I lost my partner to Diffuse large B-cell non-Hodgkin lymphoma
7th Aug 2018
The story of my partner Mark and his battle with the bastard blood cancer that is Diffuse large B-cell non-Hodgkin lymphoma (DLBCL)
I lost my partner Mark to DLBCL 7 years ago. We had been together for 27 years and later this month we would have been celebrating 11 years since our civil partnership, but that bastard blood cancer had other ideas. Recently, I spoke to the good people of Bloodwise and said I would do anything to help the cause of beating blood cancer. ‘Great', they said 'why don’t you start by writing a blog?’ That was weeks ago and only now am I starting to try to write the blog. Not sure why I find it so difficult. I hate cycles and am not that much keener on cyclists, but last year I rode in the Bloodwise London to Paris event. Cycling 500k to raise money somehow seems easier than doing this. But inspired by the many amazing blogs of patients and supporters I have read here I am going to give it a go.
About Mark's journey
Mark was diagnosed in August 2008 and had his first round of RCHOP chemo on his 49th birthday at the Royal Free Hospital in London. The next day he announced to the young doctor on duty that he would like to go to the pub for lunch. This somewhat alarmed the young medic who told Mark that because the tumour was attached to the wall of his heart there was a danger that when the chemo acted on the tumour it could damage the heart wall. This was the first that I had heard about the extensive nature of the tumour and when the doctor said that mark’s specialist had told him about it, Mark responded that he thought she had ‘just been talking about a hypothetical situation'. It was at that moment that I decided I would attend all his consultations with his wonderful oncologist, Kate Cwynarski. The dedication of his marvellous medical team will stay with me always.
Mark was a city lawyer and he never did things by halves and that seemed to include blood cancer. Like all men he was hopeless at going to the doctor and by the time he did the lymphoma was roaring round his body like a demented toddler on a scooter. He managed to confound the doctors as, they literally had never seen a patient as young as him with the cutaneous DLBCL. His consultants asked him if he would go to a meeting of the Royal Society of Medicine where unusual cases were to be discussed. Like everything else in the course of his treatment he took the day in his stride and in his words he ‘sat behind a curtain where fifty doctors came in one by one, said 'thank you for coming, mind if I touch', prodded me and left'.
Mark’s way of coping with the disease was to try to live as normal a life as possible. He threw himself into his legal work in the city and even on chemo days would return to the office and work late into the night. After his second session of chemo he went straight to join his colleagues at the pub, because they wanted him in their quiz team! Unfortunately for him after just under a year of remission the disease was back. This time he was to have radiation, chemo and then an autologous stem cell transplant. In the pre- treatment tests it was discovered that his heart had been damaged by the first round of chemo, his ejection fraction was low, so he had to be put on medication to rectify it. This meant it was almost three months before his heart was strong enough to cope with what turned out to be the horror of the transplant.
Mark was very proud of the fact that the specialist nurse in charge of harvesting his stem cells, said it was the best harvest she had seen in many years.
Up until the transplant, Mark had pretty much breezed through the treatment. I was used to arriving at hospital and seeing him in fine spirits. The transplant was a different story (and why do the patients smell like sweetcorn?). One day he was his normal self, the next day in absolute agony with raging fever and wildly accelerating heartbeat. I remember being sent home at midnight, while the 'patient at risk' nurse was at his bedside assessing him for intensive care. Somehow he managed to survive the treatment and returned to work as soon as he could.
Once again he was pronounced to be in remission and once again the bastard cancer blood cells came back. Only this time they headed for his brain. Nine months after the transplant and after a month of complaining about feeling tired, but refusing to go to the doctor ( why are men like that?) he collapsed at the kitchen table. Luckily his best friend, a consultant at the nearby Royal London Hospital, was with him and immediately called an ambulance. After an initial scan the doctors told us it wasn't lymphoma and he would recover. Three days later they did a further scan, which showed it was in fact lymphoma and this time there was no hope of recovery.
he day after the scan, Mark was transferred to the Royal Free where he'd had his previous treatment. The doctors and nurses who had looked after him earlier couldn't have been kinder to us. They were devoted to looking after him. He was given large doses of steroid and some palliative radiation, which somehow managed to give him back his brain. After a week of not knowing who he was or who anyone else was, not being able to even feed himself it was amazing to see the treatment slowly bringing him back to pretty much his full mental capacity. But there was to be no miracle recovery this time and a week after he was told there was nothing more that could be done for him, he died of complications from the treatment. Two and a half years after diagnosis he was dead. There are those that say that lymphoma is one of the most treatable cancers, one of the better cancers. But there are no better cancers, or good cancers someone is always going to be on the wrong end of the statistics.
The best way I have to honour Mark's memory is to try to help Bloodwise find both a cure and better treatments for the bastard blood cancers. The sad truth is there's been little progress in the treatment of DLBCL since Mark died, but hopefully there is some better news just round the corner. And hopefully I can be some help to Bloodwise in finding that better news.
If you have any concerns about blood cancer, the Bloodwise Support Line is open from Monday to Friday between 10am and 4pm.