Facing the No-Go Areas

Tomorrow Tuesday 29th April ’14 Horace and I are going to the Cancer Centre at Belfast City Hospital to meet with Leah’s Belfast haematologist and her Bristol haematologist – two very compassionate men, both of whom were adored by Leah.

They will give us the results of the mini post mortem of her lungs and this might give us more of an understanding of some of the medical factors involved in her death.

The mere act of walking through the doors of BCH will take a lot of courage, never mind the conversations that will follow. We hope to meet with some other members of the team who were very special to Leah also.

The appointment with our Bristol haematologist Dr C, has been in place since before Christmas, as it was originally made for Leah to see him and to have her ongoing recovery from her transplant assessed.

Leah planned to make some tray bakes as a gift for Dr C on this occasion. She had discussed with me what she would make – “fifteens’ (without cherries) and malteser squares.

Yesterday Miriam and I did this baking in Leah’s memory – it’s what Leah would have wanted us to do. Click here for step-by-step instructions on how to make Leah’s favourite fifteens.

We used the Waitrose chocolate chips (for the ‘fifteens’ ) that I had bought when we were in Bristol for Leah’s transplant and we were saving for a special purpose – Leah loved these Waitrose chocolate chips.

Delving into the baking cupboard again was emotionally painful – it’s been one of my no-go areas since Leah died.

If I had a choice, I would roll my life back to a time when I didn’t know my way around the ground floor of Belfast City Hospital, to when I didn’t know exactly which sandwiches in their coffee bar I liked best, which of their buns were the nicest and which of the hospital toilets had a hook on the back of the door to hang my handbag on……………. but I don’t have that choice.

I can only go forward, I can’t go back. I have to live life in the present, and that isn’t always easy, just as it isn’t easy for so many other people either, for a variety of different reasons.

I have learned that a lot of people are carrying heavy burdens, some like me carry the visible burden of grief while others carry secret burdens involving shame and fear.

God knows all about our burdens – evidenced by verses like this in the Bible –

If I can find the strength, I want to visit the Bridgewater Suite tomorrow, where Leah had most of her outpatient appointments. I also want to visit the ICU where Leah spent her last days on this earth, as I don’t want to have any no-go areas in my life.

Who knows what circumstances in life may result in my having to visit those places again in the future and I would like to have these “firsts” behind me.

Our TYA (Teenage and Young Adult) cancer nurse specialist will be by my side supporting me wherever I decide to go.

Obviously, this day is going to be laden with emotion and with some incredibly difficult memories. The two and a half weeks that Leah spent in ICU were the hardest two and a half weeks of my entire life.

The majority of the most traumatic (for me anyway) outpatient appointments during Leah’s illness also occurred within the walls of Belfast City Hospital. Please can you pray for Horace and I tomorrow and keep us close to your hearts.

Painful though all of this is, I believe that it’s very necessary on our path to healing.

Not that we will ever be fully whole again – we will always bear the scars of losing our precious daughter – and so we should – as our four children are part of who we are.

I have always said that my children are my most precious possessions in life.

I don’t wish Leah back, because her body was broken and she has now received the ultimate healing and is rejoicing forevermore with her Saviour in heaven.

However, the person we have lost is precious to us beyond words, as each of our children are, so our grief and pain will continue.

Another song that Leah loved was “Like a lion” by the David Crowder band and it was one of the ones that we played quite a lot when Leah was in ICU –

“My God’s not dead
He’s surely alive
And He’s living on the inside
Roaring like a lion”

The image of His strength inside of me being like a lion, when I felt – and continue to feel – so very weak, is a helpful thought.

I was not just a relative I was her Mummy

Tuesday morning 14th January’14 found me sitting in my lovely room in the Cancer Centre at Belfast City Hospital.

Leah was going for a CT scan of her lungs.

The policies of the ICU did not permit relatives to accompany patients for these procedures.

My TYA (teenage & young adult) oncology nurse specialist came to see me in my room.

She said that she & my TYA Social Worker were concerned about some of the issues I was experiencing in ICU and the impact of these on my stress levels.

She said that she would speak to the nurse in charge on my behalf and wanted to know which issues I wanted addressed.

I explained that most of the nurses were brilliant and some of the doctors, especially the younger ones, were good at communicating with me – the problem was that how I fared on any given day depended on who was on duty.

I said that there was really only two issues that I wanted addressed.

One was the fact that when certain consultants were in charge I had to beg for information.

Whenever I was asked to leave ICU during Doctors rounds I would say to the nurse looking after Leah “Please ask the consultant to give me an update when he has finished his rounds.”

On more than one occasion this request elicited the following reply from a nurse “It is not the norm in this unit for doctors to speak to relatives on a daily basis.”

I told my TYA nurse that I NEVER wanted to hear that phrase again – the patient in the bed was 16 years old, she was just a child, I was not just a relative I was her mummy, she was dying and I didn’t care what the norm was in that unit – I wanted the opportunity to discuss my daughter’s medical condition with the doctor looking after her, on a daily basis.

The other issue I wanted raised was the amount of time I spent sitting outside ICU in the corridor, separated from my child.

I accepted that the policies of the unit meant that I was asked to leave for all sorts of reasons.

Most of the nurses kept this time as short as possible, but sometimes it seemed that the amount of time I was left sitting out in the corridor varied according to who was on duty.

My time with my critically ill child was so precious to me and I felt actual physical pain in my heart when forcibly separated from her.

I asked my TYA nurse to ask the staff to please keep separations as short as possible.

My TYA nurse was very understanding and went and spoke to the nurse in charge in ICU.

The particular nurse in charge that day was one of the kindest, gentlest people you could ever wish to meet and she was maybe a little taken aback to hear that a small minority of staff treated me very differently to how she treated me.

However, she took on board what was said.

Leah’s CT scan that day showed serious deterioration and we very quickly found ourselves discussing end of life plans, so the goal posts moved quite dramatically.

However, it was so important for me to know that I had professionals like my TYA Oncology Nurse Specialist & Clic Sargent SW who would listen to me, support me and advocate on my behalf.