Thou hast made known to me the ways of life; thou shalt make me full of joy with thy countenance.’ Acts 2:28

A little set of diary entries this time!

13 March

5-month cancerversary today! Kicked things off with the usual marathon, enhanced by the extra chemo drugs:

⁃ Syringe of mushroom mixture

⁃ Probiotic capsule

⁃ Spoonful of blackseed oil

⁃ 2 spoonfuls of pure arctic oil

⁃ Green smoothie with a gazillion healthy ingredients

⁃ Box set of vitamins and supplements

⁃ Dextamethasone steroids

⁃ CBD oil, syringe under tongue

⁃ Liposomal vitamin C in water

⁃ Salt water mouth wash (disgusting..)

That’s just breakfast: working through the list this morning feels almost impossible as my tummy is feeling delicate; I manage to finish by 11 am. Lunchtime soon!

We got back home at 8.15 last night, making the train by the skin of our teeth as Kings Cross tube station was shut and a bus appeared before a cab so we hopped on. It was fab actually, a mini sightseeing tour of a different world. The wonderful nurse had spent ages teaching Steve how to remove my pump, the most memorable part being the words: ‘don’t inject any air into your wife’. That wasn’t detailed in the marriage vows but I think ‘in sickness and in health’ covers it and much more… Steve has already earned his ‘Husband of the Year’ accolade and this will only confirm it.

I videod the training session so Steve can watch it back when the big moment comes. A good friend has promised to hunt down her old frilly nurses’ hat to help Steve feel the part… I promise you a photo when she finds it…

I’m on a go-slow today, due to being awake for several hours in the night and also feeling the promised symptoms of new drug Irinotecan. But it was lovely to spend some time chatting with Ariane and to then finally get on top of that pesky business rates form, which felt like a real achievement. In the afternoon I had the pleasure of watching Isaac in his first ever hockey match. Boys’ hockey has just been introduced at school, and Isaac was invited on to a match team after only one training session. He is so fired up about it and has been pracising hockey non-stop around the house. Isaac is so fortunate to go to a school that helps children find their spark, and doesn’t label them ‘sporty’ or ‘not sporty’. Every day is busy from 8 am to 5.30 pm, and filled with such a wonderfully broad selection of subjects and experiences. So far this week Isaac has had a singing recital, singing exam, today’s match- and tomorrow he will be in Bedford for a second choir event and competition, led by the great choral composer Bob Chilcott. Lucky, lucky boy. Now that I don’t have to go back to the hospital to have my pump disconnected, I intend to drive up to Bedford to watch. A longer journey than I have done so far, and I hope my tummy behaves, but I so want to be there.

14 March

5.16 a.m…. bored, bored, bored. I’ve been awake since 3.30, pretty standard at the moment. May as well continue working my way through my big flask of drink to keep Steve happy: I’m supposed to drink 2 litres of fluid every 24 hours to help flush the chemo through my system and avoid it damaging my kidneys. However that liquid has to be a disgusting luke warm due to the cold sensitivity caused by my old friend Oxaliplatin (the drug Count Onc wanted to ditch but SuperProf has continued). I haven’t drunk squash since I was a child but a splashful is making it more palatable. So much to think of- am I eating enough? Drinking enough? Taking all my drugs, supplements and oils at the right time? Getting exercise? No wonder I’m wide awake…

Well there was no more sleep for me until the morning alarm put me out of my misery. Thanks to the steroids I actually feel ok and should manage the drive to Bedford later. I still have a huge zest for everything, for life, and am determined to make the most of every moment.

But first, a quiet morning. Having now finished and submitted my hymn composing competition entry (said no-one with terminal cancer ever), I have put music on the back burner for a bit as there is something more pressing I want to do, something for the children but I can’t say what as the older three read this blog… it is by not by any means easy doing it but I hope it will be a big comfort to them.

The competition was lovely, Bedford School being a much smaller venue of course compared with last week’s Birmingham Symphony Hall but it had a great accoustic and the choir sounded amazing- resulting in them winning the cup! So glad I could be there to witness it and see the utter delight on the children’s- and teachers’- faces.

