Rita’s Story

“My husband Ken was a big man with a big heart

He’d do anything for anybody. And he made the most of life. He was a typical granddad and we were active in our local Lions Club in Caterham. Ken was in his element whenever he was on a float dressed as Santa, or dressed as Santa outside a supermarket or at a school fair. He had the boots and beard and when children worried about how Santa would get into their house without a chimney, he’d produce a magic key to tell them that’s how he’d get inside.

Our marriage was a second time marriage for us both. He had three children and I had two. We were always together and we stayed that way until the end.

Ken was first diagnosed with cancer of the oesophagus in 2011

He had chemotherapy and radiotherapy and for a while we thought he’d beaten it. But in February 2014 he started having symptoms again. He had more treatment at St Luke’s Cancer Centre and more chemotherapy but this time he was in a lot more pain. They tried everything – Oramorph and fentanyl patches but nothing was helping Ken’s pain. So he was referred to St Catherine’s in July 2014.

When we were first told about the hospice we didn’t like the idea at all. I’d honestly believed Ken would come through his illness again so the hospice seemed so final. Like it was the end of the road. But Ken was braver than me. He told me “I’ll try anything. I just need my pain under control in whatever time I’ve got left.”

Ken’s admission to St Catherine’s happened quickly. A day after his referral to the hospice we got a phone call to tell us a room was ready and waiting for him. So we packed his bag and set off.

As soon as I walked through the doors I thought how wonderful it was

When we arrived there was a sense of trepidation but as soon as I walked through the doors and saw the lovely room Ken had been given, overlooking the garden, I thought how nice it was. We were both made to feel so welcome. And most importantly the hospice team got Ken’s pain under control. That was a huge relief for us both. The drinks trolley was an unexpected surprise too.

When you think of someone you love, you need to think how would I like their end to be? You don’t want to lose them but you know you’re going to, so how can you help them get through it?

Ken was supported by hospice nurses at home

Unfortunately the relief was comparatively short lived. Chemo was suspended as they tried really hard to control his pain and two wonderful hospice doctors came to visit us at home too. They tried everything but nothing was helping Ken’s pain as his cancer was on the move. By November 2014 we were really struggling at home, and Ken was beginning to lose heart, so the nurses suggested he go into the hospice again to try a syringe driver. Eventually, pain relief involving Methadone seemed to bring some much needed respite.

Ken’s Care at St Catherine’s

The care was so professional but so relaxed. Ken and I were on first name terms with the nurses, unlike a hospital, and everything was focussed on Ken and his needs. Both of us felt very comfortable at the hospice and whenever I had to leave Ken I knew he was in good hands with people who cared for him.

During his time at the hospice Ken was having trouble eating. He didn’t really have much appetite but no matter what time of day or night it was nurses would always ask him, can I get you anything? Everything they did was so much nicer than being in a hospital.

We learnt his cancer had spread

While we were at the hospice, the team organised a scan at Chertsey for Ken too. That’s when we learnt his cancer had spread to his spine. It affected his mobility but during an operation at St George’s Hospital doctors took out as much cancer as possible. St George’s was so busy with no privacy so when doctors told us Ken would be going back to St Catherine’s again we were so relieved. The hospice team even arranged an ambulance for him from St George’s.

When Ken returned to St Catherine’s it was getting near to Christmas time

The hospice had kept his room and his stuff ready for his return and when one of the nurses was tending to Ken’s post operation wounds he told her, “I’m so glad to be back.” He was really exhausted by then and when we discussed what was happening he decided to sign a Do Not Resuscitate order.

Ken spent his last Christmas at the hospice and it was absolutely amazing

In spite of what was happening it was such a happy place. Children, grandchildren, family and friends visited. The hospice was decorated beautifully and the sweet table, full of chocolate and sweets, was magical for the children. Choirs sang carols and I shared Christmas dinner with Ken in his room. After New Year, Ken was very poorly and wanted me to stay so I stayed overnight in the chair next to him. Nurses would give me a blanket and a pillow so I could be beside Ken. And if they ever saw I was awake during the night they were always so caring asking if I was alright. I was offered tea and toast in the mornings, and was never ever made to feel like I was in the way I could tell their care for both Ken and me was genuine and real and it helped me no end.

By now, Ken was so ill and we knew his time was limited so knowing I could stay at the hospice with him was really important to us. He must have been feeling very frightened so having me with him was very important to him.

The hospice took away all the nitty, gritty routine form filling etc around Ken’s illness and arranged things for me so I didn’t have to worry. How amazing is that?

As Ken became less well he wanted to go home

St Catherine’s made it possible. They arranged everything – a hospital bed, a hoist, a wheelchair, and carers, so Ken could fulfil his wish. Having Ken at home was something we both wanted. And our bedroom was big enough that I could sleep alongside Ken’s hospital bed and could use the hoist to get him into our en-suite. As we lived in a bungalow I was also able to get him in his wheelchair into our lounge too. Ken’s daughter would often sit talking to her Dad, and we were able to eat together, surrounded by our own things. We’d not long decorated before Ken got ill so it was nice to be in our own surroundings. By then Ken was sleeping a lot but everything was arranged so all I had to do was be there with him. We still had support from the hospice at home and I knew I could ring whenever I needed too. We had support from our GP surgery too.

Ken fought to the bitter end. But it’s only because of St Catherine’s that he was able to die at home. I can never repay them. If I was managing Ken’s illness alone I wouldn’t have known where to start! I didn’t know what to expect but the care was unexpected and amazing. The hospice took away all the nitty, gritty routine form filling etc around Ken’s illness and arranged things for me so I didn’t have to worry. How amazing is that?

Even once Ken had died I still had support

For the first six months after Ken’s death I went about in a bit of a fug. But then I realised I needed some help so I had counselling with a lovely lady from the hospice once a week. It helped me enormously. It showed me that I was going through a grieving process and that what had happened to Ken was meant to be. I questioned myself a lot before I started counselling. I wondered ‘What could I have done better?’ ‘And Could I have done more for him?’ I was with Ken at the end but I still felt guilty. Counselling helped me see that I couldn’t have changed what happened – Ken had a nasty disease. I talked, cried and offloaded at my counselling sessions and left my baggage there.

I volunteer for the hospice now because I want to give something back

I knew volunteering in the actual hospice would be too painful for me. So I volunteer in the Caterham shop two mornings a week. I needed something to do after Ken died because I didn’t want to just sit at home. When you’re grieving you need a focus and a reason and volunteering is ideal for that. It’s taken me out of myself. It would have been an insult to Ken and everything he went through if I just flitted away. When Ken died he wasn’t an old man. He was only 69 and I was only 63. I couldn’t give up. There was more living for me to do.

I love my mornings volunteering

It makes me feel useful and the shop team have been really welcoming. I enjoy steaming the clothing donations that come in and chatting to the customers. I chat to them about all sorts, and whenever I have the opportunity I tell people how I feel about the hospice. It helps to spread the word and raise awareness of the need for support. Some people have been through a similar experience to me too so it’s nice to chat as I know they understand.

It’s heartbreaking knowing that not everyone is able to have the hospice’s care

When you think of someone you love, you need to think how would I like their end to be? You don’t want to lose them but you know you’re going to, so how can you help them get through it? People don’t get a choice of where they’re born but everyone should have a choice of where they leave this life. Ken did it at home with me holding his hand. Everyone is entitled to the end that they would choose for themselves.”

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