Thank you for sticking with us and keeping reading - it helps to be able to tell the story just once because it makes it easier. And thank you for all the love and prayers and thoughts you are sending - it means the world x
Saturday 18th November
Liz:
As John was in a private room over night I was able to stay with him, albeit in a very uncomfortable reclining chair. The staff were lovely, offering me tea, toast and blankets, and a listening ear, but never once looking at me with pity. And they were all amazing with John - gentle, caring and, most of allI, positive and upbeat. I was never going to get any real sleep though - there were obs every couple of hours, monitors beeping all the time, different bags to be hung, and anticoagulants to be injected through the night. John was also desperate for ice cubes and had to keep rubbing them on his mouth to try and sooth the raging dryness and thirst. I anxiously watched the monitor showing his blood pressure, oxygen saturation and heart rate going haywire due to leads coming loose, and the various warnings flashing on the syringe pump drivers. It was overwhelming. And yet I also watched his pulse pounding in his neck, so strong, his body so warm and so solid - he was still here, and despite all the accoutrements of surgery, he looked so healthy! His body was clearly not ready to give up.
When Mr Alwahid arrived he was lovely with John, despite his difficult task. He explained that the surgery had not gone well - the intention had been to remove the large bowel in its entirety but it had been impossible. There was so much tumour inside his abdomen that everything was stuck together by the growths. He explained that if he had started cutting it would cause more problems that would have 'been impossible to get out of'. He said that he believed that John had had the cancer for a long time, probably a year or more due to the extent of the spread. It is really incredible that he had run the Cardiff half marathon just 5 weeks before, and the London marathon back in April, and had had very few symptoms, certainly not enough to amount to any suspicion of cancer. Mr Alwahid also explained that he had real trouble forming the stoma - it had taken him a few hours just to be able to select a loop of bowel that he could ease close enough to the surface to be able to connect it to the outer skin, and it was under tension. This meant that it was retracting, or pulling back into the body, and he was really worried that it wasn't going to hold, that it would become detached, pull back inside and fail. If this happened it was basically game over - there was nothing more that could be done to help him - it was all riding on a few stitches and a lot of bed rest.
Mr Alwahid then asked me to join him in the relative's room, and I felt my fight or flight reaction flood my body with adrenalin as I followed him acros the corridor. We sat, just he and I, and he told me that the truth was that there were dramatic differences between the two CT scans, taken just 2 weeks apart. The cancer was aggresive. The radiologist had told him before the operation that 'I won't be surprised if you find something really bad'. As I could tell from his face the night before the operation - he had already suspected the worst. I asked him what came next, were there treatment options, and he looked grave and said that if John made a good recovery from the surgery that they 'would advocate strongly for chemo'. I puzzled over his wording for several days afterwards before I worked out what he meant. He reminded me again that it all depended on the stoma beginning to work, and that it was tenuously attached and that he was worried.
And the task of telling everyone began by texting John's boss, Mark, to see when we could talk. Martin and Sarah texted to see how we were so I called them as I knew they would be easy to talk to first, to see whether I could get through it. They were amazing, listening, asking sensitive questions and then steering the conversation to other, happier things, to lift me back up and end the call on a positive note. They were so kind and it helped me prepare for the harder conversations to come - with the girls. Then I spoke to Sue, the vicar, who had just picked up my email and called me immediately. She was also kind and gentle and thoughtful, and I began to realize what amazing people we have in our lives - and this was just the begining! Next was my Mum and Dad, who were as shocked and upset as any parent would be. Then, a call to our solicitor to see if they could prepare us a new 'will' each (a job we had needed to do anyway) but they said we needed Scottish solicitors so it became a job for the following week. Finally, Amber called for news so I couldn't avoid it any longer despite me putting it off and hoping she would be at home, with Will there for support. It turned out that she was at a games tournament but insisted that she wanted the news straight away. It was crushing to have to tell her over the phone, not being there to comfort her, listening to her sob. Her medical background meant that she knew the right questions to ask, and it broke my heart when she asked how long he might have: 5 years or 6 months? The honest answer was: somewhere between the two. All I could do was promise to keep her updated and offer to listen if she wanted to talk, and to suggest that she talk to someone, Will or a friend, and not be alone. Then Charlotte called, and again, she had just arrived with friends for a weekend away and I aksed if she was sure she wanted to do this call straight away, and she agreed. She also cried, and I was struggling to keep my voice level, until her heart-wrenchingly childish question: he is going to be alright though? I tried to say I don't know, but I just couldn't lie and in the end I had to admit that, no, he's not going to be ok. Again, I promised updates when I knew more and that she could call me any time, but I knew that Hugo was with her and would comfort her in my absence. Then, I called John's Dad, on his birthday, to tell him that his youngest son was dying. It was awful - he was so stoic he was almost dismissive, but I knew that this is how he is and that inside it would kill him. Thankfully John's mum has advanced dementia and so will probably never know. And, finally, I called my sister although I knew Mum had already told her the news, so this time it wasn't me having to say the words. The terrible thing about all the calls was that every time I said the words out loud they became a little bit more real, less deniable, more painful.
