Rebecca & Dean

On the 26th June 2017, I was stood in the school playground waiting for Lily, our youngest daughter to finish her taster session at school. My husband Dean had been in hospital for several days following an unexplained jaundice episode. The doctors had decided to do an endoscopy to try and see what was happening as all tests to that point had not shown any reason for his jaundice. My phone rang, it was Dean, he sounded distant. You need to come to the hospital now, he said. Why, I questioned. The doctors want to speak to us together. My heart leaped in my chest, tears rolled down my face the other mums said Lily would be fine; they did not know I was crying for my husband. I knew in that moment it was not good.

Getting a cancer diagnosis

I arrived at the hospital sometime later. I sat, trying to compose myself asking stupid questions searching the faces of the nurses to try and guess what was happening, in my heart I knew. We wandered into a room of professionals. They offered introductions, a Specialist nurse, doctor, matron, another doctor… I knew it was serious. They sat us down and explained during the procedure, cancer had been found. I sat numb not really taking in the information. Biliary duct, stent, blockage, referral to the specialist hospital to discuss treatment. Dean was able to come home that night, we walked out the hospital numb and in shock. We cried together. We told our children. We told our friends. We told the family. So many questions we were unable to answer.

Naturally, like most people we turned to google, we searched bile duct cancer, there was not much information, everything pointed to pancreatic cancer, but the numbers were grim. Lucky to get five years every google search seemed to say the same. How could that be possible? Dean was just 41, he surely had to have more time than that. We did what we always do, we looked for positives, found the sunshine in all we could. But those early days were hard, they were lonely. We only had each other. I tried my best to be strong for Dean, for the kids, for our family and friends.

Finally, the letter came for an appointment at the specialist hospital. Again I googled the doctor, best in the field. I felt better, more comforted. We rocked up to the hospital with a head full of questions, so much we wanted to know. The doctor and our special nurse explained the diagnosis. Pancreatic Cancer, there was a surgery, The Whipple but the surgery was huge with many potential complications and might not get the cancer. The doctor said he would do his best, but worse case we might not get Christmas, my head spun. Again, we walked out the hospital shell shocked like zombies. Everyone was looking to us for answers. We did not have them, not the ones anyone wanted to hear anyway. I don’t think we shared the information we had been given, we tried to put a positive spin on everything.

Having the surgery

Fast forward to 28th July 2017, surgery day was here, there was a nervous excitement, an optimism. The pre op assessment was funny, we had taken to dark humour to get us through. One of the doctors sat opposite us, she went through the consent form, she talked about the surgery and asked if we knew what to expect. Naively, we said a small cut on the belly. She laughed, no, it’s an incision from the breastbone down to the belly button then across to each hip. Surgery would last approximately 12 hours, there would be drains and intensive care required. I felt sick as Dean signed his name and was wheeled away. I didn’t leave the hospital grounds, I was thankful it was a summers day, I sat outside with Dean’s dad. We waited, lunchtime passed, teatime passed, they called us up to ICU at 7:30pm, Dean was brought on to the ICU ward at 8:30pm. Nothing could prepare me for the sight of my 6ft2 husband, lying helpless, wires and tubes, syringes of medication he looked so small and helpless. I stayed for as long as I was allowed. I would have stayed all night if I could have. I left the hospital and returned home and sobbed.

The next day, I went straight to the hospital for visiting time starting, 10am. Dean’s parents came too but didn’t stay long as there was a family birthday party to attend. I bathed Dean’s face, held his hand, chatted, the nurses were amazing. The doctor popped in to see us, I thanked him, he told me not to thank him yet, that there was a long road ahead. I reflect on that often. I was not prepared for the long road, emotionally or mentally. Dean’s grit and determination shone through, he pushed hard and within 24 hours he was on the ward. Five days later he was allowed home. I was so grateful to have Dean home, the house wasn’t the same without him. I must admit it was hard work, due to the size and position of the incision and his weakness, I had to physically help him out of bed, help him dress, change and bathe. It was physically and emotionally very difficult. We were pretty much on our own, with district nurses coming in to change the wound dressing.

Chemotherapy

In early August, the histology results were back, lymph nodes had tested positive for cancer cells therefore chemotherapy was recommended as a belt and braces approach. Not long after we were referred to the fabulous oncologist, he explained the chemotherapy options, including a trial of gem/cap (two chemotherapies given at the same time). We were advised Dean needed to build himself up for the chemotherapy, we were told he would struggle gaining weight. A challenge I took very seriously! So, I embarked on feeding my husband up ready for the next fight. The chemotherapy started in October 2017, the only way I can describe that time is grey. Dean didn’t experience horrendous side effects, mainly fatigue, nausea and sores on his gums. We rumbled on.

