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.
12 January 2018
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.
5 February 2018
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:
22 February 2018
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
24 February 2018
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.
26 February 2018
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.