Hi

My Partner Frank is finishing is radio therapy treatment today. He had a sub total glossectomy (85% of tongue removed) and neck dissection in March this year and is just finishing 6 weeks of radio and chemo treatment today. He is totally dependant on his peg tube for feeding & meds. Thankfully he had no bad reactions or side effects from either the chemo or radio therapy and is talking "okay" ( i can understand him)! He hasn't lost any weight while on treatment as he had the peg tube inserted before it started and takes Ensure plus & jevity 5 times daily every 3 hours.
Frank has never complained about the operation, the treatment or the fact that he now has no tongue and can't talk the way he used to, even though he will never work as a driving teacher again because he wouldn't be understood. He has been positive and a perfect patient the whole way through. He even jokes about not being able to read the newspaper (because he can't lick his thumb to flick the pages), numerous medical staff have asked him to put a pill under his tongue and he laughs and says if you can find my tongue go ahead!!! I admire him so much for being able to have a sense of humour after all hes been through.

However he is starting to miss food, he was never a big eater but would really love to be able to eat a little of something, anything.

He had a swallow test 7 weeks ago before the RT and was told not to take anything orally while on the treatment, before that he was allowed food of a "honey consistancey", all he tried at the time (4 weeks between op and rt started) was some 7up, tea , soup mixed with Nutrils powder to thicken to the honey texture, all went down okay. His throat & mouth are burning at the moment but the reason he isn't supposed to eat is because they don't know if the food is going into the right place, they are afraid it could be going into his lungs. His next swallow test isn't due until 08July and I was just wondering if anyone else has had similar experiences, I would love for Frank to be able to eat something, he has done so well he deserves a treat, we both know he could manage to get food down and keep it down just don't want it going to wrong place.
Thanks for listening, Jen & Frank Xx

Hi there Jen
Wow! How well has Frank done throughout his treatment???!!!! He has done amazingly well. Congratulations.
I am not in a position to give you any advice but just wanted to wish you both well. I can appreciate that you would both like him to have a treat. Someone with experience will be along in no time to share with you. Bell's Paul is having to have his liquids thickened for the same reason as Frank so maybe in true Bell style, she will be able to give you some tips.
All the best
Deborah

Hi Jen

I'm sorry, but I too can't give you any advice but having read your post I just wanted to say I don't think anyone reading that could fail to admire Frank.

Well done Frank and all the best to you both in the future.

Sue

Hello ,Bell here ,just got Paul home and getting organized with all the contraptions so having a break and saw this .

First of all great news that Frank is through his treatment and doing well Jen .I am not a doctor and just my husbands carer but been through a lot of a issues .My own advice is not to try him with food at moment till next swallow test is done .You could phone your clinic and ask your liason team now if you feel he is really eager to try some soft foods .

The problem with this could be if it is not not clear that food and fluid are not going into lungs he could take a nasty chest infection which they call aspiration, this would not be good .The problem with this is : when eating and drinking your husband WILL NOT be aware some food and fluid is going into chest,sometimes there is a bit of coughing after eating but can be put down to Throat area being swollen and tender from treatment .

This is the problem we are having at moment but due to late problems from RT ,recurrent cancer and recent nerve palsy with throat and voice box.

Phone first to ask permission , but in meantime I would just wait for all clear from next swallow test.This should probably be ok but the swelling etc takes a while to settle and can upset normal swallow route into tummy.

Let us know how Frank progresses he will soon be tucking in again .

Best wishes to you both Bell .

hi frank and jen
i am glad frank has finished his treatment after all the travelling to and from the hospital it will be nice to have a break from it and not be rushing about to get there everyday,at least that's how i felt when the chemo and rads stopped.i did not need surgery for my problem but i had swallowing problems and kept choking trying to get water down so i had speech therapy to help to swallow.bell has given you some really good advise,are you intouch with a dietician?but hopefully once you get the results back from the swallow test frank will be able to manage a little of something nice.i also had a test i can't remember what it was called it may have been a barium swallow it's where they watch where the barium is going when swallowed so they can be absolutely sure it is not going into the lungs and they told me within 2 hours that everything was fine.thanks for the update.love shirl xxx

