When my surgeon agreed to do my ileostomy he asked me if I would do him a favour. He is running a study of people on waiting list for surgery and hoped I’d partake. Of course, I said yes. In my opinion, the more doctors know about life as a patient the better. So, in that vein, I’d like to share with you my experience of waiting for my surgery date…
It’s been about a month now, since my surgery was agreed. Over two weeks since my pre op. Still I have no date. Things may have gone a little faster, but my extensive and complex list of health issues threw a spanner in the works. As always.
In order to be scheduled for surgery and receive a date you need to have the go ahead. ‘Fit to proceed.’ Whilst my tests at the pre op all came back ok (despite being told I’d had an acute kidney injury I wasn’t aware of recently) I couldn’t be pronounced fit without more information from my POTS team. Recently they’ve put me on medication for MCAD and the nurse who oversees pre op was, rightly, concerned this may affect my care needs whilst in surgery. My progress along the conveyor belt was halted until an email came back outlining the correct protocol to follow for me.
Whilst I appreciate the fact that the hospital is doing their best to ensure a good outcome for me, the wait was maddening. Every day I was calling around, leaving messages on voicemail after voicemail. Until eventually I heard back from the lovely lady coordinating my pre op assessment to say that she had given the green light!! Fantastic! I was elated! Finally things could get going!!
My surgeon was away most of May and will continue to be away in June. Meaning that, if I want to be sliced and diced before July I need to put my faith in another surgeon. A surgeon I haven’t even met. This is something I was dead against. I like my surgeon, I TRUST my surgeon. He is the best my hospital has to offer. I always said I would just wait to be seen by him.
But this waiting is driving me mad! Each day I hope and pray that the post will fetch me a hospital letter with my admission date, or the phone will ring with a cancellation I can slot into. Meanwhile, my condition is worsening. The prolapses continue to get larger and larger, making it harder to pass anything. Anything at all. My insides hurt. They ache and they stab, twist and pull. My stomach swells and my kidney area feels about ready to explode. On top of all that sits the stomach cramps and absolutely crippling back pain.
I’m trying to continue normal life. To still get out and about. But by the end of the day I’m yelping in pain like a wounded pup. Any movement takes such an effort that it’s leaving me on the constant verge of tears. I feel angry and disgusted with my body and what it’s doing to me. I’m afraid that my bladder will retain too much and give out unexpectedly. I sleep (for the little I can get) on a towel as I’m afraid of accidents. I’m afraid that soon my back will be so painful I won’t be able to attend to my complicated bathroom needs. I’m afraid that my kidneys are becoming damaged from the waste I cannot clear out of my bladder. I’m afraid that things are worsening to the point that surgery will have to be more extensive than we hope.
On top of all the health fears, I have the fear of letting my children down. Letting my husband down. Being seen by him as a vile and grotesque creature. All these fears, the pain and exhaustion, they are all bubbling up inside me twenty four seven. Each day I’m left waiting feels like a lifetime as my mood plummets to depths I dare not think about. I am constantly walking a tightrope, a thin sliver of hope preventing me from falling apart at any moment. Tears and anguish are never far away at the moment.
So, whilst I am truly desperate for MY surgeon to do the operation, I told the waiting list coordinator I would accept treatment from another surgeon. In fact, my exact words were ‘I’d let anyone do it. As long as they have a scalpel and a will to do it, I’m in!’
That’s actually how I feel now. The desperation to get it done outweighs the need for my doctor to look after me. But, even with my flexibility, it’s not that simple. A surgeon cannot simply be assigned a case and told where to cut. Surgery doesn’t work like that. Each different surgeon has to agree to the merits of the case. They need to read the file and understand why the patient was offered that road of treatment. With my health problems being so rare, that’s not guaranteed for me. I worry my notes could be passed round, with each doctor refusing to do the surgery. In the meantime my surgery date with the doctor I want is getting further and further away.
So I wait. I wait and I worry. I wait and I cry. I wait and I grit my teeth and attempt to cope with the pain.
Such is life on the waiting list.