Bank Holiday Blues

Bank Holiday Blues

Today was a Bank Holiday in Northern Ireland. Bank Holidays, like Sundays, can be very painful, because they are family days.

Sundays used to be my favourite day of the week, now they’re the most difficult, the day when the empty chair is at it’s most conspicuous.

I concentrated on keeping myself busy today, trying to do housework and sort through stuff, choking back the tears.

When Leah and I came back from Bristol, there was only enough of the new house ready for her and I to move in. Then on Christmas Eve, the rest of the family joined us, but there wasn’t any time to move all of our belongings from the old house to the new house.

Three days later, Leah was admitted to hospital and subsequently died, so nothing ever got sorted. We just fetched items from the other house when we needed them – if we even remembered what we had!

To be honest, I find it very painful to go into our old house now, too many memories. To make it easier for me, Horace goes up and fills a box of stuff from the old house and brings it down for me to sort.

Some stuff goes in the bin (or the fire), some goes to the Charity Shop and some gets kept. The trouble is, everything has a memory  attached to it.

Today while sorting, I found pages of Leah’s homework, along with a long list of who she was buying Christmas presents for in 2012 and the consent form that she signed when she was having her eggs harvested in 2013.

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Nearly makes me think that the gypsies have the right idea – when one of them dies they usually burn their wagon.

After my Mum died I couldn’t face clearing out her house, so my husband went and did it in my place. I appreciated him doing that so much. I really think that sorting through somebody’s possessions after they’ve died is one of the most painful things ever.

I will be glad to get to my work tomorrow for a ‘break’. Work is the one area of my life that is more or less still the same as it was before Leah’s illness and death. There’s a comfort in that.

I loved my job before Leah took ill and thankfully I still love it.

The demands of my work and the busyness, provide a very welcome distraction for a few hours, three days per week.

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Who You’d Be Today

Who You’d Be Today

I came across this song on a Facebook site for parents bereaved through cancer:

“Who you’d be today”

by Kenny Chesney

Sunny days seem to hurt the most.
I wear the pain like a heavy coat.
I feel you everywhere I go.
I see your smile, I see your face,
I hear you laughin’ in the rain.
I still can’t believe you’re gone.

It ain’t fair: you died too young,
Like the story that had just begun,
But death tore the pages all away.
God knows how I miss you,
All the hell that I’ve been through,
Just knowin’ no-one could take your place.
An’ sometimes I wonder,
Who’d you be today?

Would you see the world? Would you chase your dreams?
Settle down with a family,
I wonder what would you name your babies?
Some days the sky’s so blue,
I feel like I can talk to you,
An’ I know it might sound crazy.

It ain’t fair: you died too young,
Like the story that had just begun,
But death tore the pages all away.
God knows how I miss you,
All the hell that I’ve been through,
Just knowin’ no-one could take your place.
An’ sometimes I wonder,
Who you’d be today?

Sunny days seem to hurt the most.
I wear the pain like a heavy coat.
The only thing that gives me hope,
Is I know I’ll see you again some day.

I think it was the line “I wonder what would you name your babies?” that really got to me.

Leah loved babies and children so much.

Despite having just been diagnosed with myelodysplasia and monosomy 7 and being in the middle of her GCSE modular exams, Leah became the first female in N.I. to have her eggs harvested (egg cryopreservation) on the NHS, in a process similar to IVF.

Our gynaecologist told me she was at a conference in England last year and none of the other gynaecologists there knew of someone as young as 15 having their eggs harvested on the NHS in the UK.

We are however aware of a young girl in America with a similar diagnosis to Leah having her eggs harvested at 14.

Our consultant in Bristol was very impressed at how promptly Leah was attended to by the Regional Fertility Clinic here in N. Ireland.

Leah received her diagnosis on Friday 19th April and had her first appointment at the Regional Fertility Clinic in Belfast on Monday 13th May ’13.

I’m not sure how Leah felt about this appointment but I found it hugely traumatic.

The next day she sat her GCSE biology modular exam in which she got an A*.

I got the impression that in England the long waiting times for an appointment would make it difficult if not impossible for many girls/women to have their eggs harvested, as delaying their chemotherapy would be too risky.

Leah’s eggs have now been destroyed as per UK law.

I write more about Leah’s egg harvesting experience here: The Loss of Innocence

Leah with her cousin's child Timothy - she absolutely adored him ❤️
Leah with her cousin’s child Timothy – she absolutely adored him.
She was always so focused

She was always so focused

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Today by date and yesterday by day was Leah’s first appointment at the Regional Fertility Clinic in Belfast to see about getting her eggs harvested to preserve her fertility. This first appointment and the subsequent ones were very traumatic for both of us. However, the possibility of being able to have a baby in the future was so important to Leah and she wasn’t prepared to sacrifice her fertility no matter how difficult the process.
After this first appointment, I took her to Pizza Hut in Victoria Square as I knew that she would consider this a big treat.

