and he felt sick. We watched as our bright, smiling young boy became a hollow-eyed frail youth wasting away in a hospital bed: literally, a shadow of his former self.
At our lowest, the support of the nursing staff was crucial.
Teenage cancer patients at Newcastle are assigned their own nurse specialist, paid for by the Teenage Cancer Trust. Amy Spencer, Jack’s nurse, was a tower of strength. She visited Jack nearly every day with offers of help and advice. When he was feeling low, she was there to give him encouragement, when he had questions he could text her anytime day or night (and often did). For us, she was someone who could allay our fears; when the latest symptom presented itself she was on hand to reassure us that what was happening was entirely normal.
The TCT does so much to make life bearable for young people undergoing treatment.
Patients get their own flat screen television suspended above their bed, there are games consoles, a library of DVDs and software, Sky TV, musical instruments to play, classes in arts and crafts, computer animation and physical activities (for those who are up to it). The ward has its own common room, a games area (with a pool table, big-screen cinema for movie nights and those aforesaid musical instruments).
Emma Ogle, who works with Amy on the ward, arranged take-aways (pizzas and burgers a speciality, but nothing is off the menu) which became a boon when Jack’s appetite waned. Together with Amy she organises events (bowling, a movie and a meal) which give patients a chance to forget about the lousy hand fate has dealt them.
All the staff – doctors, nurses, auxiliaries and cleaners – are unfailingly positive and helpful. By the time we finished, Jack’s oncologist, Gail Halliday, felt more like a friend of the family than his doctor. This really does make a huge difference.
As parents we were touched by the many small kindness shown to us by strangers; the visits by professional sports men and women, the volunteers who brought in boxes of presents on Christmas Eve, the music mega star who visited the ward and helped record a single to raise money for the Teenage Cancer Trust.
Because the TCT needs help.
In a sector populated by some huge charities, it has to work extra hard to make itself heard. It is the only charity in the UK funding specialised nursing care and support for young people with cancer. It has a specialist unit in almost every major NHS cancer treatment hospital across England where it funds expert nurses, youth support coordinators and multidisciplinary team coordinators to provide the very best care and support for young people facing cancer.
TCT nurses and youth workers hold a young person’s hand from initial diagnosis through every step of their treatment, and for up to two years afterwards, so that they can recover and live life to the full.
I’m glad to say my son is now in remission. His hair and health have returned and he is looking forward to going to university later this year.
He still speaks to Amy regularly and they meet up once a month.
We will never be able to repay our debt to the doctors and nurses who looked after Jack in his dark hours, but by sharing our story I hope you can find it in yourself to support the Teenage Cancer Trust.
You only get one chance to be a teenager – don’t let cancer take it away.
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