Hello,
I hope everyone is well. I've not been on for a while as I've been trying to recover.
I'm 7 weeks out of my treatment now (33 fractions 5/6 cisplatin) and 1 bout of neutropenic sepsis right at the end of treatment. Just a few questions;
Usually I am managing well I'm still taking 4-6 30/500mg cocodamol a day (my flap feels like it's burning sometimes where it's suture meets my cheek) and I returned to work 3 hours a day 3 days a week from home which has helped my mental health.
Today I am having one of those exhausted days I have had 10.5 hours sleep and wanted to go back to bed within and hour of getting up... Is that common 7 weeks after treatment? It happens a few days a week.
My oncologist said to take multivitamins which I am. I am also still quite peg reliant managing to eat some macaroni cheese and porridge/ yoghurt things like that but my jaw opening has now dropped to 29mm despite me doing my exercises I also have a palsy to my right lower lip which makes eating harder. Does anyone have any good exercises for a palsy? My team won't consider botox for another 10 months.
My current treatment plan is 3 monthly MRI head and neck with contrast and 6 monthly CT abdo, chest and pelvis with contrast. I'm grateful to be monitored so closely but I'm not sure how I can overcome my fear of recurrence when I will be thinking and counting down to the next scan.
Any ideas most welcome and thank you all for your support through the journey
Kellie x
Hi Kellie. Welcome back.
I can say that I suffered bouts of radiation fatigue ( the sort that poleaxes you out of nowhere ) for a good six months. You can’t fight that. Just rest when that happens.
I can’t comment on the Palsy. Dies your speech therapist have any ideas?
7 weeks is really early. I wasn’t right for a year but felt really much better by six months.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Also to update you we are getting a Thor machine I was so very happy to hear this! Thank you for putting us in touch x
Oh that’s wonderful.
Do you have a lymphodema clinic attached to the hospital? They might be best place to advise you how often to massage but I must say that I massaged mine away several times a day.
Is the palsy due to nerve damage? It takes a long time for nerves to repair so don’t despair just yet.
Hugs xx
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I know a friend of a friend has just had surgery and the team were talking to her about it won't be quick enough for her but they suggested a hand held one like mine
No it's separate from the hospital a community one but they said wait list is around 8 months.
My surgeon cut the nerve that allows feeling but saved my other nerve (cannot remember the names) he said my nerves were likely annoyed and bruised so I can be hopeful then thank you x
