Charlie the cat

Charlie the cat

Today the sun is shining and that initially had me in floods of tears……whenever the sun shone Leah used to climb out the bedroom window onto the flat roof of the boiler house and sit there to study or read a good book.

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Her much loved cat Charlie usually lay sprawled out beside her. Charlie also slept in the bed beside Leah every night. Leah called him “my chicken” and hugged him tight and told him her secrets.

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When she was upset his fur soaked up her tears. While in the transplant unit Leah used to look at photos of her cat and tell me how much she missed him.

Then the day came when my husband phoned me and told me that Charlie had been killed on the road. It nearly broke my heart to have to tell my very sick child that her cat was dead.The light seemed to disappear from Leah’s eyes and she hardly spoke for three days.

We were in Bristol Children’s Hospital and the Irish Sea separated us from our home in N.I.. Leah was being nursed in isolation. Oh how very much I wished I could take away the pain of her homesickness, the symptoms of her illness and her grief for her much loved cat who had been her constant companion and a huge source of comfort to her.

Sadly I could do none of these.

All I could do was be there for her, quietly supporting her, praying for her and with her, and reading the Bible to her when she asked me to. Like so many times in this illness journey, my heart was breaking for my daughter.

Eventually Leah began to smile and laugh again and we shared our silly jokes & funny stories. She was such good company. She knew that the source of her strength was in God and there wasn’t a day went by that she didn’t want me to read and pray with her.

A friend had sent us a little book called 50 Days of Hope – Daily inspiration for Your Journey Through Cancer by Lynn Eib. The nights that Leah couldn’t sleep because of the side-effects of steroid therapy, she would lie in her bed while I held her hand and read page after page aloud from this little book – it encouraged both of us.

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Sometimes her eyes would close and I would stop reading, thinking she had gone to sleep, feeling quite exhausted myself, then Leah’s eyes would flick open again. I would smile to myself, remembering days & nights spent rocking one of my colicky babies in their pram – their eyes also sprang open the minute my tired arms stopped propelling the pram backwards & forwards over the door saddle in a desperate attempt to soothe my fractious infant.

When exhaustion prevented me from continuing to read to Leah I snuggled up beside her in her hospital bed and cuddled her until she fell asleep. Then I would get out and lie in my own comfy bed which was almost beside hers.

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I slept quite well in Bristol, secure in the knowledge that whenever my daughter needed me I was right there beside her. Secure also in the knowledge that if we needed medical help, we were in the care of some amazing nurses and doctors.

So many memories.

It must have made the nurses smile :)

It must have made the nurses smile :)

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When I got into the lift on the ground floor of Bristol Children’s Hospital it was often crowded, but there wasn’t usually too many left in it by the time it reached the top floor of the hospital.

This 7th floor housed the paediatric oncology unit, the bone marrow transplant unit and the Adolescent Ward.

Sometimes as I looked at those who stayed in the lift till the 7th floor I could just tell by their drooping shoulders that this was a “cancer mom”.

Within minutes we would be exchanging personal information of greater depth than we would normally tell close friends and family.

We were in this together and close bonds were quickly forged.

I remember on one occasion getting into the lift on the ground floor with a total stranger.

As the lift approached the 7th floor I discreetly glanced at her and just knew by her posture and facial expression that her child had cancer.

I introduced myself as another mom.

Her pretty teenage daughter had recently been diagnosed with a rare type of bone cancer & was facing a below knee amputation. They hadn’t yet been able to bring themselves to tell family members about the amputation that would take place within weeks.

My heart ached for their pain.

As parents we were expected to be quite independent in caring for our children & this suited me well.

On the adolescent ward this included stocking up on disposable receptacles to catch bodily fluids, marking them with our child’s name & room number & returning them to the sluice after use.

It used to break my heart when I went into the sluice and saw the many bowls of vomit from all the children and teenagers on chemotherapy.

However in the midst of it all, to brighten things up, a lot of the kids/parents used to “personalise” their disposable vomit bowls & other receptacles before they used them!

Leah and I weren’t very artistic or imaginative in our decorating compared to some of the ones I saw.

