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

Chapter 12: Biopsy surgery

8 April 2018

Dear friends

Should you want to find out about progress with tomorrow’s surgery, the details of my admission are:

  • Surgeon: Mr C
  • Ward: Fal Ward
  • My hospital number: F456698
  • Hospital switchboard tel: 01752 202082

I shall try to remember to give the ward permission to speak to you about me. Currently Mandy is the only one given as my contact person. [phone number]. If for some reason they won’t talk to you, Mandy is happy for you to phone her.

Love

Nige

8 April 2018

Dear friends

At last a text from me with some good news:

My research skills are such that I undercounted the cash donated at the party by over £100. (So ignore my previous text about the sum raised). My lame excuse is that I was counting the dosh at around 4am. Others who missed the bucket, as it were, have made a donation by phone to Macmillan. (I know that Jo[siah], Ab[by] and Dave have been generous). Anyway, the regional Macmillan fundraiser came this week to collect the money and she told me that the total of the cash and phone donations to date is £621.78. It may well have increased by now.

I might have missed passing this information on to everyone so please spread the word.

So thank you once again for donating to an organisation that has been enormously helpful to my mother and me as well as other cancer patients and their families.

If you missed putting cash in the bucket you can add to the stash by calling the Macmillan fundraising support centre. 0300 1000 200. My party is registered with them as ‘Nigel’s party’. If you give my name, address and name/date of party (30 March) they can take a donation.The address is [Address], Plymouth Rd, South Brent, Devon. If you feel like it, they might provide an up to date figure.

Love

Nigelx

11 April 2018

Dear friends

This is a much longer text than usual. My apologies. It was written mainly as an attempt by me to explain to myself what’s going on. But it’s also an attempt to tell you something about the prognosis. If you have any HSR or medical knowledge, I’d especially like to know what you think about my reasoning. There is a bit at the end about the treatment that’s probably happening next and stuff about my general health.

I had surgery at 11am on Monday when a surgeon, Mr C, taok a biopsy to test for cancer. Yesterday afternoon I had a long conversation with Dr P [name and pun redacted…}  a consultant surgeon to discuss biopsy results. (He wasn’t in theatre on Monday but he based his advice on the notes made by Mr C and from a conversation that Dr P had with him).

The key bits of information that Dr P gave me were:

-The surgery found a mass (ie a tumour) in the same area where the tumour was found during surgery in October 2016.

-While I was in theatre on Monday, a quick test  (known as a frozen section) was carried out on a tissue sample. This showed that the sample was malignant (ie they found cancerous cells)

-a sample has been sent to pathology for a definitive test (which takes up to 2 weeks to carry out.)

It was very frustrating because Dr P refused to say what he thought would be the most likely diagnosis in 2 weeks although almost in the same breath he said it’s unlikely to show anything different to the frozen section. (Mr C was heading out of the country, so couldn’t be asked about his opinion).

Mr C spoke to me on Monday but I was so tired from surgery and morphine that I don’t remember much of what he said. But I do remember that he told me that he cleaned out the messy, necrotic inside of the mass and that the mass had the tactile feel of a cancerous tumour.

As Dr P didn’t give me his opinion about prognosis, I have interpreted the information given to me by Mr C and Dr P and my knowledge of my history to draw my own conclusions about the likely diagnosis and prognosis. This is that:

-In exactly the same area of the abdomen, Non-Hodgkin Lymphoma was found by a biopsy in October 2016, a metabolically active area was found by a PET scan in February 2018 and Mr C saw, felt and tested for something on Monday which he described as a malignant mass.

-The PET scan result was enough for [name removed] (one of the consultant haematologists) to make the terminal cancer prognosis in February.

-Therefore, given the similarity of the results from the 2016 surgery, the Feb PET scan results, and what was found during Monday’s surgery, I think that it is a near certainty that I have terminal cancer.

I think this is a reasonable inference. It’s the one I’m keeping in my head anyway. What does anyone else think, especially any medics and researchers? Have I made a basic error in my logic? I think the time for giving myself false hope has passed and this feels unhelpful, so no soft soap please.

I still have to wait 2 weeks to find out whether my inference will be proven. But, as they say in the medical text books, if it looks like a duck, flies like a duck and quacks like a duck, then it is a duck.

