George and I had been married for 13 years. We had three children aged 13, 11 and 6. We loved and respected each other and were best friends.

Caroline's Story

George and I had been married for 13 years.  We had three children aged 13, 11 and 6. We loved and respected each other and were best friends. We had a comfortable life but worked hard and we were fortunate to have a great group of friends and a large supportive family. Life was ticking along just great and we were finally getting financially balanced as the kids were getting older. There was nothing to worry us other than the usual daily events of being parents and home owners.

In August 2011, whilst on holiday in Cornwall, George started to complain of stomach ache. When we got home, it was so bad he went to the doctors and was signed off for three weeks (this was strange for the man who had taken less than 10 days off sick in 10 years).

For the following seven months, George was treated for constipation, IBS and gastritus. He lost eight stone and finally, after a lot of going backwards and forwards to the doctors, and a lot of begging, we got a referral for an investigation and a CT scan. The scan was on the 20th March 2012.  Three days later we were delivered the devastating news that George had severe, life shortening pancreatic cancer. At the age of 42 they had not been looking for it as it is normally found in 70 year olds!

Once we had the diagnosis you wouldn’t expect us to have had to fight any more for help and pain relief, however eight more weeks followed where the doctors focused on a procedure to confirm the tumour was cancer! Finally, George was in so much pain and a friend witnessed him being sick and was so concerned she wanted to get us some help so she called Sobell House. They advised that we asked the doctor to refer us. It took two calls, but we were then referred and a home visit was arranged from one of the Sobell community nurses.

This was the day our lives, and George's pain changed. The community nurse so was kind, she listened and acted straight away, focusing on getting George comfortable. She arrived at 3.00pm and he had proper pain relief by 5.00pm and he actually slept for the first time in months that night. We all took a deep breath and hoped this would keep him comfortable, however little did we know that four weeks later we would need Sobell’s help more than ever.

The hospice helped us on so many levels. On the community nurses second visit she recommended Seesaw to us, a children’s bereavement charity. They had a member of staff who specialised in working with kids of terminally ill parents. We met with her and received the best advice to help us as a family to prepare for the worst time of our lives. This was just one of the many positive events we look back on as a result of contacting Sobell House.

Tuesday 22nd May was the second date that would change our lives forever.  That evening, I got home from work to find George in a state.  His eyes were rolling back in his head, his ankles were swollen and he was so very tired. I called the doctor and he said it was the mixture of the drugs and that I should keep an eye on him, and if he got worse to call an ambulance. We went to bed and I hardly slept watching him toss and turn. The next morning, I called Sobell and spoke to the ward sister.  I explained George’s symptoms and that he was much worse. She asked if he would come into the hospice and I told her he would do as he was told. I had to help him up, get him dressed and almost carry him down the stairs. I'm 5ft4, he was 6ft2 so not an easy task. 

 When we arrived, George managed to get out of the car with help and walk to the entrance, but no further. A wheel chair came from nowhere, and a very friendly man helped us through to room 9. The staff acted quickly and assessed George and gave him more pain relief.  They also asked lots of questions to establish where the pain was and how it felt. 

The thing that sticks in my mind that day is that every member of staff we met called us by our names and spoke to both of us so we understood clearly what was happening. It was so different to the doctors we had dealt with for the last nine months.  The second thing that sticks in my mind, and made us both chuckle that day was that at 1100am, someone popped through the door to offer a morning drink. Anything George wanted they said. I was thinking coffee, but as a joke George asked for a cider. The answer was yes of course, which immediately put him at easy and jokes were had. They didn't have the cider he drank at home, but the next day, there it was.

The next morning, it was like my George was back, he was even up and walking. There were many more checks by the staff and every one of them still called us by our christian names. This might seem like such a small thing, but it made us feel so relaxed and connected with the staff.  It made us feel valued and not just like another patient. George had panicked when the original call came from Sobell.  He "didn't want to go there as people die there", however while we were on our own that day he said to me, "It’s ok here, it feels like home and the staff get me”. I now had the peace of mind that he would be comfortable.

George also met Bob the music therapist at Sobell House.  They spent some time in the studio and George shared his ambition to have a piece of music recorded that had been in his head since he was 16. Bob played it on his guitar and then added some other levels to it. George came back to his room almost glowing. A few days later, Bob brought the finished CD to George, the piece is beautiful and definitely shows how relaxed George felt and how at peace he was.

On the Friday, George had improved and he wanted to go home. I spoke to his nurse to see what the chances were of taking George home.  He explained that the improvement was possibly just a blip, i.e. the bodies reaction to not being in constant pain. This was such a shock to me.  I had been calling it a blip, but in the opposite terms. Reality had finally hit. The nurse was so professional and explained that George should stay in over the weekend so they could monitor him and make sure he was well enough to go home.

