Continual difficulty swallowing post treatment

Hi Al

My case and treatment is similar to your husband’s although more recent. I finished my chemo-radio in March. I still cannot swallow anything but liquids and am mostly being fed via my rig tube. I was told that it could take a year before I might  be able to have near normal swallow. I’m doing my swallow exercises and hoping.

As an aside, I think the cancer journey is harder for the spouse than the patient

Warm wishes to you both 

Dear Michael, thank you for your speedy reply and generous acknowledgment of how difficult the whole thing is for partners. I’m sure it’s not, but saying that is very kind. 

My husband hasn’t been offered either RIG feeding or swallowing exercises. You’ve given us some additional things to ask the consultant oncologist when we see him tomorrow.

Thank you again and very best wishes to you both. I hope your post treatment journey goes smoothly.

Al

Hi,

i had the same chemo radiotherapy treatment early 2018. No surgery. Finished April 18.

I had a feed tube until June 18. Couldn’t swallow a thing.

after that came out first 9 months were pretty tough going - took ages to eat a meal & regularly got food stuck.

Coke helped a lot to wash food down. Go Coke Zero though. No sugar & calories & works just as well as normal coke.

This last 3-4 months has been much better though. No idea why, it’s just improved greatly. Swallowings not normal - never will be - but it’s ok & I can eat most things reasonably quickly & easily now.

ive never had dilation & im back to my normal fighting weight now. If I’d been offered this 12 months ago I’d have bitten your hand off (no pun intended)

everyones gonna be different, but really all you can do is give it time & hope it improves. Fingers crossed it will.

Good luck. Gus

Thank you Gus, that is very encouraging. I’m really pleased you are doing well. 

Best wishes 

My dads currently in the same boat, finished his treatment. Struggling to swallow and lost lots of weight, he is under a dietician, given shakes etc but they are not working, he is requesting to have his feeding tube back in as is so tired, weak and obviously the weight loss, they have agreed for him to have this back in, he had it before and it’s the only thing that built him up a bit, the colour came back to his face and he had much more energy, 

iv just posted myself about the weight loss, 

has your husband been given any supplements to help build him up? It may be worth asking to try them, and they maybe push for a feeding tube if he is still struggling, you think when they get the all clear, everything would be ok again, but it’s like another journey starting 

Thank you for sharing your experience. There are so many people posting on here about their parents - I imagine it’s really hard to see your dad suffering. Our daughter is home this weekend, and it’s just lovely to have her here, but I’m sure she’s sad and worried about her dad. He has got Fortisip - up to 6 a day which is 1800 calories and I think  about the only nourishment he’s getting, so thank goodness for those ( on prescription). I’ve mentioned a feeding tube a few times but my husband obviously isn’t keen. There is the possibility of a stent. Has this been suggested with your dad I wonder? 

You are so right about the post treatment phase being another whole journey. Thank you for that. It’s oddly comforting.

My best wishes to you and your dad that the journey is smooth,

My Dad finished chemoradiotherapy in January, he had a RIG but unfortunately it came out while in hospital and wasn’t put back.  He was given a stent which has been helpful and meant he could eat puréed foods and he is continuing to have yogurts on prescription to increase calorie intake.  His swallow isn’t good so was referred to the Speech and language therapy team (SALT), they have been brilliant so I recommend you ask for an assessment from them if you haven’t had this already.  It’s been a struggle to get information to know what’s best at each stage and to know what to ask for.  All the best to you and your husband.

Charlotte

Thank you for getting in touch Charlotte. I will ask about SALT. He might be getting a stent too. 

My very best wishes to you and your family. It’s a horrible journey to be on but love and support from family really helps. 

Best wishes