At least I don’t have to feel embarrassed about throwing the party under false pretences!

Amongst the next stages are:

  • Seeking specialist advice about the management of the severe pain which I had before admission (which Dr Pong says was caused by the tumour).
  • Being enrolled into a clinical trial (but the results of the definitive diagnostic test are probably needed before this can be offered to me).
  • Organising discharge in the next few days and sorting where I spend my convalescence.
  • Consulting Tabatha Lavender-Moonrocket, a Totnes based holistic feng shui naturopath.

It seems that, apart from the possibility of being part of a trial and the miracles performed by naturopaths, Nexit really does mean Nexit! ☹️

Thank you to those of you who have made enquiries with Mandy or me. I’m sorry it’s taken me a little while to get back to you. I have the usual post-surgical pain; I have an epidural in me and so I’m zonked out; and I’m somewhat tired from lack of sleep (trying to sleep in hospital is a bit like trying to sleep on a long haul flight). Reading Viz requires too much intellectual effort (seriously!) and it’s taken me a day to write this text. But otherwise I’m fine: I’m told I have a little colour, I’m eating small amounts, taking fluids and I’m farting (a good sign as it shows the bowel is working)!

Mustn’t grumble!

Love

Nigelx

Nige after his first operation.

13 April 2018

Dear friends

On Wednesday morning I discovered that you had not received my encyclical. Can you acknowledge receipt of it. Pain levels suddenly rocketed, hence delay in  rectifying.

Love

Nige

19 April 2018

Dear friends

I was discharged from hospital yesterday and I’m very glad to be home.

As usual, I’m going to be very frank in this long text. You might want to read it away from any hubbub.

Dave Bains [name changed], one of the consultant haematologists that’s been treating me, saw me on Tuesday. He had the definitive biopsy results. Unfortunately, they don’t change the prognosis that I was given in late February. ie I do indeed have terminal cancer. After me insisting, he told me that the average life expectancy for someone with my disease history is 3 to 4 months.

There is, of course, the potential to be enrolled on a trial, the outcomes of which are by definition unpredictable. I’m meeting with doctors on Monday to discuss trial options including my eligibility to take part in one. If I am eligible, it will only be a Phase 2 trial. This  has a specific meaning which I won’t attempt in a text. The gist is that Phase 2 trials are an early stage of the drug testing process when relatively little is known about the trial drug’s effectiveness.

Participation in a trial (if I’m eligible) doesn’t sugar the biopsy result pill, especially as drug effectiveness has not been tested and so the chances of success are hit and miss. So hanging hope on a good trial outcome is clutching at straws. But it’s still a more credible road to take than visiting Tabatha Lavender-Moonrocket, the well known Totnes based holistic feng shui naturopath who I mentioned recently in a text. Nothing beats science in my circumstances even with the limitations of Phase 2 trials.

I very much prefer to face up to the reality of what’s going on and to live my life accordingly. It’s not going to help me if I think in other terms. It’s neither a glass half full or a glass half empty attitude. It’s just a glass and I can see clearly what’s in it. I don’t want to put a swizzle stick in it  to make it look prettier.

I feel pretty numb. I effectively already knew what the biopsy was likely to tell us before Dave gave me the definitive lab result. But neither did I really, really know until I was given the final result and was given as specific a time estimate as it was possible for the doctor to give me. I’m not sure whether that sentence makes sense. In spite of the result being as anticipated, the knowledge is literally stunning. The tazar of all news. I’m not sure how the process of acceptance works; I’ll just try to let my grasp of what’s going on unfold naturally at its own pace.

And I’ll being doing what I can to do things with my time that will take me to some semblance of normality. I’ll also doing what I’ve always been doing which is to treat dying like a job. I’ve more or less finished organising my personal affairs and funeral arrangements over the past month or so. My performance appraisal scored high on that one. The next part of the JD says “the post holder must optimise spatial and temporal opportunities within the parameters of our mission statement”. I thinks that’s management/academic speak for getting out there and doing what I can to enjoy my time without doing foolish things.

