Hi all just a quick intro, I’m Mario ,I started being checked out after finding a lump on my neck in Sept 2024 was diagnosed on the 20th Dec ! it’s been a bit of a roller coaster to eventually get to the starting point for my treatment . Ive been told it’s curable with radiotherapy and chemo without any surgery I understand it’s going to be tough going for at least the next 3 months or so … I have to be honest I’m still a bit like a rabbit caught in the headlights ! Im wondering if this is normal or should I be more organised and focused on what’s in front of me ?
Even though I’ve read the booklets and listened to everything I still feel like I’m just on autopilot taking things a day at a time…normally I’m the type of person who has a planA and a plan B . But I can’t seem to concentrate enough to even attempt sorting out my personal stuff that I know I need to get done to help me through , I hope this is ok and normal as I don’t really feel like I’m loosing the plot , just that I feel a bit perplexed or rather indifferent about it all .
Im pretty sure things will hit home soon but dont want to be caught out not being properly prepared
Hi Mario
T2N1M0 HPV16+ tonsil cancer finished chemoradio June 2023
It will be tough going, no other way of dressing it up, some do get off relatively lightly though.... try to stay away from Google, use Macmillan and NHS sites...stick with this forum....plenty of support and sound advice from others who have walked the treatment walk....any question any time....
Peter
I have to be honest I’m still a bit like a rabbit caught in the headlights ! Im wondering if this is normal or should I be more organised and focused on what’s in front of me ?
Hi and welcome.
You do what’s comfortable for you. There is no programme that fits everybody.
I got my affairs in order because I was convinced I was going to die.
When that was done, my oncologist told me the treatment was curative and my husband kicked me up the backside I just took it day by day.
It’s a tough treatment and my advice would be to not be brave, tell the radio and chemo teams how you feel and do everything you’re told.
Some people need the fight as something to focus on and that’s good. I just went with the flow and that’s good too.
if you are offered a stomach tube grab the chance.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi take it one day at a time so t look too far in advance my blog below might help with tips. Like Dani I almost showed hubby how to do online banking !!!! I didn’t and I’m still here almost 7 years since diagnosis I. May.
If I could give one bit of advise take a feeding tube if offered or be prepared to have a ng tube fitted during treatment. Mine and many others they were lifesavers mine enabled me ton have a quick recovery.
you can do it I did it’s not easy but if I can do it anyone can.
hugs
Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hey Maz-
Totally normal to feel kind of detached and one day at a time. Dani and Peter offer excellent perspective. I didn't do any major "getting my affairs in order"; I didn't allow myself to even consider the idea of death- I didn't want to give that possibility any energy at all. I used an online vehicle called CaringBridge to report to all my people (friends, family). It was an almost daily goal to share not only details of treatment but memories and thoughts. I also made a 3-4 song playlist for my team to play during my radiation treatments. Sharing music that I loved helped me manage my claustrophobia and include my people on my journey. We all carried a song(s) in our heart together to get through the days...everyone is different and you will intuit how to cope. Be your best advocate: ask questions! Knowledge is Power.
We are all here for you
Hi Maz, here is a post that you might find helpful..
Helpful tips for those about to start treatment.. - Macmillan Online Community
Loz (61)
Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive..
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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