The Aftermath

Hi

T2N1M0 Tonsil cancer HPV16 plus chemoradio finished June 2023

Treatment is very challenging and recovery takes time, my taste took about 6 months to improve, others were quicker to get their taste back, my taste is at about 90% now, out for an Indian meal today, Chicken Tikka and Chicken Bhuna, spicy soup for starters, a year ago this would not have been possible....I use fluoride 5000ppm toothpaste and gum tray baths daily.

Lymphedema massage under my chin daily 

I lost 16kg during treatment...now have a healthy BMI.

Recovery takes time, is challenging... improvement happens slowly then gathers pace 

Take care 

Peter 

Oh I'm with you on the taste thing. I just finished 6 weeks radiotherapy and my taste is SHOT. I can't eat, largely for that reason, although because of the surgery chewing and eating is a bit technically difficult. But the taste, everything is vile. I'm on an NG tube cos I just can't eat enough. Anything with fat in tastes absolutely rancid, which was quite sad as everyone ate all that lovely cheese and butter over Christmas. I can just about manage flavoured teas and I did juice up a couple of carrots with an apple and two sticks of celery today. I could tolerate it, but could feel it catching on the back of my throat. Taste and texture is all wrong. I fantasise about things I want to eat constantly, but know that there is nothing that could match. I really want deep fried tofu in black bean sauce, but that won't be happening for a while I think. I spoke to a man in the Acute Oncology Service the other day said it took him 2 years, I could have wept, I hope we both get their quicker than that and have Peter's experience of a more like 6 months! 

Best Rachael

Thanks for the reply Peter. I crave spicy so your description of Chickens Tikka and Bhuna gives me hope!  I'm approaching a year since treatment- so I'll just keep plugging along...at least I'm alive, right?!! I use the same toothpaste and daily fluoride trays. I so appreciate your input!

Hi Rachael- I'm almost a year out and it's taken a lot of work with PT to improve swallowing.  Keep at it and things will improve!  It's funny (like odd/peculiar not haha) how different tastes are messed up for different people.  For me, cheese sauce, butter on a baked potato, cream in my coffee, and ice cream are calorie go-to's and taste great. Meat is pretty much sawdust, and sugar is horrible. Salty is good, hot chili pepper, powder, or cayenne- no way.  Garlic is fine.  Steamed veggies and salads are great. Just keep trying different things; it took a good 5 months to transition to oral food intake and get my GTube removed.  

Take care and persevere- Positivity to you!

Rachael S said:

I fantasise about things I want to eat constantly, but know that there is nothing that could match.

I know the feeling. I managed a very rare steak at 12 weeks. The first mouthful.....zing! Hallelujah! Then the taste went completely. That happened a lot. I wasn't happy with my food for a year. 

Rachael S said:

I spoke to a man in the Acute Oncology Service the other day said it took him 2 years, I could have wept,

Funny that. I thought much about survival after treatment and marked off the milestones. By the time you get to a year recurrence free your chances are good, infinitely better at two. Then your reviews get spaced out more and I came to the conclusion that I would be 73 by the time I got to "cured."  I was wishing my life away with those milestones so I put that away and got on with living and not worrying about food and stuff and suddenly I am knocking on six years and I'm 74. How did that happen ?!!!!!

Hi and welcome from me.  I describe the treatment as brutal and the recovery torture.  I think we all know about the issues of treatment, but it is the frustrations of the recovery - a marathon and not a sprint, two steps forward and one back, false dawns only to be dashed the following week, the social challenge of public eating etc.  It is a mental challenge to keep on top of things and recognise there is light at the end of the tunnel.  What you describe I think many of us have had part, all or more of.  It is par for the course and often a life long "new me".

I am now a year out of starting my last round of treatment.  This time CRT rather than surgery.  My taste went overnight around week 4 of treatment and returned overnight around week 12 of recovery.  The returned taste is very different to how I remember things tasting.  Although I can recognise most of the foods I eat the taste is very muted in strength compared to what I remember.  I still can't eat a steak or have spicy foods.  Maybe that will return.  If going out I have to select the restaurant for the menu I can eat and will normally try and talk to the chef to explain my specific needs - I find them very receptive to this approach and great at suggesting options that may suit me.

Whatever challenges the cancer and its treatment have thrown at me I am determined to live the best life possible - and spend all the kids inheritance doing so

My taste buds recovered 3 weeks post treatment but my appetite a year on is still all over the place. I can eat most things but need a lot more spice. I’m also looking at recipes which I avoided before. I prefer vegetarian meals now. My oncologist said many of his patients become vegetarian 

i have Lymphodema too but but its subsided a lot. I don’t wear my compression anymore and a few minutes of massage does the trick. Some days there’s nothing 

I never lost weight in fact I’m in a diet to lose a few pounds. 

Hello,My Mouth and tongue felt like I ate 10 Pineapples,It took  about 10 months to heal,I still feel it a little on the very back of my tongue.For taste I am not sure how that is going,I don’t do spicy foods or any spices that are even alittle hot,pepperoni is hot to me now.I can load up a lot of minced garlic on my Steak so maybe my taste buds are still off

I am 13 months post treatment and I still have fatigue,I only have dry mouth at nite,I must sleep with my mouth openIn the last month I have plenty of Saliva to swallow,

I still have fatigue which started about 7 months post treatment and then like just unhappy.Just by the end of day cooking dinner was tuff to do,always had to have a frozen pizza on hand.Then just last week week boom unhappy gone, there’s still fatigue but I am 60 and I work 5-7 days a week

Everyone here says Keep going It gets better just sometimes takes awhile.

Thank you for sharing Second Chance...I am almost a year post treatment and our progress is very similar.  I, too, have enough saliva these days to help with swallowing, although I always have water just in case!  Pizza still too spicy for me but I keep trying  In the last few months fatigue has subsided a bit- enough to host two extended family Christmas gatherings!  Of course my husband was key in being able to pull them off.  Even though they were mentally and physically demanding (around 35-40 people each), the joy of "being among the living" was immense; I felt like my old self.  There are many days my husband and I wonder (cuz, ya know, he was by my side through it all and recovering too ) if we're tired because of cancer recovery or tired because we're almost 70!!! I'm extremely happy to hear your unhappy is gone.  I think the mental/emotional game is probably the hardest part about healing.   You're amazing working 5-7 days a week!