Georgia & Leon
Georgia’s husband Leon was 51 when he was diagnosed with pancreatic cancer. He sadly died two years after first noticing symptoms. Georgia talks about the difficulties they faced and advocating for Leon to get the care he needed. She also remembers the wonderful support their young family had from the hospice towards the end of Leon’s life.
Leon started to feel unwell in March 2021. He had stomach pain, back pain, indigestion, weight loss, then changes in his poo within a few months. Leon was tested for IBS, indigestion and after a few more weeks of repeated visits to the GP I insisted that they do more! At this point all they had done was a blood test and he had lost one and a half stone in six weeks. I told the doctors that I was watching him fade away and that they weren’t doing enough.
They sent him for an endoscopy which came back clear, but the consultant doing the procedure said to Leon that ‘considering everything you have just told me and all of your symptoms, I am very worried.’
He was able to have surgery to remove the cancer
Leon was then referred for a CT scan which showed a mass on his pancreas. We spoke to the consultant who said he was eligible for surgery to remove the tumour.
We threw a huge 1st birthday party for our daughter Ruby in September, as we wanted to really celebrate this occasion with all the uncertainty we were going to face.
After the surgery, the consultant was happy that everything had gone well and they had removed the tumour in its entirety. Leon recovered well and was out of hospital in less than a week.
It was hard, but he seemed to be doing well
We had a few complications as he wasn’t given any Creon tablets (PERT) . Even after returning to hospital no one realised that Leon hadn’t been given PERT, which he now needed to be able to digest his food. It was our GP that asked how many Creon he was taking and Leon said ‘what’s Creon?’ The doctor then prescribed this, once that was sorted he did amazingly well.
Leon had six months of chemo and was hit with nearly every side effect – sickness, fatigue, diarrhoea, constipation, ulcers, and serious sensitivity to the cold. Watching him go through these two-weekly cycles, with each round his symptoms getting worse and lasting for longer was just heartbreaking.
We had a good run from June to November. Leon had his final three-monthly scan at the end of October (a year after his op) and was given the all clear – they said there was no sign of reoccurrence and that they didn’t need to see him for six months.
The cancer came back – and it could not be treated
In December Leon started to present with some of his symptoms again – unable to eat, back pain, stomach pain. We went to the GP every week but they told us it was just side effects of the chemo and didn’t seem concerned. On the 28th of December (our wedding anniversary) I went back to the doctors with Leon and said I really didn’t think he was ok and I wanted more to be done. He was losing weight again and I felt like we were going backwards.
We went back to see the consultant in January and again he said it could be side effects of the chemotherapy. Leon was referred for another scan just to check everything was ok and then had to go for a biopsy on some fluid in his tummy.
On the 14th of February the consultant rang to give us the results and his exact words were ‘I can’t believe what I’m looking at.’ The cancer had now spread. The consultant told us that his condition was no longer considered curable but it was treatable. I remember asking ‘What do you mean?’ and the consultant said ‘We can’t ever make it go away, we can only try and manage it.’
We were referred back to the hospital. The consultant then said that they didn’t feel that any of the treatment options would have any benefit to Leon and that actually it would just make his quality of life worse.
The Macmillan nurses now got involved because Leon’s condition was terminal. They suggested that Leon could try pain management at the hospice.
At first Leon said ‘absolutely not, you go in a hospice to die and I’m not dying yet.’ But the following day I sat down with him and I said, ‘Right now you’re not living. You can barely say two words to me, you can’t go out, we can’t do anything as a family because you are in so much pain and I can’t bear to watch you like this anymore.’ I said ‘if it’s a couple of days away from home and they can change your medication and stop you from being in so much discomfort then surely that is worth it.’ He agreed and the following day me and Ruby took him to the hospice.
Leon, Georgia and Ruby
The hospice helped us enjoy our time together as a family
As soon as we arrived we were greeted with big smiles and so much love. Ruby loved it! From the minute we walked in she jumped straight on the bed and asked Leon to put the telly on.
The hospice became our second home for the next three weeks. It allowed us to be a family and we had the opportunity to spend proper time together again – maybe not doing what we had hoped and dreamed of, but they definitely gave us Leon back. To see him smile again, tell jokes and just be able to have a conversation together was everything! Ruby had her Daddy back and I can’t explain what that meant to me.
We left the hospice on the 7th of March 2023 and Leon had said when he became more unwell he wanted to come back, and this was the place he wanted to die. I don’t think anyone anticipated how fast this would happen.
The following evening Leon woke up in an unbelievable amount of pain. Unfortunately our only option at this time of day was A&E but again the hospice staff were there to support me. I asked for the Macmillan nurses first thing in the morning and with their help we managed to get Leon back to the hospice.
Returning to the hospice was like coming home. When the doors opened and the hospice staff greeted Leon he beamed that beautiful smile of his, that’s the first time I’d seen him smile in 12 hours. I think he knew he was safe and we were safe too.
The next few hours were some of the hardest hours of my life, but the staff were amazing, they helped me through it all. They were the first people to actually tell me what was happening and help me to try and get through what was going to happen next. I know that my husband was where he wanted to be. Leon died surrounded by the people who loved him the most.
Reflecting on that time
I think for anyone watching a spouse go through such a horrific illness it makes you feel helpless – like nothing I could do would truly help him. And with a baby in the midst of it all I think I threw myself into the practicalities and just ensured Leon’s medicine was sorted, he had meals in the fridge that were easy to get to, I would cook multiple things a day as and when he fancied them – anything to help him eat and build his strength up. I tried to plan family days out that Leon could manage. I didn’t want Leon or Ruby to miss out on any time together.
Once Leon’s condition had been diagnosed as terminal we didn’t have the time to process it.
My advice to anyone in our situation would be to research it, use the resources available to you and speak to Pancreatic Cancer UK because I wish I had known so much more and they might have even been able to give us some help and support.
Georgia
November 2024
