Emily’s husband Simon was diagnosed with a fast-growing brain tumour in January last year at the age of 52. After surgery, chemotherapy and radiotherapy, Simon came to stay in our In-Patient Unit in November for the last 11 days of his life.
Si was a true gentleman and the life and soul of the party. Really the best husband. He was always very loving. We did everything together, and used to say we were a good team.
We met in 2017 and within two years we’d moved in together and blended our families, as we each have two daughters. We got married in 2020 – a few weeks before the COVID-19 lockdown started.
A bad headache
Si was so healthy that he never even took paracetamol. Then, one night in January last year, he woke up all of a sudden with a really bad headache. He said he could smell and taste something foul. I was so worried. After having scans at Milton Keynes University Hospital he was diagnosed with a particularly aggressive type of brain tumour. We were told his strong sense of smell and taste were signs that he’d been having seizures.
“I spent a year being frightened of his illness.”
Apart from an operation and one short stay in hospital, Si was at home the whole time, and doing remarkably well, considering he was dealing with terminal brain cancer. It was very frightening though. I spent a year being frightened of his illness, of what would happen if things went wrong and if I was doing the right thing at the right time.
Deteriorating every day
Si and I hadn’t really discussed his care too far in advance. When he got taken poorly in autumn, another operation was on the cards. So we were thinking we’d get a bit more of the tumour taken out and carry on trying to make our memories and live our best life. Unfortunately that wasn’t to be.
“… his consultants were shocked at how much the tumour had grown.”
He was being violently sick and deteriorating every day. When he was in hospital, I was there from 8am until 8pm, while trying to be a mum and manage everything else too. After another scan, his consultants were shocked at how much the tumour had grown. I asked how long Si had and they said it was a matter of weeks. At that point, I asked about hospice care.
The most precious gift
I’d always known about Willen Hospice, but fortunately, until then I’d never had to use their services. I’d heard such lovely things from anybody who’d had any link to the Hospice. Phrases like ‘the nurses are angels’. I thought, yes, we need and deserve a piece of that to get us through the hardest time.
“… getting to the Hospice relieved all of the pressure of being a carer.”
We had to wait a while for a bed to become available, but getting to the Hospice relieved all of the pressure of being a carer. Suddenly it wasn’t my responsibility to know what was right. He had everything he needed, 24/7.
The Hospice’s In-Patient Unit was just so different to the hospital. To have people not only look after Si, but care for me too, was probably the most precious gift anybody could have given us at that point. He was only there 11 days, but he almost picked up a bit, because he got the right level of care and attention.
Compassionate staff
If I pressed the buzzer in his room because he was in pain, one of the nurses would come to help and ask if the pain medication was enough and offer to come back if he needed anything else. The doctors would kneel next to the bed and talk to me and Si. Even if Si wasn’t really communicating, they still made him part of his care – asking what they could do to help and if we had any questions. Everybody was just so respectful.
“The night before Si died, I didn’t want to leave him.”
The nurses used to come into Si’s room and say they could feel the love. He and I were very, very close. He was my soul mate. The night before Si died, I didn’t want to leave him. A nurse offered to sit with Si if I needed to go to the toilet. She even offered to bring in a commode so I didn’t have to leave the room. The thought that something might happen to him in the seconds I stepped out the room was awful and they gave me the opportunity to make that choice myself – that I didn’t have to if I didn’t want to. It was very touching.
Help to grieve
“I get a comfort from coming back, knowing this was the last place I saw him.”
After Si died, I was told about the Hospice’s recently bereaved drop-in sessions. Initially I was very sceptical. How would I cope with listening to other people’s grief? Also, it was the first time I’d stepped foot in the Hospice after I’d lost Si. When I arrived for the first session, I nearly turned around and drove off because the thought of coming in was too much. But now I get a comfort from coming back, knowing this was the last place I saw him.
I get quite upset in the sessions, which I don’t generally do anywhere else. Having two girls at home, I have to be ‘brave Mum’ most of the time and get on with life. Whereas the sessions give me the opportunity to grieve and meet people that understand. We all talk about things we do that other people might think is a bit weird, like saying hello to your husband’s picture as you walk past or something like that. But it’s such a safe environment and because we have that level of understanding for each other, it’s not weird. So the sessions help to normalise life, rather than thinking you’re going a bit mad.
Vitally important care
“The fact that the Hospice gets very little NHS funding is just crazy to me.”
I worry that Si would have suffered had he not been in the Hospice. The care he received is just so vitally important. The fact that the Hospice gets very little NHS funding is just crazy to me, because the Hospice team do such a special job for people.
Me and all my friends are doing the Midnight Moo this year and I will continue to fundraise for the Hospice because it’s now very close to my heart.
