5 months post treatment still struggling with eating

Hi mchitwood. Welcome to the Community and thank you for the update.

You're right....recovery is certainly up and down. I had a fairly uneventful recovery and could eat pretty well by 12 weeks despite having a feeding tube in for 8 weeks. Quite a few folk on here were PEG dependant for longer but they got there in the end. Having proper rehab for your problems is important and at least your team is on top of that. What sort of exercises are you doing?

Hi welcome from me.Good  you’re getting help I was ng tube fed for 6 weeks. I did swallow exercises daily and still do tgrm now even 4.6 year post treatment. Certain meats can be difficult chicken breast bacon and some cuts of pork my slow cooker I gets used a lot. You’ll get there just takes time. 
Let us know hiw you get on it can help  others later on. 
Hazel x

Thanks Hazel, I have read your blog and it gives me hope that in time things will get back to a more normal.  I am happy to be getting back to feeling more like myself and hopefully the eating will continue to get better.  I am utilizing the slow cooker quite a bit. Hearing from others who have experienced the same things helps so much.  When I tell people I had tonsil cancer they say I never heard of that before so it is good to connect with others that have faced the same challenges.

Hi no problem. Yes no one knew about  my tonsil cancer either. Were you HPV positive ? I’m beginning to be quite an expert nowadays! Any help just shout  we all help each other. Glad to help show people life can still be great. 

Hazel x

Dani, thanks so much for your reply.  I just started reading your blog and it is exactly what I have been searching for.  I feel like it has been so hard to connect with anyone who truly understands just how difficult this has been.  Here I was living my life, I was rarely sick.  Then I got a slight sore throat that didn't go away after a couple of rounds of antibiotics and bam then next thing I know is I'm in the ENT office and the NP takes one look at my throat and calls in the surgeon and the journey starts, first my tonsils out, then the diagnose of tonsil cancer, chemo, cold capping so I could try and keep my hair, radiation (for someone who is claustrophobic started out as a nightmare with that mask).  Once the treatments were done I was told I will feel better in a few weeks but I felt worse and continued feeling bad for three months.  I am finally feeling more like myself and hope that I will begin to be able to eat more normally soon.  Thanks again or your note, I'm looking forward to reading more of your blog.  Best wishes, Marianne

Mine was also HPV positive fortunately.  I was driving into work the other day and there was some good music on the radio, I was doing a little car dancing and I thought to myself, I feel more like myself than I had in 8 months.  I look forward to that feeling more and more. 

mchitwood said:

Mine was also HPV positive fortunately.  I was driving into work the other day and there was some good music on the radio, I was doing a little car dancing and I thought to myself, I feel more like myself than I had in 8 months.

Hey Marianne....that really made me smile and brought a tear to my eye. I love car dancing. I remember vividly having my three year check up and driving home through the Welsh country lanes with Steely Dan at full blast. My God, I can still smell that day!

It's just time...I promise. 

This article is great. Its by psychologist Peter Harvey who worked with cancer patients.

Have a read and print a few copies out for friends and rellies

After Treatment....then what?

Hi Marianne. Well done on returning to work. You’ll get there baby steps got Dani and I there along  with many others.Once you can car dance you’re  half way there. Lol. Sadly I can’t sing but no loss as hubby says I couldn’t sing before treatment I screech! Any help just ask  

Hazel x

I can't sing now either which made me sad, I have always sung songs with my 5 year old twin granddaughters.  One was on a feeding tube the first year of her life and I would sing songs to her to distract her during feedings.  It is coming back though and hopefully we will be singing "were on our way to grammy's house" loudly in the car soon :)

That article from Peter Harvey is great, I found it really helpful.  When I started radiation I thought I was going to have a panic attack every time they put the mask on and mouth stick in.  After the first week, I knew I had to get myself in a better space so I decided I was going to rock radiation out, every time after that I had them play Stevie Nicks and I was able to just focus on the music and got through it without problems.