Survivor guilt? Worry about tempting fate?

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Ok, not sure if this is ok, I am sure comments will tell me. 

I am well on the path to recovery from my head & neck cancer.  (5cm HPV cancer on left tonsil & tongue - treated with Radiotherapy and Chemo)

  • Diagnosed in Feb 2023 I had my last treatment back on the 18th of May 2023, and had the all clear MRI scan results in mid Sept. 
  • I am eating mostly normally - although not the same level of spicy foods, and more water when I eat than I used to.   My PEG was removed 4 weeks ago.
  • I have gone back to running for exercise, restarting Couch to 5K that I did 3 years ago... I've just completed week 3.
  • I am back in full time work.
  • I am back to my old levels of sleep - 8 hours a night.

I know that there are SO many people out there who have not been as lucky as me.  They are still struggling along their own path, and life will always be changed.  I feel guilty sharing my story to these people, as it feels like another reason for them to cry WHY F*$%ING ME? at the universe.  I am also nervous about tempting fate.  Am I 'gloating' about where I am now?  Setting myself up for the next bombshell?  I don't know.  I just know that I am looking back on this year and saying... "well - that happened".

There are some people out there though who will be near the start of the journey.  Who have dark thoughts, and can only imagine the worst.  For them, let me just say - the treatment is rough.   BUT YOU CAN RECOVER.  You can get back to your old self, eating in restaurants, running that marathon, drinking with your friends....  Accept that for the period of treatment & for a few months afterwards, everything is going to be tough.  Rely on people.  Lean on them.  Accept you cannot do everything you used to.  BUT ONLY FOR A WHILE - YOU CAN RECOVER!

Sadly, not everyone of course and I am so sorry for those that don't.

I just want people starting out to know that sometimes you get lucky enough to get your old life back unchanged in any significant way.

p.s. If you have a PEG, and you hate it.  You hate the way it makes you feel about your body, what it signifies etc.  Don't worry about it.  You will probably need to use it, and it will help you have the strength to fight, to recover.  It is all about having the strength to recover.  Recovering from the treatments will be one of your hardest battles.

p.p.s I know you will want to get better noticably every day after treatments.  It takes time.  The first 2 months post radio are slow and painful.  Once you start eating again though, and give your body that extra ability to fight, you can better so dramatically so quickly.  I went from 100% Peg to 100% oral food in less than 2 weeks I was back at work and exercising again a month later.

  • Hi Mike. That’s a really lovely post and it will give encouragement to those just starting out on treatment and indeed recovery so don’t feel guilty about sharing your story. 
    I like to share this essay by psychologist Peter Harvey for those in recovery to read. You might find it resonates with your survivor guilt. 
    Best of luck for your future recovery and long life … and thank you 

    www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Hi Mike great post it’s what others who are to follow will appreciate. The Peter Harvey article helped me all the way along recivery and I still read it now occasionally.
    m hugs Hazel xx. 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Mike, thanks for much for posting this. I have been worrying that my reasonably good recovery to date is maybe a bad sign. Don't get me wrong, it has been brutal but I am 9 weeks post treatment (right tonsil, SCC) and it's going relatively well. Managed to eat throughout treatment (did go down to Ensure drinks, soups and shakes during the worst times) so didn't use the PEG (which is being removed tomorrow). I am not back to normal eating wise but did manage a rib eye steak last week! Have lots of other issues (dry mouth, mucus etc) but have restarted my gym membership and was wondering about getting back to running. You've inspired me to maybe think about redoing a beginners course in the New Year.  Saw my ENT consultant on Friday who did the scope and put me forward for MRI scan so guessing he felt I was sufficiently healed to do so. I had the MRI today (hospital called me yesterday with a cancellation appointment)... so now have the agonising wait for results. I suddenly feel quite nervous... Have asked my Macmillan Nurse for an update on when I might get the results.  Feels weird to think that someone somewhere knows whether I still have cancer or not... eek! 

  • Hi Mike

    What a great post. It is so good to hear from people like yourself who have had such a fantastic outcome. Don't feel guilty, you have been through the treatment and won the T shirt. It is so good to hear that you are back on track and enjoying your life to the full again. You deserve it as does everyone who goes through this tough treatment.

    Wishing you ongoing good health and a fantastic life.

    Lyn

    Sophie66

  • Hi Mike 

    1. i really like your post . It makes me feel better and hopefully I can get back to normal in the near future . I am 5 weeks post radio therapy and had 2 ops after was diagnosed in April with  tongue cancer . Starting to eat but have a very dry mouth and my taste is not good . So I am just taking day by day and hopefully it will come back slowly. 
  • have a very dry mouth and my taste is not good .

    Both will improve, honest. 
    Chewing sugar free gum and Auricular acupuncture were my salvation. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Thank you I will give it a go x

  • Thanks for this post, I'm off tomorrow for my first consult post initial diagnosis, head full of questions, mind full of doubts and issues. The tunnel looks long from here, but I'm sure there is a light at the end and reading this just confirms.

  • head full of questions,

    Write them down. Do two copies and give one to your consultant. Tick them off as you go through. Make sure you understand. Don’t worry you’re not wasting anybody’s time. Take an another person to be an extra pair of ears and a head to remember what you miss. Make sure you have your CNS contact details. 
    Good luck and let us know how it goes. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Mike I really identify with this!  I'm nearly one year out of treatment and back to my old self apart from dry mouth, the pesky swallowing exercises and Duraphat toothpaste.  I have to touch wood when I tell people that I'm fine. I'm so pleased you're OK. Your post will give strength to people going through diagnosis and treatment. Stay well! 

    Love,  Catriona

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Dec 2023 one year all clear. See my profile for longer story