I was absolutely shattered after driving back for an hour through rush hour traffic and then teaching a piano lesson soon after. Steve made a lovely-looking vegetable ramen for dinner but I couldn’t eat any of it despite being hungry: it was too vegetable-y and liquid-y; I craved plainer and drier food so tried again with some fishfingers and beans on toast and finally managed to get something down.

It was then time for Steve to scrub up and steel himself for the removal of my pump. The beer he downed nervously beforehand may have helped as he did brilliantly and all went well- no pain for me apart from the tortuous removal of the sticky dressings (the promised adhesive remover somehow hadn’t made it into the pack). But I was beautifully free from the pump and so glad not to have made a trip to Harpenden or London for it. Steve was visibly relieved, and now his only remaining doctor duty is to give my injection tomorrow evening when we arrive in Dorset. Yes, we are escaping again this weekend, chemo crash can do one…

15 March

Finally slept, thanks to utter exhaustion coupled with a big dose of Piriton… Steve had a more wakeful night as apparently I didn’t move an inch at any point and he kept checking that I was alive. Very kind of him.

Feeling totally shattered this morning and finding it hard to get my mojo back. Especially after reading the summary of last week’s SuperProf consultation which arrived on the doormat two days ago but I have been avoiding opening it. Of course I knew exactly what it was going to say, but it’s always harder seeing things written in black and white. It confirmed of course that things aren’t currently stable in the ovary, liver and lungs and that the second line chemo is going to try to achieve that. I have to believe that it might and not give up in any way.

So I’ve dragged myself out of bed and into the oxygen chamber after a few days off- the chemo pump would probably have exploded it I had attempted to go in with it…

As the day pans out, I’m feeling worse. The ‘Big Girl Chemo’ (aptly named by Bridesmaid Becca) is certainly showing what it’s made of. The crash has come early, taking my legs out from under me, and tummy issues are still prevalent making eating so hard. But together we pack the car for Dorset, take Isaac to his piano lesson and head straight afterwards to our happy place. The journey is fine but the time we get there I am on my knees and am starting to feel really nauseous- drat, thought I’d avoided that so far- so I take my emergency sickness medication and collapse into bed.

16 March

Awake since about 5 but the sun is shining and when we finally get out of bed we are rewarded with the best view in the world.

Today is significant: exactly a year ago saw the premiere of a big work that I wrote for St Joseph’s in the Park: A Time to Rejoice, an Easter cantata with narration, acting and songs for 3 school choirs, adult choir formed of keen teachers and parents, and organ. It was an entirely one-woman effort, a huge thing to pull off solo, but it came together beautifully and I couldn’t have been happier with it. Parents, teachers and children were as over the moon as me. Looking back at pictures and watching videos, it is hard to believe how quickly things have changed in such a short time. We all take our health for granted, but it can be taken away in an instant. But I am so grateful that I got to do this last year; it will be etched in so many people’s memories for a long time.

I won’t go into how terrible I am feeling right now as that would not be a nice read. I’m just hoping it won’t last too long and I can actually enjoy being here and seeing people. It is particularly difficult going through this for one reason only, which is to give me potentially more time rather than any kind of cure, and I hate my family seeing me like this, but I have to believe that the worst of this will pass and that it will be worth it for the good days that will follow.

I manage to get in the shower- huge win! I am rewarded with small clumps of hair coming out as I wash it- And So It Begins.. Not too much though, just a little trailer for the real thing…

With a colossal effort I get dressed and try some lunch. More nursery food- beans on toast and a fishfinger again. It’s just right and goes down. Another win!

The rest of the day just gets better; starting with visiting my parents and sorting plans for Mum to come and stay for a few days when the boys are skiing, which will be so good for both of us. Then a little walk to the sea front- was going to bring the wheelchair but determination took over and I was able to coax my wobbly legs into not just walking but a teeny tiny run with Isaac.

And then a wonderful evening being lifted up by the best family in the world, not to mention some takeaway Jerk chicken which I was actually able to enjoy. I’m not sure my stomach would echo that and it has been moaning about it ever since, but too bad, I’m not listening…

‘And whosoever liveth and believeth in me shall never die. Believest thou this?’ John 11:26