I haven't written for a few days ... mainly because I have developed double vision and I don't really enjoy reading or writing as much. I apologise in advance, because this post is really, really long!
It came as a bit of a shock when I awoke on Tuesday morning with double vision. It can be a symptom of MS and, over a decade ago I did experience several visual disturbances, including double-vision. However, my take on this episode has been slightly different as when I googled (Yep, I know how dangerous this can be!) the only links I could find with first page results related to double-vision and brain tumours. I was able to google only after I had installed my decade and a half old eye patch. Before wearing the eye patch I was feeling dizzy and nauseous.
Following my treatment (session 12) I attended the weekly multi-disciplinary team meeting. I have not lost any weight and because I am managing to chew the first part of the meeting was brief. I told my Dietician that it must be a real quandary for her when she is telling someone who is approaching obesity that they shouldn't lose weight. Not surprisingly, she didn't respond. Next was my Macmillan Nurse ... however, my Consultant was there, as I had expected him to be. I was told he was on annual leave.We talked about symptoms and I explained about my double vision and also my worst fear, that it might indicate cancer elsewhere. She worked quickly to reassure me, recognising the potential for increased stress and anxiety. I went to see a Registrar from the Head & Neck Cancer Care team - who said she saw no reason why it would be, and that during Radiotherapy it isn't advisable to carry out a further MRI.
Next she arranged for me to go to the Eye Casualty (like an eye A&E). There I was triaged before been sent to the Orthoptist (never heard of one of these). After a wait I was assessed by him and he identified appropriate tests ...... they were really interesting tests involving placing a circle pointer where my eye saw a shape and he plotted this against the actual position! Once he had finished the tests he narrowed down that my right superior oblique muscle wasn't working properly. He gave me some tacky, blurring tape that I have since applied to one lens of my glasses - I no longer need to wear my eye patch. I am back to see him next week to check the progression and possibly get some prisms installed onto my glasses until the double vision rectifies.
Further tests in the eye clinic involved removing my contact lenses and putting in drops to fully dilate my pupils. 30 minutes later and I looked like a cartoon character (or a smak head) with HUGE pupils. The next tests were carried out and assessed and fortunately indicated no optic neuritis.
We were free to go home for the day .... it was 6pm and we had been at the hospital for 6 hours .... totally shattered even though we had done not a lot. I felt more relieved to have had some tests carried out and to have had my mind put at rest a little..
My sleep that evening was plentiful, but pain levels were increased and we hadn't had chance to buy the suggested Solpadeine
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The following morning I awoke at 4am with a painful, achey and sore throat. The catarrh and saliva added to my discomfort and I decided to quickly eat a little Ready Brek to line my stomach, before taking pain relief (Ibuprofen and Paracetamol combination). I spent the rest of the night on the sofa trying to decongest and to sleep a little more.
Mum went to get the necessary Solpadeine and I planned when I could start taking this.
Following my shower and hair wash, a knot of hair had to removed and it transpired that a parch of hair had fallen out and knotted itself into my head ..... I was expecting some to fall out, but not as a knot. So I now had a small bald patch to the right of the nape of my neck .... fortunately it isn't obvious because my hair is so long and covers over it.
Treatment today was fairly uneventful, although lengthy due to lots of repositioning to ensure precision. I came home and rested a little in the afternoon before my daughter came home from school.
I started a meds plan and installed a new app to keep track of planned and actual medication.
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Day 14's treatment .... the double vision persists. I awoke this morning in less discomfort - I am hoping that my meds plan and using a beanbag to enable me to sleep in a more upright position have helped.
I was told yesterday that I had a consultant team appointment before treatment this morning. This was delayed by over one hour and was with one of the Registrars. She was lovely and gave me a prescription for higher dose cocodamol and Oramorph.
I then went across to the Radiotherapy area for my treatment. My Consultant walked through and, as I was called for treatment, I was told that he wanted to see me. My more cynical side wonders whether he had popped in during his week's annual leave only to be able to claim a private consultation from BUPA? This session pretty much replicated my earlier meeting with his Registrar and the only difference was that he discussed with me my double vision, my Multiple Sclerosis, my daily Vitamin D intake (and whether it should continue at the current 6000 IU) and his desire to nvolve my Neurologist at this stage. I will update on the outcomes when I next see him sometime next week.
The treatment today was uneventful, but on a different (possibly older?) machine, due to the regular servicing programme. On the way home, after been out of the house for over 4 hours, we stopped off to pick up my new pain relief .... so tonight's job will be to get my head around what, when, side effects etc.
I had a 30 minute snooze before my daughter came home from school and now I am feeling a little fresher for the evening.
