Just about to start my treatment prep

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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

  • Hi, I'm the same at the moment, pretty indifferent, although I know I will change when details of my treatment plan are finalised and begin. 

  • 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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Yes , I know what’s about to happen plan wise and feel I need to get organised but finding it difficult to prioritise anything… good luck with your treatment 

  • Very close to my story except I’ve had two surgeries and waiting for radiotherapy. I’m still like a rabbit in headlamps! But I’ve looked on mine as 3 steps. I’m now embarking on the third step. Inbox me if you need to. 

  • 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 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • 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 youHugging

  • 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..