The first appointment letter to arrive was for the follow-up visit to the weekly clinic of the Neurologist. This was when my inability to write proved to be very fortuitous, because I can't use a paper diary and pen, everything is entered into my phone calendar. So when the Neurologist's secretary rang to inform me that she had a date for my lumbar puncture [some people just HAVE to deliver bad news] which would be after the follow up appointment and the Neurologist needed the to see the result of this and another brain scan before the follow up appointment, it meant changing the clinic appointment date and so the secretary moved the clinic appointment for the following week. That was no problem I just changed the date on my phone calendar = soon solved!
I should have known that the solution was too easy – the next appointment letter arrived, it was for the umpteenth brain scan. I need transport to the hospital and back, have done for years and to attend any department so why do they make appointments in an evening for me? I think it is due to the widespread belief that everyone has transport or access to transport, the looks I get when I tell anyone that I am no longer allowed to drive and my other half doesn't know how and neither do my offspring, people thinking I am joking – it seems as though having your own transport is taken for granted for people under 70 years of age. Well I am under 7o and have a license but no car, and given that every visit to any out-patient department and the result of such visit is noted on a mainframe computer which my GP can access, WHY ISN'T A MARKER PUT AGAINST MY NAME SO THAT TRANSPORT IS BOOKED AUTOMATICALLY?
No such system exists, therefore I am sent an appointment letter and then have to contact them, not easy as the majority of departments have an answer-message screening system. When I eventually speak to someone the appointment date has to be altered to ft the transport hours and, at the moment, that usually clashes with other appointments. End of rant.
So I had a rearranged Neurologist appointment when I received the appointment for the brain scan, and the transport game started again. It was relatively easy this time but the only available appointment that fitted with the transport hours was, again, for after the neurologist clinic appointment! Again I had to try and contact the admin department but this time the person I needed to speak to was on leave or only worked part time, I say this because she always seems to be off at the end of the week. Anyway I did speak to her and she agreed that the neurologist clinic appointment needed to be after the brain scan, she tried fit me into the following week's clinic but there were no vacancies, and there is no clinic for two weeks afterwards due to the Xmas break.
I had one appointment per week, which was fine by me because the journey to the hospital and back plus waiting at both ends of the appointment wears me out and I need at least 1 day to recover.
Everything was now sorted, [or so I thought] I went for my Lumbar Puncture which was not as bad as I imagined. I was taken to the Neurological day ward and told to lie on the bed and wait. A sister came to do the procedure, she explained what she would be doing, first of all giving me a local anaesthetic then a long needle would be inserted to draw some fluid off the spinal cord. That frightened me. No wonder it used to be called a Spinal Tap!
I was told to loosen my jeans and lay on my left-hand side curled up in a ball, a pillow was placed between me legs, then she sat down in a chair and inserted the local anaesthetic, she said it would sting but to me it was more of a burning sensation. Then it was time for the long needle, she had told me that it was not a precise science and there may be a lot of waggling it about, and boy did she have to waggle it. After a few “ouches!” she asked if I could feel the needle, the answer puzzled me, I could feel it in my stomach! Apparently it wasn't actually in my stomach but was catching my stomach nerve. The nurse then had more guidance once she knew were she was and found the place she wanted.
I had to lay still during the procedure which was difficult because the natural reaction to something painful is to try and pull away from it. I say painful, it was more discomfort than pain. I was told I had to lay flat for half an hour so I expected them to remove the pillow. But they didn't mean that flat! I was even allowed to lay on my side and brought a glass of water with a bendy straw as I was under instruction to drink a lot over the next 24 hours to bring the pressure back up.
The more painful thing that caused more trouble was the blood test they had to do afterwards. I have always been a coward when it comes to sticking syringes into my arm, 3 different nurses and 3 bruises later they did eventually manage to get the blood, the sister did mention that it would be easier if I was warm and although I thought I was hot, I was actually cold to touch. That is one of my problems, I feel very hot, especially my feet which are icy to touch, even if I catch my opposite leg with my foot. A problem compounded by me having bare feet in the house all of the time because my balance feels as though it is affected by shoes or slippers.
Then it was the usual routine of waiting for the ambulance to go home. A quick rant coming – sometimes, because I can walk unaided apart from my stick to the transport, a medicar is used which is just an ordinary taxi with an 'ambulance' sign in the windscreen. OK they don't get tips or ready cash this way but they do volunteer they aren't forced to do the ambulance run so WHY ARE SOME SO MISERABLE? If they hate the job so much Why do it? End of rant.
When I arrived home there was another letter waiting for me, this time from Urology with an appointment for my bladder pre-operation assessment. I don't know if it was a reaction to the stress of the lumbar puncture or the stress of the whole situation but I must admit it made me cry and throw things. I think I had pushed the bladder situation out of my mind whilst I was trying to digest all the MS information.
Anyway I was back on the needing transport treadmill, I rang the number in the letter immediately and Guess What? The answer phone message was on, it was Thursday afternoon and the letter had the appointment date for the following Wednesday so contact was imperative, but, no-one rang me back, this was also the situation on the Friday. I received a call on the Monday and was told that 48 hours notice was needed to arrange transport. If the woman who called had not been so nice I would have pointed out that if my call had been returned on the Thursday or Fridqy it would have been well over 48 hours. The day after the original was suggested but I already had an appointment for a contrast MRI on that day.
I will tell you later about the contrast MRI and how many times I have had to put changes in my phone calendar.
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