The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving drugs
We had spent a glorious August day high in the Picos mountains in northern Spain, whizzing by cable car to the 1,800m peak of Fuenta De from where we looked down on eagles and vultures and only then told the kids that they were going down by foot.
It’s a beautiful nine-mile hike through the lunar landscape at the top, through wide valleys grazed by goats, then a zigzag down a steep hillside and along a woodland stream to the cable car station.
Back at the guesthouse I showered off the dust, stood in front of the mirror and noticed for the first time the swelling on the left side of my neck. Was it a bruise from the rucksack? Who was I kidding? I knew straight away that my cancer, which had been in remission for more than five years, was back.
It’s a strange experience having what some refer to as a “good cancer”. You feel you shouldn’t really talk about it much, or complain, or let your fear show. After all, this isn’t cancer of the stomach or the lung, nor breast cancer requiring a mastectomy nor, the worst of all in my view, cancer of the pancreas, which took my mother’s life in 1999.
My cancer is altogether quieter, less obtrusive, less dramatic. It is called chronic lymphocytic leukaemia (CLL) and manifests itself in the proliferation of cancerous white blood cells in the bloodstream or in bulky lymph nodes around the body.
CLL is strangely little known given that about 3,500 people in Britain are diagnosed with it every year. Most patients are men and 60 per cent are aged 70 or over. In many of those older patients the disease progresses so slowly it is almost indolent and they may never require treatment.
That large proportion of people who are untroubled by the disease is one of the reasons it is known as a “good cancer”. One locum GP told me at about the time of my diagnosis that I needn’t worry too much — it was just “a little touch of leukaemia”. I was furious. CLL might not be the most aggressive cancer, but it has a huge impact on patients’ lives and for some it is still a killer.
Another reason for the “good cancer” label is that there is a prolific and exciting search for a cure that is already producing new treatments that also hold out hope for other cancers.
Sean O’Neill in August 2011 with Danny, 3, and Lily, 1Sean O’Neill in August 2011 with Danny, 3, and Lily, 1
There is a shift away from the scorched-earth approach of blasting the bone marrow with chemotherapy, to targeted drugs that seek out and attack the cancer cells. There are pills that are enabling disease management — keeping the cancer at bay rather than seeking to put it into remission. These are set to become the standard treatment for CLL, and one drug, ibrutinib, is already widely in use.
I was first diagnosed with CLL in January 2010 when I was 45. The alert was raised in a routine health screening when my white blood cell count produced a reading of 45, way above the normal range of 4.5-11. A few weeks and several more tests later, it was confirmed as CLL.
I was scared. I had cancer. I was going to die. My partner was pregnant with our daughter Lily, my son Danny was two years old and I was convinced I would not see them grow up. I shed pounds as my appetite disappeared, not because of the disease but due to the anxiety that goes hand in hand with it. My nerves rattled and jarred. I remember dropping a bottle on the kitchen floor one night and bursting into inconsolable floods of tears as it shattered.
The shock of diagnosis is exacerbated by being told that the strategy is not to treat the disease but to “watch and wait”. The medical team explain that it is better to monitor (through regular blood tests) and intervene later. Suddenly you learn a lot about platelets, lymphocytes, neutrophils and haemoglobin. You’re supposed to go away, live a normal life and wait.
Slowly I got used to it, I normalised it. We got married (a quick register-office ceremony with two old friends as witnesses), Lily was born, we took a long sabbatical trundling around Europe in a campervan, I took my older daughter to New York to celebrate her turning 16, I went back to work again.
The watching and waiting ended in September 2011 when the progress of the disease was such that treatment became necessary. Too many white blood cells crowd out the red cells, impair the flow of oxygen and threaten vital organs. For the next six months I had chemotherapy: six doses taken in four-week cycles.
Sean with his son Danny in 2017 in the Picos mountainsSean with his son Danny in 2017 in the Picos mountains
The cycle started with a hospital visit for an intravenous drug. Secretly I rather liked this bit, sitting in a huge chair, dozing, reading, watching a film. The rest of the week involved swallowing great clunking handfuls of pills, drinking gallons of water and steadily feeling more tired, irritable and poisoned. Half way through the second week the malaise starts to lift; weeks three and four see a return to something like normal, then it starts again.
It worked. The chemo ended in March 2012 and the following month a bone marrow biopsy — take it from me, a pretty nasty little experience — showed no trace of the disease. Complete remission accomplished — although eight months later I was admitted to hospital with pneumonia, a result of the impact of the chemotherapy on my immune system.
The remission lasted one year, two, three. I stopped counting. The visits for blood tests were now every six months, and I pretty much forgot that I was living with cancer. But CLL never really goes away. The only potential cure is a stem cell transplant and that carries a reasonably hefty mortality risk so is considered a last option.
