So said Dorothy in the Wizard of Oz, and yes she was right. I’ve now been home 6 days.
I awoke last Monday 8/5/17 expecting to be in hospital a few more days at least because of the recent fever. But I felt OK and the Sister seemed to be on a mission to discharge people and I was on her hit list. The doctors came round accompanied by the said Sister and we discussed how I was doing. My blood tests were ok, the fistula was doing what they do, there was no real reason to keep me in hospital. The Registrar seemed a little reluctant to leave me go but Sister was having none of it. It was decided the central line would be removed asap and I could go home later in the afternoon. They arrived shortly after with their kit to remove the line, I’ve had this done before and it’s not the best experience, but anyone messing with your jugular vein isn’t exactly going to be a pleasant experience. The Registrar ( 6ft 6′ in both directions, one very scary looking man) administered lots of local anaesthetic which stung like mad. After what seemed like a nano second proceeded to stick needles in me to check of I could feel the sharpness. I could 😖. He waited a little longer and it still felt mildly sharp but he seemed to be getting impatient so I didn’t want to upset him seeing as he had my life in his very large podgy hands. He started cutting and I could feel the blood run down my side. My curling toes alerted them to the fact I was very tense and they suggested gas and air would probably help. I was soon deeply inhaling the laughing gas which does have a calming effect and made the pushing, prodding and then sewing slightly more bearable. Once the procedure was over I had to lie still for an hour whilst they periodically checked for bleeding. Anxiety kicked in as I hoped he hadn’t made any mistakes and accidentally severed my jugular, always a drama Queen but I now know how easy it is to die.
The stoma nurse came and made me look at the fistula and change the bag myself. I’ve had a stoma for over 30 years and it’s never ever bothered me, this is different. This is wrong, alien, and should never have happened, I hate it. Nevertheless I’m stuck with it and so I changed the bag, it didn’t look too bad today. I left the ward at 4 o clock and arrived home about 6 feeling nervous and exhausted. We unpacked my bags and tried to find homes for all my bits and pieces and I went to bed, scared to move as I was in pain and pain frightens me.
The week passed with visits from friends, family and District nurses. Stephen is so desperate for me to be well he watches me constantly for signs of improvement. The thing is with a fistula it quite often gets worse as things settle. I had a very up and down week, some nights I managed to stay up until 11pm, others I was in bed by 9pm. I’m not ready to go anywhere but a visit from my neighbour was very welcone. My friend Ann also came to see me – Ann has had some experience of serious illness in her family so knows the immeasurable pressures it puts on everyone. We talked about me getting a second opinion but it’s so difficult to know what to do for the best. Maybe at the moment it’s best to do nothing and see how things go.
My consultant phoned the day after I got home. I’d just come out of the shower, and was braving another look at the demon in my belly. I told him on the phone how devastated I was at the outcome and how I’m actually worse than before. He made the usual noises about ‘early days’ and ‘doing fine’ but it all still hurts so much. So many questions unanswered. But some of my friends say -this is how it is, no point looking back, no point looking forward, just deal with the now. Good advice but very hard when everyday I wake up feeling slightly battered and a hole in my abdomen that feels like ‘The Sword of Damocles’ hanging over me. It has a mind of its own and is very unpredictable. It is keeping me well yet could kill me just as easily. A fistula directs the bowel contents to a safe place but if it stops working and the bowel contents leaks inside, I will become very sick very quickly so as much as I hate it, at the moment I need it.