A woman stands behind pages of a document showing an X where a signature is needed.

Signing My Life Away, Or Saving It?

Surgery day was approaching. On October 31st, 2017, I was admitted to the Royal Infirmary in Glasgow, Scotland, for my total pelvic exenteration surgery scheduled for the next day.

Confirmation only arrived a day earlier, following the PET scan results, that the surgery could go ahead. The scan confirmed the cancer (thankfully) was still contained within the pelvic area, so my medical team could move forward with the planned surgery.

Planning for a rough day

The arrival time had been arranged. I knew a rough plan for the day, but as always in hospitals, timings are always loose and subject to change.

I knew I would see an anesthesiologist to talk through the plans for pain control, prepped before surgery and in place post-surgery. I knew I would see the stoma nurse for the last position check. I would see the various doctors involved in my surgery. I also knew, at some point in the day, it was the big one. Signing on the dotted line.

That "talk" is tough

Nothing can truly prepare you for that "talk," especially when the surgery is so invasive and lengthy.

The day didn't start well, with an ambulance driver telling my husband to move from the drop-off point in the hospital. He had to drop me off quickly as I needed to use the restroom urgently. At this time, I was wearing adult diapers due to the fistula and its effects. Moving his car resulted in him getting a parking ticket. I was so angry, and it was the last thing we needed that day.

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Getting the details of surgery

When I got to the ward, my lead consultant appeared an hour later.

A week early, my other key consultant had sat with me and explained the detail of the surgery. This discussion hadn't come earlier as, quite honestly, I knew there was more than a slight chance that the surgery would not go ahead if there had been any further spread outside of my pelvis. Although, of course, no one would tell me this directly.

So, my lead consultant sat down with the clinical specialist nurse by his side. He explained to me how the larger medical team was ready to proceed with the surgery tomorrow morning. He also told me I could decide if I didn't want to go ahead at any point.

Signing off on invasive surgery

This in itself was scary. Should I be even more worried than I already was? I was already petrified of the surgery I was about to face and what life would be like on the other side if I was fortunate enough to pull through the surgery. That was a short dialogue. He started by laying out the alternatives to the surgery.

In summary, the only choice was palliative care, and the options for that were nonexistent in terms of treatment. Pain control would be what was left.

There wasn't really a choice. This was the end of the road. I was so fortunate that my only option, "the big surgery," could go ahead.

Risk after risk

He was, for sure, a "details man." Something I must say I am so grateful for. However, at that moment, all I could hear was risk after risk of what could go wrong with percentages of a chance of this and that happening. He kept turning the page. It felt endless.

Then came the new bit. I don't think I had heard the information before, or at least I hadn't remembered if I had.
I heard the words "skin graft" and "taking skin from my leg." My head began to spin.

I looked at my husband and could see he, too, was taken aback and in shock. It seemed like we had both, in many ways, prepared ourselves the best we could for what lay ahead, but this was like another level of invasion.

It wasn't guaranteed it would be needed. Once they opened me up, it depended on how much forward and back they had to go to remove everything and whether or not a flap would be needed.

Overcoming the worse-case scenarios

Eventually, after what seemed like hours, but I think it was about 30 minutes of worse-case scenarios being described, he stopped talking. He asked if I had any questions. I said I didn't. I knew this was it. The moment had come.

I was passed the pen and paper with a cross for my signature and asked to read and sign. I didn't have much capacity to take much in, so I flicked through the pages and quickly signed the document consenting to the surgery. That was it. Was I signing my life away, or was I saving it?

Thankfully the surgery was successful, and I have the good fortune of being here years later and being able to share my experiences with you.

Have you been considering invasive bladder cancer surgery? Share your experience in the comments below, or share your story and help others feel less alone.

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