Well it’s been 36 days since the last radiotherapy session and it’s been one long difficult period. As you can clearly see the burns bandages have certainly done their job!
There have been many high points, I have had pain that words can’t describe, there hasn’t been a minute during the night that I haven’t seen. But as the above says if I dare utter the words I’ve come round from the Dark Side of the Moon, dodged Darth Vada and rejoined the Mamma MIA gang.
I have no idea how many nerve endings there are in your mouth, suffice to say a lot and at some point each and every one of them has been kicking and screaming. I have experienced burning smells every time I’ve walked in a room , the cordite smell of fireworks and if John braked in the car the adrenaline rush of hot air in my mouth frightening. I was told all this is the nerves regenerating.
Now I can at last sip and swallow soda water bliss but no to cheese sandwich !!!! Week 8 brought about soda water along with chicken noodle soup strained .
In week 9 I had a new feeding tube fitted at St James, we have had a few problems with lines of communication and our surgery’s understanding of my needs, will leave it at that! Hopefully it is now resolved and when I am prescribed a food supplement it’s for a reason and that reason isn’t monetary it’s because of what I need on a dietary basis.
Week 9 also brought the return if Diet Coke to my lips but I have lost any taste for tea in any flavour also coffee and plain water is chalk
I have had 2 meetings with Dr Sen and next one is due in mid October at which I hope we both notice a difference.
I have also met my care team at Pinderfields Helen the Macmillan nurse Becky dietician and Nina the speech therapist.
26 September we said goodbye to the feeding tube it was running my life, I was taking all day to get 1000 calories in. Plus the previous day I was made to feel like a criminal. We went to the dentist and a lady who was old enough to know better made me feel like a dirty criminal. She stared and stared straight through me and made me feel uncomfortable to say the least. It was time for it to go and the onus now is on me to drink the revolting Ensure and Fresubin drinks and take all liquid and medication orally. On a plus side for John bless him he doesn’t have to get up at pit time 0500 to do the night time meds’ any more .
The team at Pinderfields can’t do enough for me they blend well with the care teams at St James. This week I developed the most horrendous yellow brown tongue and if possible more pain. Helen took a swab to see what would grow and at 1600 on Friday I received a phone call from her saying yes it was thrush. With it being the weekend it was decided better if we drive to Wakefield to collect the prescription rather than rely on the haphazard service from our doctors, I needed the relief immediately.
This week, 5 weeks after Radiotherapy finished I honestly thought I would be eating a little bit more and getting around but it’s going to be one long slow progress .
I have this week managed a shopping trip to a small shopping centre, called in Marks and Spencer’s food hall spent £30 on food I can’t eat, but at least John and James has a feast on Saturday night.
I am trying food daily eg last night but took 45 minutes to eat a third of a small Cumberland pie washing every mouthful down with soda water, 160 calories small amount but I did it. Sweet things are definitely a no no have tried rice pudding, custards and jelly,but no I scream as soon as sweet thing hits my mouth .
I have managed the inside of a dinky one bite size in a previous life pork pie, small achievement for some but huge to me. Cheese on toast minus the toast peel the cheese off once cooked and slowly nibble.
I am not quite back from the dark side but can see the horizon, and now I only wake up twice in the night.
Spain is beckoning for Johns birthday but it’s baby steps and each day I feel a little stronger.
Not much else to report, I can now slip into the size 10-12 jeans, I knew there was a reason for keeping them all, it’s just a cruel price to pay to get into them.
Dry mouth is a chapter on its own ! We don’t realise how much we take saliva for granted ,ok I may never be able to drink alcohol again no big loss in the scheme of things ,I haven’t had a serious drink for years.
On the other hand bread at the moment cements my jaws together ,now that’s serious I love bread in all shapes and forms .I bake bread I dream bread but early days yet and in this last week I have felt some changes both good and bad.
Current medication s
Co codomol 4 times a day
Ora morph 15 mils a day
Carbustatine for secretions it works !
Nystatin for thrush.
Ibuprofen for swelling
Gel Clair for ulcers yes still got the plus radiation burn now half way down my tongue.
Movicol enough said !
Then my solitary blood pressure tablet ,what a difference 3 months make that was all I ever took! Now I have sheets to complete so I know everything has been taken!
John has become a candidate for master chef in the kitchen ,my sense if smell is still there along with my sense of taste and the smells that are coming out if the kitchen are wonderful, Have already warned him cooking duties will be shared in future !
Will report back after I’ve seen Dr Sen next week if there is anything to report. In the meantime thank you for reading