Guest Post – Dear Cancer Part 6

Dr Kate Granger writes with such simplicity yet such depth, her words move me to tears.

What does she ask for?

A few more weeks of being a good doctor, working in the NHS, serving her patients, doing the job that she loves…..

drkategranger

Dear Cancer,

Well, this was never a letter I expected to write… 4 years we’ve shared this curious relationship of ours. 4 years. Who’d have thought it?

Last time I wrote I was incredibly frightened. You had woken up just before Christmas and caused no end of issues. I’m not sure if I was more fearful of the impact of you on my creaking body or the impact further chemotherapy and the associated unrelenting infections were going to have on me.

I struggled so much with the poisoning this time, not just physically, but mentally too. It was almost as if every little essence of Kate was trickling away with each infusion. I don’t mind admitting to you how down I was, especially when I decided enough was enough on chemo front. I didn’t want to work. I didn’t know what to do with myself. I guess I just felt…

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Dear Dalriada Doctor

This blog post was written by a friend of mine called Oana. Her beautiful baby boy Georgie, died of leukaemia in the N.I. Children’s Hospice in July 2014.

I love to read Oana’s blog posts, but this one in particular touched my heart.

I work in the NHS and occasionally clients appear to “demand” more than I feel that I have to give – there is NEVER enough time, there is NEVER enough staff.

It’s good to be reminded that EVERYTHING we do, should be done with COMPASSION and RESPECT – because very often we don’t know the other person’s story and the burdens that they are carrying.

Mama's Haven

Dear Dalriada Doctor,

I am sorry I inconvenienced you today by phoning twice for a prescription I should have had the consideration to organise before the Easter holidays began.

Mea culpa.

But still, a bit of compassion and respect would have worked wonders, you know?

I get it.

You sounded bored and ready to go home.

Maybe the extra money you are getting for working on a public holiday does not make you happy.

I understand.

Maybe you had been working from 9 in the morning and had had enough of snotty toddlers and drunk youths. Or maybe you were on call last night and you went to see a dying child in the hospice close by your practice. Possible.

But you don’t know my story.

You didn’t scroll long enough through my medical file to see that in July last year, my life changed into a nightmare forever.

I…

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A Sword will Pierce your Soul

Luke 2:34-35 (NIV)

“Then Simeon blessed them and said to Mary, his mother: “This child is destined to cause the falling and rising of many in Israel, and to be a sign that will be spoken against, so that the thoughts of many hearts will be revealed. And a sword will pierce your own soul too.”

When Jesus was a baby, Mary and Joseph took him to the temple to present him to the Lord as was the custom in those days. A man called Simeon, who we are told was “righteous and devout”, took baby Jesus in his arms and spoke the above words.

What stands out for me is that Mary was told that as a result of all that her son would suffer “a sword would pierce her soul”.

Jesus came to earth to die for our sins, which is incredibly good news. Was Mary told “don’t worry, be happy“, because this would all work out for the best? No, she was told “a sword will pierce your own soul“.

Even two thousand years ago, there was a profound understanding of the love of a mother for her child, and the utter devastation that a parent feels when their child suffers and dies.

Leah faced death with serenity and without fear. I know that she’s in a much better place and is rejoicing forevermore – a princess united with her King.

However, for Horace and I, Leah’s illness and death is like a sword in our hearts. Leah’s passing has left a gaping hole in our family. Sometimes my grief is so overwhelming that I wonder if my kids feel like they’ve lost their mummy as well as their sister? Grieving just drains our emotional energy as parents.

There’s so much to process. Leah had just nine months from diagnosis to death. We’re still trying to take it all in. Sometimes I even struggle to believe that the events of 2013 really happened.

Asda have a slogan called “rollback” where they claim to rollback their prices to a time when things were cheaper. Since Leah died I’ve often fantasised about being able to roll my life back to an earlier time when ALL of my kids got off the school bus at our house everyday and I had their dinner ready.
Leah always arrived home hungry and got upset if she couldn’t smell dinner cooking as she came through the door.

This is Leah last year with Miriam’s cat Mittens.

That’s partly why I’ve still kept all of Leah’s medication. I periodically need to open her medication drawer and look inside, just to convince myself that the events of the past eighteen months really did happen. That it wasn’t all just some crazy dream from which I’m about to wake up.

I went back to work part time in the Health Service two weeks ago. I’m deeply appreciative of the fact that my employers held my post for me while I was off and were also very supportive of me throughout that time.

The weekend before I returned to work saw me plunged into an even deeper level of grieving than I had previously experienced. It was awful, just awful.

Before Leah was diagnosed I had written in my diary “Is it normal for someone to enjoy their work as much as I enjoy mine?” 

After all the experiences of the past year I wasn’t sure if I would even still like my job any more. I didn’t know if I could leave my grief aside sufficiently to be able to focus on my work.

Well, so far so good. I do still love my job and I have found myself able to focus. I find it a very welcome distraction from the sword in my heart. I’m glad to once again be a provider within the Health Service rather than a recipient of services.

I certainly don’t forget about Leah or any of my children while I’m working – I just temporarily forget my pain.

Then when my day’s work is done I walk out the door and connect with my grief and loss once more. Sometimes I’m crying before I even drive out of the car park. Still, it’s good to be back at work.

