Additional to the ongoing things I’m having to deal with that I mentioned in my previous post, is the itching.
When I came out of surgery, pretty much my whole face was numb. Nerve damage. I was told it would come back, but it would take time.
After a few days, parts of my numb face would itch. And I mean REALLY itch. I’ve never felt anything itch like this. And I would try to itch. But no matter how much I scratched the skin where it was itching, it wouldn’t satisfy the itch in the slightest – I couldn’t even feel that I was itching it. Nightmare!
I suppose it was the nerves coming back that made it itch. As the feeling came back to parts of my face, I found that I could satisfy the itch in the places I could feel my fingers scratching, but not in the places I couldn’t! Curious!
As I write, I can feel all of my face except my top lip, and a patch that runs down from my right eye to the top of my lip. The itch comes and goes, but I can guarantee that when it’s there, it’s more intense than any itch ever.
Anyway, enough about me! Some of you might remember my friend Katrina? She’s the one who saved me so much struggle when I had to go back to doing my own injections, by sharing her brilliant tips with me! She’s also brought me back to earth with her logic many times when I’ve been bothered by things (mainly because she’s had all the same worries and has rationalised them for herself!)
Having someone going through the same thing as you can be infinitely important.
So Katrina went in for her operation about a month after I did. Her osteosarcoma was in her pelvis, so she has a whole different set of problems and issues. But we had treatment at the same time and surgery at around the same time. I thought you would like to know she is recovering well. Another long path, fraught with difficulties like infection (Which I’m lucky I avoided) and not being able to walk (!), but she is heading in the right direction! Hopefully her walking will be without a limp in the future.
You try to stay away from comparing yourself to other people going through similar things, but it’s difficult to stay entirely away from it. I think of Katrina and think ‘gosh I’m so lucky I’ve at least been able to walk fine…I could take myself to the pub!!!!’ (As you may have realised, going to the pub signified normalcy for me). But then Katrina looks at me and thinks ‘gosh, I’m lucky to be able to still eat and thank goodness I didn’t have to go into surgery twice and that my face is fine’! People’s perspective on these things are interesting. I’ve even had friends with terminal cancer feel lucky they’re not dealing with what I have, whereas I obviously feel the opposite.
Katrina and I have another friend who we were treated alongside who went in for his surgery in the last few weeks and he has been less fortunate than we.
His osteosarcoma was in his lower jaw. You forget that all those horrible things they warned me about before my surgery are possibilities. You always think you’ll be ok (at least I do). That you’ll be in the group of people for whom it goes smoothly for. Well mine didn’t go smoothly. If you remember, my flap failed after 5 days. They have no idea why it failed and no one has ever had this problem so long after surgery before – it usually happens within 48 hours and they usually know why. But they saved mine. They apparently had a 6hr period after fail to save it and they must have got in just in time and put the vein from my leg in there. Eternally grateful. I should buy more lottery tickets.
But they warned that the flap could fail right from the beginning. That it was a very real scenario. That I had to prepare myself for waking up and they wouldn’t have succeeded. And then what? They would look to prosthetics. Still a solution but not the intended one. Unfortunately this is what he is facing.
So please send your love and support. Because there are people trying to make sense of the impossible, trying to fix the problematic. And there will be a solution for him. And it will be fine. But for now, he is left trying to deal with something no one should have to deal with. But we are all here to be strong when he can’t be. To think of him when he feels small and alone. And if you’re reading this my friend, please know there is a whole army behind you. Both here, and in hospital. And you are their first priority. It is horrible but it will be ok in one way or another (I know it might not feel like it right now). Because that is the only thing we will accept.