7 June 2024

‘When I cry unto thee, then shall mine enemies turn back: this I know; for God is for me.’ Psalm 56:9

It’s Friday! It’s wine o’clock! So I proffer you a little diary of my week in case you have nothing better to read whilst sipping your Sauvignon, Pinot Noir or G and T (or Moet, in the case of my lovely friend who has just had great test results for her own cancer- everyone raise a glass to Alex!).

And if your Friday tipple is making you feel particularly generous, then do check out my wonderful friends’ fundraising page : ‘Sam’s Squad’ (😍) will be walking a full marathon through the night in September in aid of Cancer Research. Visit https://fundraise.cancerresearchuk.org/page/samssquad.

For my particularly awkward kind of bowel cancer, there are limited treatments and no new ones have been developed for years. But this can change: SuperProf is on it in the lab! And here is proof: https://www.bartscancer.london/interviews/2022/05/in-conversation-with-professor-marco-gerlinger/ – another Friday treat for you- you get to meet the smiley Prof!

The last 10 days could probably be best described as ‘rather grim, but with some lovely moments and a happy ending’. We pick things up on Monday of this week…

Monday 3 June

I’m lying in the oxygen chamber feeling as if I’ve been run over by several trucks whilst drugged with something strong and illegal: this chemo cycle has hit hard for some reason… Irene, would you care to elaborate? I hope it’s that you have upped your game even more and are on a violent cancer-killing rampage worthy of any teenage boy’s X-Box game…

Irene has also been extra-generous with the side-effects this time, making sure that I am well-supplied with headaches, nosebleeds and sleepless nights, after nearly a week of which the tiredness is so intense that I have been sleeping in the day. The day!! So wrong!! To me, this is the ultimate fail; if I am forced to give in to sleep it mean that I can’t DO anything and therefore I feel more than useless…

It’s all so hard to fathom and questions are spinning round in my mind… Was it really just a week ago that I was bounding up mountains and scrambling through forest undergrowth in Scotland? How can the treatment give such horrid symptoms whilst the cancer gives none? The thing is, without the treatment the cancer would certainly step into the limelight, top hat and cane at the ready; I’m not super-keen to book front row tickets for that show yet so of course I choose the option that at least means I get to feel good sometimes. And tomorrow is another day…

Tuesday 4 June

It certainly is. I slept ALL NIGHT last night, the first time in a week, and awoke to find that some strength and all of my mojo had returned to me. Woo! Back in the game! Cue an early shower, a few quick squats and a dive into the oxygen chamber before starting the lengthy breakfast protocol. To achieve my smoothie ‘reward’ I have to work my way through the following:

⁃ Spoonful of blackseed oil

⁃ 2 Spoonfuls of Omega 3 oil

⁃ 1/3 syringe of CBD oil

⁃ Powdered organic mushroom blend mixed in a little orange juice (TOTALLY disgusting..)

⁃ 10 drops Mistletoe extract in a little water

⁃ Liposomal vitamin C also in a little water

And then after forcing the smoothie down (which contains a plethora of Healthy Things as well as our old friend Febendezole the dog worming drug…), I make a start on the pill box. If I can be bothered to hang out in the kitchen any longer I sometimes then reward myself with something I actually want to eat- usually marmite on toast but today I choose a little homemade protein ball that is quite delicious, featuring oats, honey, coconut and dark chocolate.

Yesterday was hard because I had to give in- I had met my match and all the willpower in the world was not going to make the slightest bit of difference. Today, though, I have much more control and intend to max it out, sorting the house, washing, cooking and trying to up the pace with the music transcribing- the summer holidays are a short 5 weeks away and I intend to focus entirely on Isaac once he finishes school. There are some things still outside of my control, however, namely the neuropathy that seems to have decided to become a permanent resident in my fingertips and the soles of my feet, which are constantly numb and tingling and shall have to be declared to SuperProf on Thursday. This will most likely lead to him cutting the drug Oxaliplatin to avoid further nerve damage; but at least it’s not Irene and I’ve already had way more of the Oxi than Count Onc was prepared to give me…

Wednesday 5 June

Marvellous Monday Judy’s 60th birthday! Judy kicked off her celebrations not by rescuing me from an oxygen chamber or going for a walk and hot chocolate, but in fabulous style with a champagne brunch for a lovely group of ladies at her house. It was lovely; I was floored afterwards but that probably had something to do with the glass-and-a-bit of champagne that I slowly sipped throughout the morning… I’ve gone off most alcohol but champagne is the one thing I still have a taste for. Funny, that…

When I’m socialising with other people I realise what an alien world I am living in. Other people talk about the future: plans, holidays, family, long term goals. This is normal; I was the same. I did always know in my heart that I should hold everything in an open hand as it could be taken away at any time, but actually doing that when there seems no immediate need is very difficult. Now, however, we have no choice. We do not even live day by day but moment by moment. Each treatment, side effect, consultation, blood test, scan throws up new things to shape the rollercoaster track, and we just have to hold on as tightly as we can. Yes, we talk about things we very much hope will happen such as me being at the wedding in Cyprus next month (next month! Woo!), but in the full knowledge that nothing is guaranteed.

