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.”
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.