As if the blog hadn’t reached novel-length proportions already… you may need to treat this new collection of diary entries as a box set, popcorn accompaniment recommended- but a word of warning, it’s not exactly a comedy…
Saturday 23 March
I can’t remember the last time I had a day all to myself, all by myself, but it was probably about 30 years ago… Today feels like the world has stopped; home alone since the boys left for France at 5 am (except for Ariane so sweetly appearing with an almond croissant for me at 8.15), there is a sense of utter calm and peace around me. I am doing and eating what I want, when I want- don’t panic, Steve, I still faithfully consumed my morning SuperSmoothie, being more than grateful for the little bags of carefully-measured ingredients that you left in the freezer.
11 days on from chemo and I am still incredibly weak; the last few days have been very hard as I have had a lot of low abdominal pain coupled with a body that doesn’t want to play ball. Walking is not easy; my previous 4k achievements seem like a distant dream. I went to town with the girls yesterday but managed just two shops; by the second one, Tesco, I was shuffling around like a zombie, leaning on the trolley for all it was worth. The outing wrecked me entirely, but there was no way I was going to miss Isaac’s end-of-term cross country event. This was mainly because I thought I needed to be there to pick up the pieces: Isaac had a traumatic experience last year when he pushed himself too hard and collapsed rather-too-dramatically half way round. But children just like to put their parents through the mill- this year he paced himself and ran with utter determination to finish 9th out of over 60 children despite being the smallest. His delighted face was an utter joy to see. Click- another picture to store in the Happy Memories part of my brain.
I spend the morning in my pyjamas but do not sit and relax because that concept is utterly alien to me. I slowly but steadily complete the chores- hanging up wet washing, unloading the dishwasher, changing Isaac’s bedsheets. All of which seem trifling and mundane to most people, but are major achievements for me today. I venture into the music room cupboards and resolve to embark on another big project this week… sorting out over 25 years of music and teaching materials and finding new homes for anything that Isaac won’t use. And my violin… there is no-one in the family to pass it to so I think I will sell it. This is not being defeatest or fatalistic, just practical.
After lunch I take myself off to the garden hot tub: ah, this is more like it! So wonderful to wallow in 38.5 degrees of bliss whist feeling the spring air on my face and listening to the birds sing.
The rest of the day is lovely: Lydia and Jasper arrive for a sleepover as Connor is away- a win for all of us. Jasper is on top form, entertaining us with his constant, hilarious chatter. We get a chinese takeaway, my first since diagnosis, and it is absolutely delicious. When Jasper is in bed, we cosy up in the lounge and watch a Harry Potter movie, something we haven’t done for as many years as I can remember. We don’t finish it as the oxygen chamber beckons; I need to get an hour in before bed.
Sunday 24 March
Hooray, I’m finally feeling normal again! No pain, my jelly legs have almost disappeared and energy levels are good. 12 days of Superchemo hell for a couple of good days- is it worth it? You bet.
I join church by logging on to the You Tube channel (our church is based on the South Coast); the sermon is about heaven and just what I need to hear. Afterwards I get stuck into the music room project: it is clear that I am going to have be ruthless here as my whole musical life is in one cupboard and most of it needs to go. I lose myself reading my GCSE and A-level work; meticulous, detailed essays showing my absolute passion for music and acute keeness to achieve the very highest level. I cannot resist taking a picture of one particularly complementary teacher’s comment before adding the multi-page labour of love to the recycling pile…
So many compositions, painstakingly notated by hand in the pre-computer-software days.. these are given a stay of execution and put into a folder for Isaac to discover in years to come. All of my piano music, of course, is for him and isn’t going anywhere, but the wealth of violin materials is a different matter; it needs a new home now where another teacher and pupils can breathe life into it.
It is a gorgeous sunny afternoon and a wonderful outing beckons: today is Village Open Day at Knebworth House (lovingly renamed ‘Peasants’ Day’ by Mad Photographer Joan). The big girls, their other halves, little Jasper and I have a fabulous time enjoying the gardens, dinosaurs and of course the adventure playgound where grown ups can chuck themselves down huge slides in sacks. Of course I just sit and watch…NOT!
Monday 25 March
This is the day I have been looking forward to most- girly fun is planned from morning to night. First a spa morning with the girls; not for any treatments but for special time relaxing together.
