Another doctor's letter

Same protagonists, same setup - but shifts have taken place since the previous letter

Dear Dr A

I was pleased to see you again last Wednesday, 16 October 2024, after more than a year ago back in July 2023, when I wrote this unsent letter to you. I was scheduled to see you last April too, but you were away on the day of the joint hepatology and endocrine appointment, so I only got to see Dr B, the endocrinologist.

Before our appointment on Wednesday, I had a fibroscan, the first in almost five years, although I have had other imaging tests every six months.

The imaging technician aimed the probe on my right flank, sending elastic waves generated by a mechanical pulse and ultrasound. “Hmm,” he said, “interesting.” He pounded some more, to measure and re-measure. After a few minutes, he settled on a definitive score: “11.5 Kilopascals.”

The fibroscan in January 2020 had given a liver hardness reading of 21 Kilopascals: the healthy range is between 2 - 7, with over 12 - 14 indicating liver cirrhosis. On the basis of that result, cirrhosis was diagnosed and later confirmed by a liver biopsy in November 2022.

I settled down to a usually long wait for the consultation, reading Gabor Maté’s The Myth of Normal. On page 459, Maté writes about a patient who ‘miraculously’ recovered from advanced scleroderma. Although her doctor confirmed her medical history and recovery, he “was at a loss to explain.” Would the patient herself be able to explain? I wondered.

At that moment, you came to the waiting room to call me into your consultation room, and exchanged small talk. Dr B and a student doctor, Dr C, were sat along a long desk. I sat at the end of the desk, with you nearest to me. You turned to the computer screen.

“This is a surprising result, the fibroscan. What did you do? How did you do it?”

How long have you got? I thought to myself.

“Well…” I ventured. “I followed the nutritional guidelines for cirrhosis: no salt…”

“Cutting out salt would positively impact blood pressure, not the cirrhosis really,” Dr B intercepted.

“I now avoid undercooked seafood and ultra-processed foods, also NSAIDs. I have also done some other things, but they probably lie outside the medical paradigm.”

The ball of my reply was dropped. Dr C looked at me, puzzled. Dr B took the floor to point out that blood sugar is not managed efficiently and to try once more to persuade me to use an injectable diabetes drug that also has weight loss as a positive side effect. At this point, you obviously switched off, and turned to scroll down your phone: you sat so close to me, I could see you looking at the BBC app.

Your questions must have been a rhetorical way of expressing surprise. You are a high-flying medical researcher in one of the top research hospitals in London. I asked whether you cave come across any other such case; you said that generally cirrhosis is irreversible, but you left it at that.

Both Gabor Maté and Jeff Rediger (I wrote about his book Cured here) mention the reluctance of conventional medical doctors to admit that factors other than measurable ones can in fact make a difference in recovery and healing. When such factors obviously skew the ‘textbook’ progression of a condition and mess up medical statistics, doctors tend to dismiss these cases as ‘flukes’ or possibly even cast doubts on the accuracy of the original tests.

Our consultation ended on a positive, if uncertain, note. You repeated that you are obviously pleased with the fibroscan result, but I sensed some doubt. You said that you will see me again in six months. The same ritual will be repeated, the same disconnection. Dr B will probably despair at my continued inability to control blood sugar levels and my lack of co-operation in agreeing to an injectable drug; you may still be curious about the mystery of the low reading that does not makes sense within the framework of your medical logic, but not curious enough to examine it further; I will still feel unheard, at a completely different frequency from both of you. But I hope I will have come to accept that the way you two doctors view the world and my case is unchangeable. I might find liberation in that acceptance.

Over the last couple of days since, I was thrown by this unexpectedly positive result. Obviously I felt relief, but more than that, gratitude for so, so much.

I am grateful for the original diagnosis itself: it turns out it has been a real gift. Gabor Maté often writes how many of his palliative care patients with terminal diagnoses have said that the illness that is about to end their lives has been the best thing that had ever happened to them. He calls such health and other challenges ‘Foes as Friends’.

Everything within us, no matter how distressing, exists for a purpose; there is nothing that shouldn’t be there, troublesome and debilitating thought it may be. The question thus shifts from “How do I get rid if it?” to “What is this for? Why is this here?” In other words, we endeavour first to get to know these irksome aspects of ourselves and then, as best as we can, to turn them from foes to friends.

(The Myth of Normal p 431).

My cirrhosis diagnosis was the alarm call that finally woke me up, and aspects of my life began to shift. It is difficult to summarise these shifts, but some of them are chronicled over the three-year life of this newsletter.

After our previous appointment in April, my therapist suggested I have a written Gestalt-like session with my liver: I am grateful for my liver which held out for so long and for - apparently - regenerating itself.

I am grateful for the time I was granted to see and learn and read what I needed to, and for the opportunities, the books and the people that helped me along, and the prayers of old students and good friends and dear ones.

And I am grateful to you, Dr A, and your colleagues for doing the best you know, and for showing me - indirectly - that this is not all there is.

This is the second unsent letter to you. I will probably never make the decision to email you the links to both letters, because I anticipate that you will consider them irrelevant and frivolous. But the fact that I’ve written them matters - the process, not the outcome. By sharing them in this newsletter, they may speak to others, or they may not. I don’t mind what happens.