While in hospital, I met several times with St Luke’s doctors and nurses who run local palliative in-patient and community care services. (For non locals, St Luke’s is a very well established and respected voluntary palliative care organisation. They are commissioned by the NHS to provide local palliative care services). They are very lovely people and I’ve been impressed by their efficiency, style of working and by their advice, especially around pain management. I’m hoping pain will diminish in the short term as I recover from the surgery. But there’s still a need for a very large amount analgesics to manage cancer pain and the need for more of it will probably increase. I’m also (as I have been for ages) consuming a cocktail of other meds such as anti-virals and antacids. I’m in the good hands of St Luke’s and I have every confidence in their pain management skills.

One of the haemotolgy doctors has told me that there is a risk to my life if I get an infection and my body is unable to fight it. I need more medical advice about exactly what this means. In the meantime, if you  have an infection (colds, minor bugs, bubonic plague) of any sort (or have a child with an infection), please let me know before visiting me or if you bump into me in the street. I don’t intend to become a  hermit, I just want to be careful.

I don’t have a bucket list. But I have a cancer research idea that I’m trying to revive; I have a modest art project that I’d like to work on; if it’s a nice day I’d like to drive my car with the top down; I want to spend time with friends and my mum; I want to spend time alone; I want to read.

If I don’t feel like being sociable or chatty, I hope you won’t get offended. And if I call you at 2am to go clubbing (as if), you won’t mind putting on your glad rags. I want to quietly make the most of my time but I don’t want to be a cliche by going on an exotic holiday, swimming with dolphins or buying a DB4 (much as I love DB4s). I’m glad I had the party.

Yesterday afternoon I had a long, tearful conversation with mum about the contours of what I’m telling you including prognosis, life expectancy, pain issues, the trial option and how I spend my time. If you happen to talk to her, I’m sure that you’ll go at her pace, won’t be as blunt as I have been with you and will avoid psychobabble.

Please don’t be afraid to ask me questions. Nothing is taboo.

With love

Nige x

PS I’m conscious that the recipient net for these occasional texts has grown wider and wider over the last 18 months and now covers early recipients who were intimate friends to “did I meet you in the pub last week?” sort of mates (well maybe not quite that superficial but you get my drift). Because of the intimate nature of my texts and if what I’m saying makes you feel uncomfortable, I won’t mind if you ask me  not to send you anymore. I realise too that they’ve grown enormously in size so it must take you bloody ages to read them.

The texts were originally intended to provide clear and unambiguous information to friends and to prevent Chinese whispers. But I’ve also found them useful for me as they help me to work out what’s going on. You’re doing me a service.

26 April

Dear friends,

You might have noticed Rosie (Mandy’s daughter) taking photos at the Nexit party way back in March (remember it?).  She’s a photography student at the London College of Communication.

I’ve asked her to send from her email account this message from me to you and a small selection of her photos. If you’d like to see more photos of the party, please go to her Facebook photography page at Rosie Victoria Photography.

I’m sure you’ll agree with me that Rosie has done a really good job.

The photos in this email can be enlarged to fill the screen if you click on the image. I’m not entirely sure how you print off copies for yourself. Rosie can advise.

If you’d like to use her for your own funeral celebration, divorce party or Bar Mitzvah, get in touch with her by email or Facebook.

Love

Nigel x

Chapter 11: Prognosis and Nexit party – part 2

12 March 2018

Dear Friends

For those not familiar with them, I’ve been sending out texts – often lengthy – to friends since I was first diagnosed in 2016 with Non-Hodgkin Lymphoma. These texts have been to give treatment and prognosis updates. This is my latest of such texts. I think it’s been an effective means of preventing Chinese whispers. Organising the party has resulted in a much longer text distribution list, so please forgive the slightly impersonal nature of the text.

I’ve been to  see a surgeon this morning at Derriford. My haemotologists referred me to him to ask for advice about whether surgery to take a biopsy is feasible. Feasibility was in doubt because the tumour is buried deep in my abdomen adjacent to organs and major blood vessels. Surgery risks damaging them.

