#tonsil cancer

Hi Hammond sorry to hear your husbands suffering as he is doing. I’m 8 years postc chemo and 6 weeks radiotherapy. Has he seen a consultant or  dietician recently. . Seems to me that 1000 cal through is feeding peg isn’t enough I was advised 2 1/2 thousand calories each and every day during recovery I was only 5 foot and nine stone. The dietician also included 85 g of protein for me to make a good recovery I think it may be time for you to contact his Cancer nurse. Try and arrange an appointment as 1000 cal to me seems inadequate. They may also need an anti sickness pill similar to what we were given during chemo. I was on ondanestrin  during chemo ti stop the sickness. Is he drinking sufficient liquid as well even though you said he’s having issues going to the low? It is a fine balancing act again. I was advised 2 to 3 L of water every day. It’s possible that they may have to have miss him if he is struggling as he seems to be which is not uncommon in hnc  patients. 
A few links below might help the rescue one had patients advise in if. . That may help. 

it really is the worst time I often like in recovery to be worse than treatments we seem to get cast out into the wilderness with out seeing anyone in treatments as you know we see  Medical stuff daily and then one treatment is finished. That’s it for a good few weeks

It doesn’t last forever I’m living a fab life. 

hugs 

Hazel. 

Hi Hammond, I agree with Hazel 1000 calories through his PEG doesn't seem to be enough, I had 1500 calories overnight feeds, and 5/200 calories drinks each day, making 2500 per day. He needs nutrition to help with his healing. Try and speak to a member of his team when you can. Hopefully with more nutrition he will start to feel better. Let us know how you get on.

Ray.

Yes ...I ended up in the cancer ward for 2 weeks...tough times, PEG reliant, in a lot of pain, violently sick, developed a hernia, thrush, no appetite, no taste, totally fed up with my lot...but my wife and my oncology teams got me through...got home and gradually things improved, slowly at first then recovery picked up pace....My Chemoradio treatment finished in June 2023...Nov 2023 I was in Tenerife enjoying the sun and eating well...Sunshine after the rain.

Thank you so much, your recovery sounds pretty much the same as my husband.

i think he’s worried that he will be admitted as he spent 4 days during the treatment itself.

So happy to hear you went on holiday in November. 
you feel like he’s just not getting better but your story feels comforting even though incredibly tough for you.

Thank you 

Hello there,so sorry to hear about your husbands struggles. My husband had cancer at the base at tongue. He had a PEG fitted prior start of treatment.And he was reliant on it pretty soon. We got told that he should have at least six to seven bottles of Ensures during the day,and then have the night feed to top up. The night feed made him sick,so he gave up on that one altogether. Made it harder to get the nutritions he needed,especially with him so tired all the time. He started his journey with 120kgs,by time he finished,he was down to 78kgs, and a few more kgs over the next few weeks. At some point we tried the HAUL bottles . He was able to tolerate them,so we stuck with them,eventual his weight started to stay steady and eventual he was allowed to get rid off the PEG. I am not gonna lie,at times it was heartbreaking to see him going through all this. His mood was so low and finding himself in a dark place.However, it didn't help that the meds were causing him depressions, once we changed those,his mood gone better. I guess staying positive and persevering got us through and now 20mths later,he is doing well,considering. Stay strong you will get there. Best wishes Mel x

It's incredibly tough for all patients, family and carers...we patients can be very difficult... but the treatment and recovery will not last forever... good luck.

Thank you Mel for sharing your journey and experience. I sent your reply to my husband so he can hear that it’s not just him feeling like this post treatment. 
Your insights are really inspiring and helpful too.

Take care 

You very much welcome. Tell him  and I quote 'take the little pluses, they add up. It's still early days for your hubby,'s journey and it probably will be a "one step forward-two step backwards" at times,but he will get there. Stay with these amazing people for help and advise. I felt like you when I sent my first post. Mel x

In my case, if they would not admit me to the ward, I think I would have been VERY poorly. Just before being admitted (stayed there for 2.5 weeks) I lost all the willingness to do anything, and it was all due to malnutrition.

Dietician saw me and said I need to stay in hospital as she is very worried. And I am very grateful she did, as they kept me fed and safe and I could focus on getting better.

No one wants to stay in hospital, I know that, but in my case I think it saved my life.

Fingers crossed for your hubby. I hope someone will look at his nutrition plan as most of the above comments are tight, 1000 kcal for a man is nothing. 

All the best. 

Izzy.