Hi Pam,

I have found the Dr's don't always tell you everything. I'm glad I'm on this site as I've been able to create a list of questions to take with me to appointments. My medical team are all used to me taking out my phone to get my list out.

I think you are doing a great job. It must be really hard for you when you want to give your husband the best chance and then he doesn't ask the questions that'll help him. You are amazing and so strong. Anyone who has a loved one going through cancer, who is being so supportive, are amazing people as it's not an easy journey either and it is easier for them to hide from it all.

I wonder if your husband's reluctance to try different foods, until the Dr says he can, is his comfort zone. He might have a fear of choking on something and isn't ready. I know that when my speech therapist said she was happy with my swallowing of water and then gave me a pot of custard and a spoon to try in front of her, I was terrified. I put teaspoon of custard in my mouth and didn't know what to do, my mind went blank. It was like performance anxiety grin I managed to swallow some, but had to clear my mouth out with water.
As I've got more confident around swallowing I've realised that I need strong flavours to help me swallow and enjoy the food. Vanilla custard is too bland for me, so adding other flavours such as orange blossom water, rose water, coffee etc have helped. So when your husband is ready to try then it might be useful for him.

With using the toothpaste, would he be up to rub a little bit around his teeth, rather than brushing his teeth. My dentist at the hospital said I need to use fluoride toothpaste twice a day, rinse and swallow the residue, and to make sure I drink plenty of tap water (in the UK we have fluoride in our tap water) to give my teeth the best chance. At the moment I'm struggling to clean my bottom front teeth due to the stitches in my bottom lip, but I can rub toothpaste there if I use my little finger to put the toothpaste on.

I'm being admitted for an overnight stay for my chemo, partly for the length of time it takes but they also want to keep me under observation. I have appointments booked with my team every Monday for 7 weeks and I can go and see them anytime throughout my rads treatment. I know it's going to be hard on my body, I'm also having immunotherapy - all 3 treatments cause fatigue so I feel my bed will be used quite a bit over the oncoming weeks.

Thank you for looking out for me, I will look out for your updates too.


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile