Leigh’s Journey With Bladder Cancer

Radical Cystectomy Part 1:

The operation was scheduled on September 14th and two days prior to this I was admitted for pre-op tests which included blood samples and a few x-rays of my chest. All of which were necessary to ensure I was in good health for this major surgery.

I was very luckily allocated a single room with shower and toilet facilities, a lottery I am told in Holland.

On the second day of admission I literally spent the whole day visiting the toilet as I had to cleanse my bowels prior to surgery the following morning. They gave me a lemon tasting drink and I had to drink three litres of this fluid to ensure my bowels were cleaned. Even the nurse wanted to see my last bowel movement to ensure that it was clear and clean. I guess this is very important as they were going to be cutting out a good meter of small intestine to make my new bladder.

The stoma nurse made a visit today and placed a dot on my lower abdomen right of my navel in the event the surgeons are unable to construct a neo bladder.

I did not sleep very well this night before the big op with all the positive and negative thoughts fighting together in my mind. I spent most of my time writing cards to loved ones just in case of worse case scenarios. Strange things enter your mind before having any surgery. The usually worry of am I going to wake up after major surgery and a long general anaesthetic praying on my mind.      

I did manage to get a few hours sleep after all and I was awoken with my alarm at 06:00 and I jumped into the shower and started to shave my torso as requested by the nurse the night before. When I came out of the shower room my bed was made up with fresh bedding and waiting for me was a backless green gown and a pair of stockings to be worn as a protection against thrombosis. In a tiny plastic cup next to my bed was a tablet to calm my nerves before the operation. It literally took a few minutes before I felt the medication doing its job. I think not eating for two days also helped in this process…

So hear I am all shaved and fruity clean externally and internally waiting patiently for my surgery. It was not long before they came and wheeled me down to the theatre. Within minutes of arriving I was in a deep anaesthetic sleep.  

Eight and a half hours of surgery later I was wheeled into a high dependency ward for observation. I was attached to many machines checking the usual body rhythms. I was also on a breathing machine which was a great surprise to me later.

When I finally waked I remember being told that all went well and I had received the neo bladder. I felt no pain although I did not try to move too much because I was aware that I was attached to various machines and tubes and bags.

My first night in this high dependency ward went very well. My blood pressure was high and as soon as it lowered to near normal levels I could be taken back to the Urology ward. A good night sleep was not an option this evening as the noise from the machines is just so noisy and irritating. So I spent the evening watching the TV and staff and falling in and out of sleep.

My second day on this ward was very short as I was to be moved back to Urology….just enough time for Diane the wonderful nurse to clean me up a bit and shave me. It was impossible at this point to do this myself as so weak and bedridden.

This was the first opportunity I had to see the wound and tubes coming out of my body. I had two tubes in my right nostril going into my stomach. One for sucking out stomach acid and one that would later feed me. I had a tube about an inch thick coming out of my abdomen left side which was a wound drain. Also on my left side just under the wound drain I had two tiny tubes leading into a bag which were the stents from my kidneys.  Between my belly button and pubic line I had a catheter leading from the top of my new bladder and I also had a regular catheter from my penis. A central line was placed in my neck on the left side and a stapled scar line two inches above my belly button to literally a few millimetres from my penis.

So I am now in my room on the Urology ward and getting over the shock of looking like Frankenstein. I am told that all is going well although I do feel more pain today than yesterday. My pain medication was delivered constantly through my back with what I guess is like an epidural.

The pain was increasing gradually and the nurse called for a member of staff from anaesthetics to come up and see me. He placed cold sponges on my torso which alerted him of the areas that were not treated affectively by the pain medication. Basically my whole left side was not benefiting and I was in great pain for a while. I received a morphine shot until they could sort the problem out.

Due to problems with the needle in my back they resorted to a morphine pump which I could use myself. This worked very well in the beginning but by the third day I was hallucinating very badly and they had to change the morphine to a different type. The hallucinations were mostly bad at night when I was alone and sometimes very scary. My doctor could not confirm if it was the medication or lack of food that was causing the hallucinations.

Everything continued as normal around me and I was allowed to sit up in bed and dangle my feet over the edge. Of course I wanted to take this further and asked if I could stand. This went very well although exhausting and as soon as my head hit the pillow I was sleeping.

This operation really does take a lot out of you and I am a person that is very independent and I had to learn very quickly to give control over to my care givers. During the times the nurses cleaned me I too would take an active role in assisting them and I noticed daily I could do more and more.

I was warned that the 4th day is the hurdle to get over and for me this was so true. Management of the pain medications had its hiccups and eventually on the fourth day I refused the morphine and was using only paracetamol and anti inflammatory and the pain was bearable. The hallucinations were far worse for me which stopped soon after stopping the morphine.

Also on this fourth day after surgery they tried to give me a liquid feed in my nasal tube but after a few hours it was rejected by my body and came straight out of the other stomach tube. My intestines were just not ready for any food or drink yet.

It is so very hard when you have a great thirst and the only option was a tiny sip of water to wet your mouth or the odd ice cube which was always heaven on earth. Something so simple can give so much pleasure and my lip balm helped with dry lips.  

The battle goes on….


Leigh Author