Being told earth shattering news

Dean underwent 3 monthly checks, all seemed well, he looked well. Then in early 2020, just before the pandemic, Dean started to experience back and shoulder pain. We mentioned it at oncology appointments, Dean went to the GP and he was referred for physiotherapy. His bowels seemed to change but nothing significant, not like the first time, he hadn’t been the same since surgery. Then in early December 2020 Dean collapsed at work in agony. He was assessed and it was recommended he speak to his GP. I contacted his specialist nurse and GP and there was an agreement an urgent scan would be booked. On the 22nd December 2020, Dean was called and told the earth shattering news, the cancer had returned, it was inoperable and it had metastasized to his chest and abdomen. Our world fell apart, we managed somehow to get through Christmas without telling anyone, after the pandemic year we wanted to give our family the best Christmas possible.

In early January Dean was fitted with a Hickman line and commenced palliative chemotherapy, to give us time. We started to get our house in order, sorting finances out claimed for life insurance, pensions, and sorting wills out. We were devastated to read the communication that Dean’s life expectancy was 10 months. Suddenly, everything felt very out of control. It has been incredibly hard as a family to come to terms with, our children Jake, Liam and Lily have each struggled with the news. For me the hardest part has been Dean being so unwell and having to go to hospital appointments on his own, for treatment alone and not hearing things first-hand, due to the no visitor rules because of the pandemic. The first day he had chemotherapy FOLFIRINOX, he explained he had a bad reaction to one of the drugs, he was in agony. He spent that evening shouting in pain, he also returned with a big bag of drugs, with no instruction. This included injections. I had to ring the ward to find out what had happened and what I needed to do with the medication. The side effects of this chemotherapy have been a lot worse than the gem/cap cycles, not surprising, as the doctor calls it the ‘big guns’. Dean has extreme fatigue, nausea, diarrhoea, numbness in his hands and feet and this strange thing where he is unable to tolerate cold things, so not able to touch cold things, drink or eat anything cold. He has to wear a hat, gloves, scarf even when it is warm. On chemo days, I have taken to a routine of changing our bed and putting in a hot water bottle. He comes home with a chemo drive on for 2 days, the children find this the hardest, Lily commented her dad doesn’t sound the same anymore, it’s heart breaking at times. We have muddled through the last six months, we have laughed and cried. I have felt angry and felt like it is incredibly unfair. Dean has had a couple of nasty infections, including sepsis caused by the Hickman line. This was very frightening, again I was not able to visit him in hospital.

At the time of writing, we still were waiting for the outcome of the life insurance claim, some six months after the initial communication. Dean is awaiting the PICC line insertion for the chemotherapy to resume following his recovery of sepsis. I feel very alone, there’s not much support, I am not sure if it is because we are young, or have a can do attitude or the pandemic, but I often feel like I am trying to do it all on my own. I often have times where I feel extremely anxious, I am unable to consider what the future looks like, I very literally can only take one day at a time.

June 2021

Update June 2023

Last time I wrote, Dean was having FOLFIRINOX chemotherapy, which he had for about a year. Initial scans in May 2022 showed the cancer had responded well to the treatment, and Dean decided to take a break.

We discussed in detail with Dean’s care team the pros and cons of taking a break from treatment. We knew and understood the risks, but for Dean, he was forever the optimist and wanted some quality time in amongst the quantity (a luxury not often offered to those with pancreatic cancer). So we embarked on a summer and autumn of holidays and fun.

Summer of memories

Dean had bought his dream motorbike, he wanted to get back to working (he was born to be a teacher and loved it), and he wanted to be well enough to make some brilliant memories with our children.

Dean and I went to Rhodes for our 10 year wedding anniversary, we then took the children to Lanzarote, we had a blast and made some forever memories.

Dean took his bike with some of his friends up the West coast of Scotland for a few days, exploring lots of scenery and winding roads. His friends say he sang every day on the intercom. Amazing especially given his failing health.

In October we returned to Rhodes with our children and our friends and their family. This would be our last family holiday. By this point it was clear Dean’s health was significantly deteriorating, he had lost a lot of weight, his pain was significant, he had developed a cough and his legs had begun to swell.  I knew in my heart this was not a good sign, but Dean remained upbeat.

Scans and possible trials

Dean had throughout his cancer journey been keen to try new things, so it was no surprise to me that when his team suggested genetic profiling and possible trials Dean was well up for it.

