Day 337


The first big batch of bone broth.

All Diana’s preparation comes together and I get the big stock pot bubbling.  The studio fills with the most amazing aroma for 24 hours and the magical rendering occurs producing a golden liquid full of nutrient and nourishment and flavour.

I might become a broth bore.  If you’d like to know more about the benefits of broth click here for a quick introduction.

The broth bible is ‘Nourishing Broth: An Old-Fashioned Remedy for the Modern World’ by Sally Fallon, and a most interesting read.


This lot gets strained and decanted into .75ltr compostable soup tubs and frozen for use later – either by me or perhaps if it comes together by friends in London who might be helping me though the in-patient month at Kings.

Also Cooked.  Me.  Today has been one of the hardest since all this started.  I feel absolutely crap.  Completely weak limbed, stumbling about, my brain a fog and I can’t think, a heavy weight on my chest and it hurts to breath, nose running for no reason, and suddenly very demoralised.  What’s the point of all this?  A great negative wave washes over me and I’m down…

I finally recognise that I am utterly exhausted.  The artificial high of the last 6 days has dropped me – bang – and I struggle to get back up. Bang.

It’s not just the exhaustion, being hyped up on the steroids, the chemo doing its powerful but damaging work in there (I think that chest pain is my tissues complaining) and my over-active mind.  It’s a deep concern about what I heading into.  The Stem Cell procedure on some level freaks me out.

I’ve written to the team at Kings College, primarily about simple logistical things, but I also tack on a letter to be passed to Dr Marcus, and I might as well attach it here.  Reading it will give an idea of what’s making me so tired perhaps, and why even when on the beach in the sunshine yesterday I feel like two people, increasingly schizoid.  I know, we’re all like this at times, maybe to some degree all the time, but this has been getting intense.

Dear Dr. Marcus,

Thank you again for seeing me the other week.  I’m getting ready for the next round and very pleased to be coming to KCH for it.

I do have a couple of questions for you.  I’m both thinking ahead and wondering about what we are about to do.

I’m aware of the trial of Nivolumab in Oxford at the moment, for people who have HL that has come back after an autologous stem cell transplant.  I’m also aware that because I have received Brentuximab in a previous trial I would not eligible for Nivolumab under the current trial guidelines if my lymphoma returned.

I know, I’m jumping ahead a bit, but I’d like to understand whether my exclusion from such a trial is to do with the fact that I’ve failed to respond to a different mab type drug or whether it is simply the need for any trial to have an even playing field in order to assess outcomes.

Does my failure to respond to Brentuximab mean that I would be likely to fail with another mab type drug like Nivolumab?

Nivolumab interests me.  My very simplistic understanding is that the drug is intended to stop the cancer cells from tricking my immune system about what they really are.  PD-1 on my T cells and PD-1L produced by the cancer cells, disarming my immune system.  What an amazing world you all work in!

I think I mentioned to you in passing that my immune system seems to be working very well, despite 8 in months of chemo since April last.  I’ve resisted all but one cold and recovered more quickly than my healthy brother, kissed by the same infectious nephew at the same time, and I’ve suffered and healed a fractured rib and a partial collapse of a vertebra (L2 I think) from separate accidents during this time.  I’m pretty well really, and life has certainly been going on.

As I move towards SCT I can’t help thinking about what is to happen.  The odds of procedural mortality, whilst obviously better than no treatment at all, are stark figures.  1 in 5 for allo and 1 in 20 for auto SCT.  I’ve been looking for understandable comparisons for those sort of odds, and they don’t occur much outside illness and war I imagine.  The closest I come is high speed car accidents or running across a 6 lane motorway.  The Formula One drivers of the 1960s and 70’s faced this range of odds at the peak month of any season perhaps…

What’s my point?  Is there any way for someone with my case history and situation to access Nivolumab to see if it might work, outside of a regulated trial?  I feel that I don’t need a new immune system (and the odds of a donor are slight anyway). What I need is for my own immune system to see the intruders.  I know the answer is ‘No’ of course.  But I can’t help asking.

Many thanks,