Brokenness

Brokenness

I recently received a lovely encouraging message regarding my blog, from a mum whose son is in remission from his cancer treatment. She told me that although she feels blessed that her son is doing so well, she feels broken from her experience.

The brokenness – oh how I remember this brokenness that she’s talking about.

Although Leah was terribly homesick and desperate to get home, there was a part of me that wanted to stay in Bristol forever.

After spending 14 weeks immersed in the world of childhood cancer, I felt forever changed by what had happened. I felt like I didn’t know how to return to the outside world, or how to relate to those who hadn’t experienced our journey – Sam’s House just seemed a comfortable place to be, where no explanations were ever needed.

The medical expertise to understand and treat Leah’s rare condition lay in Bristol Children’s Hospital. I somehow imagined that if I could keep Leah there forever, then maybe we could beat this disease and all the nasty side effects of treatment. We had formed such close trusting relationships with the staff looking after us.

However the deaths of other children/young people who were in the transplant unit along with Leah, had a devastating affect on me.

I was also distressed about the children and young people dear to us who were still very ill in hospital, or who had just received bad news regarding their prognosis.

I returned from Bristol a broken person.

I felt like we were soldiers returning from the war, unable to celebrate our survival, because of the loss of much loved comrades who had fallen in the trenches.

I worried that people just expected me to be happy and grateful, because Leah had come through her bone marrow transplant and we were home at last.

I did feel thankful, I was very glad that Leah and I were home, but I also felt broken.

I had learned the horrible truth that calpol didn’t actually fix everything.

Nor could I ever again look at bruising on one of my children, without thoughts of leukaemia crossing my mind.

I could no longer treat illness in one of my children with casual nonchalance and tell myself “Ah sure, they’ll be grand.”

I was living in a state of high alert, with an overnight bag for Leah and I packed and ready at all times. If I heard her up to the toilet during the night I became anxious – her health was so fragile. I knew that if she spiked a high temperature, we had approximately one hour to get her to the hospital and on intravenous antibiotics.

I felt absolutely exhausted and totally lacking in energy.

I had no idea how to explain to people how I felt, or how to start rebuilding my life and my sanity.

On the 12th December 2013 I wrote in my journal “There are many days when I experience intense emotional pain. I want to be a walking example of the ‘joy of the Lord’ but I’m haunted by images of sick children.”

Then I wrote out a quote by Jerry Sittser that I had read the night before, that had resonated with me:

I did not go through pain and come out the other side; instead, I lived in it and found within that pain the grace to survive and eventually grow.” ~ A Grace Disguised.

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Farewell Jack ❤️

Farewell Jack ❤️

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One of the things that I loved about our Bristol experience was the peer support.

Although Leah was only 15, she was cared for in adult services here in Ireland. Usually when she attended appointments here, the other patients we met were older than me.

In Bristol, Leah was cared for in paediatric services that catered for young people up to the age of 18. We also spent a lot of our time in the Clic Sargent Hostel, Sam’s House, that accommodated seventeen families and young people up to the age of 24.

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That’s where we met Jack Jordan. There were three young adult men, all with a blood cancer, all staying in Sam’s House and attending the Oncology/Haematology Unit at the Bristol Royal Infirmary – the three musketeers.

This was a different unit to where Leah received her treatment, but back in Sam’s House in the evening, I would hear them laughing and joking about their latest escapades.

Matt, Pete and Jack
Matt, Pete and Jack

Jack was the quietest of the three, but he enjoyed their companionship.

Leah used to worry about Jack because he was so quiet. Jack was so pleasant and well mannered, as were all three of the young men.

I have a lovely memory of Jack and his Nan having tea with Leah and me one evening in Sam’s House. Leah and I were so far from home and family that our friends in Sam’s House became our temporary family.

After Jack relapsed in December 2014, we started talking via Messenger. He said he could remember us trying to feed him pizzas and take-aways at Sam’s House. That made me laugh – that would have been Leah and me alright!

Then he said the most beautiful things regarding my daughter: “Leah was always nice to me and had a great smile! Made me feel welcome and a friend.”

What beautiful words for a young man who was ill, to say regarding another young person who had also been battling a life threatening illness. Jack’s words really blessed me – letting me know that my daughter’s kindness had touched his heart.

I know how much Leah had cared about each and every child and young person that she met during her illness and how each and every one was faithfully prayed for by name each day. This is an excerpt from her prayer diary:

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Earlier this year, Jack was expecting to be going for a life-saving transplant and we continued to talk via messenger.

He’s such a gentleman, he invariably replied to my messages with something like
Thank you for all of your prayers and kind words Vicky you have really helped me a lot

I had left Bristol before Jack and Laura got together, but he told me how happy him and Laura were and how much he loved her:
Laura is amazing I love her and am so happy we are engaged ❤️”

Then, on the 14th April, Jack sent me the saddest message of all:
Hello Vicky. I just wanted to tell you my cancer has come back and there is nothing they can do for me now. I’m getting married on Thursday 😊 I just wanted to say thank you for all your care, support and love you’ve shown me x

Despite the sadness, I was so excited that Jack and Laura were getting married. I would have absolutely loved to have been there. I poured over every wedding photograph, along with members of my family.

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16th April 2015

Then, on Monday 20th April, I received my last message from Jack: “I’m just tired all over vicky ❤️”

I knew what that meant, I could read between the lines.

Today, Jack’s wife Laura, her little girl Lily, his family and his friends, said farewell to somebody very dear, somebody whose passing will leave a gaping hole in the lives of those who were closest to him.

Even though I’m a nurse and at the time of Leah’s diagnosis, I was sharing an office with the Community Children’s Nursing team who look after children and young people with a cancer diagnosis, I had somehow thought that nowadays cancer in children/young people was almost 100% curable.

Well I certainly got that wrong – very wrong.

Yes, thankfully, very many children and young people do survive, but the treatment journey can be long and gruelling. Some are taken by the illness, while others, like our daughter, are taken by the side effects of their treatment.

Those of us who are left behind then begin a different journey – the painful road of loss, of grief and of mourning.

At first, those closest to the loved one, may have the edge taken off the intensity of their loss, by the numbing effects of busyness and exhaustion.

However, as days become weeks and weeks become months, the harsh reality sets in.

We have loved and we have lost.

Those who have loved much will grieve much, indeed grief is the price we pay for love.

Those of you who are parents of young children will no doubt be familiar with the popular story We’re Going on a Bear Hunt by Michael Rosen.

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There are two lines in this story which, in my opinion, describe the process of grief very accurately:

Can’t go around it
Gotta go right thru it “

No matter how painful grief is, unfortunately there’s no way round it, we’ve got to go through it.

The best we can hope for, is friends and family who will journey with us and a God who cares.

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