Before Christmas, I shared our family’s of LOROS story, here it is.

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In March 2017 my husband Chris was diagnosed with stage 4 oesophageal cancer. He was 42. Our children, Annie and Hugo, were 10 and 9 at the time but right from the beginning, we always talked to the kids about what was happening. That was really important to me.

We always used words like cancer and chemo so they understood the terms. I wanted to normalise it so they didn’t feel there were questions they couldn’t ask that would upset everyone. We told them about his appointments and the results of tests.

Chris didn’t want to know his prognosis which was hard for me because we couldn’t prepare and he didn’t want to make memories because that was admitting he was dying. So I started to try and shoe horn these things in without him noticing. It was hard. I was trying to plan ahead so I could cushion the kids as much as possible as well as support Chris and deal with the here and now of appointments, tests, treatments.

For a while things looked hopeful. Chris was doing so well on the chemo. He didn’t lose his hair. Everything was stable and the chemo seemed to be working. Then in March 2018, it seemed like things changed. He was due to go in for chemotherapy again in July but we delayed it a bit as we had planned a family holiday in Cornwall. The tumours in his throat were increasing so his doctors decided to give him radiotherapy to shrink them so he could proceed with the chemo. But before that could happen he got so ill. On holiday in Cornwall he didn’t get out of bed the whole time. Looking back, it was obvious the cancer was spreading.

Then Chris had a seizure the day before he was due to start the radiotherapy. Luckily my mum and dad had the kids as it was terrifying. We went to A&E and they scanned his brain and found it was full of tumours. They kept him in and it was then we knew that this was it, he was deteriorating rapidly.

Chris was desperate to go home but I just couldn’t care for him there. He was getting up 12 or 13 times a night to use the toilet and I was worried about him falling, so would get up too. I hadn’t slept for 5 nights. I was also worried about him having another seizure and I really didn’t want the children to see him like that, so I knew that going home wasn’t an option for us. They looked for a bed at LOROS for him, and he agreed to go.

So we came to LOROS. He had a room of his own and a view of the garden. We bought things from home and made it as comfortable as possible. That’s why I love it here so much because it’s not clinical, despite the care. Later that day he said to his brother, ‘this is my room now’, and I was so relieved he felt relaxed here. I’d persuaded him to come to LOROS to give all of us the right choice.

He was still getting up all night so needed someone with him 24 hours a day. We divided up the shifts between me, my sister Sarah and Chris’s brother, Pete. We were here constantly for those two weeks and got to know the amazing staff. They fed us and made us cups of tea all the time.

There was a lot of paperwork to sign, so I could benefit from his pension and the mortgage could be paid off, and the LOROS team helped me so much with that. Because he didn’t want to acknowledge he was dying it was extremely hard so I’m very grateful for their help. When I look back, I was so matter of fact about it. I think it was because he was being cared for so well I could focus on practicalities.

My son Hugo is really squeamish, hates hospitals and finds it all really difficult. But at the hospice, the children could go to the little park nearby or spend time by the pond looking at the fish. The fish became a big part of their lives! They named them all and got to know their personalities – the greedy one, the clever one. Having those opportunities for the children to be distracted allowed them to be part of Chris’s final days, when otherwise it might have been too difficult. The groundsman let them feed the fish and then arranged for a little cup of food to be left when he wasn’t in so they could feed them regularly. Little things like that made their experience less traumatic, and knowing they were okay helped make me okay.

On 23rd August it was Hugo’s birthday and the nurses threw a party for him, decorating Chris’s room with banners and the catering team even made him a birthday cake. It’s their heart, they think of every little thing.

A few days later the nurses told me Chris’s death was close. Annie came to say goodbye. Chris turned his head when he heard her voice. I was sitting holding his hand and Pete, his brother, was too. And he very quietly died.

I cannot say enough about the difference being in LOROS made to our saying goodbye. Quite simply it gave us a window to be a family again. LOROS completely changed what could have been a terrible ending, and we now have such fond memories and we’re able to see the good times that we spent together.

After Chris died I started planning a fundraiser. For me, having LOROS in our life moving forward gave us a purpose. I wanted other people to have the opportunity we had enjoyed to change their goodbye, to change their ending. To be able to use my experiences to give someone that makes me feel really blessed. The thought of us not having LOROS at the end is not worth thinking about.

I know this sounds silly but parking being free is so good. It means so much in the middle of the night and when you’re practically living here. Also, when you walk in to the hospice it feels so welcoming and comfortable, and you don’t have to spend 10 minutes walking through lots of clinical departments to get to the ward like you do in a hospital.

I couldn’t change what happened. I couldn’t stop it. I felt like my job was to make what was inevitable as easy for my children to manage as possible. And I still feel like I’m doing that for my kids every day, even though they’re 16 and 17. It doesn’t end.

On Chris’s stone we’ve had engraved ‘his light shines on’ and that’s what LOROS did for us, bring light to the darkness.