For now. The big overarching ‘for now’.
I swing between feeling celebratory about it and feeling rather a sense of foreboding. It’s been such a ruthless chemo and it was only going to be for a short stint, and it does feel amazing to be at the end of it. But while I’ve been coming in having chemo, at least it’s felt like I’m doing something about the great big tumour in my skull.
Because as we know, the tumour never goes. It’s still in my skull, still alive and active, though hopefully the outside of it has ‘ossified’ (turned into bone), which will slow its progress for a while. But it’s back into no-man’s land now, just waiting until it gets even bigger than it’s ever been, until the symptoms, the pain gets worse, until I perhaps lose the hearing in my one remaining good ear or it presses on my brain… Who knows. And we have no idea how long that will take. It might only be a couple of months, it may be a few.
Some hospitals have taken on the trend brought over from America of installing a bell for people to ring at the end of chemo. I have always been incredibly grateful that UCLH hasn’t got one. I wouldn’t have felt right ringing it the first time, and I certainly wouldn’t feel right ringing it now. Knowing that I’ll just be waiting until things get so bad before I’m onto seeing if another treatment might eke out a bit longer for me. Knowing my friends and I will be on treatment forever, even if one stage finishes…
Going into a period of waiting for things to get worse than they already are is scary.
But on the flip side, I like to celebrate. I like to celebrate life. I want to drink champagne at lunchtime on a Monday. Or take myself out for lunch and a pint (or three) to celebrate it being Friday. I like to make every day special where possible. So I think I’ll allow myself a bit of relief and maybe a small amount of celebration at getting to this point. After I’ve recovered from this chemo, I’ll be the best I’m going to feel before things start to get bad again, so may as well make the most of that. And indeed I will.
My parents turn up in two weeks, and we’ve got lots of nice things planned to do while they’re here. I’m really looking forward to their visit. It’ll be interesting balancing seeing people full-time and resting. At the moment I’m only really able to do it for a few hours then I need to go and rest my face, as smiling and talking starts to hurt after a while and usually means I need to change the dressing on the hole in my face a lot more regularly. But having people stay with you for a prolonged period of time is a bit different to four hours of a catch up with a friend you haven’t seen for a few weeks, and we will do a lot more existing in each other’s company (which is beautiful) than excited chattering and laughing. Though I’m sure there will be lots of that too. And music.
I keep reminding myself that although there is only worse to come, this treatment is hopefully buying a bit more time, and I’m going to do my best to enjoy it. As Lao Tzu so wisely said “If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.” A simplification, perhaps, but it rings true to me as a reminder that if I’m stressing about my future, I need to bring it right back to this moment. Right now I am alive and things are OK. I’ll have to face the scary things at some point, but no point in experiencing them too much now too, that seems unnecessary.
So although I do sometimes legitimately need to think about my future for practicality reasons, and keep reality in my mind, right now things are pretty OK. I get some time off from chemo, which is lovely, and I’m back to three monthly MRIs to keep an eye on when the tumour outgrows its current size (which I don’t feel is often enough but they obviously know best).
So let the party (soon) commence, with lots of rest along the way. I didn’t end up in hospital after last cycle so I’m hoping to avoid it again. It was pretty touch and go – temperature is 37.9, take the blanket off, now it’s 37.4, put the blanket back on, etc etc. But it never hit the 38 required for hospital admission. So fingers crossed I can avoid it again. Then I’m hoping to have some time not having to think about cancer, aside from the (sometimes multiple) daily dressings of the huge hole in my face, the MRI in a month, the two-week trips I still have to make to the cancer centre to get my PICC line re-dressed (I’ll get it taken out after the MRI and possible hospital admission), the oncologist appointment in 6 weeks, etc.
But for now, here’s my latest eyepatch I made, I think it’s my favourite yet:
19 Comments Add yours
I always welcome an update from you Jen. So glad to hear that you are heading into a time where you can just “be”
I love that Lau Tzu quote by the way.
Something we can all aspire to along with you…To be focused on the present AND to celebrate.
Cheers to you Lovely. I’m on board with your plan. Thank you for the timely reminder! xo
Thank you! Yes some time but waiting for treatment to start will be nice, though I’ll still have to keep going on for one thing or another. But that’s ok.
I find that quote a nice reminder 😊
Your parents must be so proud of you 😍 can’t think how excited they must be feeling at the thought of spending time with you and I’m sure you ll build back your strength with alternate doses of beer and something bubbly! A girl has to celebrate 🥳🥂love the new patch just the right hint of bling ❤️
I like to think they are Hehe
Yep, we’re all really looking forward to it. Dad LOVES London.
Yes to beer and bubbly! You know me well!
Totally get the bell thing- my daughter did it, slightly bemused, the first time, but wont do it again. You look amazing in that eye patch and i wish you relaxing and restful period now chemo is done.
Yeah it’s an odd tradition. I mean I get it… Sort of… But I don’t want any part of it.
Thank you xxx
You look beautiful. I am praying for you.
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Your extraordinary writing here stuns me. I am always relieved and happy when your blog pops up in my email, but this column touched me heart deeply.
You’re so kind, thank you so much 💜 💜
Love the Lau Tzu quote and I try to live by that everyday. Life is right now. Here’s to some nice downtime and I love reading your posts. Talented girl.
Another great blog and have a great beer and bubbly time. Will be so good when Jenny and Andy get there to enjoy with you. Love the eye patch. I am wondering what materials the flowers are… is it paint or material? Very cool. Also love those boots you have. 😍
Yep looking forward to good times ahead!! 😍
Wishing you the best of times and lots of music with Mum and Dad Jen. Love Martyn and Liz xxx
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Love the eye patch Jen, it is a good one. i’ll raise a glass of bubbly to you on a monday when this round is finished.
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I love the picture and great needle work on your eye patch! I’d agree with you about celebrating the small things, have a drink on me xx
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I love the eye patch Jen! It has Hamilton vibes 💛🖤 I’m happy to hear chemo is over for this round, praying that you don’t end up in hospital again after. I’m really happy to hear your parents are coming to visit. It’s true that you can ‘exist’ together when people visit for a longer period of time than a few hours catch up. I can hear the music, the chinking of cutlery and the laughing already.
Omg I hadn’t thought of Hamilton, but it does have vibes! Thank you!!! Yep, lots of fun times to come!!
Dear Jen Mentioning bells reminded me of Anthem by Leonard Cohen Ring the bells that still can ring Forget your perfect offering There’s a crack a crack in everything That’s how the light gets in
I hope you feel ok when your parents are with you and get to enjoy London with them and anywhere else you plan to go. I know they’re so looking forward to spending time with you and being together as a family. Thanks for sharing your stories and opening your heart. Much love Jen x
Ah yes, they’re such iconic lyrics, I love them.
Yeah looking very much to having some fun over the next few weeks and hopefully having a little break from having to think about cancer.