Chapter 13: “A little bit of news” / Nexit preparations

20th May

The first email: “A little bit of news”

Dear friends

It’s time for one of my occasional texts. It’s a very, very long one as quite a lot has been or is going on. In fact, as I have found out, it is so long that I am unable to send the message as a text. I’m sending an email instead. By golly, its a lot easier than sending those  long texts. Why wasn’t email invented earlier?

This email ranges from fairly heavy duty diagnostic/prognostic stuff to ‘jokes’ whose funniness depend on where you stand on science vs fluffy-bunny land. If you’re offended by such jokes, then  please skip over them. The email covers pretty much the main things that have been happening in the month or so since I was discharged from hospital. To make it a bit easier to read, I have split the text into sub-headings.

You might want to find a quiet place to read to avoid being distracted by small children, Coronation Street or having a bunjee jumping lesson. There’s also something very important that I say about how you can help me avoid getting an infection and ask you to please at least read this part of the text.

1.Clinical trial

I found out at the start of the week that I’m eligible to take part in a clinical trial at Derriford Hospital. It’s a Phase 2 trial. This means that the researchers already have preliminary results to show that the drugs might be effective but they are only now beginning to measure drug efficacy and to quantify side effects.  It’s not on the scale of a Phase 4 trial. These are randomised control trials involving squillions of patients and they are the final stage of drug testing before decisions are made about whether to make the drug commercially available. Sample size for my Phase 2 trial is relatively small in drug testing terms (n=1, 000 patients).

Having said that, there’s still a strong element of experimental methods with the trial in that the researchers are comparing outcomes for patients receiving three slightly different combinations of drugs. These groups are known as ‘Arms A, B and C’. Those in my arm of the trial (Arm C)  receive the maximum number of types of drug (three) that are being tried out. The three types are two ‘novel agents’ plus a standard chemo drug. Those in Arm C are receiving the same amount of dosage of each of these drugs. Patients in Arms A and B receive a smaller number of types of drug (no more than two). Patients in all arms have the same specific type of Non-Hodgkin Lymphoma (Ie Diffuse Large B Cell Lymphoma) that has been resistant to mainstream treatment.

Novel agents are drugs that don’t work in the same way as chemo drugs . Chemo is a blunderbusses – they aim the gun and hope it hits something. Instead, novel agents target specific cancer activity. In my case, this is targeted at cell activity to stop cancer cells dividing and to kill them; and  targeting the immune system so that it better recognises and destroys cancer cells.

I learnt a beautiful new word on Thursday: ‘apoptosis’. It sounds like it should mean an ancient Greek philosopher’s word for a state of consciousness but it really means cell destruction.

Taking part in the trial is not too onerous. To have the drugs administered by drip, I attended hospital for the entire day on Thursday and I went for half a day on Friday; I attend for the two remaining Thursdays in May and I have three attendances in June. This pattern is repeated every 28 days for 6 months (if I live that long). Plus I take one of the novel agents in tablet form each day. There are the risks of side effects. The most likely ones are those I have faced with previous chemo treatments: nausea, diahorrea, reduced appetite, tiredness and neutropenia.

This is the really important part of the text for you to read. Neutropenia is the lowering of one’s white blood cell count. These cells are part of the immune system and a lowering means my body can’t fight infection. This risks  me getting neutropenic sepsis, a potentially fatal condition. It is inevitable that I will become neutropenic. If I get an infection or  a high temperature when I am, I’ll probably be admitted to hospital where they will pump will me full of anti-virals and anti-biotics; maybe I’ll also have a blood transfusion until I’m out of the danger zone. I have been through all or some of these experience on a few occasions when I was given chemo in 2016 and 2017. It is the risk of neutropenia that you can help minimise: Please, please tell me if you are infectious, think you might be or have children that are. If you tick yes to any of these states; it’s best not to see to avoid me catching something. 

The trial drugs are not designed to be a curative treatment – the best I can hope for is extending life but there’s no way of estimating by how much. This is, after all, a trial the purpose of which is to look at whether it has an impact and by how much. The study is run from Columbia University in the US and is funded by Big Bad Pharma Inc. They’ve probably tested the drugs on bunny rabbits, baby lambs and small, fury ginger kittens.  So some political and ethical issues for me to grapple with…for a nanno second. If you know of any trials with curative potential, please let me know.

