WEEKEND READ: ‘It was three in the morning when Lisa and Dave said goodbye’
14th Sep 2018
Just a few years after they were married, Lisa’s husband, Dave became gravely ill. A liver transplant saved him, she tells Sophie White about the limbo of life on the transplant list and the series of miracles that saved her husband
Lisa and Dave have known each other since their early twenties, they moved in the same circles and even had a few romantic near misses before eventually getting together. The year they got engaged was a turbulent one for Lisa’s family. Her uncle John had been undergoing treatment for terminal brain cancer and sadly, unbeknownst to the couple more anguish was to come.
“We got engaged in December and the following August… we were in Ballyvolane House doing our tasting, my parents were in Rosslare where they have a house and my Dad started driving funny.”
“Dad, having read up on his brother’s condition and being an incredible diagnostician, recognised the signs.”
A few weeks later he too was diagnosed with terminal brain cancer. The family gathered to hear the prognosis.
“Malignant brain tumours are generally not caught until they are stage four and as the doctors said to us at the time; there’s no stage five. Sometimes people do well with surgery but he was told straightaway that wasn’t an option for him.” says Lisa.
“You know they say right before you die your life flashes before your eyes? That moment when you hear something like that – that you’re going to lose someone – you just see this reel of your life. I wanted to cancel the wedding. And Dad was like ‘we are absolutely a thousand percent not cancelling the wedding, we’re having a party’.”
“He died less than a year after the wedding. We were all with him and it was lovely in the weirdest sense of the word. We all felt really privileged. It’s a really powerful thing to be with someone when they die.”
“I was pregnant with my daughter while Dad was dying… And when she was born, I know it’s sounds cliché but she saved us. She was the angel that pulled us out of our grief after Dad died.”
“Dad just couldn’t wait to have a grandchild and she was always a reminder that he wasn’t there. It was bittersweet.”
“Everything had just moved so fast and suddenly I was on a plane to New York.”
“Grief doesn’t have a trajectory,” Lisa reflects. “It’s so unexpected – it can hit you at the weirdest times. Some random mornings you wake up and you feel winded. I remember thinking I’d never understood what heartbreak felt like but it’s that, that’s what it is.”
“Mum was amazing and had lead by example of how to deal with everything. She’s ridiculously strong. We talk about Dad all the time and she showed us how to deal with it in a really healthy way.”
The couple welcomed their second child a year later.
“He literally didn’t sleep for the first seven weeks he just cried,” Lisa laughs. “I remember my mum ringing… she said ‘right we’re bringing him back to Holles Street’ and I was like ‘they’re not gonna take him back now! He’s seven weeks!’ It was probably colic and reflux. I was demented. Then after that, he was glorious.”
Lisa went back to work after Matthew was born. And life was to amp up even more with Lisa taking up a new role. From the off, Lisa was thrown into the thick of things at her new company. Flying to New York on her first week in the job, she had what she realised later was a panic attack while the plane was on the tarmac awaiting take off.
“Everything had just moved so fast and suddenly I was on a plane to New York. I felt like Alice falling down the hole. Why did I do this? I’ve just got back from maternity leave. This is too much.”
Lisa recovered from the episode – what was perhaps a natural response to an extremely difficult few years. Unfortunately just a few weeks later a new chapter of profound upheaval would hit.
I’ll never forget that date
“We didn’t know what to expect, we certainly weren’t expecting cancer. We went in the next day, 22nd of March – I’ll never forget that date.”
“Dave had been complaining of stomach pain. He felt like he wasn’t digesting his food properly. And eventually I was like ‘you’re giving me a pain in my face’ just go to the doctor, it’s probably an ulcer.’ He has a pretty stressful job, he’s in private funds management.”
The doctor gave Dave some medication for the possible stomach problems but also advised he get a scope to further investigate. Fortunately, there was a cancellation and Dave was given a scope – which involves putting a camera down the throat to detect any abnormalities – shortly after. The scope appeared clear but thankfully a thorough consultant also called for an ultrasound during which a shadow in the abdominal area was detected. From there he was given a catscan and then an MRCP (similar to an MRI scan though involving the injection of dye to aid the diagnostic process).
“As soon as my mum heard that, she knew what they were looking for and what they were thinking it was.”
“On the 11th of March we celebrated Matthew’s first birthday and christening and 10 days later, Dave said they had the results and wanted us to pop in and chat to the consultant.”
“We didn’t know what to expect, we certainly weren’t expecting cancer. We went in the next day, 22nd of March – I’ll never forget that date. We had the last appointment of the day. We sat down with the liver and pancreatic specialist.”
“They said, ‘There’s a blockage… We don’t really know what it is. It’s just so strange. You’re very fit and you’re young with no history of anything else.’ I remember he said the word ‘tumour’ and ‘transplant’ in the same sentence and it just brought me right back, I was like ‘it can’t be happening again. Is this for real? This is my actual life.’”
“We sat in the car and just cried and tried to make the start of some sense of what was happening. Having no answers. It was just the weirdest night.”
A shitshow of a life
“I persevered, I’d work from the hospital. It was just such a shitshow of a life. I had a one-year-old and a four-year-old. We were so blessed that our family were so amazing.”