Then last August I noticed that fat lump on my neck, correctly termed a supraclavicular fossa mass.
There was no need to panic. This is a chronic leukaemia not an acute one. I called my hospital, the Royal Marsden in central London, made an appointment and got on with the family holiday.
Back in London in September I went to have the lump biopsied, a procedure that felt like someone taking a hole punch to the side of my neck. All of a sudden it was real again, and the edgy, nervous fear came flooding back.
I left hospital with a wad of dressing on my neck and went and spent £95 on a flamboyant scarf to hide it — £95 for a scarf! I’d rather have gotten expensively pissed, but we were back in the cancer game again: healthy living, exercise, green tea. Actually scrub the green tea — I drank gallons of that stuff first time round and it is vile.
The biopsy confirmed what I already knew, but there was good news too. There was no “high level transformation” and none of the genetic changes that would have made it more difficult to treat. From day to day I ricocheted between being relieved, almost celebratory, and being haunted by uncertainty.
For years I’d been happily telling friends that living with CLL had become my new normal, but its sudden return was not programmed into that normality. I felt a desperate need to be in exuberant crowds. I needed the vibrant, passionate, physical lust for life of big football crowds and loud gigs. Life felt fragile again and, frankly, my mind was feeling fragile too.
The possibility of going on a drug trial was raised, testing ibrutinib against another new inhibitor acalabrutinib, but the consultants treating me felt that would be intervening too soon. There seemed to be no immediate need for treatment. It was possible, they said, that it might be “several years” before treatment was required.
This good news coincided with a breakthrough on a story I had been researching on and off for nine months: allegations that Oxfam had covered up serious sexual misconduct by aid workers. I was close to bottoming out the allegations and spent the next couple of months doing that. The Times published the story in February, it became a huge issue and made a global impact. It was a frenetic work period and there is nothing like being flat-out busy to stop you thinking about anything else.
By the end of February, as the news cycle moved on, I knew that things were not right. I sensed the disease was changing. I had pain and discomfort in my stomach and lower back, my immune system was low and I seemed to pick up every virus on offer. My local newsagent kept asking me if I was on a diet. I was losing weight.
A CT scan in March revealed that there were large and growing lymph nodes in my abdomen and they would soon start pressing on nerve endings and organs. I would need treatment again within the next three months.
That treatment should be ibrutinib, the first of the exciting new drugs to be made available widely. Nice (National Institute for Clinical Excellence), so often the bogeyman of health news stories, approved ibrutinib for relapsed patients in January 2017. Then, two months later, NHS England’s chemotherapy policy group took the option away.
In an edict to haematology consultants NHS England said it would not prescribe ibrutinib if CLL patients had been in remission for more than three years. It is a decision that has perplexed patients and angered doctors. Personally, I feel that I am being penalised for having enjoyed a successful remission.
Although the drug is now licensed for prescription, deemed effective and good value for money, the NHS is insisting that it will allow its use only within the criteria previously applied when ibrutinib was in the clinical trial stage. It seems to be that NHS bureaucrats have decided that although ibrutinib is in use and changing the lives of blood cancer patients in 55 countries it will continue to treat it as an experimental drug.
The only conclusion I can come to is that it has decided that with an estimated 200 CLL patients relapsing every year after lengthy remissions, ibrutinib is too expensive. The drug costs £55,000 a patient a year (although the NHS has negotiated a substantial but confidential discount with the manufacturer Janssen) and is taken continuously. It is not as expensive as many cancer treatments, but chemotherapy is much, much cheaper.
So, as I approach cancer treatment for the second time, the only offering from the NHS is more chemotherapy. Not the drugs I had first time round, which most doctors think are too toxic to be used twice, but a less effective combination (including bendamustine, a derivative of mustard gas) that is likely to make me more susceptible to infections and will probably work for two years or less and leave me less physically able to resist the disease.
That is why, eight and a half years after I was first diagnosed, I have decided to write about my leukaemia. I have been well treated by the NHS during those years — diagnosed early, treated effectively, monitored constantly, counselled in dealing with the demons — but now that is being taken away.
My doctors are making an “individual funding request” — stressing the consequences of my first bout of chemo, which rendered me severely neutropenic and in hospital with pneumonia — but they don’t hold out much hope. If that fails, I will seek ibrutinib under my employer’s private health insurance scheme but, as someone with a lifelong belief in the value of the NHS, I will do so reluctantly.
I may yet be lucky in my treatment, but not every CLL patient will have that option. The number of people relapsing after remissions of more than three years will grow and it is unjust that the NHS will offer them a second-rate treatment that will shorten their lives.
To be diagnosed with cancer once is terrifying. To learn that it has returned is dispiriting and frightening all over again. To then be told that the NHS will not offer you the best treatment is a kick in the stomach.
Sean O'Neil
Edited by Admin to remove comments on the article from the Times website.
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