Anni

Ian and Anni

Here's Anni, to tell you about her and husband Ian's experience of #LOROS

Anni’s husband Ian was diagnosed with oesophageal cancer in April 2016 which had already spread to his liver.

“We’d been told Ian’s liver tumour was shrinking so were shocked when in November 2017 we were told it had spread further to his stomach and peritoneum. It was a huge shock and, being a nurse, I knew it wasn’t good.

“I gave up work to care for Ian at home. It was totally exhausting – he was having really extreme night sweats and would change pyjamas several times a night so I was always washing, as well as researching his disease, trying to get Ian to eat nutritious meals.

“What made it worse was that Ian was really struggling with his diagnosis. He was angry and frightened and didn’t want to talk about dying at all.

“Then the GP referred Ian to LOROS, and thankfully he said yes.

“Lots of people think, as we did then, that LOROS was just somewhere you go to die. But it is so much more than that.

“The LOROS Community Nurse Specialist came to see us at home. She was absolutely brilliant and Ian really liked her which helped a lot. She understood Ian immediately – and could see when he was playing down his symptoms, pretending it was all okay. She ordered him a special cushion and he refused to use it and threw it in the shed. Then he got it out, used it and even asked for another! She knew him and knew what he needed.

“His consultant was also amazing, so gentle and kind and understanding. She even rang up after she’d seen him at the clinic and was on the phone to Ian for over an hour. I didn’t ever expect a consultant to do that!

“Ian didn’t want to know his prognosis but I really did, so she talked to me separately about it. I was so grateful she gave us so much of her time.

“The CNS nurse communicated regularly with the consultant about Ian, which meant that his care at LOROS was seamless – much more joined up than hospital ever was.

“In March 2018, Ian came in to LOROS to have some fluid drained from his stomach. His weight was plummeting – he’s gone from about 12 stone to 7. I was really struggling, and he was still very unhappy and frightened which made it difficult.

“Ian was coeliac which could have been a problem, but the food was exceptional. In hospital he could only eat ice cream, but at LOROS he was cooked whatever he fancied, which really helped. Everyone was so friendly too, the nurses, the domestics, the housekeepers. We both loved the sociability.

“I started having some counselling at LOROS which was absolutely invaluable. It really kept me sane. I also had complementary therapy – reiki, reflexology and mindfulness. Those things kept me going at a very low time.

“At the end of May 2018, Ian was getting up in the night a lot and it became unmanageable to keep him at home. I felt terrible as he wanted to die there, but he needed to be in LOROS, and luckily there was a bed for him.

“When Ian died, I felt relieved that he was at peace. It had been a long, difficult road.

“After his death I continued to have complementary therapy which I loved, as well as some counselling.

“The support from LOROS went way beyond what I expected. It really kept me going.”