Glossectomy, neck dissection and RT updates

I'm really sorry to hear the side effects and the toxicity have been so hard for you Tobi Le Great. Were you able to get in for treatment? And have you had a chance to discuss options with your oncologist? You probably know this or are already on it, but people here have said about how long lasting morphine helped.

Thank you for your words of support, definitely everyone's different and coping as best as they can in an incredibly difficult situation. Of course we continue to be there for him. We'll be travelling to the UK next week so we can be with him for the final days of treatment and the infamous 2 weeks after.

A silver lining to the accident is that some family and friends have rallied round and are providing support.

Please take care, take it easy and keep us posted. Xx

Hi Fab1, thank you for sharing and for your kind words. I can update you that since the accident, several positive things have happened. He has agreed not to drive anymore and will not be getting a courtesy car from his insurance. Between local friends, family and taxis he will get to and from the hospital. He's sorted with deliveries and has learnt to set up notifications on his mobile phone as not to forget all the different meds he's on.

At the oncologist review today he accepted to trying morphine as he had lost some weight (only 0.8kg though, so not to worry too much just yet).

Isabel03 said:

At the oncologist review today he accepted to trying morphine as he had lost some weight (only 0.8kg though, so not to worry too much just yet).

Oh Isabel....I'm so pleased. It will make life so much easier for him. I was ten years younger than him when I started treatment and I found it hard enough, and he is getting a week more than I did. You must have an exceptional FIL.

Isabel03 said:

We'll be travelling to the UK next week so we can be with him for the final days of treatment and the infamous 2 weeks after.

Not 2...

For two weeks after I largely slept. It was another month before I can say the treatment was behind me and recovery could start.  I'm glad the family have rallied round

Hi Isabel 

pleased he’s taken oncologist advise. Goid luck for next few eeeks. 

Hazel 

I forgot to say what he's been eating, in case it helps anyone with ideas and alternatives.

At this stage everything is basically liquid or almost liquid. Mushroom soup has become a favourite, banana custard and some protein mousses. Yogurt is part of almost every meal, and fortisips are a staple.

So far morphine only needed after the RT sessions.

Isabel03 said:

I forgot to say what he's been eating, in case it helps anyone with ideas and alternatives.

Smoothies.

Banana, avocado, peanut butter, ice cream has mostly everything you need. Add the peanut butter last in small bits or it will just stick to the blades in one sticky glob. You can substitute the ice cream with a fortisip 

There are masses of recipes for high calorie smoothies on the Internet 

Radiotherapy is over! 33 sessions done and he is back in his house. My partner and I came over for the final week of treatment and will stay for the following 2 weeks. Here's how we found him:

Neck is very raw, but fortunately only a small area of the skin is broken. Flamigel 3 times per day seems to feel nice and cooling on the skin. Aloe Vera gel also helps with hydration and cooling in between flamigel.

Mouth, especially tongue, is very sore, full of ulcers. However he is still able to eat and only lost 2kg overall. Only thing that seems to really make a difference with the pain is dispersable aspirin. He still takes the other stuff (gelclair and Antacid Oxetacaine), but swears by aspirin. Cocodamol at night, and no morphine. Whatever amount of pain he has seems to be manageable for him with this painkiller amount.

Main complaint is how swollen the tongue is, which means he can't talk as clearly as he would like. However we can understand him no problem at all. He also gets tired if he talks too much. Lots of sleeping and napping.

Appointment with the oncology team in 6 weeks to assess toxicity. He thinks/hopes he'll be back to normal in two weeks...

Isabel03 said:

Appointment with the oncology team in 6 weeks to assess toxicity. He thinks/hopes he'll be back to normal in two weeks...

Hi Isabel. Thanks for the update and well done to your FIL. 
We are never back to normal but I’m as good as I ever will be at five years ( improvements continue) 

I was happy with my progress at a year. 
Just warning you. There are a few potholes in the road to come. 
Hugs 

Thank you Dani for your kind words!

I'm as aware as I can be of the ongoing challenges and the slow road of recovery. My FiL on the other hand gets angry and calls my partner a pessimist every time she mentions this...

On the bright side, after not being able to tolerate Difflam for a few weeks, he's back on it and says it feels nice.

Food is still very soft. Mushroom soup is the staple lunch with some soft brioche bread in it, and dinner has been scrambled eggs with lots of milk slowly cooked in the microwave with some cheese added at the end, constantly mixing and making it soft.

Well he's cracking on being able to eat anything at all at this stage. I've a feeling he will do really well. I think you can relax a little 

Isabel03 said:

I'm as aware as I can be of the ongoing challenges and the slow road of recovery. My FiL on the other hand gets angry and calls my partner a pessimist every time she mentions this...

Partners are often Yin and Yang, eh? Stan and I are though the roles are reversed to your FIL's.

He really does seem an exceptional man