This is part three of a six-part series on grief and loss, originally written at New Year to reflect on 2021; part one is available here.
I remember sitting down last year, writing a review of the year that had just passed, inspired by my friend Jo Gilks who tweets as @Jofreerangeplay. It felt like we’d had a tough year because we had.
But there were glimmers of hope, I was back working in schools face to face again, being a school improvement adviser. I had 44 new schools on my caseload, 44 new sets of staff to get to know. I was about to start writing the Oxford International Curriculum. University was on the horizon for our eldest; our youngest was enjoying school and heading into her GCSE year. Pete’s pottery was really taking off. There were exciting things to look forward to, and it felt good to look back and reflect on the year that had just passed and what I’d learned that I intended to take forward into 2021.
Hokey-cokey of 2021
A few days after writing the blog children were back in school for just a day, and then the schools closed their doors to everyone but key worker children. Thus began the hokey-cokey of 2021. There was confusion about key workers, about early years foundation stage and whether maintained nursery and YR classes were open or not. There was confusion about inspections, curriculum, expectations, testing, guidance. One word could sum up the government approach to education for 2021 and that would be ‘muddled’. But that’s a discussion for a different day.
Because this blog is a reflection of the year from a personal, rather than a professional perspective, although at times it can be difficult to separate the two.
In the early spring we once again had to adapt to working from home. Pete and I built a kiln shed in the back garden (well, I stood around holding things and generally moaning about the cold while Pete screwed bits of metal together around me). We sacrificed the dining room table to pottery and the kitchen table to home schooling. I went back to online school improvement, which is challenging with schools you know well, but really challenging with schools you’ve yet to set foot in.
But we seemed to be rumbling along ok. Pete thought he might have pulled a muscle moving a gas bottle that he needed for raku firing, and seemed to be having some muscular pain. The doctor, in an online consultation, advised painkillers and rest. But the pain didn’t seem to be getting any better.
Reflecting on 2021 with Pete
In March, the day before his 55th birthday, Pete had his booster jab and felt really unwell for a few days. We put it down to the jab, but the pain was still there. He’d had a couple of online consultations with the GP but they felt it was a good idea to see him in person, a visit that would lead to him being sent to hospital straight away for a raft of tests. All came back clear, and we were relieved to be told that he was, “totally unremarkable”.
On 1 April I turned 50 and five days later we celebrated 25 years of marriage together. A couple of weeks later we celebrated 32 years as a couple. All major milestones that we’d planned to celebrate in a different way, all of which were celebrated at home, quietly with family because we were still in lockdown.
By May, Pete’s pain wasn’t getting any better and he was losing weight, quite noticeably, and he seemed to be incredibly tired. A visit to the doctor for some blood tests led to him being called back quickly and given an emergency appointment at the hospital. A discussion with the gastrointestinal specialist was followed by a scan and a wait. A few days later in early June, just before we were due to go to the hospital to receive the scan results, our GP called us to tell us that he had read the letter from the hospital and there was a mass on Pete’s pancreas.
We both knew that this wasn’t good news. We both know enough about pancreatic cancer to know that the survival rate is one of the worst there is. But no one had said cancer yet, so we hoped against hope. We made our way to the hospital an hour later to be told that yes, they were pretty sure it was cancer, and the mass was large, had already spread, and was in other areas of Pete’s body, the stomach, and peritoneum, which meant that it was inoperable. They needed to do a biopsy to be sure but it looked highly likely that we didn’t have much longer than a few months left together.
We went home and thought about how to tell people; how to tell our girls, Pete’s parents, my mum, our sisters, our friends. In the end, we told a small group of people and then I wrote a blog about it, with Pete’s permission, because telling people is really, really hard.
The jigsaw pieces fell into place
What happened in the next few weeks was a bit of a blur. Pete was very poorly indeed. All the pieces of the jigsaw suddenly fell into place: the weight loss, the fatigue (we had wondered if he’d had Covid and not known), the pain. How could we not have realised? Hindsight is a wonderful thing.
