Well today is Sunday the fourth of December 2011 and what
else to write, actually quite a lot, a lot of which you and others will be
uncomfortable with. I thank you for having read Cery’s Story, I know you found
it emotional, but then that’s part of what being human is all about.
Before I move on, I want to take you back to the morning of
Wednesday the third of August 2010, there are pieces I left out of the Cerys’
Story I need to tell you about.
As I said after Cerys died Helen Andrew and I went to the
Teenage Cancer Trust Unit, if it was for the staff there to console me, I
didn’t want it. I was frustrated and angry. The events of this day and the days
that followed, seemed as if they were happening to someone else, but of course
they were happening to me, because I presume, I was so emotionally charged over
Cerys’ death.
Elsa, was Cerys’ lead nurse there and I raised a few issues
with her. Over time I have forgotten what some of them were, the one I do
remember was about the big bag of medication Helen took home with Cerys, This
Helen was to administer having had no training and no medication chart and I
told Elsa that this, “was wrong!” “Point taken, ”was her reply.
Elsa gave me a phone to use, I
knew that the first call I would be making would be to the surgery in Pembroke
Dock, to leave a message for the doctor who wouldn’t do a home visit. The
receptionist answered and I said “I want you to tell Dr *, I want you to tell
him that Cerys Lewis is dead!” the reply was “how will he know who she is,”
“because we took him to the Community Health Council. The other two calls I
remember making out of many, was to Cherryl where I worked, the shock and
surprise on the telling of Cerys’ death I remember well. Julie my sister I
could not contact, so I rang her daughter Ceri to tell them. “Ceri,” I said,
“Cerys is dead,” Ceri replied with an almighty scream of anguish she was so
devastated, she had to leave work and go home.
We went back to the flat to get
Cerys’ and Helen’s belongings and the second car, Helen in the second car
followed, as Andrew who was still phoning family and friends, and I headed home.
Helen on her own with her thoughts and alone and Andrew and I with ours, mine
were so black and despairing.
Cardiff, as it disappeared behind us, was
being slag off very much, a hopeless hole of a place, but not so some of the
people from there, was one of those thoughts.
But then, if we had had got Cerys
to good health and to the Millennium Stadium to watch Wales playing
and winning at rugby. Cerys loved watching rugby, then my feeling about the
place would be different. That didn’t happen, so that thought remains.
That journey as with all of the
journeys to and from Cardiff
over this time, were never good, but this one went on and on, mile after mile.
Having left Cerys’ body back at
the hospital, as in our despair and desperation we headed for the sanctuary of
Pembrokeshire and home.
I consoled myself in the belief
that that’s were Cerys’ spirit had returned home also.
We didn’t stop until we reached
Kilgetty and Peter and Rose Probert and their family, whose friendship and
support was very welcome throughout this time. My feeling now is that we
arrived at their home in a very shocked state, I think we cried, had a hug,
Peter and Rose and family gave their condolences, as we told them about today’s
events, that lead up to Cerys dying.
Then we were on the move again,
for home to try and gain some comfort from being in our house, with family and
friends.
I do not remember much about the
rest of this day, as so much happened, other that the phone kept ringing and
people were visiting. Although the first two people to call I think were Abi
and Ceri our nieces. More hugs and condolences, as we told them about Cerys’
final hours of life, all these things would happen, over and over again, today
and in the weeks, months and years that followed.
Helen said she can remember her
brother and sister in-law Warren and Mel visiting. In the evening Tracy Thomas
bless her, Haematology Nurse and Cerys’ Lead Nurse at Withybush Hospital’s
Cancer Day Unit, visited gave her condolences and took a very very large bag of
Cerys’ medicines etc, back to the hospital
It is important to write that Julie
my sister, her husband Ronnie and their daughters Ceri and Clair when home from
university provided a lot of the emotional and physical support required
throughout Cerys’ eighteen months of life after diagnosis. I have to tell you
of the support my father Geoff gave, in looking after Andrew up to his death
from cancer in August 2009. Bless you Dad. We are most grateful for this, as it
allowed our family to concentrate our efforts to support Cerys when she was in Cardiff for months and
all the journeys back and fore to that place for follow up treatments.
