Team categorically refuse to give my husband a PEG or NG tube during treatment

And we have a breakthrough. After a distraught call to Ade's cancer nurse from myself to explain that he once had quinsy on both tonsils in the past and his throat closed and he couldn't take oral medication at all and that's his biggest fear. She called him back saying she didn't know he had quinsy and that she has booked him in for a PEG fitting on 15th December ( Day 1 of week 3 ) This is because his bloods have to be right because he had chemo on Monday this week so they can't do it any sooner. If bloods aren't right that we'll they can try for the 22nd ( Day 1 Week 4) as those are the only 2 weeks he has a window before the next chemo. I have everything crossed that he can have it on 15th. The weight off our minds is massive. We can now just calm down a bit and continue on the train and take each day as it comes. A massive relief. 

What a result! 
PEGs take a few days to get used to but I’m sure you’ll be there to help. 
isn’t it funny that this small oncology unit can suddenly find the resources. 

Just to say, when I had my 30 sessions of radio, with simultaneous chemo (Cisplatin) in Cardiff in 2015, I actually had to ask to be allowed to attempt the 30 sessions without a PEG or an NG. The medical team accepted that I could try, as indeed the overall outcomes in terms of collateral damage tend to be better if you can keep swallowing throughout and immediately after your treatment. My inspiration was Michael Douglas, who managed to go through the whole treatment without a PEG.

However, I got to session 27 and just couldn't go on from there. So an NG was fitted for the last few sessions and indeed the following few weeks. This worked fine. I was fixed up to a pump at night when I slept. There was no need for admission to hospital at all for this, except when I vomited the NG out a few times and I had to pop back in for it to be reinserted. They even showed me how to do it myself in case I vomited again, but I was too cack-handed and never managed it, having to pop into the hospital again. (I was vomiting because of chemo, not the NG). 

In conclusion, it seems to me that the best option is to try to get through the 30 sessions without a tube of any kind. It isn't fun, no, but you very probably are doing yourself a favour longer term in terms of preserving your swallow function and your salivary glands etc. And even if you don't quite make it through till the end, it's not a failure. An NG is very easy to fit - no surgery, they just slide it through your nose and down your gullet. A small word of warning: it takes about 2 weeks from the end of radio for the healing in the throat to become noticeable. So you will likely need the NG for a several weeks after treatment ends.

Of course, it all varies greatly, and no doubt treatment has improved in the ten years since I was treated, but I can't see why your team wouldn't allow you to take a similar approach to mine.

All best wishes!!!

Cymru123 said:

In conclusion, it seems to me that the best option is to try to get through the 30 sessions without a tube of any kind.

It’s what SLT say but I’m not convinced. There doesn’t seem to be a physical reason, after all swallow function and strength can be maintained even if tube fed for a long time. Chris Curtis from The Swallows was PEG fed for years before he managed to throw off the shackles and he eats perfectly well now.  Maybe it’s a prod to get through mentally. Some people need the challenge yet others are quite willing to be subsumed into the treatment and let everything wash over them, a passive victim. (Me!)

For me I didn’t want the fight. I didn’t think fighting would alter the outcome and I was right….. but that’s just me. 

Absolutely! And Dani, I want to say thank you again. You are always here when people need you. And I am very needy lately! 

Fry7b5361 said:

Absolutely! And Dani, I want to say thank you again. You are always here when people need you. And I am very needy lately! 

I know how you feel. I wish I could give you a hug. I think it would be good for both of us. ️️

Hi Dani

Had the first radiotherapy review today and when she heard that Ade was having a PEG fitted it was sort of frowned upon. Why do you think healthcare teams have such a negative view of providing feeding tubes to patients? 

Hi. I’m not sure but there are quite a few trusts that refuse in the grounds that if you stop swallowing you’ll lose the ability to. I’m sorry but that’s rubbish. I swallowed nothing for 8 weeks and by six months I was eating steak. 
Another explanation is that you’ve gone over their headS? 
By the way. I’m like you. I needed to know everything about my treatment. I asked where I thought I might get a sensible answer and did a lot of my own research. Google is a good source but only if you know where and how to look. 

Oh god yeah ! We are so alike and Ade is too. He literally says to them Donna probably knows more about this than you, the amount of research she does . But it's true, as soon as I found out I was like I want to know the worst. And luckily Ade is the same. He said to her I'm a prepare for the worst hope for the best sort of person, so tell me everything! She said that's good to know. And for the first time I felt involved. And I told her how much I appreciated her involving me. And she said because you will be the one holding him up, encouraging him. She said we've found that men with wives tend to do much better than men who don't. Mind you it's only week 1 but he's already probably sick of me. I'm saying you need to do your exercises, put on your cream, chew your gum, have you started using the toothpaste yet ? But I want the best outcomes for him and I'll do everything in my power to ensure that happens. And to be fair he's said I'm doing it, I'm going to do everything I am told because you've explained to me why it's all so important and I will try my absolute best to keep doing it. We always say it's OUR journey and WE have an appointment and WE need to be etc. Together we are a team. And the thing I never expected to happen is that at this moment I feel like I love him more than ever because of his bravery and determination. 

Donna that is a brilliant attitude. Ade is very lucky to have you. Just one point….. and it’s not a criticism, just an observation from personal experience. There will likely be times Ade could be pretty obnoxious and he will need space. Not for long but if you recognise that and step back you’ll both do much better. Time for you to disappear and have coffee with a friend and not talk About cancer