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

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