Then the questions from friends and family. “If we’d not been in a lockdown would it have been spotted sooner?” Who knows. He had a raft of tests in March and they all came back clear, the specialist consultant and the oncologist both used the words, “aggressive and advanced” so the chances are even if it had been spotted sooner, it’s unlikely it would have made any difference. It’s easy to torture yourself and dwell on such questions but it does no one any good and it wastes the precious time you have left. So we chose not to dwell on ‘what ifs’.
We got on with the business of trying to live, albeit restricted by Covid and Pete’s pain and energy levels. We managed to go on holiday, thanks to the generosity of a friend in Cornwall who let us use her home while she was away. We had a nice time but had to come home early, as Pete was too unwell and in a lot of pain and he didn’t want to end up in hospital hundreds of miles from home.
Care at Sheffield’s Weston Park
We are very lucky to live near the amazing Weston Park hospital in Sheffield. Our first meeting with the oncologist was via a phone call. She said that although Pete’s cancer was aggressive and advanced and that time was very short indeed, more than likely weeks, she thought that palliative chemotherapy was worth trying. It could reduce his pain, give him energy, and possibly a bit more time.
So off we went. Even during the first face-to-face consultation Pete had to lie down and take morphine because he was in too much pain, and I worried that they’d say he wasn’t well enough to go ahead. But go ahead we did.
It hasn’t been an easy road. Emergency hospital admissions, late-night calls to the emergency medication teams who came out to administer drugs when oral morphine and fentanyl patches couldn’t touch the pain, scans, blood tests, learning to clean and flush picc lines, palliative care visits from the hospice, weekly district nurse calls, visits from occupational therapists, physios, counsellors, almost daily calls to the pharmacist and prescription teams at times, funeral planning, difficult conversations … it’s been quite a journey.
Chemotherapy is hard. You know that because we all know people who have been through it, but living with someone and caring for someone going through it gives a new perspective. Through it all Pete has shown courage, dignity, resilience, and patience. It’s difficult to live a normal life with a terminal diagnosis hanging over you, with so many things which are alien to you suddenly becoming the norm, but we have tried our hardest to make the best of every day, to look for the good, to make the most of whatever time we have left together. We’ve cried almost every day, but we’ve also laughed a lot.
Celebrating the positives
Through it all we have had the amazing support of Ashgate Hospice, Weston Park hospital, the GP and pharmacy, and the district and emergency nursing team, our families, neighbours, colleagues, and an amazing bunch of friends. As I reflect on the last year the thing I’ve learned that I’ll take forward into 2022 and for the rest of my life I hope, is that no act of kindness, however, small goes unnoticed. It would be impossible to list all the acts of kindness we’ve received but every single one of them has made the most difficult year of our lives more bearable. We are truly grateful.
It’s very easy to get sucked into negativity, we’re all guilty of it, I know I am, but there’s a lot to be positive about. It would be easy to feel negative about going into 2022 knowing that it is highly likely to be the last New Years Eve we spend together, but instead, we’re focusing on the fact that we’ve had a Christmas together that only a few short weeks ago we thought we’d never have. It would be easy to focus on what we’ve lost: Pete watching our girls grow up, possibly grandchildren, our retirement together. Instead we’re focusing on the fact that we’ve spent more than 32 happy years together, and the girls have had the best dad they could wish for.
We’ve done lots of amazing things, had jobs we loved and we’ve made a difference to people as a family through our chosen careers. Not everyone gets to say that. We’ve been given precious time to say all the things we need to say, to tell each other how proud we are of one another, and to let the people we love know that they matter. I don’t think we’ve ever felt as loved as we have over the last six months.
We don’t know how much longer we have together, and there’s a lot of uncertainty about a lot of things, but we’ll cross those bridges when we come to them. For now, we’re just enjoying each other’s company and life’s small pleasures. Something we’ve always done as a family is to try to appreciate small things, time spent together with friends and family, games, films, chat, days out, nature, works of art, music. This attitude, taking each day as it comes and going with the flow, and the support of so many inspiring friends, has kept us going. We don’t take any of this for granted. We don’t really go for material stuff or status, but I think we have realised this year that we feel like the richest family in the world.
Whatever you’re doing when the clock strikes midnight, I hope you can find some good in the year that’s gone, no matter how tough it’s been, and that you have something to look forward to in 2022. I hope you make the most of the precious time you’re given. Happy New Year.
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