It seems I forgot to update the blog yesterday or the day before, but I'm here now.
Mum has arrived (day 7) and so she accompanied me to my appointments. At the Tuesday clinic, my consultant altered when he was seeing me - originally planned for Thursday and my husband was going to come with me, but the consultant altered this and instead hijacked the clinic meeting on Tuesday. I felt initially annoyed, but this soon subsided, because I had already created my questions for him.
So, the treatment itself .... I have been keeping my eyes open during treatment now, and have my contact lenses in at long last. This means I can see what the machine is doing in detail, and I have discovered that behind its glass face are a bunch of interlocking metal fingers that open and gradually alter their pattern whilst I am hearing the humming noise. This opening is dictating where the rays are hitting.
After treatment I went to see the Dietitian and Speech & Language Therapist. The Dietician seemed pleased with my 2lb weight increase .... it has probably tipped me over into the 'obese' category and I do wonder how she feels about this? I don't want to be the only person to undergo this treatment that doesn't lose at least some weight - let's face it, there's plenty there to lose and I already increased since the original mask-fitting!
I asked the SaLT what about mouth stiffness and what are the exercises I could be doing. She said she didn't feel this would happen (which is different to the long term side-effects advised to me before treatment) and proceeded to show me 1 exercise I could do to help with my jaw opening. But, this wasn't before she had asked me to open my mouth as wide as possible. Clearly I can still do this at the moment, and I could feel her looking at me and thinking 'what are you asking me this for?'. Her brief is to help with swallowing and so maybe she is waiting for this to become an issue. At this stage, this part of my clinic appointment felt a bit of a waste of time - I am eating normally, and swallowing normally - though with a little attention now being paid to the temperature of food and drink. This is because my mouth has started to feel slightly more sensitive and my tongue feels a little burnt.
Next to see the Consultant, the Radiographer and the Macmillan support assistant. The consultant didn't initially recognise me .... ؟ always a good sign ؟ ! Maybe it was down to me wearing contact lenses rather than specs, or maybe down to the complete lack of make-up .... fortunately for him, he stopped himself going all the way down the "I don't think we've met before" routine. What are the words that spring to mind ...... how about complete tit! Anyway, he eventually agreed to me doubling up my treatment rather than be treated on the Saturday that has been scheduled. He agreed to this only after I made it clear that I was only going away for a weekend, and at this stage I wasn't even guaranteeing I was going, but I did want to have the option available to me. He has definitely not heard of Butlins (the institution that is!).
My consultant said he wants to be the person prescribing all my medication ..... so the issue of pain relief has been left with him. He is considering whether, when the time comes, I should use Cocodamol or Oramorph (I think I need to do some reading).
I also asked about whether he could provide the 'pattern' of my treatment areas as per my day 6 blog. He is going to try and provide a 'colour wash' showing the strength of treatment in different areas.
Then the Consultant left and I continued with the Radiographer .... my pain, sleeping, etc. I checked I was using the gels properly and explained that my throat has started to feel uncomfortable. I was advised that at this stage I should ensure I took the full 4 doses of paracetamol every day, and introduce Ibuprofen alongside if the pain gets worse.I also need to consider some indigestion meds alongside ibuprofen and the importance of lining my stomach before taking it. Milk was the suggestion, so personally I am thinking it will be all about the milk-shake .... bring on those calories!
So, how is my pain these days ... well my right cheek feels as though it is on the brink of ulcering and my swallowing remains achey. I am continuing my mouth-care routine and have charged up my newly-delivered oral irrigator (check me out!). I started using this on Day 8 ..... it did manage to clear out the Ryvitas, so I think this will be the way ahead.
All continues to be the same at this stage.