You might think I’m a blind slave to mainstream medicine. I’m not. The reality is that mainstream drug development is not without its deceptions and manipulations. The difference is that fluff-bunny medicine is largely anti-science or non-science. Mainstream drug development follows the scientific method but sometimes, in the worst cases of naked commercial interests, the data is selectively used; or there are issues like publication bias; and so on…But fundamentally science is honest and says when it gets it wrong. Sorry, I have a bee in my bonnet about this right now. I’ll stop.

2.Other medical news
Less promising is that my haemoglobin has been on a slow decline which partially explains my extreme tiredeness in recent weeks. One of the haemotologists told me the week before last and on Thursday that the low haemoglobin is probably caused by a small internal bleed. This bleed is happening because the tumour is growing inside my bowel as well as outside it; tumours are fairly weak structures and are prone to leaking blood; blood is lost via the tumour which goes straight into my bowel and then is excreted.

As an alternative explanation, there’s a possibility that the low haemoglobin is simply a symptom of cancer. Ultimately there’s no way of telling which of the causes it is – but  the doctor that he thinks it’s most likely to be a blood loss problem given other symptoms. It could get worse and we’ll only know this by careful monitoring of bloods.

The only interventions that are possible are blood transfusions. I had one of these two Friday’s ago, on Thursday I was told that the haemoglobin count was higher than when I had the transfusion but that it had fallen very slightly again by Friday. The research nurse didn’t seem unduly concerned by the small drop. Depending on next weeks haemoglobin count, decisions will be made about more transfusions. The doctor said that potentially there could be as many as one every two to four weeks depending on blood results.

3.Research
The really exciting thing is that I have pulled together a high end research team from four universities  (Exeter, Plymouth, Oxford Brookes, Imperial) to apply for Macmillan research funding of the study that I conceived of last year. This is the study of whether and how patients being told by their clinicians about their prognosis can benefit their well-being. It has now evolved into also examining how we can use this insight to improve the way clinicians communicate with patients about prognosis. You might remember I first sketched out the idea in this blog: https://blogs.kcl.ac.uk/socialcareworkforce/2017/10/25/is-donald-useful/

So we have an excellent team in place to make the application and we are making very good progress with it. That we have got to this stage (forming a research team, starting the application form, finding the literature to shape the project, consulting patients and so on) has been a remarkably satisfying experience and it has done a great deal to help counteract the other rubbish stuff that has been going on in my life.

Getting this far has been made possible by the astonishing support, encouragement and work from the right people in the right places who have bent over backwards to get things moving. The big thanks from me go to Claire (Southampton), Lee (Macmillan), Eila (Oxford Brookes), Mary (Imperial), Richard (Plymouth), Rob (Exeter) and Rose (Exeter).[Note to research team: I had to closely question and probe the doctor for him to give me some (most?) of the information he’s given me in the last two weeks about the nature of the tumour (including where it is growing); the cause of the blood loss; its potential trajectory; and some of the stuff about how the novel agents work. It took effort. A small vignette of what doctors do and don’t spontaneously disclose, of that which patients might want to know, the effort required for them to find this out and how helpful for patients o know when they are told.]

The deadline for the first stage application is tight (4 June) but we’ll make it. The second stage application gets made in September, final decisions about who gets funded are made at the end of the year; and successful applicants get the dosh in January 2019. So I’ll be brown bread by the time anyone knows if the application has been successful. But that doesn’t matter. If the funding is awarded and the project gets completed, I’ll view it from Planet Blob as my modest legacy. If this doesn’t sound too sanctimonious, I’d like to think that I will have played a hand in producing something worthwhile and of benefit for cancer patients; it will be something creative and positive to have come from an otherwise bad experience.

