Shopping in Belfast

Shopping in Belfast

Before Leah became ill I had never driven the 140 mile round trip to Belfast. Leah’s illness obliged me to acquire that skill, but I only know one route – the one from our house to either Belfast City Hospital or the Royal.

I wanted to spend a day in Belfast with our eldest daughter before Christmas. Conveniently for me, she lives quite near Belfast City Hospital.

Yesterday was Friday, the day that Leah and I always spent at the City Hospital from we returned from Bristol until she died. I left the house at the time that Leah and I always left and drove the same roads, only this time I was alone.

Unusually for me, I kept the music off in the car for the entire 70 mile journey – I needed to be alone with my thoughts and memories.

I drove on to the motorway and remembered how on Friday 27th December 2013 Leah suddenly became violently ill at that stage. Once the vomiting had stopped Leah insisted that she wasn’t sick, that she had merely drank some water too fast. She desperately wanted to be able to attend a large family get together in Donegal that evening.

On the outskirts of Belfast I passed the sign for Belfast Zoo and remembered how Leah longed to visit either Bristol Zoo or Belfast Zoo during her illness. Finally on Friday 13th December our Belfast haematologist told Leah that her immunity was now strong enough for a zoo visit. However, by this time Leah had developed a spontaneous spinal fracture and she would have needed to go in a wheelchair. She was in a lot of pain and could only walk short distances. Leah became ill and died before there was time to organise this.

As I drove into the many lanes of Belfast traffic I remembered how Leah used to look at the map that my husband had drawn and how her gentle calming voice ensured that I was always in the right lane.

Yesterday I prayed and asked God to help me.

I passed the turn off to the City Hospital at the same time as Leah and I would have taken that turnoff this time last year.

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You might wonder why I do these things, why I expose myself to this pain instead of running away from it? It’s just my way of processing it all, because sometimes I still can’t even believe that all of this has happened. Sometimes I feel as if a part of me is still in shock. The trauma feels too great for my mind to comprehend.

In December 2012, three weeks before her first blood test – the one that changed everything – Leah posted these amazing song words on her Facebook page:

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Rachel and I spent a lovely day together in Belfast. The last time I shopped in Belfast at Christmas time was in the 1980’s. Rachel got various bits and pieces. I spent all of £1.99 on a pretty candle holder – I love scented candles.

We had our lunch in Cosmos – I hadn’t been there before but Rachel described it to me as being similar to ZaZa Bazaar, a restaurant in Bristol that I particularly liked. I really enjoyed the main course in Cosmos, but for desserts the rice pudding and whipped ice cream in ZaZa Bazaar wins hands down.

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Rachel came back to Derry with me and she drove thankfully – I was feeling quite exhausted at this stage. Once home we did a bit more shopping from the comfort of the couch in front of a nice warm fire.

We must have done something right – she was always smiling!

We must have done something right – she was always smiling!

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Thank you to everyone who prayed for Horace & I and sent us encouraging messages for our first return visit on Tuesday past to Belfast City Hospital.

We arrived just after 8am & left again around 1.30pm. We were well supported by our TYA (teenage & young adult) cancer nurse specialist & by Horace’s sister Evelyn.

We initially spent quite a while with our Bristol haematologist & our Belfast haematologist. Then Horace & Evelyn went off for a walk in the sunshine while I went “walkabout” in the hospital with our TYA nurse.

She and I visited the Bridgewater Outpatients Suite & ICU & some other places. I was able to show my appreciation to some of the many staff who had been very kind to us.

When I was thanking the nurses in ICU one of them remarked “We must have done something right, for she was always smiling!” It was true – as Leah lay in ICU on a ventilator, she smiled and laughed and hugged people she cared about and told us that she loved us. If she caught me looking sad she pulled up the corners of my mouth into a smile with her fingers. She radiated joy and peace. She knew that death was a possibility and she was ready to meet God.

I had some very positive conversations on Tuesday with various members of staff who were involved in caring for Leah. Although difficult and painful for me, it was also very healing.

An extra bonus before leaving the hospital was a meeting for coffee with a mum from Ballymena whose child had a bone marrow transplant in Bristol around the same time as Leah. Her child is slowly recovering. My friend and I had a great chat, we had so much catching up to do.

Horace & I then met with our eldest daughter Rachel for lunch in the nearby “Mad Hatter” cafe that we used to go to when Leah was with us. Some of the staff recognised us and sympathised with us on our loss.
I really felt upheld in prayer throughout it all and I felt a deep sense of peace in my heart – thank you all so much.

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The main purpose of the meeting with Leah’s Bristol haematologist & her Belfast haematologist was to discuss the findings of the mini post mortem that had been done on Leah’s lungs.

After Leah died a biopsy was done on Leah’s lungs and a tissue sample taken. I wasn’t overly hopeful that there would be any major revelations from this. I was just hoping that there would be no “nasty surprises” i.e. I was hoping that the pm would NOT tell us that Leah had in fact died from an illness that could have been prevented or treated, if it had been diagnosed in time.

From that point of view it was “good news” – they tested the tissue sample from her lungs for everything they could think of testing for and EVERYTHING came back negative, so Leah’s cause of death remains “idiopathic pneumonia syndrome”.

Wikipedia describes this as follows – “Idiopathic pneumonia syndrome is a set of pneumonia-like symptoms (such as fever, chills, coughing, and breathing problems) that occur with no sign of infection in the lung. Idiopathic pneumonia syndrome is a serious condition that can occur after a stem cell transplant.”

The doctors on Tuesday gave us all the time we needed – we discussed lots of different aspects of Leah’s illness and we talked about our memories of Leah herself too.

"I only have eyes for you"
“I only have eyes for you”

Leah had a GATA2 gene mutation – this type of genetic defect is rare and was only first discovered late in 2011. Leah was the first person in the UK to be identified with her particular variant of it. Leah’s bone marrow transplant cured her myelodysplasia and monosomy 7 but could not eradicate the underlying genetic defect and Leah understood this.

After her transplant Leah asked Dr C what other ways this genetic mutation could affect her body but he explained that as research into GATA2 genetic defects was all so new that this information did not exist as yet but as it became available from other parts of the world then he would pass it on to us.

I have now asked Dr C that as future discoveries enable them to retrospectively make sense of the jigsaw pieces of Leah’s various symptoms and complications that he will come back to me and tell me, as my brain likes to make sense of these things. In particular, the spontaneous spinal fracture that Leah experienced after only 3 months on steroids is not fully explained. Her steroid therapy had actually been discontinued the month before her spinal fracture was even diagnosed.

Nevertheless Leah has now received the ultimate healing and is rejoicing forevermore with her Saviour in heaven. I like to listen to these words by Matt Redman and imagine what it’s like for Leah to no longer have a broken body –

“Endless Hallelujah”

“When I stand before Your throne
Dressed in glory not my own
What a joy I’ll sing of on that day
No more tears or broken dreams
Forgotten is the minor key
Everything as it was meant to be

And we will worship, worship
Forever in Your presence we will sing
We will worship, worship You
An endless hallelujah to the King”

Psalm 116:15-17 Living Bible (TLB)
His loved ones are very precious to Him, and he does not lightly let them die.”

On Thursday 22nd May ’14 some special people have arranged to take me to see/hear Matt Redman playing live in Belfast – I’m so excited but I know it could be emotional too.