Guys, thanks so much for all your replies and the advice. After discussing the siuation last night Frank admitted that 4 weeks isn't too long more to have to wait afterall he hasn't eaten since February so 4 more weeks does not seem so bad and best to be on the safe side.
This site has been a great help to us over the last few months, we don't post too often but I have been following all your posts and admire each and every one of you, it has certainly kept me strong through this. Bell thanks for finding the time to get back to me I know you must be so busy at the moment and appreciate your advice, also I hope Paul is comfortable and doing well. Shirl I will ask the speech therapist on our next visit about the barium swallow test, thanks for pointing me in the right direction. Deborah and Sue, Frank delighted with your comments think thats the type of thing has kept him so positive through this.
Anyway Frank has decided to stay in the hospital for the weekend incase he has any queries or thinks of any questions re medication or feeding over the next day or so, that way he can ask the staff monday morning before he leaves. So I am off to the shops over the weekend to buy some banners and balloons to welcome him home on Monday, looking forward to having him back in the house even if it means I will never have use of the remote control for the TV again, it beats the 60mile roundtrip daily drive for me to the hospital any day.
Thanks again, have a great weekend.
Jen Xx

Hi Jen

While you're out getting the banner and balloons, you might want to consider getting an extra remote for the TV and have it solely for Frank's use. My parents did that while I was recovering to control the spread of germs (hands are a veritable cornucopia).

Julia

Hi

The banners and balloons will have to wait, Frank caught a nasty infection at the weekend and the side effects of the chemo and radiation we thought he had escaped have finally kicked in. His white blood count is down and also his magisium levels so he is on drips and getting blood transfusions for both at the moment. He has blisters on the inside of his mouth and a bad burning in his throat, he was sick twice during the night and we're both glad he decided to stay in the hospital as the care he is getting is second to none. We have no discharge date yet but hope everything starts settling down soon.
Thanks for the shoulder.
Jen Xx

Hey Jen

sorry to hear Frank is having a hard time of it.Lets keep our fingers crossed that things look up soon.

liz

Hi there Jen
Sorry to hear Frank has hit a rough spot, but glad to hear he is getting the best of care. Hopefully he'll be up and at 'em in no time.
Thinking of you both ~ you take care.
Onwards and upwards .........
Deborah

I also made it pretty far in the treatment without concern. Lost lots of weight and still am. Up to 47lbs now. I ended up having low blood also after I went back to work. I didn't get a transfusion just on iron now.

Hi

Frank is still in hospital with no sign of a discharge date. The six weeks has now turned into nine weeks but we know its the best place for him so not complianing. His blood count is at 1.5 and they say it must go up to 5 before he can leave. He is still on anti-biotic for the infection and very very tired (they say that is due to the chemo).
He had to leave hospital yesterday to go to a dental appointment, they are talking about starting to make new dentures for him over the next few weeks. I found the dentist great, he gave me lots of information about stuff the hospital had never mentioned. An example of one is : He said when he worked in Houston Texas and had patients that had undergone total glossectomy's that after they had learned to swallow again (with lots of work from speech therapist) that they could eat again with the aid of a "spatula", he explained that patient would eat, chew food as normal and use this "spatula" to throw the food to the back of the mouth. Has anybody on heard about this? I do plan to ask for more details when Frank goes to the speech therapist. He is also going to fit some type of plate to the dentures that will aid Frank's speech even more. This gave Frank lots of confidence yesterday, as he siad if they are planning doing all this work for & on him they must think he has some chance of getting out the other side of all this.

Good luck to you all with the walk. We can't plan for September ourselves just yet. Thanks for the sponsership card Kenny, got it this morning, hope we can get some names and a few pound on there, as every little helps.

As always Thanks for listening.
Jen Xx

Hi all, Frank got some awful news today and i just need a shoulder! The hole in is throat which had closed up completely and healed very well after the thrac pipe was removed started to bleed and weep 4 weeks ago, he had a biopsey last week and we found out today that the cancer is back in his throat, he is to have pet and mri scans next week to see what options he has.

Oh Jen,

I'm so sorry to hear your news. I'll be thinking about both of you and hoping for the best. Many here have come back from much worse. Don't give up hope.

Mimi

I am so sorry .Please let us know when you have some more news.