Survivor guilt? Worry about tempting fate?

  • 12 replies
  • 36 subscribers

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.

  • Thanks Mike for the post, it does resonate with me. I also had a strong recovery and pretty much back to fast lane 4 months after the treatment, and probably even healthier given the diet and the lower booze etc. Sometimes I feel uncomfortable about speaking out as I know its a different journey for everyone but I also want to tell people who are like the miserable me after the diagnosis that in 6 months you can fully get your life back. You go down really low but the bounce from there is equally powerful. Stay strong everyone. 

  • Hi, I had a good outcome from treatment this summer too. I'm back to work although I have tinnitus quite bad and still have swallowing and taste issues. I had an MRI and all clear last month. What a high!  My main concern now is, I was told for my type of cancer there is a 40% success rate. This translates to 40% of surviving 5 years remission, so 60% of death within 5 years. I need to have a detailed chat with my consultant. I'm back on the emotional rollercoaster..feeling a bit $h1t