It was a busy day actually. I had to go in first for a chest x-ray. This is one of those things I have to have every two months. You see, the most common mets for osteosarcoma (look at me with my cancer vernacular. Mets = metastasis = spread) is to the lungs. So we keep monitoring. Monitoring is good. That was all quick and easy.
Made a new friend in The Living Room in the Macmillan centre, standard. Hi friend! Originally from NZ, we had some chats about that side of the world, as well as people, society, cancer and the cancer gene (Which fascinates me). It would be nice to catch up with her again one day.
When you’re in the head and neck clinic, you see all sorts of people who have clearly had head and neck surgery (or are waiting to). Head and neck people, I’m not judging you, I’m not pitying you, but wow. When I see what some of you have clearly gone through/are going through, gee do I feel lucky. I mean I don’t compare these sorts of things, not really. Everyone has their different struggles and everyone can find things about their own case that they are grateful for (I’ve written about this before). But I just want to give them a hug. I mean that would be terribly patronising if I did, but I give them a smile. And I hope they can see in my eyes that I mean it, and in some ways I get it. And please to all you who are struggling out there too, in whatever way, I want to give you a hug. Next time you see me/if we ever meet, let’s hug. It won’t cure any illnesses, but it’ll be a reminder that we’re never alone. And I care deeply about every one of you. I have a lot of love to go around.
Anyway, Deepti wasn’t in which was super sad because I was excited to see her! But I’m pretty sure she said she would be on holiday around now, so bloody good for her. She has earned that, she deserves that. Hope you’re enjoying yourself, girl!
So. Down to it.
Mr K: So you’ve spoken to the dentist?
Mr K: you haven’t?
Me: well… No…
Mr K: No dentists at all?
I mean I don’t know why he didn’t believe it, he has to refer me to see the dentist… And when I saw him a month ago he said today would be the day…
Anyway, I should be referred in the next couple of weeks. MRI results not in yet but once they are then I should hear about my referral. Apparently it’s not for their normal dentist guy because what I need is too difficult, though I didn’t really understand why. When I asked he said ‘because you can see the bone there and the soft tissue’. Ok… Were you not expecting bone? I mean you put it in there… I think… I was napping at the time so can’t verify but it is the commonly held belief.
I wish I’d had Deepti there to explain things to me properly. Mr K said ‘you know how we were waiting for it to shrink? Well now it’s shrunk too much. We need to get teeth in asap’. Do teeth stop it shrinking further? In which case… It’s going to shrink a lot more before I get teeth because they’re going to take a while… When I asked what he meant about it shrinking too much and that I had been concerned about that he said ‘teeth will help a little bit’. And that was the end of discussion.
It was all a bit confusing (standard). So he was surprised I hadn’t seen the dentist yet, but he can’t refer me to the dentist until he’s got MRI confirmation next week. And it’s been left too long and it’s shrunk too much. But when I saw him a month ago it was too soon and he said he would refer me now. And he glossed over the ‘shrunk too much thing’. And when I said I had been worried about that and worried that I would always look odd because of it and he said ‘teeth will help a bit’.
I mean I guess I knew that teeth wouldn’t really fix it. My face has sunken a lot, my nose has pretty much collapsed in on the right hand side of my face because it’s so sunken. So is that my life now? Deepti said previously never to say that, though is this the one time I should?
I love how seeing your surgeon leaves you with more questions than you had before.
But the main point I suppose is that once they get the MRI results, they are moving on my referral, so… That’s what I wanted I guess… I guess looking ‘a bit better’ is all I could really hope for but it was hard to hear. I guess we’ll wait and find out.
Oh I should probably also say… I had Oncology clinic today too, and the chest x-ray was clear. As expected. So that’s something. I’ll let you all know once I get more news. Bit of an anticlimax, I know.
I had a little cry about it all, but I’m ok. I am. Things are going well, really. But that doesn’t mean it’s not hard to hear some things.
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BIG HUG FROM ME AND THANKS FOR KEEPING US UP TO DATE ON HOW YOU ARE DOING. XXXXX
Jen it is ” A long and winding road ” and
“I want to hold your hand ” . “We can work it out ” “With a little help from my friends” . “All you need is love ” “I’ve got my Mo Jo working” and “Here comes the Sun”. Xxxx
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Jen, more good progress. Even if it’s another two weeks away.
It all helps.
Remember you probably look at your features a hundred times a day and you probably see blemishes nobody else can see. Ever.
When we met recently I saw nothing bad. We are all so happy to be with you, that nothing else matters to us.
Love as always, John.
Hi. Mr K was my son’s surgeon too. My son had surgery 3 years ago when he was 15. He is waiting for lipo filling of his cheek and dental implants. That’s a very busy department and waiting seems to be the norm!
Oh wow!!! Hi!!! So great to hear from you!!! 3 years waiting for dental implants… Does he have any teeth?! I hope he is going well aside from the waiting. Mr K is an absolute genius and you’re right, they are very busy. We’re all in it together!!! And very lucky to have him (doesn’t mean there aren’t struggles though!) I wish the best for you and your son. Much love xxx
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He kept his front teeth and the ones on the non surgery side. His tumour was his left side and they repaired his face with donor bone and muscle from his leg. Then he got an infection and they repaired that with donor tissue from his arm! I always say he’s as well as I can be, and I think from reading your blog you would understand that!
I wish you all the best too. Please keep in touch? Marie xoxo