The weekend was full of visitors, friends and family coming to see George. As we have three children, room nine (the family room) was perfect for us. George had a bedroom and we had a lounge and small kitchen. The kids were comfortable and George could sit and talk to people without being in bed. The gardens at Sobell House are beautiful and George loved to walk outside with visitors, or be pushed around in a wheel chair when he was tired. By Sunday though, it was clear he was going back down hill, so we had a quiet Sunday afternoon, just the five of us watching a film with popcorn and the curtains closed, just like we did at home.

On the Monday morning, George’s mum and I arrived and we met with Dr Mary Miller (Clinical Lead at Sobell House). She asked if she could speak with George and me alone, however we are an open family, so his mum was included too. Dr Miller is the most gentle, thoughtful person I think I will ever meet in my life. She had already assessed George before we arrived and delivered the news that George would not be coming home, and that he in fact would probably only have a week to live. She asked heartfelt questions which would not have even crossed my mind after hearing this kind of news. Through her actions, she enabled us to make decisions that would help the family and to make arrangements to help the children.  Little did we know then, but this would help the kids through the toughest year of their lives and the grieving process.  She told us as much as she could and explained how the staff would give us information as we went through the week. George was very much included in this conversation and it was at a pace he could keep up with. We had just been delivered the worst news in the world, but in such a way that I was able to take it all in and not go into complete panic. I admire and respect Dr Miller so much and can only thank her for taking such gentle steps with us.

We left to tell the kids and pack bags to come back to stay at the hospice. The advice we had received on how to help the children through this was put into full effect, and although it was the hardest thing I have ever done, I went through it with the confidence that I was not setting the kids up for any future stress or problems.

The next 10 days are a blur, however the one thing that continues to help me every day through my grief is that I was able to keep the two promises George asked me to keep that day - “Please don't let me be in pain and don't leave me on my own.” 

Me, the kids and his mum moved into the family room and did not leave until George's spirit was free. The two sofa beds in the lounge accommodated his mum and mine, plus Jake our youngest. I had a bed brought in so I could sleep right next to George, a small thing that meant the world to me as I could sleep holding his hand, nothing could have been more important. Ebonie, our eldest at 11, slept on a bunk at the end of our beds. David the middle one, at 10 reacted totally differently and didn’t want to stay.  He needed sleep and didn't think he would be able to at the hospice so he went to stay with his god parents, but came to visit every day after school. We let the kids do what was right for them.

George deteriorated quickly but the staff at Sobell were amazing.  They always spoke to him, called him by his name and never spoke over the bed as if he wasn't there. They included me in every decision, drug check or assessment. I knew what was going on, and little by little every day they would quietly let me know what to expect. Nothing was ever too much for any of the staff, nurses, volunteers or doctors. They were so responsive, if we rang the bell because he looked in pain, they were there immediately. They were always gentle and involved him in the process of additional pain relief.  Furthermore, they looked after the family, as well as George, even though they had more than enough to do, they always took the time to ask us how we were and check if we needed anything.

On the Tuesday, I knew George was very close to the end but you really do go into denial that it is happening. The staff were helpful and pointed out that it could be 24/48 hrs.  They recommended that the kids should always say goodbye each time they left, just in case etc. That night, all three kids wanted to go home.  Jake had stayed all week, Ebonie a few days and David still hadn't stayed, but they all wanted to be together at home, I think kids have a sixth sense. They each had a turn in the room with daddy by themselves. They said goodbye, told him they loved him and that they would miss him, all in their own private way. Little did I know what an impact the fact that they were able to do this would have on their future grieving.  A year on, they have all said what a difference it made, they have no regrets and all feel they left nothing unsaid.

That night, George’s mum, my mum and I all took turns to sit with him, as we had since the previous Monday.  The conversations were of peace and acceptance. George passed away very peacefully holding mine and his mums hand at 6.45 Wednesday 6th June.

What is important to know is the fact that Sobell House Hospice, and the staff enabled us to be together as a family.  It wasn’t just about the five of us, but included George’s mum, my mum, his brothers, sister and their partners. Not everyone stayed but most days there would be up to 16 of us there during the day. It was never an issue for the staff, and we were all made to feel completely at home. George was at peace and we were relaxed which made it easier for him. I could not imagine going through those 10 days at home, but Sobell achieved a homely atmosphere with all the medical expertise needed at hand.

Most people would think that would be the end of the support when we left the hospice that Wednesday, but no, I was offered counselling support from the bereavement team which has helped me so much over the last year. Also, although not directly from Sobell, Seesaw has worked with the kids for a year to help them through their grief.  We are all just about to stop our sessions and I truly believe had we not been helped though every step of the last five weeks of George's life, and the most painful year that followed by the team at Sobell, we as a family would not be in the position we are today.

We live in the proud memory of George, fulfilling his wishes to live our lives and be strong and happy people. That is not to say we don't have our days where the loss of such a beautiful, amazing man cripples us, but we had our hand held through the worst time of our lives by people who care.  They care not just because it is their job, but from their hearts and souls.

Thank you to all the team, you make such a difference when it really matters.

Caroline's Story

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