New here and REALLY struggling

Hi RainbowHeart. Welcome to the community. Does you husband have a feeding tube fitted? If he had it’s time to be using it. It takes away the effort of keeping the calories up and of course stops you trying to make soft food for him to try. 
It’s enough of a struggle if you are fit and well so it must be doubly hard for you. 
Do approach your husbands team to see if they can liaise with your GP to organise some practical help. 
Macmillan should be able to suggest something too. Give the helpline at the bottom of this post a call. 
You don’t have to do this alone. 
Do you have family who might step in? 
The good news is that your husband’s treatment hasn’t long to go and a month or so after treatment end he should be able to look after himself to give you a chance to get fixed. 
Do stick around. More of our members will be along with advice and help. 

Hi, thank you for taking the trouble to reply.

My husband did have a feeding tube fitted but, unfortunately, it became infected and made him quite unwell, then halfway through the antibiotics it came out completely. Although we went to A&E with the spare tube as instructed, it was too busy and they weren't able to refit it in time before the hole in his stomach closed up.

His medical team have now decided not to fit another through the stomach. They will consider a nasal gastro tube if it becomes necessary, but are encouraging him to try and take enough nutrition in himself as he's been doing so well up until now. He'd actually PUT ON weight at his review yesterday! Probably due to all my nagging, which is new for me - I've never nagged him in 34 years and I hate it!

We do have two adult children, both with autism, one with severe ulcerative colitis and one with severe clinical depression. Neither drives and they live almost 2 hrs away by train, and though they have both made the effort to visit recently they aren't in a position to just pop round to help.

I have had a chat this morning with a lovely lady on the Macmillan helpline but I really struggle with speaking on the telephone, so she suggested this forum!

His medical team have now decided not to fit another through the stomach. They will consider a nasal gastro tube if it becomes necessary, but are encouraging him to try and take enough nutrition in himself as he's been doing so well up until now.

I Had a nasogastric tube placed at the end of week three when I suddenly became unable to eat. It saved my life.

Does your husband's team know how much you are struggling?

RainbowHeart said:

And how do you cope with the shock and the sadness of not one, but two serious diagnoses in swift succession?

Throat cancer is eminently curable...not just treatable. Similarly heart surgery is very successful so holding onto that is how you cope.

I speak as somebody in recovery whose husband had a coronary recently.

A day at a time 

Oh and don't worry about nagging him. You are helping save his life. My husband had to bully and cajole me when I felt like giving up. There were times I brushed him aside but I'm grateful he perservered

Yes, his team know he's struggling and have offered help - it's him who's dead against having another feeding tube - he's determined to try and get as far as possible without one.

In reality, I think it's me who's struggling more. I have so many mental health issues and he's the one who normally keeps me on an even keel. He can cope with his own issues, but not mine as well.

I've spoken to the GP but there's a 4-6 month minimum wait for any kind of mental health support.

As for the nagging - it's not that I'm worried about doing it, I absolutely HATE doing it! I know it's helping him, but it goes against everything our relationship has been built on for 34 years and feels totally alien and horrible!

I do appreciate your comments - thank you so much!

Hi Rainbow  heart. Sorry to hear  are both having a difficult time ,the ng feeding tube is a lifesaver I had mine fitted week 4 of treatment it really was as I said a lifesaver. It left me free to maintain my hydration  medication and nutrition. Once treatment finished the first few weeks are hard but as Dani says around a month he should be in the mend and able to help. I will pop a link in  for nutrition that may help keep his calories up.If he’s still managing ti swallow he’s doing well. I had chemotherapy but onkyn2 of a planned 3 chemo is a too upso don’t stress if it’s suggested he doesn’t have the 3 rd chemo it’s not unusual.

Rememebr to look after yourself as well .There are good tips in link but adding cream to soups soft cheeses into eggs all adds extra calories as well 

Hazel xx

I’m 4.5 years post radiotherapy 

https://www.yumpu.com/en/document/view/66263025/cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022

Oh bless. I wish I could offer more. 
I know you said you weren’t very good on the phone but maybe give it one more try. 
The Swallows head and neck cancer charity has a support line that is manned 24/7 by a human being. They offer really strong carer support. 
They are https://theswallows.org.uk/

There us also here on Macmillan a carers group  

community.macmillan.org.uk/.../carers-only-forum

Thank you Hazel, I will take a good look at those tips!

He's just finished week 4 and claims to be in little to no pain - the swallowing problem is a gut reaction to the altered taste and change in response to textures of food - it's all tasting chemical and metallic and making him gag.

He was a fussy eater before, but now he's ten times worse! Lol. I have tried all sorts to boost his calories and am occasionally hitting on something he can manage a few spoonfuls of.

Hi. Macmillan offer a phone counselling service - I had 6 sessions & found it very helpful. 

Thank you, Dani, you've already helped more than you know. X