NHS. No Hard Shoulder

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 4^th 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.