The date of the surgery has been arranged relatively quickly
after a ten-minute chat with the surgeon in Oxford. It was frustrating to
travel six hours that day for such a short appointment which could have been
easily arranged over the telephone. I was relieved though that at least the
surgery was arranged and I knew what the next step is going to be.
Funnily
enough the first date available which I accepted without any hesitation was the
4th of November. I said funnily because it was my MG ‘anniversary’
as the ocular symptoms started exactly one year ago. I can’t forget that night
when I went into a restaurant with my partner to celebrate another year we
shared together (yet another anniversary, a happy one this time). Things
started to get blurry and double especially on my lateral gaze. Shortly after
that I started to experience frequent double vision episodes first thing in the
morning. It was clear at that time that something went wrong and I needed
another couple of months to find out what the reason was. Here we go, exactly
one year after that I am scheduled for surgery which is my chosen treatment route… Researchers claim that having
the thymectomy done within the first year from the onset reduces the chances of
generalization significantly. These findings encouraged me to take action and
address my MG sooner than later.
The pre-op assessment at the J.R. Oxford Hospitals followed
shortly. On paper it looked very organized and the multidisciplinary approach
gave me hopes that it was arranged in a professional manner. I was booked in to
see a doctor, the surgeon, a pre-admission nurse, have my X-rays and ECG done, etc.
In reality things turned out completely different. The X-ray department was on
strike and all the following appointments have been delayed as they depended on that. The
pre-admission nurse was stressed out as her colleagues were off sick and she
was overwhelmed with all the patients that day. She gave me a full report of
her duties and administrative issues which honestly I didn’t need and I
consider that quite unprofessional. Eventually she has found some time to chat with
me but I felt really rushed through the pre-admission procedure (especially that I haven't had any surgery before). Another nurse
approached me in the waiting room and disclosed some personal details in front
of other patients waiting there (no ‘No confidentiality’ signs around!). One
doctor ignored some basic hygiene rules asking me to blow in a tube he’s been playing
with with his bare hands during the appointment. My surgeon was not
available on the day to see me before the surgery. Finally I was told that I don’t
need to talk to an anaesthetist prior to the surgery because I am ‘young and in
a good shape’ (that’s definitely not the reason I’ve been referred for surgery!).
Long delays and lack of professionalism which
have changed my opinion about the NHS radically. To conclude, it was a long and
horrible day of waiting about five hours (not to mention another eight hours travelling to Oxford and back) for less than half an hour of appointments all put
together. It is not what I would call efficiency! At least I have made some progress with the Magic Mountain which ironically is a novel that explores the illness among other themes...
Anyway I survived that day. Just to find out the day after that the
surgery was cancelled and I’ve been rescheduled on a different day. Just like
that. I have made some enquiries later on just to find out that they had to ‘move
some patients around’?! I had to undo all the arrangements at work, with people
who have taken time off work to be with me during these difficult times, travel
arrangements and so on. Quite a bit of inconvenience and stress which has made
me feel unwell. To be honest I have found more difficult to cope with all the
stress than the condition itself at this stage.
The new date they offered me didn’t work so well as I had a
holiday booked around that time and that was the last thing I wanted to cancel. I’ve been sooooo
looking forward to that! I am perfectly aware that my health comes first but I
decided to take the risk and travel before the surgery which has been finally
arranged in January.
