Wednesday 24 Mar 2021
Rob looks back at the time that he and his wife, Moira, were dealing with the harsh reality of her rare cancer diagnosis, the importance of their first visit to Maggie’s and the 'Moirathon' he did with his sons.
It’s hard to express how much it throws you – the emotions the diagnosis releases, the fear – for the boys, the family and everything.
My wife Moira was diagnosed with a very rare and difficult type of cancer. We were so lucky the day after we found out, a nurse at the oncology department advised us to visit Maggie’s.
I don’t know how we would have coped if she hadn’t said that.
When we went in, we were met by somebody who understood it, got it, and took that weight from us. And it just lifted something. It made it a little bit less scary.
The magic of Maggie’s is just that initial understanding and sanctuary, and relief from terror.
Our situation was quite different to what I imagine most people go through. Moira’s initial diagnosis was terminal. Hope was taken out of the equation right at the start. We were dealing with awful certainty, and any journey we were to take was a journey back to hope for the future.
It was a very, very rare cancer in Moira’s pancreas which was only spotted thanks to our GP conducting extensive tests.
By the time it was diagnosed as a neuroendocrine tumour it had already spread extensively to her liver. Her healthy lifestyle had helped her body adapt to the effects of the cancer, masking its symptoms.
The tumours were also producing their own hormones, and around three months after diagnosis this led to complications with Moira’s blood sugar which rapidly became very difficult to manage.
Usually, these kind of tumours spread or they produce hormones. Unfortunately for Moira, hers did both, and our consultant said he had never seen anyone suffer both aspects so profoundly.
Moira was given six to 12 months to live. In the end, she lived for nine. Hearing that was so stark, but in the end it was ultimately helpful.
We were at rock bottom to begin with; everything that happened after that was a lift.
Dealing with the harsh reality meant we were able to come to terms with it, and build towards hope from there.
I can trace that all back to that first day at Maggie’s. Without Maggie’s being there, to easily sort things out and have the right people in place, I wouldn’t be in the position I am today.
"We knew we weren’t alone and that there was wider help there for us. That was such a positive change."
There was a will-writing service in the afternoon. Our biggest concern at the time was what on earth we could do to make sure that everything was sorted for the future. In Maggie’s, we found people that could help.
The will-writing was sorted within an hour.
So two huge things were taken care of on day one: we knew we had support, and our affairs were then organised in such a state that we had choices about what to do next.
When it was clear that I needed time and space after Moira’s death – I could afford to take the time to do that.
That set us on the right path to where I am now.
Every family is different and there’s no right way or wrong way to go about these things.
When we were talking to friends, separately and together, we were amazed at how many people shared a story from their personal experience about losing a parent when they were young. Those discussions helped us to decide how we could be there for our boys.
Moira didn’t collapse in on herself after her diagnosis – she stayed interested in other people. And she had peace at the end.
She bore what happened to her remarkably well, stayed positive and she helped set me and our boys up for the future.
We brought the boys into what was happening at quite an early stage and quite gently.
And we worked through it in stages so that when it came to the hardest times, and we could start seeing physical changes, they were able to absorb it and deal with it, and be part of the process.
A consequence of that – very importantly – was that the boys were able to support me while I was having to administer injections, or in the instances where we had to call an ambulance, they would make the call, wait outside for help to come and be there to support their mum.
So it was an experience we shared. At times it was terrifying but we shared it.
Then when Moira was receiving palliative care, the boys were able to make the most of that time.
They were able to be with her at her bedside.
What we wanted to achieve was that when they get older, they wouldn’t feel like they weren’t appropriately present, or shut off and excluded, or have questions about why things happened. We wanted to give them enough of an opportunity to be part of it.
It means their mum still feels very present to us. We don’t feel like we can’t talk about her.
We can let grief unfold however it’s going to unfold. We’re not scared about it, or scared to talk about it.
And they both open up in different ways, so I feel I can check in with them.
I’ve received support from them in some of the choices I’ve made – to leave one job without another to go to, to getting another job that involves a big change for all of us, moving from Edinburgh to Orkney, where I’m from.
We’ve been making decisions together.
When I was talking about the job, our eldest son Euan said – “I can see it’s right for you, and I’m ok with that”.
We’ve always been a family that goes through things together. And that process of involving them has been so helpful in finding a path through.
Fundraising helped us so much. It gave us the space to do something for ourselves, and gave the boys motivation to do something for other people.
We called it the Moirathon – 5K runs every day for over a month.
We covered more than 100 miles, running different routes each day, spending time together and being active.
540 people donated, and we raised over £20,000 (including gift aid).
We started the runs when Moira was in hospital at the Western General, and would often start and end the runs at the Maggie’s centre within the hospital grounds.
We created some wonderful memories together over what otherwise would have been a tricky period.
The benefit was enormous. It was wonderful to generate the support and awareness and funding, and what was so unexpected was the space that it gave us.
The motivation to go out every day together, and while we were out to talk to one another – that was invaluable.
I visited the Edinburgh centre with the boys to record the film with Maggie’s after Moira’s death.
When I watched it back, it was the first time that I really cried. When you see yourself talking about something, you can’t deny that it’s happened.
I saw how part of me was trying to insulate another part of me from the enormity of what happened. It is really important to stay positive, but equally you have to let yourself feel not positive as well.
Watching that video was really instrumental for me to connect to what happened – which led to other decisions about what I actually wanted to do, what mattered, and where I was going.
Making the film was an important step along that way – without it, it would have been harder and taken longer to find my path.
The ability to see yourself, and step back, to see what’s happened, and make a change.
The danger was that I didn’t manage to move on. The film helped me catch myself before I fell apart, and I used that to recalibrate for the future.
The future feels very different now – positive, engaged and not without optimism. I’m grateful to Maggie’s and I’m looking forward to things again.
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Last review: Jun 2023 | Next review: Jan 2024
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