To go back a little, in the
earlier morning of August the forth, waiting for the dawn and Cerys’ untimely
death, in my head I was planning how we would Celebrate Cerys’ Life.
The venue I just knew had to be
Pennar Community Hall.
The people, who I wanted to do
readings at Cerys’ Celebration, were Harry Dixon and Mike Rowe, Scouts Leaders,
both of whom have been touched by cancer.
From work I chose Andy Taylor,
from my Cub Pack, Jacob’s Dad, David Gooding, both these men were Lay Preachers.
As Cerys’ body would be taken in
the Hall Kylie Minogue, who has also been
touched by cancer, new song “All the Lovers,” would be played.
Back now to Thursday the fifth,
we wanted to register Cerys death in Pembrokeshire, but because Cerys died in
that place, registering Cerys’ death became too complicated? We would have to
go back to there to get Cerys’ death register and bring it to the Registry
office in Pembroke Dock to get Cerys death certificate.
This would have lengthened the
time scale and we would have missed the date arranged to Celebrating Cerys’
Life on Friday the thirteenth of August. Unlucky ! Not for us, our unluckiest date had passed.
Cerys we were told needed to be
repatriated? Cerys was born in Wales,
she died in Wales,
we felt that no repatriation was needed.
Bureaucracy who needs it? Not us.
During this time we had a phone
call from Hugh John Wilson the Scout Chaplin, offering his assistance which we
accepted. Hugh met with us regarding the arrangements and we said prayers. On
Monday the ninth of August, Helen Andrew and I had to go back to that place to
register Cerys death. On the Tuesday the Undertaker’s went and collected Cerys’
body and took it to their Chapel of Rest in Pembroke Dock. Then on Wednesday,
laid out in a wicker coffin, they took Cerys home. Hugh John Wilson was with us
when Cerys came home for the last time and we said prayers.
Cerys was laid out in the front
room for that day and the Thursday into Friday.
Cerys’ body was now at peace, it’s
suffering over, as Cerys’ spirit we felt, unable to communicate, looked on at
us. Many people came over this time to say their goodbyes to Cerys
On the day of Cerys’ Celebration
of Life, as the sun shone, the house that was already festooned with flowers
and other colourful plants now had to take in wreaths, bouquets and small
ornaments. We had asked that people wore only colourful and bright clothes and
this they all did.
Family, relatives’, good friends,
undertakers came and went or stayed. One poor gentleman delivering a wreath for
the second or third time was so overcome with grief, was in tears as he left
us.
When it was time for Cerys to
leave her home for the last time, there were so many people there willing to
share in our sadness and show their respect, there was no room in the house. These
good people were on the front lawn or in the street. The good people who came
to Cerys’ house, Helen Andrew and I met with them all. I gave a hug to each of
them and thank them for coming, this I continued at the Hall, as best as I
could.
The Bearers were Nigel, Robert,
Warren, Ronnie, Terry and Mickey, they carried Cerys out to the hurst
and we all took the slow short walk to the Hall.
There were many more good people
there and as the Bearers took Cerys into the Hall, Kylie Minogue’s “All the Lovers,” was playing.
Family friends Billy and his son
Joe, provided the sound system, thank you.
Hugh John Wilson officiated at
Cerys Celebration of Life and it was all done with the up most dignity and
respect, thank you.
Readings
were said by Harry, Mike, Andy, David and Hugh said prayers.
We all sang Kum Ba Yah, which is
actually about the death of a child.