There is a very slim chance that the PET scan result is wrong but a biopsy is the only fool-proof diagnostic test to find out if this is the case. (A biopsy takes a sample of the tumours tissue. Microscopy and other clever methods are used to test whether the cells are still cancerous). The surgeon said that referrals to surgeons from haemotologists to take biopsies are unusual and he doesn’t think that the life limiting prognosis is likely to be changed by a biopsy result given previous biopsy, CT and PET scan results. But he thinks it’s worth the risk of undergoing surgery to take a biopsy in the hope the result does indeed turn out to be different and that it finds that I don’t have cancer.

So  I’m going in on Monday 9 April. The first stab will be at keyhole surgery to get a tissue sample. This might not be feasible because of where the tumour is located. If he can’t do keyhole, he’ll open me up to get access to the tumour. Surgery, of course, carries risks. The fatality risk is 1-2% and other risks (such as leakage) are around 10%. But these are risks worth taking.

Depending on which operation is performed, I’ll be in hospital for 24 hours (key hole) or at least 7 days (open surgery). There’s a possibility he’ll also discover the tumour is again causing a bowel obstruction. In this case, he’ll operate to rectify that. Post-discharge recovery from open surgery is likely to be lengthy.

As with all previous hospital stays, I’m unlikely to encourage visitors but check with me first or my personal hospital visitor co-ordinator Mandy.

The party is very much still going ahead given that I’m likely to still be feeling relatively well and that we’re working on the assumption that the prognosis won’t change. We’re of course hoping that the party will turn out to be a huge embarrassment for me if the biopsy result is a good one.

Let’s hope Donald has stopped being a bad boy and I’ll end up with egg on my face.

Love

Nigel x

15 March 2018

Dear friends

I’m afraid this is a grim request. Pam is compiling a spreadsheet for me to contain the names and contact details for those to invite to my funeral. There are some friends – including you – for whom I have incomplete information.

It’d make things a lot easier in helping Pam complete the spreadsheet if you could email me with:

  1. Your first and second name
  2. Your email address

In the email title, please write ‘my contact details’ – this makes searching easier.

My email address is: nigeltcharles@gmail.com. Note the ‘t’ in the middle of my name.

Could you send me this email as soon as possible please as I want to get this unpleasant task out of the way very quickly.

Nigelx

24 March 2018

Dear friends

Please reply to this text by return (see below).

I’m sending a reminder about next Friday’s Hard Nexit Party!  The details are:

  • Time: 7.30pm
  • Date: Friday 30th March
  • Venue: South Brent Old School Community Centre, TQ10 9BP
  • Music: The Ukelectives, DJ & cheesy 70s disco from my iPhone play list
  • Food: bring and share
  • Drink: bring your own

If you’re in the village and would like to help set up the party, we’re meeting at the Old School at 2pm. Let me know if you can help.

Please remember that the party will also be a fundraiser for Macmillan who have been extra-ordinarily helpful to me and many other cancer patients and their families and friends. So I want your crisp fivers and tenners, not piddling small change, to go into the Macmillan collection bucket. So go to the cash point in the village co-op to stuff your wallet full of notes. (I’ve registered the party as a fundraiser with Macmillan).

If you’re feeling brave or foolish, we should have one collective dance inspired by the dance moves of Future Islands. Get practicing:

https://youtu.be/e8Uhf3gM1m0

It’s very helpful for planning the party if I knew more accurately than I currently do how many are coming. (Eg I might lay on some extra booze). So please, please IMMEDIATELY reply to this text with how many adults and how many children are in your group that’s coming to the party (even if you have already told me a squillion times).

Love

Nige x

1 April 2018

[Photos of the ‘Nexit’ party are available here – Rosie Victoria Photography]

Dear friends

Thank you for coming to the party and I hope you had a good time. Many people said how much they loved the Ukelectives.

You were very generous with your donations: £409.87. Please pass on my thanks to the friends or partners  you came with whose number I won’t have. I’ll arrange to get the cash to Macmillan as soon as I can.

Much love

Nigelx

Chapter 10: Nexit party – part 1

28 February 2018

Dear friends

We are inching towards a party date, band and venue. I’m canvassing a select group of friends to see what dates suit they are available. So please reply to this text very, very, very quickly even if it’s a nil return. Replies needed by 6pm tomorrow if not before.

Venue: South Brent Old School Community Centre

Band: The Ukelectives

Dates: Sat 24th March or Friday 30th March.

