Hi everyone, I'm not very good with tech, and I've never really done any web chats, embarrassing for a 42 year old I know but bear with me!
I have been diagnosed with a snuc during lockdown that has spread to the lymph nodes in my neck and also into the brain cavity. I have had 2 rounds of chemotherapy so far and I am due to start a combined chemo and radiotherapy treatment on the 13th July. It will be radiotherapy 5 days a week for 6weeks and chemotherapy once a week during those 6 weeks.
I'm just wondering if anyone has had a similar treatment in a similar area and could offer me a bit of advice about what to expect, I've been told it probably will be quite hard going but any helpful advice or pointers would be really appreciated.
Some developments today Dee, I'm just waiting for my transfer up to guys hospital where I'm usually treated. They're talking about changes to my treatment and they want my wife there tomorrow too for the discussion.
Sounds like I'm gonna be going under the knife tomorrow aswell to debulk the tumour. My wife came in to the hospital to drop some more provisions off. Looks like I'm in hospital for the rest of the week at least!
Hows your day been, give me some normality
Hello Chippy! Hope they're still feeding u and getting u built up for tomorrow! How u feeling about it Chippy? Are they going up ur nose? I wonder what changes they are making? Maybe it'll be a positive change saying as they're taking a bit of the tumour away....
I'll be thinking about u Chippy
Was reading ur message about fighting in the ring and Rocky and one of my friends called me Rocky at the start of my treatment and still calls me Rocky and wen I ring her she still blasts eye of the tiger down the phone lol. And I love it and I'm singing it down the phone at the top of my voice lol. I find it really empowering. So u keep that image in ur head about u in the ring for this fight tomorrow Chippy and u sing that song at the top of ur voice in ur head cos u can't scare the nurses lol, and u keep that positive attitude and u remember ur a champ Chippy!!!
Well I'm in the process of gutting my box room and I'm absolutely exhausted and everything aches and I wish I'd never started and I wish I hadn't bought so much shite in the 1st place
Hi Chippy,
Thinking of you tomorrow hope they get as much as the awful thing out as possible stay strong Chippy and keep us posted when you feel up to it.
Helen
Good luck today Chippy, thinking and praying for u. hope you've settled in ok to the new hospital. You've got this Chippy
Eye of the tiger was the first record I ever owned!! I think I was about 7 or 8 years old and my older cousin gave me her old record player and that one 7 inch single with it.
I remember me and my little brother sat on the floor in our bedroom playing that one record over and over again!! We must have drove my mum mad!
How crazy that you got the rocky thing going on too! I love those films, me and my wife will always sit down and watch one the night before I got any big day at hospital! I've got eye of the tiger and that other big trumpet tune playing in my head everytime I walk through the hospital doors!!
I couldn't count how many times I've said how the hell did we collect so much junk when we have been clearing out!!
My wife just ebays it all, people will buy any old crap, well we bought the crap in the first place
Cheers Dee, your messages really mean alot. They are talking about debulking the tumour and also going through the side of the eye under the eyelid to clip some blood vessels and stop the bleeding problem.
They want my wife up here with me for a chat about the changes to the treatment so she is coming here at midday.
I'm feeling nervous but optimistic, things seem to be shifting on now which can only be a good thing
Cheers for the lovely message Helen. I will let everyone know how I get on today.
How did your dad get on with his biopsy, any relief for him?
Hi Chippy, I'm partial to a wee Rocky film, they never age! The Creed ones are good too! I love boxing actually! We need a Rocky attitude going thru this!
I'm sure u are nervous Chippy, ask them for a sedative before u go down, even a wee diazepam? I'd be nervous too Chippy, but ur being very brave and ur usual upbeat self so that's brilliant Chippy.
Keep us informed if u feel up to Chippy, we're all thinking about u, I've told my family and friends about u and they're all thinking about u too! You've got this Rocky!!!
Well Dee how things can change in a few hours, now they're not gonna do surgery and I'm waiting for my blood thinner injections and I'm going home tonight!!
They decided it's not worth the risk with radiotherapy coming up if they can just keep it under control in the meantime.
My wife came up and we had what was quite a tough meeting with my consultant. She pretty much said dropping the dose of radiotherapy in line with the 5% risk factor for the bit inside the brain cavity is in her opinion not going to kill the tumour because of how aggressive and resistant to the chemo it has been.
She's talking about upping the dose to try and kill it but obviously upping the risk to my eyes and brain too. Because of where the tumour is the radiotherapy could potentially affect both eyes and they were saying it could affect cognitive brain function and change the personality.
What would Rocky do? I'm thinking no risk no reward!
Well I'm glad ur going home Chippy! I bet ur over the moon about that!
Did they ever tell u what size ur tumour was Chippy? When I had radiotherapy my oncologist told me there's a 30% chance I'll go blind. And I said so that's a 70% chance I won't go blind. That's the way I looked at it. I wonder will u get the same radiotherapy as me? Do u know what ur getting? I don't remember them telling me about personality changes, thats making me think urs is different
Well Chippy u have a big decision to make.... have they mentioned an operation after treatment?
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