Ceri our niece had put together a
power point presentation of pictures of a living Cerys, thank you. While Joe
played Katie Perry’s song, “Black and White.” This was one of two of the very
last songs Cerys had listened to on her I Pod, which Cerys used incessantly to
drown out the noise of the world, when away from home.
The emotion in the Hall was
immense, we had asked Hugh to keep it as positive as he could and he did his
best, telling the good people about Cerys’ life. Although, there were there
those moments of much sadness and crying and while the living pictures of Cerys
were shown and Katie’s music played, this was one of those moments.
Time and life had left Cerys,
though not us and as the Celebration of Cerys’ Life came to a close, the last
song Cerys would have listen to was played. This was Queen’s “Radio Ga
Ga,” it was so strange how this song fitted the occation, just believe me it
did!
Hugh asked the good people so to
speak, to quietly clap as the song played.
This then, as Cerys left the
hall, accelerated into a very loud round of applause and cheering, so
emotional, so fitting, As Cerys came out of the Hall Scouts lined up either
side of the path, still clapping as Cerys was taken to the hurst.
I like to feel that Cerys would
have been so proud, on how all the good people had helped out and how well this
part of her Celebration had gone.
As the good people came out of
the Hall, we thanked them all for coming, whilst some commented on how
wonderfully different Cerys Celebration of Life had been.
The good people kept on talking
for so long, was pleasing to see, but with time pressing, I felt I had to do
something as we needed to get to the crematorium at Narberth. So I lifted
myself up on the low wall surrounding the Hall and shouted that, “ it’s time to
Rock & Roll to the Crem.”
We followed the hurst I drove our old Ford Maverick 4X4, a
car we’ve had for twelve years.
This car evokes so many memories
of the living Cerys, the trips to Grove school where she was a pupil. The trips
to family and friends and the shops. To
the beach and on camping holidays, towing a trailer with all our gear in it.
There were so many loving, happy memories, more than I’ve written here. Now to
one of my saddest memories, the evening of Tuesday the sixth of January 2009,
with the night drawing in around us and with Cerys Helen Andrew & I in the
Maverick. We were on the road from Pembroke Dock to Withybush Hospital,
Haverfordwest. We had to be in Ward 10, where a bed was available by 5 pm, as
instructed to do so in an earlier phone call by our GP Andy Evans. I clearly
remember saying to Cerys, that once we get her to hospital, they would make her
better again. Not thinking it was cancer or remembering that Ward 10 is a
Cancer Ward.
It was as expected a slow drive
to the Crematorium, Huw officiated and Andy and David said readings.
Proceedings were moving along as expected, while my family, relatives and good
friends were caught up in the emotion of such an event. That was until it came
to singing, “ I am the Lord of the light.” This was a Celebration of Cerys’
Life and as the Good People started to sing this song at an upbeat pace, the
organist had different ideas. Rather that speed up to our pace, the organist
slowed it down to that, that would befit a funeral. I know I should have said
something, probably loudly, but I didn’t. I was not looking forward to this
part of the day and wanted it to go with the littlest of upset, if that is the
right word, as possible. We, after this bit, shook hands, hugged and cried with
the Good People, who gave their respects to us as they left the chapel.
We left the crem and headed back
to the Hall, where some of the good people had arranged a buffet. We had been
away for over two and when we got back there were still so many Good People
awaiting our Families’ return, it made me feel so good, on a day such as this,
Cerys’ Day.
The talking was good, the food
was good, the drinking well, only tea coffee squash was available, opp’s, was
fine. As the evening lengthened, the Good People started leaving so after a
tidy up, we locked up and those of us
remaining went to Julie and
Ronnie’s house, to continue the talking eating and drinking.
Then I remembered & said
loudly, “we’ve left Cerys behind in the Hall.” Helen though that with all the
tragic events that had happened, I’d lost it completely! While startled
expressions was what I saw on the Good People’s faces. “No,no, what I mean, is
we’ve left Cerys’ picture,” ( 5ft by 1½
ft, this was on the outside wall of the Hall and was used as a point of
reference for those who did not know Cerys,) “in the Hall.” Great relief was expressed by my wife and the
Good People, that I had not “LOST IT!” Some would question that, including me, ha
ha!