Are you free on one or both those dates? Even if you have a preference for one, please let me know if you’d be happy to come on the other date.

If you’d like to see the mighty Ukelectives in action, check out an example of their tongue in cheek pop covers repertoire on YouTube singing ‘We play the music.’ They’re really good to dance to.

I was discussing the funeral venue today with a green funeral company. But we don’t  have a date for that yet!

Love

Nige

3 March 2018

Dear non-Brenters

It’s occurred to me that the party thing could be turned into a gentle sociable weekend. So pub lunches, local walks, afternoon tea, that sort of thing. If that appeals, book a Saturday night B&B (if you need accommodation) and bring some stout footwear.

Nige x

4 March 2018

Dear friend

I think the YouTube links did not work for most of those I sent the party details. I hope this second attempt works.

Here’s the Ukes video:

https://youtu.be/i3M_t4Wejlo

They’re a lot of fun. They manage to do it dead pan somehow.

And here’s Future Islands whose dancing we can imitate:

https://youtu.be/e8Uhf3gM1m0

If you haven’t already replied to my Nexit text about whether you’re coming, can you please do so as soon as possible please (even if you have already told me you have told me prior to that text going out). We need a reasonable idea about numbers and a prompt reply would be very much appreciated.

I listen to a lot of podcasts. I’m especially a fan of Dan Snow’s History Hit which is him talking to historians about interesting historical events. I’ve discovered this one last night – which is slightly atypical – in which he talks to a psychotherapist about historical and contemporary attitudes to death and grieving. (See link below). Basically, the message is as a culture we need to talk more openly and honestly about dying and grief than we are accustomed. I hope you listen to it. I also hope my little journey is an opportunity to practice what’s preached both before and after I shuffle of this mortal cliche. There’s an irritating advert in the middle of the episode:

https://itunes.apple.com/gb/podcast/dan-snows-history-hit/id1042631089?mt=2&i=1000382545740

With lots of Nexit

Nigelx

Chapter 9: Prognosis – part 1

12 January 2018

Dear Mandy, Rob, Pam, Ian, Mark and Jen

Very few friends (only you guys) know that I had a CT scan today. I wasn’t expecting any results till next week but Derriford are so incredibly efficient. The haematology registrar I saw today has just called to say they’d already got the CT result. Basically, she said the results are reassuring. The main mass (tumour) is probably dying and other signs of disease are looking better. They  can’t be absolutely sure about everything – they can only be confident when they carry out a PET scan which measures things much more precisely than a CT scan. But they see no need to bring forward the PET scan date (13 Feb). So good news eh? And it gives me a bit more confidence that the outcome of the PET scan will be a good one.

Nige x

12 January 2018

Dear friends

I’ve got some cautiously good news. I’ve had some symptoms recently that required me to have a CT scan today. The hospital was super-efficient in getting the results to one of the haematology registrars within a few hours who then called me to say that the results are reassuring. The evidence is such that the main tumour is probably dying and other signs of the absence of disease are looking better. They  can’t be absolutely sure  – they can only be confident when they carry out a PET scan which measures things much more precisely than a CT scan. But they see no need to bring forward the PET scan date (13 Feb). And the CT results give me reason to be cautiously hopeful about  the results of the PET scan.

Nige x

5 February 2018

Dear friends

I meant to send this earlier. Yesterday (4th Feb) was World Cancer day. If you’d like to mark it by making a donation to a cancer charity, I suggest Cancer Research UK or Macmillan. The links are:

https://www.cancerresearchuk.org/support-us/donate

https://www.macmillan.org.uk/donate

Love

Nige x

22 February 2018

Dear friends

I’ve now got the results of last weeks PET scan. I’m afraid it’s very bad news.

The cancerous tumour is still there and it’s likely there is  undetectable lymphoma elsewhere in the body. There are no mainstream options left and the only treatment options are to take part in clinical trial. We’ll be discussing this option on Monday. There is a very remote possibility that surgery could remove the tumour and advice is being sought about this. But this will not be curative.

