‘Rejoicing in hope; patient in tribulation; continuing instant in prayer’. Romans 12:12
The oncology unit at the Spire Hospital Harpenden is called Heartwood Ward: it sounds like a Lego Friends set, the slightly nauseating range aimed at girls. I can just picture it- everything in pastel pink and purple, with little Lego chemotherapy nurses wheeling around mini IV drips. And a tiny Lego bell at the entrance… Don’t get me started about The Bell… ah, too late.
Even before I had cancer I felt uneasy about The Bell. The one that hangs in every cancer ward, offering hope to many, who will get to ring it at the end of treatment . But what about all those who enter the ward for the first time like me and see The Bell hanging there in the knowledge that they aren’t expected to ever ring it? Even if I was cured I would refuse to ring it in solidarity with those who will never get to. As it is I deliberately ignore it whenever I walk past.
Anyway, back to the real Heartwood Ward. They’ve got the purple right in two of the eight rooms, with the other pairs being red, orange and lurid green. On reflection I would prefer pink…
My chemo is always in one of the purple or green rooms, the hardcore ones with hospital beds in. The red and orange rooms just have chairs and are used for blood tests and other small procedures. So at least I have a fifty percent chance of getting a purple room each time. Today it is another purple day- yay!
Despite the purple, this is not where I (or anyone) would have chosen to be on the second day of the year of course. Steve is back at work but Isaac is still off school for the rest of the week; in normal circumstances I would have enjoyed a quiet few days in Isaac’s easy company, playing games and getting back to music practice and homework. But I need to focus on the fact that we can still do these things alongside the chemo, and that Isaac would far rather be going on a couple of playdates than spending the entire week with me reminding him how to divide fractions…
I am still having discomfort and stabbing pains in my abdomen and hope that today’s chemo will stop these in its tracks. One of the most difficult things in this situation is trying not to worry about each new symptom and what might be going on inside to cause it. On the other hand there’s always a chance that I strained some muscles squeezing into a tiny space whilst playing hide-and-seek on Saturday (I know, I know… but it was a lot of fun).
My nurse today was very wary about the new drugs that I am taking and said she needed to talk to the pharmacist before chemo could go ahead. Happily there were no issues- expected as we knew the drugs have no contraindications with chemo- but it shows that what the COC is doing is pretty cutting edge and not widely seen. Quite exciting really, if something like this can be exciting…
At least I know the routine now. Hospital chemo today, home hooked up to my little pump until Thursday (graced by the additional company of neuropathy/extreme cold sensitivity), IV Vit C on Friday, Chemo Crash misery Saturday-Wednesday and then a few lovely days before it all starts again. Cool.
The question is how to make the most of each day, whether a plain-sailing one or a ‘shoot me now, it will be more fun’ scenario. I have decided to simplify my previous daily to-do list with the limitations of chemo side-effects in mind:
⁃ Exercise
⁃ Music (listening or playing)
⁃ Reading
⁃ 1 piece admin
Of course this week will also include playing games with Isaac, building Lego, supervising homework and getting back into music practice. Grade 5 singing for him coming up this term so lots of song words to memorise, some not in English, so that will be good for my brain as well as Isaac’s. Music is such a wonderful distraction, one of the only things that I can really lose myself in at the moment. The other is reading the Bible and commentaries on it, many by dear friends of ours, some now departed such as Don Fortner:
‘All things work together for good to them that love God, to them who are the called according to His purpose.’ Romans 8:28. Don said: “Let us find in this blessed truth comfort for every sorrow, strength to endure every trial, courage to face every foe, and joy to lighten the load of our daily pilgrimage through this world.”
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amazing how today you mentioned our dear brother Don. I wrote to Shelby today to update her on all our family, as she knows us all so well. We pray for her often. She is still working tirelessly in Don’s office still typing his notes up.
Shelby emailed me today (hi, Shelby, thank you so much!) and it couldn’t have been more well-timed and comforting.
I totally agree about the bell.
It’s horrible for those who can’t ring it and awful for those hearing it while still in treatment. Discussions go on about removing it. Apparently as many don’t ring it as do.
I’ve just messaged you a lego friends image of a hospital -had to be done as it’s in a PURPLE box!!!!
Enjoy your week with Isaac, hopefully you won’t feel too bad.
Sending love as always
Kay
💜
X
You’re writing always inspires me, and the way you are telling your story will give many many others. Lots of inspiration
Just to be clear about a to-do list
I have realised many times that you never actually get to the end of that to do list. It’s just a list that you do things from that way I’ve never got disappointed with not finishing it
My love to you and all your family for the start of the New Year whatever that will bring, but we know a wedding on the horizon gives us something to look forward to
Allison xx
Thank you! And yes I see the to-do list in the same way, as a motivator but not having to be entirely completed.
It is lovely to have the wedding as a goal for sure xx