With the Cerys Celebration of
Life on Friday the thirteenth of August two thousand and ten over, the
anticipation and excitement, if that is the correct word to use was gone. I
needed a new focus and one was easy to find.
Helen and I had been assertive
with the medical teams and associated services, in wanting the best for Cerys
during her final eighteen months with life.
For me as you have read I was frustrated
and angry.
Angry that Cardiff was the location of the Regional
Haematology Centre and this meant that
Cerys’ treatment and survival was disadvantaged by distance.
Did you know the Cardiff Centre
treats cancer patients from the south west of England?
These poor unfortunate cancer patients should be treated in England,
as close as is practical to where they live.
Angry, with the treatment Cerys
had to endure, if she was to live, as she clung on to life.
Angry that Cerys had to endure
long journeys to recived her treatment, this was not humane. Now that’s a very
important word I have never heard used in connection with the NHS in Wales.
Angry with the attitude of some of
the medical and nursing staff at the Centre, who had it in their heads that
Cerys and her family would be passive and that they knew best?
Angry with the facilities in B4
ward, where Cerys recived her treatment in those first three months or so and where
Cerys was the youngest female patient.
Angry that Withybush General
Hospital, where the Doctor’s and Nurses are good people doing their best, to
treat people with cancer, were not allowed and not furnished with the resources
that favoured hospitals are given, by the Welsh Government, through NHS in Wales,
to comprehensively treat my daughter Cerys
.
Angry with the recent information
I found, that Acute Lymphoblastic Leukaemia the type Cerys had, is very rare at
her age and as the Regional Haematology Centre, swung into action to treat her
cancer, it did not put into place appropreate measures to treat a cancer so
rare.
Angry now, that at the time of
diagnosis, we were not told by the Regional Haematology Centre, how rare Cerys’
cancer was. I’m left wondering why?
I was so appalled at the level of
cancer provision provided to Cerys by the Welsh Government, through the NHS in Wales.
If this was their best, then they are mistaken, that I wrote to the then
Minister for Health and Social Care at that time, Edwina Hart.
This letter you can now read for
yourself, I feel it reflects well on how I was grieving for Cerys in those
first few months, after life was forced to leave her.
9th of September 2010.
Dear Mrs
Hart,
Our daughter Cerys Elen Lewis
born 14/4/91 in Withybush General
Hospital,
Haverfordwest, died on 4/8/10 in The University Hospital of Wales, Cardiff.
My wife and I feel that we needed
to write in order that you know about Cerys’ journey since being diagnosed with
Acute Lymphoblastic Leukaemia on January 6th 2009 which ultimately
concluded with her untimely death.
There follows our observations
and opinions:-
To place the Regional Haematology
Centre in Cardiff
and expect our daughter and family to endure four hour round trips during
Cerys’ admission and subsequent follow up IV chemo treatments was wholly
inappropriate. From the day of diagnosis
until the day of her death, you and the Welsh Assembly Government made her
endure these 4hr round trips, this is inexcusable.
Cerys was never in good health
and though being unwell she never complained.
Cerys believed that your NHS service would make her well again.
The fact that on many occasions
because of the chemotherapy treatments, Cerys was neutropenic, and you and the
Welsh Assembly Government required her to attend the University Hospital of
Wales for IV chemotherapy treatment. Cerys went into the most densely populated
region of Wales,
entering the biggest hospital in Wales, through the main
entrance and having to pass so many people, to get to the Teenage Cancer Trust
Unit, which increased the risk of Cerys contracting an infection.
This is also the case to a lesser
extent at Withybush
General Hospital,
where Cerys attended the Chemotherapy Day Unit twice a week, to have her bloods
checked or blood products given, or to be admitted, due to complications. To
allow these situations to occur is inexcusable.
