He doesn't see a speech therapist till after radiation now and everything settles down then they will give him speech therapy x to be honest we've only seen his surgeon once since he left hospital and a district nurse twice I thought there would be more support dietician been once changed his feeds as he was loosing weight then said see you in a month x

He will get a lot more support when he has radiotherapy. There will be a range of medical professionals there and he'll see people every week day.

The mask. Some people look at them as if they're a prop from a horror film but really it's just an essential device to hold your head still and make the rays accurate. The procedure lasts 10 to 15 minutes. It's uncomfortable if you have to have a tongue depressor but otherwise the mask itself doesn't hurt. I used to go through a list of things I'd memorised to cope with the way the tongue depressor made my jaw ache.

What made radiotherapy tolerable for me was the friendliness and concern of the staff. I almost missed them when I finished.

I hope so I hope he doesn't encounter to many problems and doesn't shut off x just got to keep doing what I doing and pull him through long few month now fingers crossed xx

Delly, Kris had his entire tongue removed and part of his Pharynx. The surgeons told us that they built a downwards sloping shelf where the base of the tongue used to be. So that fluids would just go down the slope.
I just want to reassure you that if your Dad has been swallowing water and he is NOT coughing then he isn't aspirating. If fluids ( or food ) get into the lungs we cough . Our lungs are very good at coughing out what shouldn't be there.
I hope your Dad will be seeing a whole team while he undergoes radiotherapy. This should include the Speech therapists. Let them guide you on the swallowing
I would push very very hard to see a Speech therapist during radiotherapy. Make a nuisance of yourself if you have to. I think it is most important that Dad does start swallowing as soon as possible.
I was labelled as the wife from hell after Kris's surgery. But, I was fighting for my man and I wanted the best outcome for him. The whole team eventually apologised to me as I was proven right on a few important matters.
You are a wonderful Daughter.
Tammy

Hi tammy no he doesn't cough at first he was kind of throwing it back tipping it back and then after 2 weeks was just swallowing all his neck moves like ours as I've watched it xx I'm worried now because he doesn't actually see anyone other than radio therapy man x my dad says he knows he can swallow and like I said he's not coughed once and as the week went on it got easier x do you think I should ring up someone and ask for swallow assessment again ? Cos it will be a long time now until everything has healed from radiation xx

Please don't let one person's opinion color your dad's hope. Humans are very adaptive. I know the surgeon did the surgery and he may have an educated opinion but it's not finite.

He should have a suction machine to get rid of some of the saliva. Sadly it gets worse during the latter days of rads too. I used to spit constantly. Then after that it completely dries up. And may return a few months to years later. The body does heal. Tell him there is hope and a new normal on the other side... Getting through the worst of it of course is the goal.

Hugs.

Hi Delly , sorry to hear about your dad , it's very hard to watch somebody close to you struggling . I'm surprised and annoyed for you about the lack of support you have both received . This wasn't the case for me , I feel that I had a lot of support and input from the specialist nurses , Macmillan nurses and district nurses , but Mike wax straight on that phone advocating for me when I wasn't well and demanding answers to our questions .
I can't really help with the swallowing questions as I don't know , but others I see have and will continue to help and advise you.
Your a good daughter I'm glad your dad has your love and support .
X

Hi everyone he does have suction machine he rather spits it out in his way I'm hoping it does dry up so he's able to start taking as he does have quite good speech which is a major positive but he never opens his mouth at the moment even when he suctions it tends to come back straight away x di66 I'm hoping a lot more care with his radiation is coming because so far it's horrendous x my dad upped his feeds again today 3300 calories today ha he's determined to get back to 15 stone I'm hoping he can as he looks very frail at the moment only 12 stone x he's been outside today peeling his taxi driving stickers off his car which is brilliant because he's abit conscious of his face so I was proud if that :)) he seems very determined at the moment and I'm very shocked how well he's doing x I wish he didn't have to go through this radiation as it's going to put him back xx thankyou everyone for taking the time to answer me hope your all well xx

Oh and got a call as ready to set off for radiation today and they cancelled it as the machine was broke !!! Think my dad was secretly pleased ha he's dreading the mask on it covers his face with holes for his nostrils it's to protect the bits he's already had radiation on 22 years ago as they said it would cause damage xx

Hi Delly, I think that if he can swallow and he is not coughing then he's ok. While Dad is undergoing radiation, he must be being seen , at least weekly, by the Radiation Oncologist. Go with him to this appointment and insist that he is seen by a speech therapist. Ask for an urgent referral. As a patient who has had a total Glossectomy he must be seen by a Speechie, to help him with both speech and swallowing. ( though I think he is doing well with the swallowing despite the surgeon). I hope you get better support through this next phase of treatment,
Tammy