During Leah’s illness and subsequent death, I submitted three Health Service related, written complaints. None of these were ever intended to be a “witch-hunt” or to single any one person out for criticism. In my letters I always sought to emphasise the positive and to point out the strengths within the services that we were receiving, as well as highlighting the changes that I felt were needed. As a mummy I wanted the very best services possible for my daughter and for other seriously ill young people too.

Sometimes it’s not lack of money that’s the problem, it’s lack of awareness of how our behaviour as professionals impacts the recipients of the services we provide.

Yes the NHS is strapped for cash, yes there have been some awful cutbacks, but ultimately the NHS is made up of individuals, some of whom are incredibly stressed because of very heavy workloads.

However, overall the NHS has been very good to Leah and I. Overall Leah received excellent medical and nursing care across three Health Trusts. Overall we have been well supported emotionally by the health professionals involved in Leah’s care. We met some amazing individuals – consultants, doctors, nurses and ancillary workers – whose compassion and genuine care for us was very evident and whose timely hugs said more than words ever could.

Now that I am once more a provider within the Health Service I hope and pray that I also can make a positive difference in the lives of others.

As I travel to and from work I usually have Rend Collective, Leah’s favourite band, blasting out:

Joy

You’re the joy joy joy lighting my soul
The joy joy joy making me whole
Though I’m broken, I am running
Into Your arms of love

The pain will not define us
Joy will reignite us
You’re the song
You’re the song
Of our hearts

The dark is just a canvas
For Your grace and brightness
You’re the song
You’re the song
Of our hearts

 

People who made us smile :)

During our long 14 weeks in Bristol there were various people who came to Leah’s single isolation room during the day and made her smile, especially on the amazing purpose built Adolescent Ward.

There were so many lovely nurses and a ‘ward housekeeper’ who wore a yellow top – the colour of sunshine – she was a ray of sunshine in our lives. The staff who cleaned our room and served Leah’s meals always brightened up our day too.

Then there were the hospital teachers, they quickly became very special friends and we both looked forward to their daily visits.

The daily doctors rounds also brought us visits from lovely people who had become good friends and who took the time to listen and to reassure. Nothing was ever too much trouble.

Even though we longed to return to N.I. it was terribly hard to say goodbye to the other families and the staff when it was time to leave Bristol, we had formed so many close relationships.

There was perhaps one person more than any other who helped to break up the monotony and boredom of prolonged hospitalisation and isolation for Leah – Sue the Play Assistant. Sue came regularly to Leah’s room with a supply of craft materials for Leah and ideas on how to use them.

Leah was immune suppressed so everything had to be new and unused. We were there a long time so Sue needed lots of ideas for Leah. However, even when we were staying in “Sam’s House” and attending the hospital as a Day Patient, Sue continued to motivate Leah with a supply of suitable materials and ideas.

The Wallace and Gromit Charity supports Bristol Children’s Hospital so there is a lot of Wallace and Gromit paraphernalia around the hospital which resulted in Leah and I both developing an immense affection for Gromit.

Sue provided a T-shirt and a template and Leah made herself a Gromit T-shirt – I’m sure Leah didn’t intend me to publish this photo of her sporting a face-mask but it’s the only one I have of her modelling her Gromit T-shirt. It was taken in our room in “Sam’s House” – it doesn’t look very tidy, does it?

Leah decorated a little wooden bird house which she hung in the garden of “Sam’s House” before she left. Other craft items made by Leah were given as gifts to friends.

Before we left Bristol Leah took to knitting scarves for her teddies with wool and needles provided by Sue.

The NHS gets such bad press sometimes but Leah and I had so many positive experiences of the care she received both in Bristol and in Northern Ireland.

We heard you were coming 💝

Today I went to visit a very dear friend on the Sperrin Haematology/Oncology ward in Altnagelvin Hospital. Leah had two admissions there prior to going to Bristol for her transplant and was really well looked after.

As I walked through the door of the South Wing of the hospital today my tears started flowing and I wondered if I had made a big mistake in going there.

As I walked up the stairs and down the corridor, everything was just as I remembered it, all the familiar landmarks, and everything reminded me of Leah.

By this stage I was in no fit state to visit anyone, but felt I couldn’t turn back as my friend was expecting me.

I was relieved that the entrance to the ward was open as I wasn’t capable of speaking into the intercom. As I approached the nurses station a lovely nurse turned to me and said “We heard you were coming. This must be so difficult for you. We remember Leah.”

Then she took me away to sit in a quiet corner and we talked together about Leah’s illness journey and I showed her some photos of Leah taken in Bristol and after that at Christmas.

The nurse brought me a drink and when I was composed she took me to speak to the ward sister and we reminisced about Leah sitting her GCSE modules on the ward and some other happy memories.

Then I went to visit my friend and had a lovely time with her.

Sometimes there is healing in facing painful memories head on and being enveloped in the loving care of those who God provides to minister to us on this journey.

The Health Service is far from perfect and I have seen the good, the bad and the ugly, but today I thank God for the very many kind, caring staff who made Leah’s and my journey that bit easier because of their compassionate hearts.

The Many Faces of the NHS

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.