Kicking off this year’s series of Grief Stories is a piece from Lucy, whose dad Trevor died in 2022 after a long journey with myelofibrosis. Here she talks about the feelings of disorientation that come with grief and loss, and how it has helped to be able to share some of that experience with friends. She also talks about the frustrations that Trevor felt as a result of his long-term condition, what it was like to support him at the end of his life… and what the future holds.

When Alex was looking for people to share their grief stories I said, ‘I would like to try’. I had no idea what I wanted to share or what I should write.

She told me that it was all about opening up conversations about grief, and helping people feel more comfortable in talking about what can be a really difficult subject – one which is, all too often, hidden away. That sharing my grief story would help other people out there know that they aren’t alone.

So, here is my story…

Distressing
Isolating
Sad
Cruel
Overwhelming
Miserable
Bruising
Odd
Baffling
Unnerving
Lonely
Adjusting
Time
Expectations
Debilitating

Discombobulated is the one word I found that resonated most with me following the death of my father in September 2022 aged 83. It still does, along with all those other words I have listed. So many different feelings that emerge, at times seeming to come almost out of nowhere and catching you completely unaware. It’s a very lonely and isolating time, when it feels like there are no rules and no guidance as to what to expect. Possibly because everyone’s experience is so personal, just like it was when the person they are mourning was alive.

My father had managed a condition called myelofibrosis for almost fourteen years, However, it had weakened him so much that a number of falls, including breaking his neck and ribs by falling down the stairs, eventually resulted in him being admitted to hospital.

Ultimately he moved for end of life care to the magnificent Arthur Rank Hospice which he likened to The Ritz on arrival. I have always had immense respect for this place because the care they provide is truly outstanding. They give you, as a family, time.

When this was discussed with the hospital’s palliative care team as a possible next step, Dad exclaimed, “That’s a bit final!” However, we never talked about what this really meant, nor was it ever discussed at any point in the following weeks.

Everything happened quite quickly from this point onwards and we all pulled together to do whatever we needed to do to keep Dad amused, comfortable and as happy as possible, managing day to day. However, each day seemed to last for so long, as I helped him eat and placed cooling flannels on his head - a job that turned out to be ‘my thing’.

I will never forget having to tell him that the first day of the test match was cancelled, which was clearly terrible news for him. The worst part was having to tell him that the reason for this was that the Queen had died. He wasn’t happy about this at all.

He died peacefully on 10th September with us all around him.

Just over one year later and I am still processing what happened and how I feel about it… could I, should I, would I have done anything differently?

The honest answer is I don’t know, but also I don’t think so.

Also… how should I feel? What should I do? How should I behave? How can I talk to other people about it? Will it get any easier? Will I stop bursting into tears at something that reminds me of him, or every time I try to talk about him?

I was advised that all the ‘firsts’ were tricky to get through but, as I settle into the next year of adjustment, I am still processing everything. I still feel discombobulated. If you’re grieving, all I can suggest is that you take small steps and don’t be too hard on yourself. I know that I don’t take my own advice, but try to remember it.

The most important thing to remember is that everyone is different and their reactions, behaviour and process is not the same as your own.

Sadly, other friends have had to deal with their own grief recently, which has enabled me to share more with them about the different stages of feeling. Each person has had a different experience, of course, but that shared experience of grief has meant we’ve been able to empathise strongly with each other. We haven’t needed words, and this support has been something that I have cherished immensely.

My father loved people, and he loved a party. We loved going to the rugby together or to the nearby village pub, as well as many fabulous family holidays, skiing or by the sea. His slightly belated 80th birthday trip to London included his first ever trip to Ronnie Scott’s and the most divine lunch at a Michelin star restaurant. We travelled to South Africa to support my little brother run an Ultra marathon and enjoyed many trips to Twickenham or Wimbledon together.

Many fond memories.

He frustrated me in the last few years as he became weaker, simply telling us “You don’t understand”. Sadly, I do understand now, but it was such a shame he couldn’t vocalise this earlier. While it’s hard to forget these difficult times, I will try to focus instead on all the adventures we shared, or the times we spent talking through various life dilemmas - normally with a glass of something in hand! I will miss our chats.

I miss you Pops and, hope to do you proud in all that I do.