Radiotherapy and chemo has anyone not had a peg tube?

Hi Janene123 my advice would always be to have a PEG or a RIG  if offered one, it is there for if it is needed, I was relient on mine for about 10 weeks, when I couldn't eat, many others on here have relied on them too. However on the other hand others have not had them, and been ok, some people have had nasel tubes fitted. I think it's better to have a tube and not need it, then to not have one and need it. If you need to ask any questions or have a worry about anything, just ask on here, someone will always answer if they can help. And always keep his team informed of any worries. All the best to you both.

Regards Ray.

Hi Janene. Welcome to the community. So sorry you both find yourselves here.

I'm with Ray. By the last two weeks the chances of your husband being able to swallow anything will be slim.( My one caveat is that there are a few people here who have managed without) I had a nasogastric tube place at the end of week three and used it for nine weeks. 

If he is determined to try then protein shakes are the way to go and there are lots of recipes on the Net. His dieticians will supply him with high calorie Total Food replacement drinks and if he can get a Litre and a half down he should maintain his weight. If he loses too much they might hospitalise him. I can tell you I used to try my shakes (even with tube in place and with doses of morphine and medication to numb my throat it took me an hour to get 200mls down. I gave up and had a much easier life.

To my mind there is enough pain to put up with without fighting to eat. The folk I've talked to who resisted tube feeding told me it was a matter of control. Something that they did have control over. I can understand that.  I wrote a blog and a diary.

My advice would be to back him completely in his choice ONLY if his team can guarantee a reactive NG tube otherwise I'd badger him. PEG placement is a walk in the park compared to what's too come.

When does his treatment start?

Good luck and best wishes

Hi Janene123. A great answer there from Dani, I would add. Can you get him to view the feeding tube as another of part of the treatment? He will need anything that can make things easier for him, and it take the worry of eating away. They are very easy to manage and use.

Regards Ray.

Hi Jannine. Welcome to the club I concur with the others . I too had n g tube fitted at week 3 snd removed 3 eeeks after treatment. I treated it as my lifesaver as unless yiu can’t swallow you’ve no idea how frightening it is one  mornjng to go from eating fairly soft things like eggs ti nothing.  It allowed me to concentrate on getting g through my last weeks of treatment snd more importantly recovery. Recovery can be harder than the treatment. I’m certain the n g tube aided my recovery to the extent 8 weeks after we flew to Spain fir husbands 60 th birthday . But it’s your husbands decision my blogs is below with links to others. 
pop back on with any questions 

Ps the first 2 weeks are usually uncomfortable thrn week 3 everything ramps up. 
Hazel I also lost over a stone that included being n g fed I’m not overweight either v

Hi Janene 

I had similar diagnosis. I'd strongly recommend a PEG. I was set against it to start, but completely relied on it. I managed to eat all the way through treatment but literally stopped being able to swallow on day 1 post treatment. Some people have managed without, but as the others have said not being able to get the nutrition in is a problem to avoid if at all possible. It wasn't just the food either. Some of the pain relief I had was soluble, and once on opiods laxatives are essential - I just got over faced drinking them all at times, so popped them through the PEG to avoid feeling sick. 

Take care both, Gill 

Hi Janene,

It sounds like your hubby had the same diagnosis as me. I didn’t refuse surgery but was told it wasn’t necessary when I went in for the tonsillectomy and ended up with just a biopsy instead. I am now at the end of week 4 post treatment. I was not offered a PEG or nasal feeding tube and I have managed to eat throughout. After week 4 I lost my taste of everything and ate soups, eggs, yoghurts with lashings of cream and soft fruits and in week 5 was prescribed fortisips. I had these to keep up my calorie intake but rather loathe them. My husband was gently encouraging about everything I ate and basically prepared everything. I have probably lost half a stone or so. I am now able to eat toast and even had a bowl of chips to celebrate my 32nd wedding anniversary this week. I was on morphine for a couple of weeks but have always religiously taken paracetamol, especially now when I am eating harder foods. My biggest problem is taste, I can’t taste sweet things yet, but my taste for other foods is slowly returning. I think the answer is to encourage your husband to be open minded, if a tube for eating is necessary at some point, have it. I think my journey has not been as tough as others as I did not have a tonsillectomy before hand. I take each day as it comes, so thankful for any improvements that happen and have so relied on the wonderful advice this forum offers. 
Good luck xx

Thankyou everyone for you replies. I wish I could change his mind about the tube but he is dead set against it. I have to respect that. Though it worries it for what’s ahead. He starts his treatment just after Xmas. I really don’t know why he is so dead set sgainst one he won’t say. I’m just nervous he will run himself into the ground trying to prove he doesn’t need one. He’s also one of these that refuses pain killers. Won’t even take paracetamol. It’s going to be a eye opener for him that’s for sure! Persuading him some things are for the best. Thanks again everyone. 

Hi Jannine. If he’s refuses painkillers and a feedingbtube i fear  a bumpy road for him. As for the  chemo there is a cocktail,if tablets that should be takento help combat  the  side effects steroids anti sickness pills As for pain relief  most of us end up on opiates at some point  plus co codomol. I thu j he will need a serious conversation with his oncologist at some point. Am nit sure what he’s expecting but in my experience I was the fittest I had ever been prior to treatment and my oncologist apologised before it started saying he would take my body to the lowest point it had ever been but he did promise me cure. 

Good luck Hazel 

Get him to read Hazels blog. There are some cracking pictures of what treatment can do to you. 
Like I said.  It’s about what he can control. Just warn him in advance that if he is in a lot of pain and still refuses much analgesia you are not prepared to shoulder the pain for him. I say that in a kindly way. Carers are often abandoned along the road and they often take the brunt of their partner’s ire. 

Thank you Dani xxyes it’s pretty brutal treatment but the alternative isn’t worth thinking about. Dani us right although I had feeding tube and was in high strength pain killers I didn’t always treat my hubby as I should have  He also did a piece in my blog on his feelings.Iften our other halves suffer as much as us the patients 

thus us the link Dani is referring to 

www.radioactiveraz.Wordpress.com

if you don’t want to read it all scroll down to week 6 the road to hell describes my last weeks 

Hazel