While the clinical team were certain they were looking at a tumour of some sort but they still had to conduct further investigations to test the mass which was in a very awkward spot. The tumour had also blocked his aorta and Dave’s body had made a network of vessels bypassing it which explained his exhaustion, his body had been under incredible strain. The network of vessels also made each biopsy (Dave had five in total) enormously risky as nicking any one of those vessels would have meant Dave would have bled out. Each biopsy came back benign but the team were convinced that they were looking at cancer. Eventually on the fifth biopsy, it was positive for cholangiocarcinoma – cancer of the bile duct.
Cholangiocarcinoma is incredibly rare among younger man, so much so that many countries only treat it with palliative care because patients are usually considerably older.
The team – up to 15 consultants from different disciplines – had to unanimously decide if Dave was a good candidate for treatment, which in this case would be an aggressive combination of radiation and chemo until in an ideal world a liver was available.
“Ireland and France are the only two countries that will treat and at that, it’s rare that they will,” explains Lisa.
For a couple of weeks, Lisa and Dave hung in limbo before Dave was found to be eligible for the treatment. In this time, Lisa was still adjusting to a brand new and demanding job, with young kids and mounting anxiety about what was coming down the road for Dave.
“My boss was amazing. I was so lucky to be working for such a great person at the time. So I persevered, I’d work from the hospital. It was just such a shitshow of a life. I had a one-year-old and a four-year-old. We were so blessed that our family were so amazing. They’d literally just parachute in, we were so lucky. We just sort of got on.”
“Then he started to get really tired and really sick. He was losing weight, he couldn’t eat. It’s really strange being a carer of your husband of five years. This is not what’s supposed to happen.”
“If I die…”
“Before this, I would’ve thought I was quite self-aware and then after this I realised I didn’t know very much about myself at all. I think women generally just get through. We put on the blinkers and just get through. We had to do the power of attorney, Dave had to write his will. That’s weird stuff to do when you’re a young couple.”
“It was so real so soon. It was not ‘let’s see how this goes’, this was real life. Dave had conversations starting ‘if I die…’ Then you have to deal with the every day as well… I knew I had to be strong for him.”
As the summer wore on Dave had to be assessed intensively for fitness to receive a transplant to be sure that he was completely cancer-free. Lisa took a sabbatical to support him.
“I couldn’t think of Dave at home getting sick and being stuck alone with his thoughts… I had so much guilt. I felt like I wasn’t doing anything properly for anyone. I wasn’t doing my job properly, I wasn’t looking after the kids properly. I wasn’t there for him.”
Also around this time, Elizabeth got mumps (despite having been vaccinated) followed by pneumonia, which was serious for the little girl and had potential ramifications for Dave too. And then as if to add injury to injury, she broke her arm playing at creche.
“They told me and I just went ‘f*ck!’” Lisa laughs now at what has to be the worst run in history. “At least, we went on to win the lottery. The liver lottery.”
“They think they have a liver”
It was three in the morning when Lisa and Dave said goodbye.
Dave’s health from this time deteriorated dramatically. His body was ransacked by treatments, he had contracted an infection and was receiving blood transfusions, infusions of powerful and aggressive antibiotics, they drained him which relieved some of the pain but it seemed he was inching towards the final stages. An ever-present anxiety for prospective transplant recipients is that their health will fail to the point that they are no longer eligible for a healthy organ.
“I was at home, he phoned me and said ‘they think they have a liver’ I said what do you want me to do?” she laughs at the memory. “He goes ‘eh, can you come down to the hospital please?!”
The night wore on with no word as to whether the transplant would go ahead or if Dave was well enough to undergo the surgery. Finally at half one they started getting him ready X-rays, swabs, tissue tests and eventually they wheeled him down to the operating theatre.”
It was three in the morning when Lisa and Dave said goodbye.
Everything is unknown in an operation of this magnitude. If any cancer is visible when the surgeons go in to operate, that is game over and the organ will go to another recipient.
“At all the stages, the coordinator rang. When they’d opened him up, when the transplant had been given the go ahead. They were very matter of fact. They said ‘Dave’s gone to sleep and he went very peacefully.’ It was so strange.”
Dave in the ICU shortly after the surgery.
“We had confidence that this would go ok. His consultant was on the night this all happened. There’s no coincidences in this thing. I felt there was a reason it was happening the way it was happening. Even saying goodbye. I said ‘I’ll see you tomorrow. Tonight is the end of this and you’ve done amazing. Tomorrow is the start of a different journey’ We kissed and that was it. It was weirdly calm.”
The surgeon rang straight after to say all had gone well, though the procedure had been more complex then first imagined. It had been a seriously close call.
“He said if that liver hadn’t come in last night. His gallbladder would’ve had to have been removed and Dave would’ve been taken off the transplant list. Probably for good.”
Dave stayed in an induced coma for about 24 hours afterwards. After the transplant, Dave who had been fit going into the ordeal – which was one of the key things that help Dave qualify for transplant – could barely stand up. He rehabbed well with the help of the physio team and a personal trainer. Now Dave, under medical supervision has undertaken rowing 1,000,000 metres to honour his donor.
“I knew he was getting better when he started to piss me off again!” she grins. “Our relationship is exactly the same as before, we still bicker about the same stuff but… we are so blessed – in the most literal sense of the word – to still be here.”
Now Lisa is studying with a view to possibly taking her work in a new direction.
“I think the ramifications of what we’ve been through will have shockwaves possibly for the rest of our lives. Sometimes it takes big things like that to make you realise what’s it all about?”
Visit the Irish Kidney Association
To help Dave raise money for cancer research and the transplant programme in Ireland, visit his GoFundMe page.
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