In December 2017 Lisa’s husband John was diagnosed with pancreatic cancer. Following surgery and treatment Lisa, John and their three teenage children Rosie (18), James (16) and Holly (15) had started to put cancer behind them. However, in April 2019 a CT scan revealed John’s cancer had returned and that it was incurable. Lisa shares their story.
“It all started at The Killers gig at the SSE arena in Belfast on Friday 17th November 2017. It was the first gig that all five of us could attend. The Killers is one of the bands we all agree on, partly because one of their CDs was stuck in our car CD player for over a year. The children still laugh about that moment and say, “The Killers nearly killed Dad”. Let me explain a little more…
During the gig, John started to feel unwell. A few days later, on Tuesday 21st November, he went to see the GP. The GP said he wasn’t a good colour (he was jaundiced) and sent him straight to Antrim Hospital. We hadn’t noticed that he had turned a colour akin to Homer Simpson.
The timeline thereafter is clear and vivid. I was speaking at an event at the US Consulate and had my phone turned off. When I came out of the building, I had 16 missed calls. John had undergone an initial assessment and was being kept in hospital overnight: a suspected blockage in the Common Bile Duct (cue Google search: Where is the bile duct?)
It was Rosie’s 16th birthday. We were due to go out for dinner to Deanes Meat Locker in Belfast. I took John an overnight bag to the hospital, expecting he would get back home after a few days; we decided that Rosie should still have her special celebration, so I went home, collected the children and went to the restaurant.
Ten days later on 1st December 2017, at 44 years old John was diagnosed with pancreatic cancer. In January John had Whipples’ Procedure – a surgery that takes over 7 hours – at the Mater Hospital, Belfast, followed by around 7 months of oral chemotherapy, during which time he continued to work full time from home as a Cybersecurity Analyst. There was then a break of about 6 months when we started to put cancer behind us.
In April 2019, a CT scan revealed that John’s cancer had returned – this time the outlook was not good, and we were told by the Oncologist, that John’s cancer was incurable. A period of IV and oral chemotherapy followed, however both those interventions have now come to an end and John has been referred to the palliative care team.”
At first, cancer was an inconvenience; something that came along very suddenly and got in the way. It was a shock for all of us. John and I decided from the outset that our children would always hear news and updates from us first; that we would be honest and open and be willing to answer any questions as best we could. However, the reality is that three teenagers can easily look up cancer prognoses, statistics and outcomes online and that can create fear and uncertainty. It’s definitely something we had to deal with.
Each of the children responded to John’s cancer diagnosis differently and we have learned to anticipate that and allow them time and space to process information. The second time around was more problematic, not least because of the severity of the prognosis but also because of the timing coinciding with exam season. On this occasion, we waited until Rosie had completed her AS level exams, five weeks later to tell them. It was one of the most difficult decisions we had to take.
I discovered Cancer Fund for Children when I was looking for some support for Holly early in 2019. I was trying to find other young people who were going through something similar. John and I had discovered that as parents of teenagers, we were often saying or doing the ‘wrong thing’, according to our children, in spite of our best efforts.
From the first moment, I talked to our Cancer Fund for Children Specialist, Gareth, I felt such a sense of relief. Gareth completely gets young people. He’s on their wavelength. He has such a depth of knowledge, of resources and experience to draw upon. And, on the flip side, he recognises the concerns parents have navigating these uncertain waters.
The support our children have received has been completely young person-centred, from the residential group work, through to the individual support and therapeutic short breaks for the whole family at Daisy Lodge.
Cancer Fund for Children’s individual support is unique. It helps the children find ways of living well with their reality and provides them with a safe environment to explore their feelings and fears. Importantly, individual support has provided our children with strategies and tools to help them make sense of their feelings and their world, especially at a time when their peers are occupied with teenage life.
From my perspective as mum, having the Cancer Fund for Children’s support at our disposal has allowed me to breathe, so that I can take care of myself and my whole family. Their support has enabled me to accept that I don’t have to have all the answers and that’s okay. It has given me the opportunity to talk to specialists who have trod this road before and who can guide me with supporting the children. I’ve seen how my children have more tools in the toolbox to manage themselves and this gives me immense hope for their ability to cope with the terminal nature of John’s cancer and life after his death. An example of this is they are able to talk about how they are feeling and what they need. On days when John has an appointment at hospital, Holly tends to worry, so on the day of his last oncology appointment, her Cancer Support Specialist, Laura went to her school to hang out with her at lunch-time. That level of individual attention is incredibly valuable.
We have been to Daisy Lodge twice, once as a family and once just John and I. When we went as a family, the highlight was seeing the children go cycling together, watching them laugh and have some fun together. It was also an opportunity to have some tough conversations in a safe environment
John and I attended a health and wellbeing mini break in February, which gave us some respite and time to enjoy nature and each other’s company. The environment is very special and lends itself to slowing down and getting a sense of how you are doing.
COVID19 has brought us unique challenges. John has been self-isolating for three weeks already. I am caring for him in a separate location away from our family home to keep him safe. Rosie, now 18, is the boss at home with James and Holly and our Beagle, Henry. It is very difficult to be apart from our children. However, we always try to frame things in a positive way, so isolating is what we have to do to keep John safe. The children have made us really proud, with their courage and resilience. I think that Cancer Fund for Children has played a part in that by helping them recognise their strengths and gifts. Their Cancer Support Specialists have been texting and offering support by phone.
My advice for people who are struggling with self-isolation is to,
– Remind yourself staying at home is the right thing to do. If you knew you had the power to save just one life, you would do it, if all it meant was that you had to stay at home for a while.
– Seize the opportunity to connect with those you love, tell them what you most appreciate in them; let them know how they have helped you in your life and what difference that has made to you. If it is hard to say it their face, record a voice mail. Having a voice recording can be very soothing.
– Be grateful for your health. Notice how you take it for granted. Take care of yourself, body, mind and soul.
Children and young people who experience cancer in their lives have a lot to deal with when their mates are simply figuring out life. Cancer Fund for Children helps make sure these young people get the help and support they need to go ahead and lead a full and joy-filled life in spite of the grief and loss in their lives. No other organisation focuses on the needs of teenagers in the same way.”
We are so grateful to Lisa for sharing her family’s experience of cancer. Vulnerable children and young people impacted like Rosie, James and Holly need our support now more than ever. Please, if you can, donate what you can today to help us support more families like Lisa’s.