8 April 2018
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.
8 April 2018
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.
11 April 2018
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)!
13 April 2018
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.
19 April 2018
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.
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.
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.