Losing someone close to you after a stem cell transplant can be devastating. Although it’s a challenging treatment, there is often a lot of hope that it will give a long-term remission. Sadly, despite the best efforts of everyone involved, it’s not always successful.
At Anthony Nolan we’ve been working with people who have lost someone close to them after a stem cell transplant. This is so we can develop our new booklet and web section ‘Bereavement & Stem Cell Transplant’. It includes their honest advice about what has helped them (and what hasn’t) plus information on where to go for further help and support.
Darren spoke to Hayley, our Lead Nurse, about his mum, Maria. She died in April 2015, two years after she had her stem cell transplant.
Thank you for talking to us about this, Darren. Please can you tell us what happened to your mum?
Two years after Mum had her stem cell transplant for leukaemia, she had a relapse. The original disease had returned and at that time we knew there were no treatment options left for her. Mum died in hospital two weeks later.
That sounds like an incredibly tough time. How did you feel, and were you offered any support?
I come from a big Italian family, and Mum and I lived in the same house in Swindon, Wiltshire. But in the last week leading up to her death, I didn’t leave the hospital. I just wanted to be there with her.
In a way I felt kind of relieved when Mum died, as I felt she was suffering at the end. We all felt like that. It was hard to watch.
The support we had was good at the beginning. You can be offered so much support, it’s almost overwhelming. Then it slows down as people get back to normal life. But for me there is still a big piece of ‘normal life’ missing.
As a family we were initially given leaflets and support from Mum’s nurse, which was helpful. But quite soon afterwards there was nothing.
I found the practical side of things particularly hard to deal with. It was difficult to make arrangements for the funeral and to deal with legal matters so soon after Mum had died. Thankfully everyone in the family helped with that. Their support was essential at that time.
Were you offered any counselling after your mum died?
No counselling was offered to us by the hospital, and to be honest at the time none of us felt we wanted it.
But later when I was given the chance to have counselling through my work, I said yes. I’ve now been attending sessions for the past 18 months. At the time I didn’t think I needed it but actually I did.
How do you now feel about your mum’s transplant?
I’m glad Mum had the transplant. It gave her two extra years with family and enabled her to meet her grandchildren. Even though Mum has died, if I could I would like to thank her stem cell donor for giving her that extra time.
How have things been since losing your mum?
I’ve found it difficult to move out or sell the house I shared with Mum. I’ve now bought a new house and it’s nearly ready but I’m not sure how I feel about leaving this house. It’s full of memories and it’s nice for her grandchildren as a way of knowing their ‘nonna’.
Sometimes I feel like my life is on hold. Christmas and anniversaries are the times I miss Mum the most – I want to go to bed in December and wake up in January! It's often hard to navigate through the sadness, it becomes very consuming, but you just have to keep pushing through. It's important to recognise what you like to do and what makes your life a little bit better.
But I’ve changed old traditions that used to involve Mum and replaced them with new ones including her grandchildren. In a way this has helped to still keep Mum’s memory alive.
What else has helped you to deal with your bereavement, and do you have any advice for anyone going through something similar?
Support from the rest of my family was a great help. As I mentioned, I also found counselling useful.
Grief can be daily, especially if you live in the same house as the person who’s died.
Crying is good and helps to release tension. I’m quite spiritual and I also use this as a means to cope. Give yourself time. Grief comes in waves and it is not something that is quantifiable. You can’t expect to suddenly be ‘over it’ after a certain amount of time.
Go easy on yourself. Bereavement really can change you and your family. In a way you have to get to know each other again, especially brothers and sisters. So keep talking to your family and friends about how you feel.
And don’t make any big changes early into your bereavement. Try to keep your life constant and familiar for the first few months.
• Read our Bereavement & Stem Cell Transplant booklet or you can read the web section: anthonynolan.org/bereavement
• Cruse Bereavement Care offers support and advice to anyone after the death of someone close. Their helpline is 0808 808 1677, email: info@cruse.org.uk and website: cruse.org.uk