4.Creativity
I have also been very busy in other ways. I have created some family heirlooms for my nephews; I have been making plaster casts of a relief carving that I made earlier in the year (thank you Isabel!); with Joe [Josiah] and Floyd’s help, I’ve sorted through many boxes of books and some of my memorabilia that has been in storage to give away to friends, family and charity shops; I have spent some good times with friends and family; I have spent some very nice time on my own; I have organised a family barbecue in early June. Finalising my financial and legal affairs is almost but not quite there after extra-ordinary delays by various bureaucratic machines. This is taking up a lot of my time which is time I don’t really have.

Another creative activity is that my nephew Joe is setting up a web-site or something like that as a repository for all the global texts I’ve sent out in the last 18 months or so. The idea is that it can be read as a narrative of a particular cancer story which maybe of use to someone, somewhere. It’ll also have other pages for Nexit photos, maybe other stuff I write and other people’s comments. Does anyone with good IT skills fancy helping Joe out with moderating it (if that’s the right word) after it’s been set-up? That is, helping to put up new content and policing the comments page. It won’t be too onerous but it’ll help Joe out if he’s away or (unlikely, I know) if lots of inappropriate comments are made. Please let me know if you’d like to help [Editor: yes please…].

5.In general
I saw a report for the first time this week from one of the consultants to my employers. It’s the first time I have seen my 3 to 4 month life expectancy written in black and white. The report is dated 7 March. (But please remember, this number is an average. It is not a cast iron prediction).

I don’t have a naff bucket list. My over-riding wish is to be creative and positive; and to be as sociable and solitary as I choose. I’d like to have these things without letting symptoms, medical complications and the stress of the prognosis get in the way too much. The biggest issues have been tiredeness, pain that my routine analgesics don’t always manage; dealing with bad or disappointing medical news; and not always handling the prognosis with equanimity. So please forgive me if I ever come across as tetchy, tired or a bit grumpy. I’m now like this more than was the case. Hopefully, you’ll get the reasons. I haven’t completely lost the capacity for having fun. It’s been a great giggle poodling along at 90mph on the A38 with the top down on my car and I went with friends to the Buckfastleigh butterfly farm and otter sanctuary yesterday, as you do.

6.The kindness of others
I’m getting superb palliative nursing care from the team at St Lukes (especially from Julia and Cathryn). They’re a small charity but are funded by the NHS to deliver local community and in-patient palliative services. They really are a lovely organisation and people. And I have  had kind and generous pastoral support from Macmillan (especially from Ellie) and from Tom, an Anglican vicar. (Tom has lent me Viv Albertine’s autobiography. https://en.wikipedia.org/wiki/Viv_Albertine. The book is a cracking read and I recommend it). Friends have also been very kind and understanding – it would be invidious for me to name individuals (although I’m sure no one will mind me giving a massive thanks to Mandy).

I’m getting a great deal from others for  which I am very grateful. I’m very fortunate. I’m also getting spiritual guidance from Zeeb Lightswitch, the village’s Zen feng shui meditation master. He only wears bright red and bright yellow clothes, he has three beards and owns a dog called Karma. (Although he says he doesn’t ‘own’ the dog as they are spiritual equals).

That’s it for now, as if it wasn’t enough text. Thanks for having the patience and making the effort to read this far. Any questions, please ask. All that’s going on is not a taboo subject – I’m very comfortable talking about stuff (if I feel up to it on the day).

With love

Nigexx

23 May 2018

“On a lighter but more wooden note…”

Dear friends

This email is a different kettle of fish to my last one. Or maybe I should say it’s not a chip of the old block or some such pun. Anyway, the story is this…

Way back in November my friend Isabel invited my to her sculpture studio to make something. (I’d done a course with her years ago and, under her expert tuition,  I’d made a copy of a Hepworth sculpture (see photo). As some of you will know, making things from wood – like furniture – is my thing.

I was recovering from something or other at the time but in December I set to work.

I have no religious beliefs what so ever but I knew intuitively and very quickly that I wanted to do something on a sacred theme, I wanted to do relief carving and I wanted something inspired by the work of Eric Gill such as the one in the photo below. After some preliminary sketches, I set to make my thing and the result is what you see in my hands.

