An imbalance of treatment and time

Originally published December 2019

It is five years today since my sister in law Eve died. I don’t like using the ‘in law’ bit, although accurate, it undermines the closeness of our relationship, she was my sister and I was hers. I wrote my first blog ‘Views of an Inside Care Coordinator’ a few weeks after she died https://wordpress.com/stats/post/13/emmajhodges.wordpress.com and it’s as relevant today as it was then.

I saw a photo the other day on my notice board at work, it’s of my son in a Christmas top sitting on my knee at my mother in law’s house. In the background the Christmas cards are mixed with sympathy cards. I see that photo every day, but for some reason last week it hit me hard. We often say there is no timescale on grief and I feel at this five year anniversary, that perhaps my denial is turning into something else, maybe I’m ready to start grieving. My daughter had support from a children’s bereavement service as she was struggling. She was only very little when Eve died, but she felt there was this big hole in the family. I couldn’t help her as I wasn’t ready and she didn’t want to make me cry. Her bereavement support worker looked at me and said I needed to talk too – she gave me a ‘look’ that was clear in its meaning! I ignored it of course, I don’t want to talk about it.

Today at this five year point, I want to write, I want to rage against the lack of time we had. I want to rage against the focus on appointments and treatments that were always I think, going to be futile. The closest we got to the reality was when her consultant said we needed this particular Oncology Professor and a miracle. Maybe this was the coded message that said her time was short. However of course we focused on getting to the appointment. We’d originally been told her cancer was ‘highly treatable’, which was clearly not the case but we’d held on to that. We focused on treatment not time. Treatment of course was going to create time. I wish we’d done more nice things together in those last few weeks. I wish I’d been able to accurately say what was going on to her family so her brother could have had the choice whether to come home from overseas to spend time with her, rather than it being too late and arriving for her funeral.

I wonder what the difference would have been if we’d all known she was highly likely not to recover. What different choices would we have made during the seven weeks from her diagnosis to her death? Would we have balanced treatment and time better?

Working at a hospice I know how the health care system is trying to be better at identification, better at care planning, better at earlier diagnosis and better at earlier access to palliative care. However these have been issues ever since I joined the hospice movement ten years ago. Today, I’m really angry that it’s not better. Dame Cicely Saunders said “How people die remains in the memory of those who live on” – I’ve always thought of that quote in relation to the actual dying bit. However thinking of that quote today, it is about more than the very end. It is about the whole process from diagnosis to death. It’s not just how someone dies but about how they live as they head towards the end of their life.

My memories are full of appointments, trying desperately to link the system together to give Eve the very best chance of recovery. Trying to keep family informed and involved, trying to read in between the lines so that I didn’t miss anything and trying to plan for a ‘happy’ Christmas for three young children. I don’t want these to be my memories. I want my memories to be of all the other times, the Christmases, holidays in Scotland, visiting castles, the Halloween party for the children, the shared love of Lord of the Rings and Harry Potter. They are the memories I want. I hope writing this blog moves my grief on a bit. I still feel guilty that I couldn’t save her – my head knows the truth, but my heart hasn’t caught up.

I will continue to advocate for earlier conversations that help balance treatment and time. I will continue to work with the healthcare system to improve care for people who have a palliative disease with a short prognosis or who are facing the end of their life. I will continue to support work with families and communities so that we can help get some sort of balance between community and medicine. Hospices have an opportunity to influence and promote a system that is better. We have to have more honest conversations, we have to give families the time to live, not the burden of appointments and tasks. This isn’t to say that families shouldn’t be involved in care, if they want to be. It’s about still being a wife, husband, daughter, son, brother or sister and this precious relationship not getting side-lined in a fragmented and complicated healthcare system.

I know my experience is not unique. I met someone recently at one of our Light up a Life Services, they also want to write about their experience and I’ve encouraged them to do so, I will do what I can to help them share their voice. It’s going to take all of us to support the scale of change that really makes a difference, we also need to be more open to the sorts of conversations that enable healthcare professionals to engage in the sorts of honest open discussions we need.

I hope that sharing stories will add to a connectedness of experience and understanding that is somehow helpful.

Today, I just needed to write.