15 February 2024

‘Love suffers long and is kind; love does not envy; love does not parade itself, is not puffed up; does not behave rudely, does not seek its own, is not provoked, thinks no evil; does not rejoice in iniquity, but rejoices in the truth; bears all things, believes all things, hopes all things, endures all things. Love never fails.’ 1 Corinthians 13:4-8

Valentine’s Day… after nearly 29 years of marriage, Steve and I don’t usually make a big deal of it, and have fun playing a game to guess who will decide to give a card: one of us, both, or neither. This year, unsurprisingly, was different. We both bought cards (me a wooden one, in case it needs to last for a lot of years…😥), and Steve surprised me with a gorgeous bunch of flowers on Tuesday evening, which he rarely does- just because we don’t need things like that to know that we are still totally and utterly in love after all these years.

The flowers were so very welcome after a rather-too-long Spire Spa day on Tuesday; actually there wasn’t so much of a spa vibe going on this time… I was the first of the day’s patients to arrive, raring to go so I could make a quick getaway later and be home in plenty of time to teach. I knew it wasn’t going to be a great day, however, when I was shown into one of the sickly green rooms.

Not a blob of purple in sight. The audacity! I was sat for well over an hour regretfully contemplating the green wall before a nurse appeared, having been delayed in staff training. Things crawled to lunchtime , when I realised that I’d ordered the chickpea wrap one too many times and it had lost all appeal entirely. When I realised that dinner was to be chickpeas in stew form, I gave up with the wrap altogether and picked a few bits out of the fruit salad.

The hours were spent happily enough, however, working on the final verse of the competition hymn. The nurses are intrigued- most people sit there all day with the TV blaring, but I filled the corridor with the rather different sounds of choir and organ. And a bit of hymn words karaoke from me…

The Spire Spa’s days are numbered, however, as are Count Onc’s. We have secured a new consultant for the next stage- not the one we were recommended as there is no news yet re him accepting our insurer- but a top London professor oncologist who leads trials in exactly my area. And a new hospital- the LOC in Harley Street (Leaders in Oncology Care) that comes highly recommended, plus looking at the posh entrance that resembles that of a Mayfair private residence, I can only assume that the food will be a step up from the chickpea wraps.

The slow start to the day was unexpectedly mirrored at the end: I was about to be plugged into my pocket pump and sent home when my nurse for the day appeared looking rather stressed, which she had reason to, as she had to break the news to me that they had only given me one drug out of the two that are supposed to be given in tandem, so I would have to be re-hooked up for a further two hours. Drat and double drat! Cue frantic messages to cancel my teaching and arrange for a friend (thank you, lovely Emma!) to collect Isaac from school. Not the best day to mark my 4-month anniversary since diagnosis…

At least I got a lot of composing done, but it was stopped in my tracks by my receiving my latest blood results. I was very nervous about seeing them as I hadn’t seen the numbers for over a month, due to the difficulty of getting the nurses to email them to me. These ones were needed however to submit for our review with the COC (the clinc prescribing repurposed drugs, in case anyone has lost the plot as much as me), so I insisted they sent them to me while I was at the hospital. I also thought that if there was anything I wanted to discuss with the nurses then this would be a good chance. There was. My tumour markers were up from 70 to 104. Surely that meant things were getting worse! But a quick google presented a different picture. It could mean that there is spread, but there is another scenario in which marker levels soar during chemo because of the high number of dead cancer cells circulating. That I like! And it makes sense to me: my inital pre-chemo markers were 40: after the first treatment, which clearly did a lot of good, the number immediately more than doubled to 84. But I was still worried at today’s markers and conveyed that to lovely Irish nurse Roma. ‘Aw, don’t take any notice of the markers, they aren’t reliable. The scan will show what’s what.’

So that’s a wee bit more pressure on the scan, then…

But half term beckons and a trip down to our seaside happy place for several days before getting back to serious business. We are taking delivery of our very own oxygen chamber at the end of next week having decided to hire one with a view to buying so that I can go in twice a day. I’m convinced it will really help my lungs as well as immunity/chemo side effects. Watch this space for the launch of Sam’s Oxygen Clinic with special prices for friends and family… (only kidding, you can come and oxygenise yourselves whenever you fancy it…)

More things on the horizon: an interesting supplement called Artemisin that is a miracle cure for malaria (shame I haven’t got that) but supossed to be excellent for cancer, plus Dr McLovley is trying to get me a referral to the the UCLH Intergrated Care Centre which will assess all the complementary things we are doing and give advice (hopefully to reduce some of them). They also provide information about Mistletoe injections (yes, the stuff you hang up at Christmas) which have apparently helped many people, plus other complementary treatments. It is an NHS service: it is so encouraging to see that these places exist, but I only stumbled on it whilst down the rabbit hole of internet research; it certainly isn’t common knowledge. I hope that means I can get an appointment.

Overall I have never been as sad, or as happy. The sad bit is obvious. The happy bit less so- you could only understand if you were in this situation- but I once heard someone who was terminally ill say how they were living life with so much more intensity of enjoyment and appreciation, and I can absolutely confirm that this is the case. Taking Isaac to school and kissing him goodbye. Collecting him and seeing so many lovely children and parents. Reading God’s Word all the time and finding comfort and assurance. Fully appreciating friends old and new and spending time with them. Enjoying the Hertfordshire countryside that I was so keen to give up to live by the sea. (We had a big relocation to Dorset fully planned for September, but this is on hold for now; Isaac in particular needs stability and we need to stay close to our grown-up girls). Celebrating every milestone and special occasion in particularly special ways: which brings us back to Valentine’s Day, where I shall leave you. With the help of my friends the steroids, but still feeling a huge sense of achievement since I was attached to my personal toxic drug dispenser, I spent the entire afternoon preparing a three-course ‘almost Vegan’ dinner. The menu read as follows: Pan Fried Scallops on pea puree (suitably bright green), followed by Mushroom and Leek Stroganoff Pie with Crispy Kale (suitably dark green) and rounded off with delicious and sugar-free chocolate pots made from avocado (there’s that green again) cacao powder and dark chocolate. Yum!

‘Rejoice evermore. Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you.’ 1 Thessalonians 5: 16-18