Radiotherapy 15/35 done
Chemotherapy 1/3 poss only 2
Weight 11st 2 lb still holding steady
Throat 8.0/10 developed excruciating mouth and tongue ulcers.
The top picture was sent by our Spanish friend Rebeca Odria, who found our rental apartment last year and keeps an eye on it when we aren’t there. We all call the powers of the internet intruding into every facet of our lives but to receive this photo today with a little message really means a lot. Along with the sunset photo taken by our daughter, son in law and grandson who all enjoying a well earned holiday there. They really do give me inspiration that John and I will enjoy a trip there before the end of the year.
Food has been the topic of choice this week.
Those of those who know me will be aware I love chocolate in any shape or form 85% pure to Cadbury’s dairy milk and everything in between. Our family won’t waste money on decent boxes of chocolates any more as I don’t read the selections or debate over which one to have oh no dive in and eat is my motto. So imagine my dismay when in Tuesday evening get settled down in front of TV with 2 squares of dark chocolate a few aero bubbles, munchies, buttons, and some fruit gums. Shock horror no matter how I tried it just wouldn’t not go down, a girl needs to keep her calories up whilst being chemically burned and radiated. So for now it’s a no as that night my mouth didn’t feel good ok knew it would happen . See photo below:
A word about our dentist we have had immediate support from Amita Shai the owner of The Mount Dental Practise, Hemsworth.We have been with Amita nearly 20 years and since my diagnosis all I have to do is call in and will be seen without any delay. Amita I would just like to publicly say thank you for taking such good care of my gums and teeth and will be seeing you very soon.
Yes it hurts and yes I now have more ulcers, so oral care consists of saline mouth washes, gelclair oral gel ( google the price £69 for a weeks supply !!!!Thank you NHS no problem in prescribing them for me. Plus rinsing periodically with soluble asprin rinse, so an 0830 appointment in Leeds means a 0530 alarm call. Same at bedtime start one hour before as once the gelclair is done nothing to drink for 30 mins and need liquid or tongue sticks to roof of mouth making everything worse. So can’t fall asleep until I can drink vicious circle.
I am at the end of week 3, one of the lucky ones I still have taste buds and making saliva so am grateful for that. Although I did wonder at my tea on Monday, John did a savoury lamb mince and Yorkshire puddings, umm I thought no taste oh well, then looked at John and he said tasteless , tried the Yorkshire and yeah it had taste !!
Soft poached egg, white sliced toast spread with lurpack and crusts cut off are my new best friends.
Microwave sponge puddings and custard, along with the inside of custard tarts not the pastry.
Although a slice of pork pie I can eat with a knife and fork, don’t ask tomorrow could be different.
Drink of choice is now between cold decaf green tea or mineral water, strangely I can drink aero hot chocolate (cooled down) so will make do with that.
Change of radiation tables this week, from treatment table 2 to treatment table 4. Found Monday difficult as the mask didn’t want to play and was in it for 22 mins in total, but now down to 8-10 mins unless I am having a scan as well. All the radiologists are extremely good at what they do and am totally in awe of their dedication.
My main concern is always my neck, I am a factor 30 girl at the best if times so the thought of radiation burns fill me with fear and from day one I have been using Sobrederm and scarves when I venture out, so below is a photo of my neck at the end of week 3, the radiologists are pleased with it so far, I am hoping to keep it looking ok until the end, but am aware that it’s not always the case and I will deal with it as it happens.
Hope picture doesn’t scare everyone,will update weekly so any changes can be seen.
The nurses on Bexley wing Radiotherapy unit.
Thank you ladies your never ending enthusiasm and support is appreciated, plus nothing is too much trouble see you next week and every week for the next month and in Arnies famous last words I will be back !! If only to get more saline mouthwash !
The weekend in theory is 2 days off, in reality it isn’t, still up at 0600 and doing oral care just so we could go to supermarket at 0900. Need a bit of normality in our lives although food shopping is now perfunctory, there is very little I can eat eg tea for me tonight baked salmon and a poached egg with a tablespoon of carrot purée took me 45 minutes to eat it and was cold plus have to wash every mouthful with water which due to ulcers is burning.
Hot news telephone call at 1800 Friday evening I now have to be seen by another consultant prior to chemotherapy as I advised nurses that I was having ringing intermittently in right ear, (my Dr on leave until Tuesday). I may be changing from cisplatin to carbo platin. So have spent the weekend researching the difference as a lay person I don’t know what if any difference it will make, apart from likely to be last chemotherapy and won’t have the 3rd.