John slept much of the day, on and off, and I rested the laptop on the bed to be close to him, and tidied up some loose ends for work, mostly so that I wasn't leaving Charlotte with a lot of messy bits that she wasn't up to speed on so soon into her new job at Fox, and to keep busy so that my mind had just a sliver of respite from the fear of what the future held for John, and for me.
John told me I should go home and get a decent night's sleep, and by 4pm I was starting to feel dizzy and groggy. I was exhausted from all that had happened during the day, and I knew I better go soon before I couldn't make the drive. He was surrounded by nurses, but I said to him, if you need anything, if you need me, please call me. And I would be back early the next day in any case. He assured me not to worry - he was going to fight this all the way.
I cried all the way home - I expected we would be lucky to have 6 more months together, months of pain and sickness and morphine - I would probably be a widow by 45.
Sunday 19th November
John:
Saturday night was a bad night and one of the nurses was in the room quite a bit monitoring me. She suggested I put some quiet music on to distract me and it worked to a degree. In the night I had hallucinations about someone I knew being in the ward and there being an argument or fight between patients, wow. In the morning, I was moved back to the side ward with 2 other folks which, although necessary for someone else's benefit, wasn't ideal for me. Liz came and I knew that the synopsis was not good, I could see in her eyes that she knew a little more than she was letting on. We watched a little TV: horse racing, and I joked that having most of the proceeds of the house sale in the current account, me high on morphine and a William Hill App on my phone was probably not a good combination. We'd discussed the kids coming to see us, and planned it for Friday, 6 days away.
Liz:
On the 10am ferry I was due to talk to Mark, John's boss. I was having a bad day today, tearful and over-sensitive, and every time I went to dial Mark the tears started again and I wasn't even sure I could manage a hello. But then he called me anyway so I had to take a deep breath and go for it. He was amazing, explaining that I didn't need to do anything right now, that he would start the ball rolling with reassigning John's responsibilities, letting HR know the situation etc. He was an absolute star, so kind.
I got to the hospital to find John on the shared side ward again, and it seemed that Mr Alwahid had been waiting for me to arrive before coming to talk to John, and he arrived soon after me. He squeezed John's hand as John gave him a smile and a positive update and asked hopefully when he could start chemo - he just wanted to get going as soon as possible as he knew the tumours were still inside and growing, so every day waiting was a day wasted from his point of view. Mr Alwahid told him to focus on resting and getting well but we had to wait until he was recovered from surgery before we could start the next stage.
Another chat with Mr Alwahid in the relative's room and I was fishing for more information. I told him that John's expectation was maybe 12 months and before I finished the sentence he shook his head and said less, a lot less. I knew this, but I needed Mr Alwahid to know that if they said no to chemotherapy it would take away all his hope and this is what I was finding hardest at the moment - keeping John's spirits up, because a positive mindset would be pivotal to a quick recovery and better healing. I was desperate for John not to sink into hopelessness. I had to keep convincing him that he was on an upward trajectory, and every day would mean one of his leads or lines could come out and each day he would feel a little more normal. He was just at the bottom right now and struggling to see the way forward.
The rest of the day was fairly uneventful, although we were now obsesssively watching the stoma bag for any signs of action that might prove it was behaving and was going to work. His room mates were noisy: one was trying to drink too much and then vomiting, complaining about being uncomfortable, and the other was just Italian! It was actually quite fun to listen to his phone calls on speaker from relatives who kept bursting into song in Italian. Because John's throat hurt it meant that he was communicating via text and then I could reply normally, but it made conversations awkward. Mum and Dad popped in to visit for some distraction and to give me chance to go down to the cafe (which became a regular spot for me over this week) to grab something to eat. Mum cheered him up with a story of her Grandma who had also had inoperable bowel cancer. I didn't quite know where the story was going but luckily the happy (sort of) punch line was that she had lived another 11 years and finally died of an aneurysm!
I headed home at 6pm with a list of things he wanted me to bring back with me the following day. We continued to exchange texts through the evening and he sounded ok, positive, reassuring, but urged me to talk to Heather, so I asked if she would go for a little walk with me the following morning before I set off to see him. I didn't want to delay being with him, but if it made him feel better I'd do it for him.
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