Judging from my triple chin and pokey-outy belly, the photo must have been taken before surgery. I think I might have even finished it by the time of the party. Mid-March maybe. For those of you at UEMS, it’s now in Becky Hardwick’s office. (Sorry Bex, they’ll be queuing up round the block to get into your office now. Charge ‘em a fiver).

Isabel then invited me to make plaster copies of the piece and so that’s what the white version is. An exact replica of the wooden one but made from Plaster of Paris.

There’s clearly a Jesus thing going on. The bust on the bench  is a version of one she’s going to carve from wood. Isabel has a commission from a monastery or something like that up north somewhere (geography and the names of religious foundations are not my areas of expertise). She’s carving a three quarter life scale crucifixion although at this stage she is making the maquette from clay (see the photo of the gorgeous Isabel standing by it). She’ll use the maquette as the model for carving the real thing. One of Jesus’s fingers fell off recently, so she cut the hand off and binned it. At my request she stuck the finger back on and put the hand on a clay plinth. Jesus old hand is now waving through my front window. I hope that doesn’t sound too weird.

The Madonna and child is a 3D printed small scale copy of a life size one at Buckfast Abbey that Isabel carved from stone. It’s on the path between the old gift shop and the abbey entrance for when you are on your next UEMS away-with-the-fairies-day.

Talented women is our Isabel. And a great teacher. I’m rather fortunate to have had this opportunity, so thank you Isabel. I’d like to do more. We’ll see.

Amen brothers and sisters!

Nigel

Bringing the family together

26 May 2018

Dear Brenchley clan, descendants and affiliated members

It’s the BBQ next weekend on the Sunday. It’ll be nice to have everyone together and hopefully we’ll have good weather. If not, Floyd is bringing a gazebo and mum has a conservatory.

A few org details:

1.We’ll aim to eat round about 1.30 but it’s not a to the minute arrangement. Please get there earlier if you wish. Please let mum know what time you plan to get there as that’ll cause less stress for her.

2. Venue is my mum’s: 85 Churchfields Drive, Bovey Tracey, TQ13 9QU.

It’s a serious pain in the arse to find even with sat nav as the bungalow is up a small drive and tucked largely from view from the street. We’ll try to put balloons up or similar to make it more obvious. But be prepared for driving up and down the street a squillion times.

3.I want to avoid mum having to worry about food supplies. So would each person mind bringing a mix of BBQ type meats, salads, alcohol, soft drinks and anything else? I realise that might be tricky for Sue and John who’ll be on holiday. Ditto Joe and Abi who’ll be travelling by train. So you guys, do what ever you can.

4.There will be 15 alleged adults and 2 bona fide children. So each person to bring one sixteenth of the food/drink required for 16 grown ups.

5.Floyd and Ali have BBQ equipment and outside chairs sorted.

6.Floyd will make sure there will be enough china crockery and serving/eating implements. There will strictly be no paper or plastic implements.

I think that’s it but let me know if I’ve left anything out.

Please let me know you’ve received this text.

Look forward to seeing you soon.

Love

Nigexx

3 June 2018

Dear mum, Mandy, Sue, John, Mark, Nichola, Aunty Margaret, Floyd, Issy, Neil, Leon, Jake, Ali, Dave, Joe and Abi

Thank you ever so much to you all for helping to make this afternoon such a lovely time. It was so good for us to be together – to talk, to eat lovely food, to have a giggle. I can’t say enough about how much I loved being there and for seeing you there too. Thanks too for all of you who brought all the gear with them, who put together the gazebo, cooker, chairs and balloons. The garden looked really amazing. Special thanks to Floyd and Issy for being top chefs and for cooking most of the delicious food; and to mum and Neil for hosting.

I was slightly nervous before I went to the BBQ because recently I’ve been struggling with tiredness, poor appetite and pain. And I feared all that stuff would affect me this afternoon. But it wasn’t at all like that today. It’s too soon for me to count chickens but I’m so thankful that such things didn’t get in the way today.

I don’t have everyone’s number (Aunty M, Nichola, Dave, Neil, Abi and the boys!), so please pass on my big thanks to them.

With love

Nigel xx

The ‘Brenchley clan’ – Nige’s family on his mother Maureen’s side

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