The upshot of all this is that my life expectancy is very short. We’re talking months. But, of course, there is not a precisely predictable time estimate. A trial could extend this by a short while but probably not for long. There is a remote chance that a trial could do more than this but this chance is unquantifiable and this outcome is unlikely. There will of course be palliative care to slow disease progress and deal with any nastiness. But the outcome is still the same.

There is one slim hope that the PET scan result is false. The only way of telling is to have surgery to take a biopsy but for technical reasons this might not be an option. But a referral is being made for surgical advice about whether a biopsy is an option. The haematologist thinks it’s highly unlikely a biopsy will tell us anything different.

I’m seeing the doctors again on Monday to discuss things in a bit more depth and to discuss second opinions.

I’m feeling remarkably physically well and handling this rubbish news.

Mark came with me to the appointment which was extremely helpful. For those who don’t know him, Mark is a GP and it was incredibly good for me for him to be there. He’s also coming with me on Monday.

I’ve just got home from telling mum and Neil the news. She’s naturally shocked and upset. I’m sure those of you that know her will be there for her. Feel free to call her. She’s happy for you to have her numbers. But don’t call all at once! Her email address is [redacted].

I’m planning to carry on pretty much as normal although I doubt I’ll be returning to work except for possibly working on my research idea that some of you know about. I might do a hedge laying course I’m booked to do on Saturday. And I still want a normal social life! So I’m having supper tonight with Pam and Mairi.

And while on the subject of things not lasting as long as we’d want them to, my laptop died this week. Today I brought myself quite a nice new HP laptop plus a 12 month Microsoft Office licence agreement. In other words, this software will last longer than me! Plus some lucky bugger will get to inherit a nearly new laptop. So there is an upside after all!

That’s it for now. Any questions, let me know. I went to spend time with Pam and Mairi this evening, so perhaps call me after tonight. If and when you do call, please don’t tread on eggshells.

With all my love

Nige x

24 February 2018

Dear friend

First, my apologies for the impersonal start to this text. On Thursday, I sent the very long text below to several people in batches of up to 10 people. But I can’t be sure this method meant it has  been received by all. So I’m sending this text to every one individually but not addressing it personally.

The second reason for texting is to let you know that I plan to organise a valedictory party to take place in the next few weeks. Pam and Mandy came up with this brilliant idea separately. It’ll be called the  ‘I’m not dead yet party’ or the ‘I told you I was ill party’ or something like that. I’ll also make it a fundraiser for Macmillan, the community centre or some such.

I’d really like to have a band, so I’m putting out feelers. But I have no concrete plans at this stage about exactly what or when it’ll happen but I intend it to be in South Brent. You are, of course, invited and please bring your partner, friend, kids and so on. I want the chance to get friends and as many people as I know to get together for a fun evening and as a sort of thank you and goodbye from me. It’ll also be a chance for my mum to meet people that I’ve been talking about for years but she’s never met. Some of you will know people I know, especially in the village, who won’t necessarily get this text. So please mention the party – and the reason for it – to anyone you think I know and keep them updated about my plans.

If the party happens, it’ll take place at short notice as it needs to take place while I’m feeling so well. So I hope you can be flexible with your time. Please watch this space.

I’ve yet to think about how I will handle the embarrassment of not snuffing it should a clinical trial drug cure me. I hope you’ll put up with me if that happens. Sadly, the reality is that this is a slim chance.

If you haven’t already told me, can you let me know please whether you received the original long text that I sent on Thursday, so I know my batch method of sending texts works for everyone.

Love

Nige x

26 February 2018

Dear friends

Mark and I have just got back from seeing Prof A [redacted] at Derriford hospital.

They want the next stage to be a laparoscopic operation to take a biopsy. This is because there is a slim chance the PET scan is wrong. A biopsy will tell for sure whether I still have lymphoma or whether the activity the PET scan found is something innocuous. Until they have this result, they can’t make decisions about palliative chemo, taking part in a trial or anything else. They are still waiting for a decision from a surgeon about whether a laparoscopy is possible to carry out. If it’s not carried out, I guess the only test is whether I die.

Prof A was more upbeat than last weeks consultant. He was also evasive when asked direct questions about my prognosis and I left feeling confused. But he thinks I should go ahead with the party, I should still cash in my pensions and that he’d be surprised if I was still alive in 6 months if it’s found I still have lymphoma if no trial treatment was given.

