Treatment Plan Confirmed

Hi Steve. I had a stomach tube through the nose in week 4. It’s called a nasogastric tube. It doesn’t look pretty but it dies the job. I couldn’t swallow food and very little liquid by then so it saved my life. It’s not certain that you won’t be able to swallow at all. Quite a few people plough through the pain and manage it. I just couldn’t or maybe I should say wouldn’t. I wasn’t going to suffer to prove a point. 
All my food and meds went through it for a few weeks. 
I had it in for 8 weeks. 
Your taste my well go south, that’s true. Mine did. But it does improve pretty well. 

Steve Cat Dad said:

y. He was explicit painting the worst case scenario of side effects

They have to do that in the same way that a GA for a biopsy might kill you. Nobody gets all of them. 
I had a sore mouth and that’s about it. The RT and the morphine made me really tired. I got off pretty lightly. Most people do. 
You’ll do it. We all do. A day at a time. 

Hi, Steve hopefully you will feel a bit better, about things now you have got your treatment plan, I know I did. As for a feeding tube a RIG or a NG tube, either will do the same thing. As for your taste, it will not be effected premanently, some get it back quicker than others, but you will get it back. All the best with your treatment.

Regards Ray.

Steve at least you have a plan now and can focus on that. 

So far I have been lucky and avoided the need for tube feeding as I've "only" had surgery that avoided that need.  There are a very few people that manage to swallow right through RT treatment, but it is unusual.  Like Dani has said it looks like you will start off without an NG tube, but have one fitted if the need arises.

As to taste I will paraphrase what my surgeon said to me...  RT damages taste, but it generally returns.  A surgically cut taste nerve never rebuilds itself.  You should get your taste back to a significant degree.  Your likes may change, I know mine did after surgery, but I can live with that.

Morning 

I also had base of tongue cancer diagnosed earlier this year. I finished my treatment in early July. I didn’t have either a stomach tube or nasal tube fitted and managed to swallow throughout even if it was difficult at times. Make sure you get enough pain relief and tell them if you need more! I have lost weight but not a massive amount The positive about this is my recovery eating wise has been really good having lost none of my ability to swallow. I’m still not able to taste much but I can eat most things. What I would say to you is this. Try and keep positive. Take each day as it comes. Don’t be too hard on yourself if you have a bad day.  Listen to your body. Sleep if you need to. Humans are amazing. We can find strength we never knew we had to get through this. Never give up because you will reach the other side of treatment and beyond. Keep going 

Thanks for these positive words.

Hi Steve. As Dani says nit all if us get all the side effects. I had my ng tube fitted week 3 usually everything creeps uo then bang usually aroundcweekn3. The ng tube is a fairly slick piece of work a few moments discomfort.mine was in for 6 weeks with it changed after 3 weeks for a new one. I was lucky in a way I never lost taste but niw left with accentuated taste in some things notably spicy. Take it one day at a time don’t iverthunkmit. I was 63 days from being put on pathway  treatment starting. The planning can’t be rushed yiure in the system so go with the flow.
Hazel x 

Megg said:

The positive about this is my recovery eating wise has been really good having lost none of my ability to swallow.

Steve Cat Dad 

Some trusts are really on the ball about this. The theory being that if you don’t swallow you risk losing your ability. 
We all get exercises to do. They help prevent fibrosis. I did mine and still do. I was told to do them for life. 
I can swallow perfectly so if you do need an NG tube don’t fret about it. 

Hi. I had a PEG feeding tube fitted prior to treatment starting. I used it from week 4 but continued to drink water & did not lose my ability to swallow. Just ask if you’d like more details.

Hi Steve, I'm now two and a half weeks post the treatment you describe for cancer of the tonsil. I had RT to both sides of the neck but have been able to swallow throughout. It's been mainly sloppy stuff like pasta and soup but eating if you can is preferable to a tube. The problem is as you will see form the comments here is everyone reacts differently to the treatment so it's hard for you (and the doctors) to know which side effects you will have and to what degree. 

If you can keep swallowing food with pain killers then do so, I started on paracetamol and then co-codamol and now I'm off pain killers. I lost my sense of taste at week two, my taste buds are starting to wake up now but the lack of saliva still makes eating a bit of a chore. You have to just keep shovelling it in to keep your calories up. You will no doubt loose some weight, but that's normal.  

I know it all seems insurmountable at the start, but you get through it one day at a time. Just try to do what your support team recommend and deal with each side effect if and when it arrives. The support group here will provide help and guidance, but expect there to be some differing opinions as we've all had different journeys. 

A big thanks from me to the team at The Royal Marsden Sutton and to my wife, they have been amazing throughout.

Wishing you the very best.

Lee