Fifty days on an NHS ward

Over months of treatment, I have seen the best and the worst of healthcare in Britain.

Photo by Siobhan Doran/Millennium Images

At the end of the Christmas school term, I travelled to my mother-in-law’s to recuperate following what I had assumed was a bad bout of flu. I purchased Cormac McCarthy’s new novels with a view to relaxing. I was slightly concerned that my right wrist and left knee were bruised and swollen, but put it down to the after-effects of a few weeks’ bed rest.

Over that first weekend the swelling around my knee spread up my thigh and became so severe that I had to ask my son to put on my sock as I couldn’t bend my leg. On the Monday I limped to the local GP, where I was seen by a young doctor. He admitted he didn’t understand the cause of the swelling and decided he would do a blood test himself there and then.

The following morning I received a call from the local hospital asking that, on the advice of the haematology department, I go to A&E. After six hours in the packed waiting room, having been seen only for another blood test, I was informed I would be admitted. “Admitted” turned out to mean moved to another packed waiting room.

After a while in that airless space I escaped to a corridor, stealing an uncomfortably hard chair from a nearby office; asked by a nurse how I felt, I said I was OK apart from the pain in my backside. Around 3am, after eyeing up an empty bed in the corridor, I laid down on it, covered my eyes and tried to sleep. A nurse who spotted me kindly wheeled me into a side room.

Around 10am, I was paid a visit by a haematology consultant. She said enough to confirm my situation was serious but would say no more until my wife arrived. When she did, we were told I had leukaemia (a double cruelty for my wife as her father died from the disease 20 years ago).

Such was the doctor’s concern – and perhaps guilt that I had been ignored for 18 hours – that, on a day of ambulance strikes, she managed to arrange blue-light transport to St Bartholomew’s in London. Greeted by the principal consultant and registrar on arrival, I was informed that they had been expecting me 24 hours ago.

I have just returned home from my fourth – and hopefully last – stay at St Bart’s. Since being diagnosed I have spent around 100 days in hospital, 50 at home; four cycles of chemotherapy and a stem cell transplant.

It is one thing to be hospitalised when ill, as I was during my first five-week spell at St Bart’s; quite another having to return for a three-week stint once the chemo had done its job of putting me in remission and I was feeling well. Even when I’m at home, I have to return for weekly blood tests. It is like being on parole.

In hospital, it is the small things one misses: the freedom to walk to the shops for groceries; seeing my son in his uniform before he sets off to school; home cooking. Initially, the hospital meals were reasonably edible but, after weeks of the same menu, I couldn’t bear to look at the food. Knowing it is impossible to maintain weight on the ward, the dieticians encourage patients to drink disgusting high-calorie smoothies.

When I am well enough, I persuade the nursing staff to let me take short walks outside. Other days I make use of the exercise bike in the corridor outside my room in an attempt to maintain some strength after all those sedentary days. I put the Darkness’s Permission to Land on my headphones and measure my fitness by how many songs I get through.

I feel very fortunate to be cared for in a modern, specialist hospital. It was such a relief to be given a private room – drably decorated as it might be – following the chaos of my gurney sleepover in A&E. I only recently came to appreciate that, for me, there was no dreaded NHS waiting list: such was the urgency of my condition that a bed was immediately made available, and my treatment has been uninterrupted. The consultant who has taken on my case has been willing to give his time, despite a crushing schedule, to explain everything.

The nurses see a lot of patients coming and going, but they come to remember you after repeated visits and open up a little: about their own fear of needles, their concerns about getting their kids into a good school. Some take the piss. On some days these are my only human interactions and it means a lot to share a small joke. I have forgiven the nurse who forgot to give me anti-sickness medication before chemo. It did at least prove that the drugs work.

Sadly, even such a prestigious hospital is reliant upon agency nurses. One sister told me that, post-Brexit, the NHS has lost some 40,000 nurses, another that the hospital pays far more for agency staff than for its employees. With a few exceptions, the agency staff seem to be going through the motions and can be gruff. During 2am observations, they knock my bed with their machines to wake me, or simply turn on the dazzling ceiling lights.

Leaving hospital is a great feeling of release. On one occasion, when I was thinking I still had another week to go, a registrar told me that my blood counts had recovered sufficiently that I could go home. I could have hugged her. My wife happened to be visiting and was about to leave; I quickly packed my bag to go with her before they had the chance to change their minds.

I recently discovered that, while they do let you go home, St Bart’s patients are never formally discharged. I have become a lifetime member. As one alumnus said to me with a grin, “Well, they do keep you alive.”