Mark’s interpretation (and he’s a GP) of Prof A’s words is that the medical opinion about prognosis is no different to last weeks meeting with the consultant. That is, my life expectancy remains short.

I wasn’t happy with Prof A’s manner or evasiveness. He’s left me feeling unclear about my illness but, listening to Mark, I think we have to accept the story is still the same except for the slim hope the biopsy will find I don’t have cancer or that just maybe (just maybe) my cancer will respond to (but not necessarily be cured by) a trial drug.

I have to say that I’m feeling rather exhausted and befuddled by all this uncertainty and trying to get to get a handle on what’s happening. The process of dealing with pension companies, funeral folk, the solicitor and the other administrative aspects of preparing for the end is hard work and a pain in the arse. But it has to be done.

I have had huge amounts of love and support from friends and family. You’re all being so kind and, like me, baffled by the prognosis given that I look and feel so well. There’s a sense of unreality about the whole thing. I’ve just had a marvellous weekend spending almost all of it with Mandy, Pam, Mairi and Kate driving across Dartmoor in glorious sunshine with the soft top down on my sports car, sharing food and nice conversation and feeling so lucky that I’ve got great friends.

My mum is bearing up well. My priority is to make the best of things for her sake. Thank you to those of who have given her your kind words. She really appreciates it and I’d encourage any of you to do the same.

If I can organise it (and thanks to Ben for taking a big role in this), I’m still proceeding with the party as I want to celebrate life and the people in it while I am still well. And I hope I will experience the deep embarrassment of having a party but not snuffing it!

I still don’t trust my methods of sending texts out in batches to people, so I hope you get this one. It’s just a real hassle to send it separately to 40 odd people.

With love

Nige xx

Chapter 8: Radiotherapy

18 November 2017

Dear friends

I’ve now finished radiotherapy – 15 quick (10 minute) sessions over the last three weeks. It was delivered by a massive, very high tech and very expensive (£1m) machine in an equally expensive to build radiation proof bunker (see the pic of me mansplaining the machine to my nephew). It blasts photons at near the speed of light at the tumour which mess with the DNA of the cancer cells to kill them.  I’m not really sure what a photon is, so I’m not entirely sure what that sentence means.

Going every day was a chore but obviously necessary and the side effects were fairly modest, certainly much less worse than for chemo, and promise to wear off fairly quickly. It’s mainly been feeling knackered and I’ve had some nausea which has kept me awake a few times. But it all was to be expected. As ever, our friends in the NHS have been ever so nice and friendly in delivering the treatment (although the oncologist was a bit scary).

My understanding is that the oncologists want to give the treatment as long as possible to have an effect. For that reason I won’t be scanned until February to find out if it has worked. So watch this space. Or ignore it if you prefer.

While in the oncology waiting room yesterday, I imagined instead that I was in an ontology waiting room wondering what an ontologist did. Do they treat those who don’t know whether they exist? Cure people from talking out of their arses? Prevent me from making up terrible pseudo-philosophical and unfunny jokes?

Bye!

Nigel x

Chapter 7: A research idea

“The failure of chemotherapy and the offer of radiotherapy saw a change in mood from stoic equanimity to anxiety. In reflecting on this, I identified a potential research study to inform how patients can be helped to manage the emotional impact of cancer.”

26 November 2016

Dear friends

I once worked for the Social Care Workforce Research Unit at Kings College London. They asked me to write a piece for their blog about my cancer experience.  This is my contribution:

http://blogs.kcl.ac.uk/socialcareworkforce/2017/10/25/is-donald-useful/

You’ll see that I’m drawing on my experience to propose a research study that has the potential to benefit cancer patients. That is, my post is an effort to find something positive and useful to learn from an unpleasant experience. If you find the account  too in your face, I had to write it that way to make my point clear.

I’d like to see whether there’s interest in the proposed research and to see if it can get off the ground. So if you work in the research, health or care world, feel free to tweet or otherwise circulate the blog.

I’ve just been told that radiotherapy starts next Monday. I’ll have it for each of the subsequent 15 working days.

Love

Nigel

…the story is to be continued.