On the eve of Sam's final round of immunotherapy, Jenny reflected on their journey through the unimaginable in her own words, to help other families that have also been affected by primary bone cancer.
On 1st February 2021, my 20-year-old son Sam bounced, well hobbled, down the stairs excited with his mobile in his hand on speaker. It was the much-anticipated physiotherapist calling us back with the results of his M.R.I. scan. He was convinced that the knee pain he’d been suffering for several months was a meniscus tear. He’d googled it and watched the YouTube videos of surgical interventions.
I’d asked physio colleagues and friends, my retired GP dad and physio mum who agreed this sounded like a distinct probability. I was working as a nurse at the time, and I have to say I was initially quite dismissive as Sam had jumped over a fence and reported hitting his knee on a bed post. I adopted the ‘watch and wait’ treatment pathway.
A few GP appointments, an X-ray which showed no abnormalities, a physio review, a few missed phone calls which Sam ignored as ‘no caller ID’ meant this much anticipated scan had been delayed.
His pain got worse – shouting out in the night in agony, his knee began to visibly swell more and more, and he was unable to walk. Something was most definitely amiss. An astute physio listened to my concerns on the follow-up phone call and agreed to go on a video call to assess for himself. This was on the Thursday – by Saturday we had an urgent MRI at a private local hospital (unheard of in the NHS).
By Monday, Sam was demanding I call at 9am for the results. “This is the NHS; it doesn’t work like that Sam” I said. As expected, no results. At 9.30am we got the call and our world changed forever.
I had my phone to type out word-for-word the conversation in my notes as I'm rubbish at remembering details. "High grade distal femoral bone tumour with intraosseous narrowing infiltration into the inner thigh femoral condyle. Highly suggestive of osteosarcoma," said Mike, the Musculoskeletal Clinical Lead Physiotherapist.The gravitas of that probable diagnosis sank straight in. Most people in their world's would have no idea what osteosarcoma was. Indeed, we now know that approximately only 160 people get diagnosed each year with osteosarcoma; a G.P. is likely to only come across 1 patient with this in their whole career. Sadly, Sam and I knew all too well. Our childminder's son, Chris, had received this diagnosis, had his leg amputated, and devastatingly lost his life to this dreadful disease. Sam was only 8 at the time and I remember him distinctly asking Chris inquisitively about his prosthesis. Chris was such a wonderfully happy young man who throughout his journey engaged with the children running around him and embraced life. After we put the phone down Sam said:
I don't want to lose my leg, I don't want to die.
And so, his journey began.
A couple of days ago I received an email from a patient’s daughter thanking me for helping to care for their dad and get him admitted to hospital when he was rather unwell. My profession affords me the wonderful privilege of helping people in often dire situations to prevent them deteriorating further and rebuild after an acute illness.
Saving lives' has always been my strapline. ‘Frontline’ in the heart of the pandemic. Yet here I am, helpless to save the life of one of the most important people in my world.
So here I am, on the eve of Sam’s last immunotherapy. I feel sick, I’m choked, I’m crying. Sam looks like Sam did before all this started. A tad chubbier and his hair is different. Maybe a shade darker. He doesn’t look sick or ill at all. He has a slight limp when he first gets moving whilst his new bionic knee replacement kicks into action. He feels a bit lethargic at times and rubbish for a day and a half after his weekly infusions of immunotherapy, but nowhere near as sick as he has been.
Today he was talking to a gallery owner he’s designing a website for, and I showed him pictures of Sam in ‘full cancer mode’. He had a double take and was visibly taken aback by the difference and choked up. He said Sam had told him, but he didn’t realise how sick he’d been.I wrote down a list of the extensive side effects he’s endured and couldn’t really believe it: nausea, vomiting, diarrhoea, constipation, abdominal bloating, wind, skin rashes, fungal skin infections, dry skin, eye infections, nose bleeds, anaemia, low mood, lethargy, loss of appetite, mouth ulcers, change of taste, alopecia, rigors, reduced concentration, brain fog, depression, blocked P.I.C.C. lines, clot in his heart, bakers cyst, tinnitus. He’s had 46 different scans and treatments over the last 14 months, with 8 months of the hardest of chemotherapy regimens and a further 6 months of immunotherapy. He was ready to quit but the power of David Beckham’s gifts drove him on. What a blooming trooper.
He has taught me so much about myself and the person I would like to strive to be. His inner strength, power, resilience, positivity in the face of the worst adversity is a lessen for us all to behold. Of course, he’s been blooming miserable and downright angry and rude at times but for most of the time he’s sucked it up and dealt with it. When he was diagnosed, he said “one in two people get cancer and it just happens to be me.”
People often ask, ‘I don’t know how you cope.’ The answer is you have no choice. You need to have hope and a belief that he will conquer this dreadful disease.
We, his family, as a unit have had our load lightened by the support of our amazing friends, family, neighbours, and health professionals. You’ve been our parachute. Throughout the pandemic I witnessed our support structure kick in and it’s been non-stop since. Messages, gifts, thoughts, prayers, hugs, drinks, food: the list is endless. The overriding gift our family and friends have given us is love and friendship. Solidarity. I hope that in your times of need we are there for you in the way you have been for us.
Off we go to bang our gong and start the next chapter of our lives. Heartfelt thanks, Jenny xxx