I wasn’t feeling great in the afternoon and this always makes it harder to get my head around the rocky marriage between cancer and normal life: however I’m feeling, vegetables must still be chopped, dinner must be cooked, children must be parented. Don’t do it all! I hear you cry. Let something go! Believe me, that would be far, far worse: I’m not going there…

I sat down to dinner feeling battered and exhausted. It was 7.10 p.m., 20 minutes before the start of the choir rehearsal that I had been hoping to go to. I can’t make the summer concert this year as Isaac has a performance in Poole that weekend, but wonderful conductor Derek had said that I could come along anytime I was able, to enjoy a sing. I hadn’t been able to so far due to chemo and being away, and wouldn’t be able to make the final 2 rehearsals either: today was my only chance. Going out was the absolute last thing I felt like doing, but something said to me: ‘Just go. Even just for a little bit. You can always come home if you need to.’ Since the rehearsal venue is 2 minutes’ walk from our house, I had no excuse. Out of the door I went.

And had the best evening ever. From the warm welcome of my lovely choir and the chance to see old friends, to the joy of singing with others again and sharing wonderful music, the time flew by and I couldn’t believe it when the rehearsal was over at 9.30. I could have carried on singing for another hour… It really is beneficial for the body and soul! I was also pleased that my voice remains intact : the early chemo treatments used to make me very hoarse but no such issues now. And my lungs are clearly holding their own as I didn’t notice any loss of breath control either. It was also a boost to my brain and sense of self-worth that I was able to help the second sopranos with some note-pitching. So, if you like singing and need a mental or physical boost, get yourselves to a choir near you!

Thursday 6 June

Still feeling emotionally and physically drained but definitely in a better place after last night. Today is a big one in several ways: we have our usual video consultation with SuperProf but this time I will not be able to charm him with my usual upbeat ‘Yes, everything’s great, I’m awesome, nothing to report’. Instead, I have a list of things that need to be discussed, which features everything from the massive lack of sleep in chemo week depsite halved steroid doses, to tummy trouble and the pronounced neuropathy in my hands and feet. It’s time to get real, but hopefully Prof will be as reassuring as ever and have some good solutions.

By way of contrast, right after the consultation we will be going to a D-Day commemoration evening which Isaac is involved with through Scouts. I’m sure it will be lovely and also help to lift us up and give us a different focus. How fortunate are we compared with the terribly young soldiers who had to face the possibility of an instant and horrific death every minute of the day?

Friday 7 June

I wonder if there is a Guiness World Record for the longest nosebleed? If so, I’m pretty sure that I smashed it yesterday, racking up an impressive 8 hours of unstoppable crimson gush, the Niagara Falls of nosebleeds… A and E was looking like a very real possibilty, but happily the application of frozen peas eventually worked enough for me to get my head out of the plastic bag and speak to SuperProf, albeit with tissues stuck to my face.

SuperProf, of course, saved the day as usual. He proposed drug-based solutions for the sleep and tummy issues: what are a few more pills when you are already taking eleventy-billion? Nothing is a problem to him: noting the nosebleed, he said that he would just refer me to an ENT surgeon if it becomes necessary. Prof remained relaxed about the neuropathy, wanting to keep the treatment as agressive as possible, so the Oxaliplatin stays for now. And best of all, he conveyed that my tumour markers have halved yet again, proving me and my little worrying mind wrong; I just didn’t think it would be possible for them to keep going down. But I remind myself that ‘with God all things are possible’, and am so thankful.

So I write this from the car on our way to Birmingham NCO Weekend Mark 2. The bar was set pretty high last time, what with Pavarotti’s bedroom and Rick Astley at breakfast… But even in the absence of ageing rock stars, I’m sure we will all have a great time, Isaac with his music and Steve and I with each other: walks and spa are planned… Have a wonderful weekend, everyone!

‘Nevertheless I am continually with thee: thou hast holden me by my right hand.’ Psalm 73:23