It must have made the nurses smile as they saw all the different cartoon drawings & reflected on the strength of human character in the midst of sadness and suffering.

I guess it’s another way of tracing rainbows through the rain.

The Many Faces of the NHS

The Many Faces of the NHS

image When Leah was diagnosed and we had our first appointment at Belfast City Hospital, we received no emotional support, no information re Clic Sargent or Macmillan, offered no access to pastoral care or counselling, no leaflets, no helplines, nothing, zero, zilch, not even a cup of cold water. We were told the worst possible information about our child and her prognosis, so that we feared for her very life and were then sent home with an “I’ll be in touch” from the consultant.

I continued going to my work (in the NHS) in a vain attempt to keep things as normal as possible.
One day, about a week after this appointment, I was driving to work when my car broke down in the flow of traffic and I broke down too.
A stranger parked his car some distance ahead and started walking back towards me. My car was broken down in the middle of the road & I was sat behind the wheel sobbing hysterically, with cars backing up behind me.
I remember watching him through my tears, thinking “I don’t know what you are going to do with me when you get here because I have completely lost it.”
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I continued trying to start the car and mercifully for both me and the kind stranger, the car started and off I went.
I subsequently pulled in to a lay-by and phoned the Haematology Nurse Specialist at Altnagelvin, our local hospital, where Leah had been having haematological investigations for three months prior to her diagnosis.
I asked if I could come and see Leah’s consultant there to discuss our non existent psychological care post diagnosis. She checked with him and gave me an appointment for 2pm that afternoon.
I continued on to my work and did three home visits with the car – and me – breaking down at frequent intervals in between.
Eventually at midday the car completely gave up on a busy dual carriageway and I managed to steer it into a nearby car park.
I was by now in a very distressed state.
A work colleague came and sat with me until my husband and the roadside recovery truck arrived.
The roadside recovery man started asking me questions about what was wrong with the car.
At this stage I was really past it and I just looked at him with swollen eyes and said “I don’t know what’s wrong with this car…..all I know is that my child has cancer.” and then I walked away from him.
Horace, my husband, hadn’t witnessed this conversation, but the poor roadside recovery man must have been very upset because I remember Horace asking me afterwards in a very worried tone of voice “What did you tell that man?”
Horace left with the Roadside Recovery man. I took Horace’s car up to the hospital for my appointment.
I then spent two hours with the nicest, kindest, most understanding nurse and doctor you could ever wish to meet.
They listened to everything I had to say. The doctor himself insisted on being the one who brought us refreshments.
They referred our family to various support agencies. The doctor reframed some of the things the other consultant had told us in a way that was easier to bear.
I didn’t want false hope – I always prefer the truth – but there can be ways of telling the truth that are less painful for people to hear.
I felt heard, understood, cared for.
I could see that there was a way forward.
I went out to the car park and Horace’s car wouldn’t start……..and we had no roadside recovery on this car. I started crying again.
My mobile phone was almost dead.
A friend from church (who works in the NHS) appeared and phoned an old friend of ours who works at cars. Another work colleague came and sat with me till I got sorted out.
Inwardly I prayed “Lord, if you will just let me get safely home this day I promise I won’t even attempt to leave the house tomorrow – I understand now that I’m not fit to go to my work!”
Subsequent to this while at one of our “egg harvest” appointments at the Royal Hospital in Belfast, Leah suggested that we visit the Macmillan kiosk there. It was their advisor who informed us that Belfast City Hospital has a Clic Sargent Social Worker and a Teenage and Young Adult (TYA) Oncology Clinical Nurse Specialist. The Macmillan adviser was really lovely and she put us in touch with them.
We got brilliant support in Belfast City Hospital from then on. I also sought and was given firm assurance that systems were being put in place to ensure that no family of a young person receiving a cancer diagnosis would ever again be left bereft of support as we had been.
Incidentally, Leah always said that she liked our consultant in Belfast and she always spoke well of him.
I grew to like him. He obviously got it wrong that first day as far as our psychological care was concerned, but he turned out to be a very kind, caring, respectful, knowledgeable, hardworking and conscientious doctor.
Once I got to know him I became very fond of him.