Getting home!

Friday 24th November

John:

Today was going to be release day - they couldn't spin it out any longer and when Elizabeth, the palliative care nurse, came to see me, I deliberately got out of bed and walked to the window to talk with her and demonstrate I was good to go. During the day, we could see the various bits and pieces getting put in place, including presciptions for medications I would/may need on release - a real pharmacy. We'd also told the hospital that we didn't need transport, and called the kids in to give us a lift to remove one of the potential obstacles - waiting for an ambulance. So at about 6pm, with everything in place, I took the lift down from H North ward to the ground floor and out to the car park, where Amber drove us home. It felt a long way - it was dark and we had to call in to collect another prescription so by the time we got home, about 8pm, I was beat, but I was home! Major accomplishment.

Liz:

We were passing the time waiting for the hospital to finally give us the OK to get away, wandering round the ward in circles, John was dressed properly, washed and shaved. We passed time reading, watching a film and then John put on Jackie Wilson (Your love Keeps Lifting Me) Higher and put his arms round me, and for the first time in a week I felt properly happy, hopeful and found I was smiling a genuine and contented smile.

One of the final steps required was being shown how to change the stoma bag. Lesley-Ann, the colo-rectal nurse specialist came to show me how it was done, and let me do it while she watched. Piece of cake. Then we were given our meds pack. - things we needed straight away, including painkillers, and a big 'just in case' pack of emergency meds that only the district nurse or doctor could administer in an emergency. Scary stuff.

Watching John with the staff on the ward was a surprise - he was the same old John - joking around, teasing/flirting. It was reassuring and humbling - he was seriously ill and still laughing and easy going. Amazing! I got the feeling the staff liked him and felt some kind of genuine affection for him.

Getting home was wonderful - a step back to feeling normal again, some time together in peace, and John was happy to be back. The kick in the nuts was that waiting for us, on the doormat, was a bowel screening kit for John! Scotland have a screening programme for all over 50s. If only we had been able to move 6 or 12 months earlier! But we were treated to our first dispaly of the aurora borealis. It was just a teaser, but the photo below was taken from our driveway.

Saturday 25th November

John:

The first morning home was beautiful, clear skies and a light frost. I was tired but alive and where I wanted to be. I was up early in the morning and wanting to make progress with food but during the day I probably overdid it with some tortilla which 'bunged me up' and gave me some really bad abdominal pain. Morphine didn't shift it, but eventually after some stomach massage it passed. We needed to move forwards with more patience - balancing increased nutritional input with how well my gut was re-learning what it was supposed to be doing. A bump in the road, but it also helped us understand why the hospital wanted to ensure support was in place before allowing me to leave.

Liz:

John is talking it down - his abdomen swelled up again and he asked me to call Heather round for her advice, as a nurse. She was amazing! She looked at the doseage of the morphine and said it was low and he could have more, so managed to contact the out of hours palliative care team and ask if we could up it, which they agreed was ok, and she knew the number of someone who could get in touch with the commmunity nurse as we didn't know the right numbers to call in an out of hours emergency. John was in a lot of pain and threw up the morphine. Luckily the out of hours GP gave us a ring and recommended stomach massage, trying a higher dose of morphine if he could keep it down, and walking round a little, peppermint tea, a laxative and said she would come over as soon as she could.

She called back an hour later before setting off, and thankfully it had all calmed down so we said not to worry about coming for now. But it reminded us that the biggest worry for now was another blockage, as there was no more surgery possible. So, back to more liquid foods like custard, ice cream, yoghurt, peanut butter. His diet was essentially many people's dream - extra cream, extra butter, extra sugar - go wild and get those calories down!

And the days became a new routine of a little work on sorting the house, food little and often, getting in touch with friends and family now that it was easier to talk about things, and stoma care for John. This was not something we thought we would be doing until we were much older and more decrepit! You have a bag of things for the process of changing the stoma bag, which you have to take with you when you go out, just in case - spray to help remove the old bag, replacement bags, scissors to cut the right sized hole in the sticky part of the new bag, wipes to clean the skin, barrier cream to stop the skin from getting sore, disposal bags. The reality of ileostomies is that they get in the way of just putting your arm round your partner, they are unsexy, they make inappropriate noises at any given moment without warning or control, the bags sometimes come loose and you start to smell. But as a mum to two kids, it was nothing I hadn't seen before, and I felt it was a way that I could care for John, and somehow share some of the burden of our new life.

But, these are the things you do for someone you love - whatever they need, and it was the least I could do.