A Life Less Lost: Chapter 10
...James looks like we’ve snatched him from a concentration camp. He’s lost a stone (6+ kg) in weight from his previously slim frame. His skin is grey with hollow cheeks and black sunken eyes. The doctor, who staggers sleepily in to see us, looks too young. She tells us that James is badly dehydrated and very low on potassium. James is hooked up to a drip and by morning is much improved. It takes the greater part of the week to clear the backlog and get his system back into something like working order.’’’
Kimm Walker’s 15-year-old-son James, who is suffering from cancer, receives his first dose of chemotherapy.
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Tuesday 23 July 1996
James has his first dose of chemotherapy, today, at last. He’s frightened, twitchy and unable to take his eyes from the tube, as he watches the toxic orange chemicals travel down from the bag into his body. It makes him feel very tired and he sleeps most of the day. On Wednesday night, he starts to vomit and carries on all through the next day. I fetch endless cardboard bowls, stroke his clammy skin and beg nurses and doctors to do something. Finally, heavily sedated he collapses into a deep sleep on Thursday night, beginning to be sick again Friday morning.
By Saturday, he’s able to keep fluids down so they let him come home. Unfortunately, he’s severely constipated (he hadn’t ‘been’ for three weeks) and by Sunday he starts vomiting again.
It’s late but our GP comes out to our house and tries to help him ‘go’ for about an hour until James collapses from exhaustion.
‘His pulse is stable,’ this kind man says. His youngest son went to nursery school with James. ‘He’s asleep now. I’ll come back in the morning.’ I can see desperation in his eyes.
James wakes an hour later and begins to be sick again. This time he brings up blood so we rush him back to the hospital at 2am, breaking a few speed limits on the way. Thankfully, my dad and his wife, Lynda, have come over to help so are able to stay with David.
James looks like we’ve snatched him from a concentration camp. He’s lost a stone (6+ kg) in weight from his previously slim frame. His skin is grey with hollow cheeks and black sunken eyes. The doctor, who staggers sleepily in to see us, looks too young. She tells us that James is badly dehydrated and very low on potassium. James is hooked up to a drip and by morning is much improved. It takes the greater part of the week to clear the backlog and get his system back into something like working order.
Being young and relatively fit before all this began, and possibly due to the GCSF and the co-enzyme Q10, James bounces back quite quickly. Much of his pain seems to go with the first chemotherapy and the tumour, which is now a very visible swelling on his lower leg, begins to shrink. He puts some weight back on and goes swimming most days to keep his strength up. He begins to lose his hair and asks his dad to shave it off. Seeing James without his thick, wavy, dark hair isn’t so bad but the missing eyebrows and eyelashes take some getting used to.
We begin to appreciate the wonderful team of people working on the children’s and teenage cancer wards. We’re visited by dieticians who provide us with supplements (like Build-up to maximise the calories and vitamins James can take in when well enough to eat), social workers to support the whole family (helping with benefits, sibling clubs, etc), physiotherapists, a liaison nurse to coordinate between all the services (organising a wheel chair, communicating with the school and GP), play coordinators (providing games, videos and the Jolly Trolley full of sweets), teachers to help the children keep up with their school work, psychologists, nurses, porters, cleaners and not least the doctors and consultants. The Macmillan nurse sits quietly beside me, unrushed amidst the hustle of the ward, and lets me talk out all my fears and concerns, bringing huge relief by just listening.
The paediatric oncology unit is part of a university hospital so quite a few of those responsible for James’ care are students and, along with the other more experienced people, they can and do make mistakes. So far in the course of his treatment, we’ve been to six different hospitals. We begin to realise how important our role in James’ care is. We are the one constant throughout the process. I begin to keep a ring binder full of the notes we take, information given to us from various bodies, drug schedules, phone numbers, maps and anything else that seems significant. It’s a tiny measure of control, a step away from victimhood.
*
In September 1985, James started ‘big’ school. I should have been thrilled at the way he skipped off for his first day without looking back once. After all, we wanted him to be a confident, happy, independent person. And part of me was glad for him, but a big part was heartbroken that he didn’t seem to need me anymore. I could feel tears welling up.
Suddenly, our very wise doctor’s wife invited all the new mums to her house for a Tupperware party. She’d just seen her third and youngest child enter the next phase of his life and understood what we were feeling.
The thrill of meeting James, with open arms, at the end of that day and listening to his excitement was tremendous. I was still needed, it was only the role I was allowed to play that had changed.
School and its attendant germs resulted in James developing rather a lot of chest and throat infections. There are some things you pray your children won’t inherit but it seemed we shared a susceptibility to tonsillitis. Our doctor told us he had something called ‘exertional wheeze’ and gave him a spinhalor. Increasingly it became apparent that this wasn’t enough and the doctor put him on the waiting list to have his tonsils out.
Just before Christmas, James was called for his tonsillectomy. I was terrified. When I was thirteen and new to the neighbourhood, I had been shown the house where a boy had died having his tonsils out. I couldn’t escape from that haunting memory.
I tried to put a brave face on for my son. We read, talked and played until they anaesthetised and wheeled him away into theatre. I waited in the overly heated room, too anxious to eat, with the parents of three little girls, also in surgery for their tonsils. The girls all returned to their beds, awake and vomiting but safe. Time ticked by and no James arrived. When finally he returned to his bed, he was still unconscious. My fear mounted with each passing moment. At last, just as his eyes fluttered open, I was completely overcome with relief and passed out.
I discovered, once I’d recovered from my embarrassment, that the girls had been given different drugs to James so had responded differently. My son wasn’t sick like the others but he did develop an infection, which left him unable to eat without pain or sleep through the night for ten days. Whilst the operation did reduce the number of throat infections and antibiotics James had to have, it didn’t solve the fact that he had mild asthma and rhinitis and needed to use an inhaler throughout his childhood.
