Today was my mask fitting day and what an experience that was . Very hard to explain but I can totally see how people find it a little unpleasant. Obviously not painful but claustrophobic and having to stay so very still for 15 minutes whilst it set. I was so worried I would have a coughing fit as I get a lot of mucus already due to the location of my tumour.
I also had a set back last night. Yesterday, I was in an awful lot of pain, far more than usual . Then cleaning my teeth before bed my mouth flooded with blood and my darn (badly healing) biopsy site had burst open . ufff. Back to having a hole in my soft palate again after 6 weeks have passed since my op, gutted. I emailed my CNS nurse and she said until therapy started the tumour was likely increasing over the weak healing area and had added too much pressure causing it to suddenly go, hence the increased pain I had also been experiencing over the past days .
The good news is my therapy starts MONDAY ... wow and OMG , I was not expecting it to be so soon. I have my official timetable, but they failed to realise that my PEG was due to be fitted Monday too doop de do ! ! ! . So , things went into a little bit of chaos when I was there and by the end of the day the PEG was booked as an urgent for this Friday instead.
I am back to see my consultant tomorrow and she wants to have a quick look at my open biopsy wound for peace of mind though one of the team did take a look and said it was not infected but better pain relief may need to be considered.
Oh and I must remember to get my parking pass. the cost of fuel alone is going to be eye watering over the next 6 weeks
the cost of fuel alone is going to be eye watering over the next 6 weeks
I'm not sure if this is country-wide but I discovered some weeks in that I was able to claim a mileage allowance (from the hospital office) for all my appointments, it really helped.
Parking pass? That caused some rows, several times I spotted people parking in oncology reserved spaces when they were going nowhere near oncology, made my blood boil. I'm not a remotely confrontational person as a rule but I made an exception for those people.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Well done jo. Did you get a tattoo?
I remember mine. “Do you mind but we have to do a quick tattoo? “ STAB! Ouch!
I still haven’t done anything with it but I must.
My trips to RT were often 2hours each way. My lovely husband never complained even though some days with consultant appointments and blood tests we were gone all day.
Hospital parking is free in wales but some days it took a lot of driving round the site to get a place
Good luck for tomorrow
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hey jo
ih sorry to hear the site opened up! What a pain but hey your treatment is about to start and that’s great news. You’ll soon be ticking off your sessions, it will soon go.
good luck and keep positive, you’re going to smash this !!! Sending hugs 
