17 days until my final wee...

(First Published September 6th 2019)

I like the Princess Royal Hospital. Both our daughters were born there and it’s generally been our first stop for (fortunately infrequent) hospital stuff over the last 21 years. The main corridors have enormous glass panels which give an airy and spacious feel even if it does feel like an oven in the Summer. The original buildings, which date back to 1859, can be seen for miles around as they perch on top of a hill on the outskirts of Haywards Heath. It was originally founded as the Sussex County Lunatic Asylum which could explain why I have felt comfortable there during my recent visits. However, the next part of my adventure takes me further afield.

When I returned home from work on Friday afternoon there was a letter inviting me for an appointment to meet the Urology team at Eastbourne District General Hospital on Monday morning. This is where I will be having my operation.  This was my first visit to the hospital as a customer. Unfortunately it meant having to cancel my work on Monday at the last minute which doesn’t sit well with me but there is no time for me to be rearranging appointments.  The journey takes about 40 minutes when the traffic is behaving itself and there were no issues with parking. The architecture is very different to the Princess Royal Hospital. It reminds me very much of my middle school.  The corridors are proper corridors with less natural light than the Princess Royal and, where there are windows, they sport classic 1970’s aluminium frames. I’m expecting to bump into Mrs Woodwood who will, no doubt, tell me off for something I have or haven't done.

I meet with another surgeon, who will be responsible for ‘building’ my new bladder should this be the route I take, plus a couple of nurses.  We talk at length about the surgery and the two options available and a couple of new facts come to light regarding the neobladder. The procedure uses a larger part of the ileum than the ileal conduit procedure. As, in it’s normal guise, the ileum acts to absorb vitamins and salts released through digestion this can be an issue when it is acting as a bladder and can cause metabolism problems. Also, the potential for having to self catheterise to empty the bladder is much higher than I had first anticipated.

So my decision is made. It’s going to be a bag for me, otherwise known as an ileal conduit. The surgeon asked if I would like to try catheterising myself before I made my final decision. I politely declined. 

Dozens of people with direct experience have given me the pros and cons of each procedure. I have spoken with two surgeons and half a dozen urology nurses plus MacMillan nurses and all of these fine people have finished by saying that the decision is mine and mine alone and what may be right for one is not necessarily right for another. All except one. As I was discussing my concerns regarding the neo bladder and incontinence with the surgeon one of the nurses was shaking her head. She said it was rarely a problem in the long term. When we were alone with her later going through some paperwork she told me that those people giving me advice had probably had their neo bladders done in other hospitals where the quality of the surgery wasn’t as good.  Also, with an ileal conduit I would be signed off more quickly so there would be less after care. Also, if I was to have a neobladder I would see her on a regular basis whereas if I went for the other option I would hardly see her at all.  So there we go.. Either I’m a bit paranoid or I’ve just met a nurse with an agenda. Alice made the point on the way home as we were discussing the day that she was sitting a bit close and was a bit ‘touchy feely.’ On another day, in another life I might have mentioned something to someone but, to be honest, I’ve got cancer and I’m tired so I can’t be bothered. One final bit of information gleaned from Monday is that my operation has been brought forward a week. So Monday 23rd September is now the date. As a result of this I’ve decided that Friday will be my last day of work. If I’m honest I’m finding it difficult now and by the end of eight hours on my feet I’m done in and my back is screaming at me to sit down.

Monday night wasn’t good. I was up five times to use the toilet and it’s during those dark, quiet hours in between that my mind tries it’s best to run roughshod with my emotions. I have had many lovely messages telling me how brave I am and how positive I am being. On this night, my mind tells me that I haven’t done anything brave, I’m not positive, I’m really a bit of a fraud. I feel like a small child and what I really want and need is a big hug from my parents.  But they are both dead and they died of cancer. This can go one of two ways.  I can either get drawn in and have the night from hell or I can return to the present moment, acknowledge the thought, watch it pass and move on to something more positive. I am managing to stay ahead of these human foibles at the moment but am well aware that far tougher battles lie ahead and are waiting to catch me out when my guard is down

On Wednesday I had a telephone appointment with the financial advisers from MacMillan. Sadly, statutory sick pay is all I will be entitled to with possibly some help from tax credits. Here’s to a speedy recovery!

On Thursday it’s back to Eastbourne for my pre op and the whole day was far more positive than Monday. It started off with form filling and a urine sample (one of my specialities!) Stupidly, I had a wee on my way in so had to have multiple cups of water. This quickly produced the desired result but also meant that I was up and down like a yoyo over the next few hours. (My next blog is going to be entitled “Toilets of Purple Zone Level 3 - the good, the bad and the ugly.”) My next port of call was with the consultant anaesthetist. She was wearing a fabulous pair of tight black knee length suede boots and reminded me a little of Connie Fisher from Casualty (the popular BBC drama, not the place on the first floor.)  We chatted for about 30 minutes and there were no surprises. Then it was height, weight, blood pressure and blood sample.  More paperwork was followed by a meeting with the nurse who would look after my post operative recovery. She anticipated that following the operation I would be in intensive care for two days and then on the ward for a further five days. She talked us through all aspects of my stay and gave us a tour of the Intensive Care Unit and the Ward I would be on, introducing us to other staff members on the way. After a light lunch consisting of coffee, hula hoops and chocolate covered flap-jack it was time for an ECG. Nothing beeped and there were no flashing red lights so we were allowed to go home.  It all seems very real and very close now but everyone we met with today couldn’t have done more to put us at ease.

Today has been my last day of work. It's a little scary as once this invoice goes in there is nothing more until I'm fit enough to don my whites again. I think that having the operation brought forward is a blessing in disguise. It gives me less time to potentially turn into a raving lunatic, less time to whinge about my back and less time for cell division in my bladder!