Advice please

Hi Debbie welcome to the club it sounds like you are doing really well . Good for you keep it up . Its hard to say as we are all different I was on a tube for weeks so not the person to ask really. All the Best Regards Minmax 

Hi Debbie

As Minmax says we are all a bit different as all had no doubt slightly different situations and treatments but I am sure useful tips will follow. I had my surgery in Feb (base of tongue lump removed plus a neck dissection). I was in hospital for about 18 days and did not have a feeding tube. I managed a couple of very soft foods for a few days and the food supplement drinks but then had a patch of about a week where I could eat very little (still OK with Food Supplements and Stewed Apple and Custard I recall) as it was too painful to swallow, I was not on sufficient painkiller at this point and once that was adjusted my eating started to progress again. Once home my eating continued to improve and at about 4 weeks I recall being able to eat an improving variety of food, not just soups (I too found Tapioca a good one to get down). I think I was for example eating roast chicken and veg etc with gravy at about 4 weeks after surgery (not full size portions). The bore for me was that my taste was not good. I think I recall some swelling of my tongue but it was not enough to effect my speech so I got away with that problem. 

As for Saliva I don't think I had a huge problem with that after surgery (maybe a little). However when my Radiotherapy got going "Sticky Saliva" or in my case very stringy saliva and a lot of it several times a day did become a very tedious issue. I used to try inhaling steam, drinking hot drinks, sugar free gum all which helped a little. And then about 3-4 weeks after Radiotherapy the Sticky or Stringy Saliva issues just seemed gradually disappear I am very pleased to say.

Also I do get a very Dry Mouth at night (lack of saliva) but I am working on that one, and you did not mention it as an issue.

Good luck, hope your speech improves soon for you, 

Onwards and Upwards

Richard

Hi Debbie. Sorry can't help with time scales but you've had quite disruptive surgery there so I wouldn't worry about what's happening. There's a lot of healing to be done. Everybody is different and all it takes is time.fingers crossed for you

Thank you Richard. My GP adjusted my pain meds yesterday, so I’m hoping once they kick in, I will feel a bit better. Soup and  tapioca have become my best friends lol

I think my main problem is being afraid to swallow and getting more solid food stuck and me choking. My husband said it’s only my second week snd I shouldn’t be impatient and wait for my speech therapist to help me.

You being able to eat roast chicken after 4 weeks is amazing, I can’t wait

I am really afraid about my speech, my tongue feels like it is filling my mouth, so speaking is difficult and sounds bad. However, I don’t think my tongue is swollen , it’s just the feeling it is

Thank you both if you got your advice and personal experiences, it is very useful

Debbie x 

Thanks Dani

Its only been two weeks, I must have patience 

Its the worry in the early hours when I’m awake snd in pain, when I think of never being able to speak or eat again

Its selfish and self absorbing , and then I do feel ashamed 

I just want to thank you all for the support snd advice that you give me

Debbie xx 

Don’t feel selfish and certainly don’t feel ashamed if your feelings. You’ve been through a lot. I’m always saying that if some of our clinicians could stand in our shoes they would be much better attuned to our needs. Debbie if the pain isn’t under control  please ask for something better. What are you taking? And are you taking it regularly? 

I was on oremorph, but stopped taking it, it does not work. So now I am on codeine, paracetamol and pregabalin. Some days it works other days it hardly touches the sides I’m guessing I need to wait a few weeks for the healing process .  Xx

I saw my consultant yesterday, and he said they have got all the cancer, only one lymph node was affected and it had been contained. I don’t need radiotherapy or chemotherapy. I am seeing consultant for next few months to check on the healing process, and seeing speech therapist next week for exercises to help me eat and speak. My Consultant said he had preserved the nerves, it will take 2 to 3 months for everything to feel better. I will have a scan in 9 moths, then yearly after that.  I thank God and all the medical staff for their help. I also want to thank everyone on here who have given me advice and support, without this I would have been in despair and very frightened. Still on liquid food, but this afternoon I am going to try a crumpet lol 

Fantastic news from your consultant. Good luck with the crumpet.

Thanks Richard

looking forward to a crumpet, not sure it will go down but going to have a good go. Consultant advised me to chew gum to get my jaw moving better, my tongue is still numb, so I ended up biting my tongue lol. I think I will wait a bit longer before I try that again