We had booked a trip to Isle of Skye for the end of September but when John's health took a dip we cancelled and decided it would be better spent visiting the girls instead. John was given the all clear to go by Ardgowan Hospice on Wednesday as he was doing so well, and feeling good, and had his chemo on the Thursday. We set off on the Friday night with John still feeling pretty well, and he even took the wheel as far as his Dad's house in Yorkshire, arriving around midnight. It was a long day and a long drive but he seemed on good form.
We had breakfast with John's Dad and chatted, learned about a new addition to the Burkinshaw family and enjoyed an hour together. As we left John told his Dad it would be the last trip we made south, an effective goodbye. It was very emotional, and would be a recurring theme for the weekend.
Next visit was to his Mum in her carehome. My Grandma has always said that everything happens for a reason, and whilst I am yet to understand the reason for John's illness I can see that his Mum's dementia now has a positive side. She is oblvioious to his difficulties and has no idea that he doesn't have long left, and will not have to mourn him. It is a blessing in disguise - I cannot imagine how utterly heartbreaking it must be to lose a child. John told her he loved her even though she no longer recognises him, and another chapter was closed.
We travelled on down to the girls, with John driving again, and still feeling alright. We arrived mid-afternoon at Amber's and John then had a nap while she and I and Mat set about moving the latest two tons of top soil into her raised beds and surroundings to level off the lawn section and make the beds ready for planting. We added her herbs that had been surviving in grow bags and the garden is finally about finished. All she needs to do now is sow her grass or clover seeds and be ready for next year's barbecues and garden parties!
Sunday was spent playing board games with Amber, Charlotte and Mat, with Hugo joining us mid-afternoon as he returned from London. Each game was lovingly inspected (sabotaged) by Tiger - see photo below! We played a variety of games and had a lovely time. John snoozed in the afternoon, being very tired, and then we got a Chinese takeaway for dinner. The amount John can eat has declined since chemo on Thursday and I could see he was finding it hard going.
One of John's work colleagues, Caroline, had asked if she and a couple of others could come up to Scotland to visit John, but it coincided with this weekend, and so we met them at the pub instead. Tony, Heather and Fran joined us and even though John was exhausted and struggling the conversation stayed pretty positive, and it means a lot that friends want to see him. So much more important now than at some memorial service later!
Monday morning we had to go into Warwick hospital to get the chemo pump disconnected and flushed and the dressings changed and then we went over to M&S for a coffee and a scone and he seemed ok. Things are always a bit better in the mornings after a half decent sleep. We wandered round the food section and bought John some treats to try and make meals enjoyable: quiche, profiteroles and smoked salmon all went down very well.
We took Charlotte to the garden centre and bought her some plants for her newly paved back garden with raised beds, and I also found some edible flowers for Amber's garden and a bay tree and rasberry canes, which all fit her sustainable theme quite nicely. When we got back to Charlotte's it was tipping it down but she and I braved it out and got everything planted while John had a siesta. We were soaked through and caked in mud by the time we had finished, but pleased with the results. We had also moved some of the inherited potted plants in the beds to bulk them out, and she had already put in some spring bulbs herself as well. Can't wait to see both girls’ gardens when they start to mature a bit.
By the time we came to return to Amber's for the evening John was in a bad way, chronic abdominal pain in waves and struggling to walk easily due to weakness and exhaustion. My ex-colleague Nicki and I had arranged to meet up at the pub in Kenilworth but by the time Monday evening came round John was in bed, afraid of the pain, and had decided he probably wanted to go home the next morning. So Nicki came to Amber's house instead and we chatted about her daughter going off to uni and her job and it was nice to catch up and have a little distraction for me.
On Tuesday I had been due to meet my walking buddy, Nick, in the afternoon but luckily he could bring it forward to the morning and we had an hour's wander at Stoneleigh Park while John chilled in the Farmer's Fayre cafe. I appreciated his candid assessment of things, his gentle humour and wisdom and heartfelt good wishes. We grabbed a coffee and cake all together before heading off north, and home.
Ladyewell Shrine holy well was along the way at a good point to take a break for a stretch, just about 10 minutes off the motorway and so I dived off to find it. We ended up the wrong end of the road with no through way, and so many thanks to the three dog walkers who took the time to explain how to get to the other end of the road about 3 miles away! We called in at the shrine, drank the water and I got a prayer in before setting off again.
Another two hours down the road and we pulled off again, having been able to rearrange a meeting with Richard and Jenny, John's brother and sister-in-law, at The Sally, a lovely pub in Irthington, just 10 minutes off the motorway again. We had fish and chips between us and Richard and Jenny chatted about their new house, new grandchild and the rest of the family, DIY etc. It was a lovely hour and a bit. Another emotional 'goodbye' and we were finally on the tedious home straight, through speed restrictions, roadworks and wide load convoys, while John slept and it got dark and I cried as I drove.
It has become clear that this new chemo drug, Aflibercept, has really knocked John sideways, and he does not want another dose of the same. We are awaiting a call with the oncologist to discuss what happens next, but at the moment John is ready to go - he's done all he can and suffered as much as he is willing. It's been a highly charged few days and will be the last time John is able to make any journey, but we've seen everyone we needed to see. So there is now no pressure to do any more, and it is time for John and me to prepare for as good an end as possible to our amazing journey, quietly, together.
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