Hi all,
My Dad had his lower left jaw removed together with the lymph nodes last Monday (20th Feb). His recovery was going relatively smoothly and as of yesterday he was starting to sip water and only had his nasal feeding tube left. Mum and I were delighted with this progress after less than a week post op. However, he has been plagued by excess saliva. His consultant told him to force a swallow by lifting the corner of his mouth then swallow. He tried and it definitely rescued the amount of saliva but he couldn’t keep this up as it was SO painful to swallow. He resorted to moping the saliva with tissues from the front of his mouth and/or using the suction (which he’d been told not to do by the consultant). This morning his consultant said the free flap has developed a small hole. He’s immediately ceased all sips of water in case the water infects the free flap. He’s prescribed antibiotics to try and keep an infection at bay. Dad feels this is a huge blow for two reasons: 1) the worry that this might create the need for remedial surgery; and/or 2) having to come home with a PEG fitted.
Mum and I had to be a bit forceful with him today and reiterate the unavoidable need to swallow. He’s saying it’s still too painful. Mum is going to ask for an increase in his painkillers.
This feels like a chicken and egg situation. Has anyone else been through this? What did you ask for to help the pain of swallowing your own saliva? How did you cope mentally with any setbacks encountered? Did anyone have to come home with a PEG because of a similar situation?
I am so angry for him I could scream. He’s been through enough and this set back is the last thing he needs. My poor Mum who is 75 is really feeling quite low too.
Thank you for taking the time to read this and for any advice you may have.
Jenny x
Hi OC. Sorry to hear about your dad. I’m afraid flaps fail sometimes so it’s nobody’s fault. What analgesia is he on? It’s a good idea to ask for more because what he’s on isn’t enough. I needed morphine both short and long acting as well as paracetamol to get through.
Don’t be frightened of a PEG. If he really needs one it will take all the stress out of eating and swallowing and reduce the pain.
I hope you find the help he needs. Do let us know how you get on.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Jenny, if your dad is struggling with swallowing then i would recommend having a PEG fitted as it will help a huge amount, i know how your dad is feeling with the swallowing and its not his fault that he is struggling, its ok for the consultant telling him to do this that and the other but he is not going through what your dad is going through. When i had my lower jaw removed and reconstructed i had a PEG from day one so i did not have to worry about the swallowing so much also i used to have a flannel for the excess saliva because swallowing was difficult it made it easier for me. As Dani mentioned flaps or skin grafts van become infected and can fail, i had to have two of my flaps/grafts done again because the body rejected one and the other was an infection so they were done again with great sucess, my last procedure was done in 2010 and everthing healed up ok it just takes time and patience, hopefully the antibiotics will do the trick and stop the infection. I was on strong painkillers in liquid form, mine was oxycodone but a lot of people have oralmorph ( not sure about the spelling) which is also available in liquid form so it can be used with a NG or PEG. It is still very early in your dads recovery and it will be about three months before things start to settle down, i know how difficult it is for you all but he will start to feel better and in time the salive issue will ease as many can vouch for on here. Wishing you all the very best in your dads recovery, take care.
Chris x
Its sometimes not easy but its worth it !
Hi Jenny. PEGs are left in till the dietician is sure weight is being maintained by oral intake. It's as simple as that really
Good luck and give your Dad a hug. He has a great daughter
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I’m so sorry to hear that Jenny. I’m sure the surgeons will be on top of it. Fingers crossed xx
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
