Steve's story

Patient Stories

10 Jan 2023

Here’s Steve’s Sunday story. He’s experienced LOROS via his wife’s cancer journey and our bereavement support and hopes sharing his experiences will help others to reach out when they need help.

“In November 2017, my wife Sharon went to the doctor. She felt cold and breathless and the doctor thought she might have a heart murmur. But her bloods indicated she was low in both platelets and white and red blood cells and in February 2018 it was confirmed as aplastic anemia. She had some treatment but then in April 2018 she contracted sepsis, and got very sick, very quickly. In hospital I thought I was watching her die.

She didn’t thankfully and she later had a stem cell transplant in August which went well and gave her another three years of life. She was going in to hospital on a monthly basis, always well dressed and wearing make-up, and people would say ‘who’s the ill one here?!’

Then in 2021, cysts started to appear on her body, and we prepared ourselves for a cancer diagnosis. Sharon was a fighter. She never complained and was always positive. We were a team and I was side by side with her no matter what. So when she went to Glenfield Hospital to get her diagnosis but due to COVID had to go alone, I found that beyond cruel. Incurable metastatic breast cancer. She was told she was dying, alone.

She started on chemo but stopped in the September, the cancer was very aggressive. I was caring for her and it was challenging: what food she liked today, she didn’t like tomorrow. She was a big fan of Baxter’s soups.

We told the family that Sharon wanted to die at home and LOROS supported us. We moved a huge hospital bed into our bedroom. She was visited twice a day by LOROS nurses and they always left her feeling better, with a slight smile on her face. We called the LOROS nurses angels. They always left me smiling too, making jokes to ease the pain I was going through.

Sharon was always brilliant with birthdays, and one day she told me to go out and get my grandson Lewis a present. She suggested getting him some clothes as he was a teenager approaching his 14th birthday, so I bought him a Levi’s denim jacket. When she saw it she cried. “I wanted to see Lewis grow up”, she sobbed. “I always thought we’d grow old together.” So did I.

Sharon died at home, surrounded by family, looking at old photos. My daughter Holly suddenly said: ‘Mum’s stopped breathing.’ Holly and my son Elliot made up her face so she looked perfect, like herself again. They knew she wanted that.

Her funeral was a complete celebration of her life. She always wanted to have a go on a motorbike, so we brought her coffin in on the sidecar of a Harley Davison motorbike. We drove into Gilrose cemetery playing Dolly Parton. She’d led a full and rich life. It was a beautiful ceremony. Typical Sharon – she knew how to make an entrance and exit.

After my son found out about it, I had some counselling from LOROS. I went to a group session and to start with I was just in pieces. 

I wasn’t sure what to expect but I found everybody welcoming and encouraging. I related what we’d gone through, the traumas etc and I would break down but people didn’t make you feel guilty.

I remember bringing it up, the guilt I felt that I couldn’t do more for Sharon. I still feel that guilt. What did I miss, what could I have done, what did I not see? And it turned out that everyone in the group felt guilt, but nobody had spoken of it. We all needed to get that guilt out of us.

You get out of it what you put into it. I talk a lot because I want to get it out of myself. And I want to help others do the same.

I’ve made the garden a celebration of Sharon. Other people have said ‘oh I can’t touch the garden because it’s my husband’s’. But I want to touch it because it reminds me of Sharon.

The people in the groups, if you can express yourself and know that nobody is being judgemental. They are in the group because they’ve been there. It’s a journey I don’t wish on anybody. I never came away without feeling totally exhausted because you put so much into the hour or so and relive it and listening to others.

I’ve found now that, thanks to this counselling, I have moved forward. There is a way, and Sharon would be happy for me.

I’ve started working at the local school, helping the students with reading. I used to do it when Sharon was first ill. I find that a huge solace.

I still have times when I’ll sit in the garden and sob my heart out. It will never go. But I’m managing to move forward. Friends are so important. Hearing kind voices. I value that so highly.

I’m not currently going to the bereavement group. I don’t think I need it right now. But I’m not silly enough to think it can’t come back to get you. The little pack of tissues I found a few weeks ago, that broke my heart. I still can’t look in her handbag. It’s the little things.

Sharon is always with me, in my heart. She’s so loved and grief is love.

Without LOROS I don’t know where I’d be. The grief gnaws at you. Sharon was our boss, she was our leader. We’ve lost our figure head but as a family we’ve found a new life in our selves and knowing we have to move forward together. Grief is love. The stronger the love, the more the grief. That is so true.”

 

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