I was a little more hesitant, however upon returning from our Summer holidays we met with the research team at our specialist hospital. They did a lot of blood tests and more scans, and discussed the potential options.

In November, we found out the devastating news, the cancer was in Dean’s liver and lung therefore trials were not an option. We did find out that Dean was a carrier of the MUTYH gene, however, this just led to more questions than answers. Dean agreed to his DNA being used for research, so we hope that this will mean hope for someone one day.

Back to gemcitabine we went, he started three weeks on, one week off. By this stage, Dean’s health was deteriorating a lot, he had slowed down physically and the pain was becoming more of an issue. By Christmas Dean was struggling to stay out of bed, struggling to eat and struggling to gain any weight.

The reality was tough

Dean had declined even further and by mid-January, his blood tests pre chemotherapy started to suggest his organs were struggling with it and his legs had swelled so much getting shoes on had become an issue.

I was struggling too with the caring aspect. Dean by this point was in bed most of the time and not making it downstairs. He was very reluctant to admit this to anyone, he was proud and I think he really believed in his optimistic approach to his illness. At times I found this very hard.

He had another scan which showed all sites had increased in growth and new areas were appearing, he told a friend, ‘if you throw a dart at me you’d hit cancer’.

We started to prepare ourselves

His care was transferred to the palliative care team. His health deteriorated rapidly after this, a stay in our local hospice was organised for Dean. Looking back now, I wonder if some of that was around giving me some time to get my head around what was happening. But it was done mainly to get on top of his pain. My office was changed into a bedroom with a hospital bed, commode, wheelchair and lots of other support devices.

I knew Dean never wanted to know how long, but one day I asked his specialist nurse. SI was able to gauge from that, we had weeks.

Sitting our children down to tell them their dad was actively dying was one of the hardest things I have ever had to do. Our daughter who is 10 years old let out the most harrowing sob I have ever heard. Nothing and I mean nothing can prepare you for that. I tried my best to answer her questions honestly and offer her comfort.

The next few weeks were a blur of visitors both family, friends and professionals visiting Dean and my main role turned into caring and making lots and lots of coffee/tea.

Dean was so popular, we were inundated. At times, I would find myself frustrated at these people, some of whom hadn’t seen Dean in years, who wanted to take up his limited time. But they didn’t know how limited this time was. Dean made it very easy for people, using humour and jokes. Not many serious conversations were had. I also know the visits cheered Dean up, he was able to be the showman, something he didn’t have to do for me.

I stayed with him to the end

By the beginning of March Dean had deteriorated further and things were changing day to day. We talked about what he wanted and agreed that the best place for him was to be in the hospice.

We had a little wait, whilst a bed became available, then he was moved to the hospice on 10^th March. By this point he had become completely immobile, taking no food or water, and was in and out of sleep. Once in the hospice, they were able to make him more comfortable with a driver for his pain medication and a catheter.

I’d love to say it was a peaceful process, but Dean fought so hard to live. The end was no different, he struggled and fought right to the very end, it was very difficult to watch. I stayed by his side the whole time and he took his final breath on the 13th March at 8:20pm aged 46 years old. It was the most heart-breaking moment of my life, the only comfort I can take is he is no longer in pain.

Life after cancer

When something like cancer has been a huge part of your life for almost 6 years, it is hard to remember what time was like before. I am forever changed, hardened and a little bit broken by the experience.

You go from having to remember medication regimes, having people in and out of your home, professional involvement, to nothing overnight.  Knowing it is unlikely I will see his oncology team again, the nurses, people we grew close to over the years is hard. I have the children, the dog, really good friends and family to keep me busy but there is an emptiness to life now.

A few months after losing Dean, we lost his mum very quickly to cholangiocarcinoma (cancer of the bile duct), she had been poorly in March, and undergone tests, she sadly passed away on the 27^th May in a hospice.

Being widowed at a young age is also a little overwhelming, it is not the title I expected to be at 40. You plan a life together, and now I have to live it for the both of us. The word widow is not one I’d associate with myself, it was hard seeing that written on Dean’s death certificate.

I have recently returned to work, I take our children to their various activities and I have booked a lovely family holiday for look forward to. All as Dean would have wanted. We are slowly starting to learn to live again, some days are easier than others. There are some days I don’t want to get out of bed, others where I laugh and feel guilty. But every single day I hold on to our wonderful memories and feel incredibly lucky we got so much time, that many other pancreatic cancer patients just don’t get.

Rebecca

June 2023