As I write this I can’t help feel a sense of deja vu.
Its just over a month since my original surgery date and the phone call cancelling it due to a “lack of beds”. The new date I was given was 31st January, my dads 50th birthday and the last day of our first planned trip since all this began. Fast forward to the 3oth January, the whole day my partner and I were on edge everytime the phone rang, the perfect way to prepare for surgery, but the dreaded call never came.
Having spent the weekend in Dorset we cut our break short and made the long drive back to Leeds, set the alarm for an early breakfast (I was to fast from 6am) and I started to believe this surgery might actually happen. I was woken at 8 am by a phone call. I recognised the number straight away. My heart sank. It was the ward sister telling me not to eat but not to go in either, they were trying to find me a bed but it didn’t look hopeful. So there I was stuck between preparing mentally for a surgery that may then be cancelled, or, preparing for it not to happen and then not being ready if it did. For 4 hours I was left in limbo not knowing what was happening. When the phone did ring I was told the surgery was cancelled, not by an administrator but by a ward sister. A lady who had no doubt spent much time, effort and money training to look after patients not chase beds. Anger, frustration and disappointment all needing to be released, but you could hear all of these in the sisters voice. I was then told that because they had cancelled the surgery I would be made a priority, funny, they said that last time!
The surgery I was due to have was an open myomectomy, similar to a C-section but rather than deliver a beautiful baby they take the fibroid(s). The surgery requires a short stay in hospital, a recovery of 6-8 weeks (as a supply UQT I am only paid for the days I work and therefore loose 6-8 weeks pay to have surgery) and is termed an elective surgery. Elective surgery, the very term suggests it’s a choice. Yes I opted for surgery over an extended period of taking a synthetic hormone with mixed research that has only recently been licensed for extended use (A treatment I did try for 3 months and with side effects including pain and extreme exhaustion that made it difficult to function effectively). What I did not choose was to have fibroids, a condition I and many other women live with daily, a condition which has had a huge impact on my ability to work and maintain the hobbies I enjoy. As a result of this condition pain and fatigue are daily battles, my teacher training has been put on hold, holidays affected and family events missed and/or postponed. So to use a term that implies “choice” seems insensitive. I am not writing this for sympathy, I am aware there are people worse off than me, but more to raise awareness of the issues caused by fibroids and that whilst news reports are no longer covering the “crisis” it is still there. How long can a situation be termed a crisis before it become normality? If it becomes normality at what point does accountability raise it’s head and solutions begin to be found – a question for the administrators out there.
So for now I am concentrating on my resolution to not waste energy on things I can’t change, admittedly with mixed success. I’m continuing to prepare for surgery whenever that might happen. The first time around I was ready mentally but not physically, this time round I was more ready physically but less mentally, maybe next time I’ll be good to go fro both perspectives. All we need is a new date and a bed, if not I may have to take an airbed with me.
For those interested here is my journey with St James hospital Leeds, since I entered the system of “care” at St James I have never seen a consultant, took Esmya for 3 months and have not seen a single member of staff from the department since 29th September.
July-September – Outpatient appointments all with different registrars.
September 29th – Consent for surgery signed – Esmya treatment began.
Early December – Pre-op (at Leeds General infirmary)
December 31st – Initial surgery date with Dr Tay (Cancelled on 30th December)
January 2017 – informed by Dr Tays secretary she is away and the next date available is late February.
January 24th – Given a cancellation with a new consultant for 31st January
January 31st – Surgery cancelled for the second time.
What does the future hold?