HPV right tonsil cancer diagnosis

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Hi all,

New to all this - just wanted to reach out at the moment.  My darling husband (we have been married for 4 months) has just been diagnosed with HPV cancer of his right tonsil with a couple of lymph nodes affected which we found out five weeks ago.

We had his first oncology appt on Monday just gone and since then he's had a dental assessment and we have a gastric tube/peg feed assessment next Friday and a wellness appt with the team next week - so much coming all at once.  Still waiting on hearing about his radiotherapy mask as he's going to be having six weeks of radio/chemo.

The first oncology appt was harder than we imagined it would be with all the facts about what he can expect to happen and how the radiotherapy is going to make him feel was really hard especially as we also got told that it could knock him sideways for six months etc.

Still trying to figure out how we are going to manage financially whilst he's off work and how I'm going to work around his appointments and wanting to be with him etc as we do everything together including work together.  He's not only my husband but my best friend. 

The stress of things is starting to manifest now and I know this is going to get worse for not only my husband but also myself.  He's in a lot of pain with his throat already so we are worried sick about when the treatment starts.

  • Thanks Hazel, I am already feeling it as my IBS is starting to flare up, it first started about seven years ago when I got told my dad had terminal cancer etc and comes back when I get stressed (typical!)

    We are still processing everything at the moment - trying to keep on top of work (we are both coach drivers).  

    We actually found out he had cancer on our 3 year anniversary of our first date (3 months after we got married) not quite how we imagined this year was going to pan out.

    We are taking every day as it comes, this morning was hard for Paul (my husband) and he got very upset about putting me through all this, bless him.  

  • Thank you - we have seen the finance bod once and he told us we weren't really entitled to a lot but since then we have found out that Paul needs to have a peg feed etc which apparently opens up other avenues so we now need to go and see them again to ask for more help with filling in forms because he won't be able to work and as we all know SSP doesn't exactly go far! 

  • Former Member
    Former Member in reply to LadyAH

    Hi LadyAH.

    My wife of 42 years was my rock during the treatment journey, task would have been much more difficult without her by my side, I always made sure that she had 'me time' with family/friends, time for recreation and Cava(?), carers are hit hard in these  toughest of times.

    Take care

    Peter

  • So sorry to hear about your other half’s diagnosis. There’s lots of great advice in here from many who have been through it. The only thing I’d add, for now, is the benefits of getting and keeping as fit as you can prior to and during the treatment. Walking or cycling or running etc in the run up to treatment will be of enormous help both physically and mentally. Just getting outside in the open air proved hugely beneficial to me and I’ve no doubt that it helped me recover relatively quickly. 
    Wishing you all the best for the coming weeks and beyond. M

  • Hi you’ll both get there one day at a time Paul

    might not be able to drive coaches as the treatment is fairly brutal and I know I coolant even drive to hospital John did all the driving. Once pain kicks in opiates are often needed which comes with its own issues just warning you. 
    here’d a clip of a video  my hubby  and I have been in ones in this shows how I am 6 years  after. 

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

    might help ti show you life life goes on for many if us. 
    Hugs Hazel. 

    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/

  • Thanks Mark, it will have to be gentle walking for Paul as he's got back issues having broken his back when he fell out of a plane at 18 in the army many many years ago etc so running or cycling are out lol 

  • Thanks so much Hazel.  Yes we know Paul won't be able to drive soon, he has already come to terms with that.  He's getting very tired now so I can only imagine he's going to get hit hard with that when the radiotherapy starts etc 

  • Paul will do this a day at a time. Honest. 

    We are taking every day as it comes, this morning was hard for Paul (my husband) and he got very upset about putting me through all this, bless him.

    Exactly how I felt. I set my affairs straight and for a little while felt it would be better for everyone that I just quietly slipped away. But you know my husband, normally very stoic and undemonstrative, put his arms round me and said, “ We will get through this together…. We. You wouldn’t hesitate to prop me up if I was ill. So don’t feel guilty asking me to prop you up. We are one and the same person. We hurt together and we will be well together” 

    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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