 

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As we walked past the shops in Victoria Square I could feel waves of emotion crashing over me but for Leah’s sake I had to stuff my feelings down and keep them hidden. While waiting for food to be served our consultant haematologist phoned and I left the restaurant to take the call as it was very noisy.

 

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He asked me something that I needed to check with Leah regarding the answer but I was so distressed and confused that I went back into a different restaurant to look for her and wondered where she had gone! Then I realised my mistake.
We had travelled to and from Belfast by bus, partly because I hate long distance driving and partly because I was so distraught by all that was happening that I didn’t feel capable of concentrating on driving in City traffic.

 

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Leah had her biology GCSE modular exam the next day and was revising for this. On the bus home that evening Leah got me to ask her questions from her revision notes to help her.
She got an A* in this exam – she was always so focused!

The Loss of Innocence

The Loss of Innocence

Another stage on this journey that I couldn’t post about while Leah was alive was the harvesting of her eggs from her ovaries in June 2013 – a procedure that was intensive, invasive, exhausting and painful and one that tore at my heart as her mother.

As soon as Leah heard that the chemotherapy cocktail she was to receive would leave her infertile she wanted to know how her fertility could be preserved.

Anyone who knows Leah knows that she adored babies and children. At her request she was referred to the Regional Fertility Clinic in Belfast and we were subsequently told that she was the first woman in Northern Ireland to have her eggs harvested (cryopreservation) on the NHS, as well as one of the youngest in the U.K..

It was a process similar to IVF and Leah had to give herself two hormone injections per day for around 10 days and attend the RFC at the Royal in Belfast on alternate days during this time for scans of her ovaries. This necessitated a 140 mile round trip each visit.

We spent up to 3hrs in the Waiting Room of the Fertility Clinic waiting on blood results on the days we attended, interspersed with trips over to the main hospital for an ice-pop – Leah loved ice cream.

We must have looked a strange sight – a menopausal women and a young teenage girl – surrounded by anxious couples holding hands, desperately hoping that medical intervention would enable them to produce a beautiful little baby.

We never communicated with any of these couples nor they with us – we didn’t belong in their world and they didn’t belong in ours.

We looked for the quietest corner of the waiting area and Leah used this time to study for her GCSE maths module exam on the 11th June (in which she achieved 100%).

I marvelled at Leah’s calmness and composure and her ability to focus.

I remained calm on the outside for her sake, but inside my heart was breaking, because my daughter was having to grow up so fast and deal with so much.

The days that we didn’t have hospital appointments I spent prolonged periods of time reading my Bible and praying and seeking God for the strength to become the Mum that Leah needed me to be.

Eventually on Wednesday 5th June 2013 the day came for Leah’s eggs to be harvested under deep sedation, but the anaesthetist was nervous about Leah’s low blood counts. What should have been a 2 – 3 hr hospital visit turned into an all day stay, with the consultant wanting to admit Leah overnight for observation and Leah insisting on going home.

Leah was taken to the operating theatre in the Maternity Suite. I sat quietly in the Waiting Area, alongside relatives of women having babies.

When the procedure was finished the doctor came out and cheerfully called over to me “Everything went very well.

As soon as the Dr disappeared, some grandparents sitting nearby beamed at me and cheerfully said “congratulations“. I took a deep breath and replied “It’s not what you think” and explained our situation as best I could. The woman took it not so bad but I could see that the man was really struggling with what he was hearing.

Leah had 22 eggs harvested from her ovaries, 18 of which were described as being of “good quality”. The staff were all amazed at such a good result. We had to sign a form to say that if Leah died then her eggs would be destroyed.

Leah wasn’t allowed to take the stronger pain relief normally used in those circumstances due to her low blood counts. She had quite severe abdominal pain for several days afterwards as her body gradually returned to normal.

The painkillers that she was given made her vomit and caused gastritis. Her greatest ease came from a hot water bottle.

On Friday 7th June Leah took part in the Presbyterian General Assembly Youth Night in the Waterside Theatre as part of the LOST team.

I’m sure very few if any of the people there knew how unwell she was feeling, but it was so important to Leah to be able to honour all her commitments, especially those connected with her Christian faith.

This photo was not taken that night but at a previous L.O.S.T. event that Leah took part in.
This photo was not taken that night but at a previous L.O.S.T. event that Leah took part in.

The staff who attended to Leah at the Regional Fertility Clinic were absolutely lovely and the Dr there told me since that she was “so impressed with Leah’s strength and maturity in dealing with her situation“.

I am so proud of Leah but I know that she herself would not want to take the credit for her strength, but would say that the secret of her strength was in her daily walk with God.

During the times this past year when Leah was too weak and ill to lift the Bible to read or to pray she always ensured that I – or Nic, her boyfriend – read to her and prayed with her.

2 Corinthians 12:9
‘Each time He said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.’

Another song that Leah and I liked was

Your grace is enough” by Chris Tomlin