I woke up at 4am this morning and so felt tired due to lack of sleep. I did manage 20 mins exercise (exercise bike and rowing machine) with just fourinternals of exertion and the rest at steady pace.
My treatment today took longer, mainly because the imaging machine wouldn't recognise the 'bobbles' on my mask and kept refusing to take images. I had to keep repositioning my hands until the images were completed.
I then had my clinic appt where I met my Macmillan nurse (Pauline); my clinician (Charlie); my dietician (my memory fails me for her name but I remember she wore purple everything). I will have this meeting each week and will also see a SALT, but she was on holiday today. I found out that Charley had been asked to call me to cancel my appointment with my consultant during the preliminary meetings, but she had refused to make the call. Also, it seems that they have not received any of my information due to me bring a private patient .... So no case history notes ..... And it turns out they cannot provide me with prescriptions due to me being a private patient! So many reasons to switch back to NHS pathway!!
Charley mentioned that my treatment doseage is very high. Whilst this is reassuring on the one hand, I did say to her that I wasn't sure I wishes to know this information..... As it I indicates to me that the side-effects have the potential to be more extreme .... We shall see.
I have asked about altering the Saturday treatment date to enable me, if I feel well enough, to go to Butlins. Charley will look into this in conjunction with my consultant.
I have now been given the following treatments:
- Oralieve gel (like Bonjela) which I should apply to aid my dry mouth as required.
- mouthwash tablets (like my dentists pink mouthwash) to dissolve and use 3-4 times per day
- a request to my GP to prescribe Gelclair which is a soothing gel for mouth ulcer treatment.
I'm glad I finally met the team, but disappointed that I heard about how they knew nothing about me beforehand!
So, what about today's effects of treatment:
I noticed a little bit of a metallic taste during treatment
Immediately following treatment, when I sat up from the bench, my operation site felt tight
No other symptoms apart from a headache by the time we got home - some 4 hours after leaving the house this lunchtime.
I fell asleep before 9pm tonight - probably because I was down on my sleep.
I managed a lovely Indian takeaway in anticipation of big being able to enjoy this type of food for much longer.
Bring on the London trip this weekend to see Lion King and try to visit a couple of museums as well as Jamie Oliver's Fifteen. Small goals throughout to help me get through this.
2 treatments down now, 28 to go.