Annoyingly the abdominal pain has decided that it also fancies a spa morning, but the lovely pools and heated hot stone beds manage to cramp its style considerably.
Sister-in-law Mad Joan arrives from Dorset when we get back- it is the best thing to see her and I’m so deeply touched and grateful that she offered to come and stay and then take me to tomorrow’s chemo. She never fails to both make me laugh and to feel good about myself.
Today we have an important mission- a trip to ‘Hair to Ware’ in search of an upgrade to my current locks… It may be a wig shop but it looks and feels like an upscale hairdressers, with equal measure of pink fluffiness and sparkly glamour. All very promising and it is a lot of fun playing dress up, but unfortunately none of the wigs are quite me: apart from the styles not quite nailing it they are all very ‘big’ and make me feel like I am about to walk on to the set of Dynasty. There is one that feels almost me- it’s pretty obvious which one- but I’m convinced that I need to try some more in case there is such a thing as the perfect hair out there waiting for me.
The girls, Joan and I have a lovely evening out at a local Mediterranean restaurant.
My painful tummy insists on gate crashing yet again and it is a reminder that tomorrow’s treatment is waiting in the wings… I don’t settle to sleep easily, staying up past midnight to chat to Steve in the Alps and then to dwell on far too many things… it is all so very hard. I can’t think about what might have been, if the path was different. I can’t wish that I had noticed the tiny signs that something was wrong much earlier. I can’t wish that I had a different cancer, a girly one maybe such as breast or ovarian, preferably one in which I could have had an efficient bit of surgery to whip it out and then mop up any stragglers with a nice light bit of chemo (like Kate, I can’t help adding… but poor poor lady all the same). I can’t wish that the horrid treatment at least had the aim of curing me. I can’t wish that I was in the Alps with my beloved boys, enjoying the mountain scenery and tucking into the amazing food that only France can offer.
But I am human and I do.
Tuesday 26 March
Woke far too early feeling shattered; this is annoyingly becoming a pattern… but instead of languishing in bed with my thoughts I decided to take them to the oxygen chamber instead. Some studies suggest that hyperbaric oxgyen as close to chemo as possible can make cancer cells easier to kill. Who knows, but I have to try. One thing I have really learnt is that everyone’s body is totally unique and what works for one person may not for another. So whilst it was great to hear plenty of encouraging stories at first (‘My Uncle Bob had stage 4 cancer and he’s fine now’), I quickly realised that these would have little bearing on my own experience. For a start, there are many degrees of advanced cancer. A stage 4 diagnosis covers everything from one place of spread to many: I naively thought that the stage was indicative of the number of places of spread (I’m stage 4 whichever way you look at it…). I also had no idea that cancers starting off in exactly the same way can soon diverge into a multitude of genetic variations, resulting in very different scenarios and experiences for the unfortunate hosts…If cancer was a person, it would be undergoing some serious therapy for its complex, unstable personality.
Mad Joan lifts me up the moment I see her, which is after she has arrived back from an impromptu 7 a.m. trip to the McDonalds drive-through for a spot of tea and porridge… I crack up… only her…
It’s fun taking the train together and we smile and laugh a lot. Gorgeous deep blue skies and spring sunshine greet us as we step off the train at King’s Cross, and the air is warmer at last; spring is truly here.
Spring has always been my favourite season with the promise of new life that it holds. The rebirth of beautiful flowers from bulbs that have lain in the earth, seemingly dead, reminds me of the wonderful promises of God:
‘And this is the will of Him who sent Me, that everyone who sees the Son and believes in Him may have everlasting life; and I will raise him up at the last day.’ John 6:40
This is the only thing that can comfort and take me away from last night’s thoughts.
I’m not at the main LOC building but the Macmillan centre a few doors down. the sign on the door screaming that you have cancer, just in case you had forgotten. The set-up takes some adjusting to; thus far I have been rather spoilt with hotel-style ensuite rooms, beds with sumptuous linen and restaurant-style menus. Now I’m in a large, open room with ornate ceiling and a grand fireplace, divided into six chemo bays, each with an identical chair eerily similar to a dentist’s chair but rather more comfortable. I wonder about this room’s identity in a former life, imagining the skipping feet and echoing voices of children from a wealthy family as they endeavoured unsuccessfully to be seen and not heard.
