Swallowing

Good evening Ouch, as a fellow wife i feel for you, my husband got treated for oesophagus cancer in 24,he is now 16mths post treatment. As part of his treatment plan, it got suggested that he will have a PEG fitted,no questions asked. About 10 days prior start of treatment he had it fitted as a day procedure. As you will probably find,that the majority of people will say the same,that the PEG is/was a life saver. Three weeks or so into treatment it became impossible for my husband to swallow any solids,even liquids. Everything got fed through the PEG,even meds. But this is only my hubbies story. He was reliant on his till about 5mths afterwards. Stay strong and positive, it will be a bumpy ride,but it's doable. Hugs, fellow wife  Mel.

Ouch said:

Does everyone end up using the PEG or are them some lucky people that can continue to swallow throughout the radiation treatment and beyond?

Yes. There are members here who managed without. 
I had an NG at the end of week three and didn’t swallow anything for 8 weeks. 
For me it was a life saver. Feeding was excruciating and took forever. I got frightened of it in the end so gave up. Best thing I did. 

I used my peg after week 3 - after radiochemo to treat a cancer at the back of my tongue. 
it was the only way I could eat, drink or take meds. 
Everyone is different and I do know of people who manage without the peg. 
All the very best with your journey ! 

Some patients are fortunate and don't require to use the PEG tube....many do find that the feeding tube is a lifesaver. l had a PEG tube for around 6 months...used it for around 4 months... it's a bit of a nuisance but essential for our recovery, taste and appetite are reported missing for a few months and the PEG tube comes up trumps.

Hi Dani

Were you able to swallow liquids or was it just food you couldn’t tolerate? 
I’m at the end of week two now so getting apprehensive about the onset of side effects.

At the moment it’s just a bit of numbness of oral mucosa and I’m finding food tastes bitter.

Ally

I couldn’t eat or drink. But everyone is different x

Hi Ally. The physical act of squeezing my throat muscles was too painful so everything went down the tube. They way I looked at it I could have had no end of topical analgesia to enable me to swallow but honestly didn't see the point so I didn't fight. I spent the day walking the dog slowly round our fields, catching up on movies I had always meant to see, reading and in my husband's company. I could be "normal"  I I had cancer contacts who fought every inch of the way to eat. I couldn't be bothered. I had nothing to prove.

So, my advice has always been....if it hurts, don't do it

I think what worries me is losing the ability to swallow and then trying to regain the action during recovery.  I’ve opted for NG tube should the time arise.

I’ve been practicing effortful swallow since before treatment started and trying to do these exercises along with jaw exercises religiously multiple times every day. 

Feel a bit flat today as I’m so scared of what lies ahead

Ally3 said:

I think what worries me is losing the ability to swallow and then trying to regain the action during recovery

Just do your exercises. It's what I did. I'm pretty convinced that a compromised swallow is more to do with the amount of radiation the muscles get than how long they weren't used for

Fibrosis is a lifelong risk so you should do your exercises forever. I still do mine seven years down the line

Ally3 said:

I’ve been practicing effortful swallow since before treatment started and trying to do these exercises along with jaw exercises religiously multiple times every day. 

Don't over do it. A couple of times a day is enough

Ally3 said:

Feel a bit flat today as I’m so scared of what lies ahead

It's daunting but honestly doable a day at a time. Don't be brave, tell your RT team how you feel every day. They will be quick to arrange help if you need it.

The treatment doesn't last forever and the recovery doesn't either. Chin up.