So today I had the final (30th) treatment of adjuvant radiotherapy following my partial mandibulectomy with fibula free flap reconstruction with neck dissection in July.
Man, what a crazy few months it has been.
While I fully realise that radiotherapy is the gift that keeps on giving for another few weeks, I wanted to share some of how I have done, a few of the things that have helped me and also say a HUGE thank you to everyone on this forum as well.
The nurse who saw me today was very encouraging and told me to keep doing what I have been doing as she said I am doing “fantastically well”.
I am still eating completely normally even though I can’t taste anything, am, mostly pain feee and have not needed any pain meds at all, except for yesterday when I took some paracetamol to see if would have any impact on the soreness of my neck - it didn’t.
The main impact I have had (other than the taste thing which as a foodie is not helpful) is the breaking up of the skin on my neck this last week particularly. That is really sore and makes moving my neck painful, particularly around where my scar is from the surgery. I have epimax cream and also intrasite gel pads for that - both of which really help.
I also have a mouthwash that I use regularly and GelClair for “coating” the mouth ulcers of which there are many but because they are mainly in the area where the surgery removed my nerve, I can’t feel most of them.
i am pretty exhausted most of the time at the moment but hope next week to start walking a little to keep me active. That said, I managed to walk up 7 flights of stairs the hospital today following my last appointment while carrying my mask and a stash of medication for the next couple of weeks. I told my wife that was my aim on the first day of treatment and I did it! I know in a few weeks the exhaustion will lift and I am looking forward to that. I am though still sleeping well so that’s a great bonus.
I’ve not had too many issues with mucus which I know many have, my nurse thinks that’s down to my frantically commitment to hydration - I have massively upped my water intake and that has really helped.
i am pretty swollen both externally and internally but I know with time that will go down and even though I know I have got off lightly I am still feeling pretty beaten up.
There are four things I have done that have been incredibly helpful to me. Firstly, I put out a request to my church asking for people to volunteer to drive me (2 hour round trip) to my daily appointments and back. This did three things - took the pressure of me and my wife (she has a full time job and I wasn’t sure if I would be fit enough to drive), meant that if we couldn’t find parking (Ninewells hospital in Dundee is a parking disaster) I could just be dropped off so there was no stress on making the appointment, but the most important thing was it gave me company which has been massively beneficial to my mental health.
The second thing I did was set up a private Facebook page and invited anyone who wanted to be a part of my journey to join me. Here I posted daily updates on how I was (the good the bad and the ugly - very open and honest) and asked people to pray for me - as a person of faith I know that has made a tremendous difference. It was extremely cathartic and I had so much support from that it really helped me every day.
The third thing was to keep eating normally - now I know many can’t but i was able to, I could have chosen to stop eating as there was zero enjoyment in it but instead, i went in the basis that “food is fuel” and that has worked out well for me. The nurse said she believes that was a key factor in how well I have done.
The fourth thing I did was to make sure I was always honest with the radiotherapy team, nurses, dietitians, speech and language people etc, about how I was doing, what I was experiencing and giving them the chance to help me - I think that was very very beneficial with how well I did as they were “on it” shout out to the radiotherapy team at Ninewells.
Now, I am going to rest and recuperate for as long as needed while the radiotherapy keeps on working in the background for the next week while BUT knowing i will turn a corner soon and then start recovering.
I wanted to give you all n update and as I said thank you all for your support on my other posts etc and also share my experience in case it helps someone who is yet to go through this.
It is not easy but it is doable - trust me, if I can get through this you can.