First stop: blood test: the one in which, game-show style, I will discover if I’m staying or going home. I’m glad they took my blood pressure early on because as the waiting time ticks by my palms have started to sweat and my heart is racing. A lot depends on today going ahead- my entire 50th birthday plans to be precise… please, no more devastating cancellations…
There is a little spanner in the works when I cannot confirm which vein my port was connected to when it was inserted back in October. The big bulgy one, surely? But no, a specific letter detailing this is required. I’m not sure I’ve ever seen such a thing and have certainly never been asked for it; the chemo nurses so far have just merrily stuffed the needle into my port and pressed the go button… There is talk of an x-ray to confirm the necessary info, but happily the letter is obtained after a lot of emails have been sent. This does however show how meticulous they are at LOC.
‘Ok, just giving you your pre-meds now,’ my nurse for the day reveals casually in his low, slow St Lucian accent.
‘Wait, does that mean it’s happening? That bloods are good?’ I ask, a sliver of happy anticipation daring to build. It’s a laid-back yes from him, and suddenly the next three weeks are presented to me on a plate, the most beautiful gift. Relieved doesn’t cover it.
Once we have lift off the day passes quickly. No five-star reviews for the lunch but then this is not a hospital with a big catering department… The highlight is definitely my visit from the lovely reflexologist, who reveals after his wonderful, detailed massaging of my feet that my body is actually pretty well-balanced. Ha! The irony… but he identifies correctly that there is no sign of the shoulder tension I used to suffer with as a result of long-term poor posture at the piano… every cloud…
All too soon I’m connected to my hip flask- sorry, portable poison pump- and we are on our way back to the sticks. New drug Irinotecan is the keenest bean yet to showcase her side effects (let’s call her Irene so she has the name as well as the personality of a grumpy dinner lady). My tummy started bubbling in complaint almost as soon as the infusion started and feels very delicate indeed as we travel home. Plus I’m weak and spaced out; an evening on the sofa and piece of toast if I can be bothered to get up are the only things on the cards… plus of course a lovely video call with the ski team as they eat dinner; for once I feel no longing for their mountain fare…
I wil leave you there. We all know what’s coming: a couple of steroid days feeling slightly manic but near enough human if I can stave off any nausea or dodgy tummy symptoms, then the multi-car-pile-up crash nicely timed for the Easter weekend. But the constant presence of so many amazing people- my girls, friends, Joan, my Mum, my brother and many more including the readers of this blog, plus the boys when they return- will help me through and keep me smiling.
‘…for I will turn their mourning into joy, and will comfort them, and make them rejoice from their sorrow.’ Jeremiah 31:13
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So glad to read of your good time days, the laughs and the fun memories you are enjoying with your family. May there be many more x
Well that was a blog and a half! So glad you are making so many happy memories with everyone.
Also pleased you got your chemo so you can look towards your birthday in between feeling rubbish and fingers crossed you feel able to enjoy it.
I vowed to not read your blogs at work anymore so read this one last night before going to sleep! Another not got time if you are going to put funny photos in it of your wig trying session – in bed, Tony asleep and me jiggling the bed sniggering!!!
I think actually the old hag style was the best but in the colour of the last one.
I know you have plenty of people around while Steve is away but if you need anything at all message me.
Sending love as always
Kay
💜
x
Ooh you had a late night like
me!! Thanks for feedback re wigs, that’s a really helpful point! Xxx
As always, sending lots of love Sam! So glad you have your amazing team of girls around you (everyone needs a Mad Aunty Joan in their life to lift them up 😂!) while the boys are away. Your updates are so beautifully written and so uplifting, but also make me shed a tear… You truly are an inspiration to us all. Please share the special big birthday date with us all???!!!! Again just shout if you need anything.. Lots of love and healing vibes as always xxx 😘
Golden Arches… Can’t believe you’d out me like this… Literally caught in the act… spoon in mouth looking sheepish ha! xx
Ha ha!!!!! Everything goes in the blog, especially the mad antics of my wonderful sister-in-law…
What a week! What a blog! Thank you for doing this and sharing you are amazing so we can laugh and cry with you here. Sending love and prayers for a peaceful and happy Easter with your family and safe return of your lovely boys x x🙏