Thursday 16th November
Liz:
John has little memory of these days, which is probably a good thing. He was confined to bed, unable to walk round due to the agony, his abdomen swollen huge and tight, unable to eat.
I headed over to the hospital after work, knowing that my Mum and Dad had kindly agreed to come to stay in order to help me unpack and keep an eye on the cats. I knew that if John went in for surgery that he would be in for a while afterwards and that I wouldn't be able to do everything I needed to do and spend time with John due to the 3 hour round trip.
I met Mr Alwahid, the surgeon, when he came to see John that evening. He explained that they had scheduled to operate tomorrow but had no idea what they would find. Having looked at the two CTs, one from 2 weeks ago and one from the night he was admitted to A&E, they could see a lot of inflammation around the bowel, but there were two very specific areas of concern - one at the start of the colon, and one at the end. Therefore the decision was to remove the whole of the large bowel completely and send it all away for testing. These areas were likely what was causing the obstruction in the bowel, and the result of this was that John would wake up with a stoma. This was the first shock - although Mr Alwahid said they might be able to reverse it in time, he couldn't promise anything.
A stoma is a life changing operation, and the ramificatiosn of this didn't hit home until later. It is basically a hole, cut into the abdomen, where the small bowel is brought out and sewn to the outer skin of your abdomen, with a bag fixed over it to collect the waste products of your digestive system. Hideous, inconvenient, but absolutely life saving for John at this point. His life was literally in Mr Alwahid's hands. But, worse than that was the expression on Mr Alwahid's face - I could tell he was worried, and that put me immediately on edge. There was something horribly wrong.
After he had gone and we had a few minutes alone together John told me he was worried he wouldn't wake up. It was heartbreaking to hear him say his 'goodbyes' - he loved me, he has always loved me, and if he didn't come round I had to look after the kids and live my life. I tried to reassure him that everything would be fine - he was going to make it!
I called the girls and broke the news to them but kept it vague - no point upsetting them before we knew anything for sure. They were concerned and asked for updates when we knew more.
I didn't think I could stay overnight at that point, and so I headed home to see Mum and Dad, have the dinner they had kindly cooked me, and try and get my head down ready for work again in the morning. But before sleep I emailed Sue, the vicar from our old church, and asked that she put John's name to the prayer group, in the hope that God might be listening, and then I Googled causes of blockages in the colon to confirm what I already suspected: 60% of blockages are casued by cancer. Not the best odds...
Friday 17th November
Liz:
I struggled through a morning of work whilst waiting for news of surgery start time, and eventually John facetimed me at about 1.30pm to say they were taking him down imminently. He told me again that he loved me, and I told again that he could tell me that again afterwards. My countdown had started - I had been told that the surgery would take around 4-6 hours, followed by 2 hours in recovery, and then he would be moved to HDU (High Dependency) where I could go and see him. I knew I had to leave home at around 5.30pm so I continued with a bit more work as I knew I was behind due to having two days off for the house move.
I arrived at the hospital around 7pm and set up the laptop in the silent foyer and worked for a while. By this point it was just desperately to take my mind off things. By 8pm I was starting to worry as they were supposed to call me when he came out of surgery, and I still hadn't heard anything, which meant they were now at the maximum time they thought it might take to complete. Either they had forgotten, which was good news, or it had been much more complicated than expected.
My friend, Sarah, was texting me for updates and trying to reassure me that they had probably just forgotten to call, and that bowel blockages were more common than I realized, and that it might be something easily sorted. She suggested I just call HDU and ask if he was there yet. So at 8.20pm I Googled the contact number and decided that, seeing as it was available on the internet, that it would be alright to ring them. They told me he had just arrived and I grabbed my stuff and hurried up.
As I had spent many years working in hospitals, I thought he looked ok - or, at least, I wasn't shocked. He was on a side ward with 2 others, sporting an arterial line in his neck, arterial line in his right wrist, cannulas with drips attached to both inside elbows (saline/morphine/antibiotics), catheter, naso-gastric tube, ECG leads and monitor and inflatable compression stockings. All I could touch was his hand, and forehead, which was so upsetting - I wanted so desperately to comfort him, but seemed so inadequate. His throat was sore and mouth swollen from being intubated and his lips were dry and cracked. The nurses said he could wet his mouth with water but was not to swallow too much.
John:
I came round on High Dependency, there was bleeping everywhere and I had a morphine button which gave me a shot anytime I wanted, with a 10 minute lockout, and a tube up my nose and down my throat into my stomach (I'd rejected that before the operation!) but it was now essential so that I wasn't sick.
Liz:
I had only been wth John 10 minutes before I was asked to go to the relative's room to speak to one of the surgeons. Ms Brown was a young lady, probably the junior surgeon, who I think said she was in the operating theatre, but not hands on. A nurse also perched on the table. Here it comes - that's what I thought - here it comes. She told me gently that as the surgery had progressed they had found tumours in the large and small bowel (stage 1) which had grown through to the peritoneum (lining of the abdominal cavity) (stage 2) ... and I was thinking STOP, please stop, but no, they had also found tumours in the liver as well. And there it was: a full house - stage 4 cancer. So far I had managed to remain stoic - it was pretty much what I had expected, plus a bit more. But she continued, saying it 'wasn't curative' and that was when I couldn't hold it in anymore and a tissue was passed my way. I knew I would be going back out to John in a minute and I didn't want him to see the smeared make up and red eyes. They suggested it would be better if I didn't tell him until the morning, give him a night to recover and let the staff do it when they had some more experienced support on hand.
But I couldn't hide it from John. I went back to him still clutching the stupid tissue and he asked me what they had said. I tried to defer it to tomorrow but when he asked me outright whether it was cancer I couldn't lie. I didn't tell him the full extent - this second shock in 24 hours was enough for now.
John:
Over the last few days, although language used by various folks was new, different and perhaps deliberately ambiguous to help the situation sink in, I knew what was going on. The bowel blockage wasn't a simple issue, it was a symptom of something much bigger and developed. What had I done wrong? When had it started?
Liz:
Although they had told me that technically it was open visiting hours and they couldn't kick me out, really it was a bit unorthodox to stay overnight when he was in a shared room. How could I leave him having just given him his death sentence? And yet he took the news unblinkingly, and assured me that he was alright. I supposed he was in shock and would be quickly back to sleep due to the morphine and the physical stresses his body had just experienced.
Then, suddenly, they decided they could transfer him to a private room and I was so grateful that I could be with him to make sure he didn't wake up in an emotional tsunami, alone. I tried to be strong for him, that was my job now - to be positive and make sure he stayed strong, so he could recover for whatever came next. But, when he was finally asleep, I sobbed quietly on my own. The 5 year survival rate of stage 4 bowel cancer is just 5%. John's retirement, and all our dreams for our future in Scotland, had just been destroyed.
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