Post mortem

I write this in tears as I’ve just learned that David Lynch, one of my very few heroes, has died. Fiddian and I watched so many of his films together, as well as the whole of Twin Peaks. I loved that show so much that Fidd even made me a gold shovel like the one Dr Amp has in Twin Peaks: The Return. In the show Dr Amp uses the shovel to encourage his fans to “dig themselves out of the shit”, and I often think of that maxim these days, and of the shovel Fidd made me. In typical Fidd style, he made it extra special, by covering the whole shovel in gold leaf! I keep the special gold leaf shovel on the wall, but I have several less special ones for actual shit digging. Just this week in fact I had to dig the Volvo’s front wheels out of the dirt after I got it stuck on a muddy bit of ground. I love the way that great art can, even in small, apparently silly ways, inspire you to do things in the real world.

The feeling of successfully freeing the Volvo might have kick started what has been my happiest week since Fidd died. I’ve been feeling newly purposeful and capable, after beginning to learn how to navigate life here on my own, as well as juggling travel back and forth to London for my job. Life at the moment is split between my job, managing the house renovation and the apparently endless admin and activities associated with Fidd’s death. 

One of these activities has involved waiting for and then navigating the diagnosis of what caused his death. We received the post mortem back in December. Oddly, it was not that easy to get hold of a copy. A dear family friend in fact negotiated with the coroner to get it to me. I’m not sure why they seem reluctant to release these to family members, especially in cases like this where there was significant confusion (in fact total absence of understanding) about what caused the death, but in any case, I got a copy and we were able to read it and get some answers.

In the Coroner’s defence, I will say that reading the post mortem of your most-loved one is very harrowing. I’ve only read it through twice, and each time I’ve been in floods of tears. This one contained not just the post mortem results but also a very detailed, moment by moment account of what the paramedics observed and did from arriving to leaving on the night of his death. It was like having the experience played back to me from their perspective, and contained moments I had totally forgotten, like how I had struggled to get his trousers onto him. The writer seemed very concerned about the preservation of his dignity, although neither Fiddian nor I were remotely concerned about it given the gravity of his pain and the situation at the time. From talking to others who have been with someone who is dying, I’ve concluded that when it really comes down to it, dignity becomes an irrelevant consideration. At the time I just wanted the paaramedics to save his life, not worry about whether his trousers were on or not.

The actual post mortem was less florid, thank goodness, although perhaps the starkness of it is shocking in a different way. Facts like the weight of his heart (402g) and the volume of blood in his abdominal cavity when he died (2 litres) are things one hopes never to have to read. Nevertheless, I was very glad to read it all, as the chain of events causing his death was in fact, very clear. At some point on the evening he died, his spleen had ruptured, and blood had begun to fill his peritoneal cavity, causing his blood pressure to drop catastrophically and him to permanently lose conciousness. A biopsy of his spleen tissue revealed the presence of non Hodgkin lymphoma, a blood cancer which invades the body’s lymph system and lymph nodes. This cancerous tissue in his spleen is what caused it to rupture.

The symptoms of splenic non Hodgkin lymphoma are almost insanely non-specifc: nausea, fatigue, breathlessness, sometimes abdominal pain, but often no symptoms at all. This type of cancer is very rare (around 700 diagnoses per year in the UK) and the only way to diagnose it with absolute confidence is through a biopsy of a tissue sample. At the time Fiddian died he was being treated for nausea and non-specific abdominal pains, and his white blood cell count was low, but there was nowhere near enough evidence to even decide to begin the process of requesting a biopsy. It was fairly clear from the post mortem that there was absolutely nothing anyone could have done to save him – he simply didn’t have enough symptoms early enough for anything close to a diagnosis. Even after death, it took 8 weeks to conclusively establish the cause.

But although the post mortem gave us the cause, and helped me to stop feeling angry towards the medical professionals who treated him, it didn’t tell us everything. How long had he had the cancer? Were his symptoms and earlier hospitalisations related? Were there opportunities missed to diagnose him during the scans and tests he’d had in spring?

All these questions had been ricocheting around in my brain over the Christmas period. His GP had messaged me just before Christmas to ask if I’d had the post mortem results (yup – the Coroner apparently doesn’t like to share these with GPs either, which either seems like a symptom of an inefficient health service or data privacy gone mad). As there is no way to email documents to my GP surgery, I made an appointment to see the GP in the New Year and printed out a copy of the post mortem for him. This Tuesday was the first slot I could get, and so I shuffled along with my print out and a copy of lots of Fidd’s notes on his health and his blood test results from various places over the previous few years.

The GP and I sat together for half an hour and read through it all and talked it out. His white blood cell counts in previous years, though on the low end of acceptable, were still ok: nothing to indicate cancer. After having heart attack-like symptoms in February he had many tests, one of which showed a nodule on his lung. To investiage that (which turned out to be benign) several scans took place of his entire chest and abdomen, including a PET CT scan in June. That test showed nothing abnormal in either his spleen or his lymphatic system. The GP assured me that if there had been any cancerous cells present at that time, the PET CT scan would have shown it. We also looked at the results of blood tests taken in August, just two months before he died: nothing abnormal at all. In fact, his white blood cell count had improved! 

It was only at a follow up check in September, when some swelling of his left lymph nodes was observed, that there was anything that indicated any potential cancer. And swollen lymph nodes, as most of us know, are a fairly common occurrence for a multitude of infections. Just a few days after that test we were hiking and swimming in Sardinia. Apart from some completely expected tiredness after a busy summer, he was the picture of health.

According to his GP this was a highly rare, extremely aggressive cancer, that arose very suddenly and effectively overwhelmed the lymph nodes in the spleen within a few weeks. When I had told him that the coroner had sent off some tissue from Fiddian’s spleen for testing, he had done some research and found a few examples of splenic blood cancers which had caused very rapid ruptures. But they are so rare he described it as a “once in a career diagnosis”. As I said to the kids afterwards, Fidd was as exceptional in death as he was in life.

As for me, I felt relieved as I walked out of the surgery. Relieved that no one fucked up. Relieved that I don’t need to pick a fight with any doctors or the ambulance service. Relieved that having private healthcare wouldn’t have made a difference. 

I took the dogs for a walk along the cliffs and the sun came out and I saw a beautiful rainbow out to sea that made me cry with a feeling almost like joy. I felt in that moment that it was him, telling me to let it go; telling me that it was ok to move on; telling me that he is still there, somehow.