All neutropenic patients should have their own separate entrance when
receiving cancer treatments.
Cerys was always ill, however on
the 26th of July 2010 her condition worsened, she contracted a respiratory
infection and she was initially admitted onto Ward 10, Withybush General Hospital.
Then subsequently the Intensive Treatment Unit, Withybush General Hospital.
Cerys’ conditioned continued to
worsen and on the 2nd of August 2010 she was required to travel by ambulance to
the Intensive Treatment Unit at the
Critical Care Department of the
University Hospital of Wales, because they had an oscillating
ventilator, Withybush General Hospital did not. This was inexcusable.
There was no isolation room
available for Cerys when she arrived at the Intensive Treatment Unit in the
University Hospital of Wales. She received her treatment on the open ward that
is the Intensive Treatment Unit. We as parents expressed our opinion that this
was not a satisfactory situation to the medical team and had this written into
her medical notes.
The fact that on the night of the
3rd of August and into the morning of the 4th of August, while my wife, son and
I waited for the inevitable untimely death of our beloved daughter Cerys, we
had been required to travel so far away from home, with no family or friends to
support us, surrounded by the Intensive Treatment Unit medical team, who only
hours before had been complete strangers, in utter and total emotional turmoil.
This is totally inexcusable.
Cerys’ heart was still, with the
aid of life support machines, beating. The medical team had continually kept us
informed of her worsening medical condition. At around 8.30am on the 4th of
August, we met the medical team and said,
“we started Cerys life, we will stop Cerys life.” This was agreed to and
around 9.15 am life support was turned off and as we held Cerys’ hands she died
in front of us.
Before leaving the University
Hospital of Wales, we thanked the medical teams at the Intensive Treatment Unit
and the Teenage Cancer Trust Unit for all their efforts in attempting to
preserve Cerys’ life.
Then, that same day, as bereaved
and grieving as we were, you and the Welsh Assembly Government made us drive
two hours back home.
The following day we went to Withybush General
Hospital
and thanked the medical teams at Intensive Care Unit, Ward 10 and the
Chemotherapy Day Unit for all their efforts in attempting to preserve Cerys’
life.
Cerys’ leukaemia journey was
always going to be difficult, primarily we feel due to where we lived. It is a fact that
Cerys and others in her situation receive a different level of service than
someone who lives in or around Cardiff.
With Cerys’ journey now over, my
wife and I had to write this letter in the belief that very soon it will have
made a difference to the way that the NHS in Wales, treats cancer patients this
far west and makes a difference for those, children, teenagers and adults who
are yet to start their cancer journey.
Mrs Hart, you only need to reply
to this letter, if you are prepared to remove your political mask and show your
human face.
We thank you for taking the time
to read our letter.
Thank
you for continuing to read my blog, a blog of tragedy that many would shy away
from.
The
letter to Mrs Hart was copied to the local paper the editor published our
letter near verbatim, except for the second to last sentence that starts Mrs
Hart.
A
few days later a Dr Jones from the Welsh Government phoned me in response to
the letter. Mrs Hart and he wanted to meet with us to discuss some of the
points we raised. I was not sure if I wanted Mrs Hart in our house, she was the
Health Minister and in that role she was ultimately responsible for the NHS in Wales &
that meant she was ultimately responsible for the haematology services.
Just
to move to one side a minute, there are those in the Welsh Government and the
NHS in Wales, tell us that
Cerys was made to go to Cardiff,
because it was a centre of excellence. I have challenged that, because I
believe that what Cerys got was a rationed
service.
Anyway,
Mrs Hart being in our home was resolved when I told Dr Jones that the letter
had been published in the local paper. This changed everything, Dr Jones felt
that Mrs Burns would no longer want to visit and this turned out to be the
case. Although Dr Jones still wanted to meet with us and said he would got back
to us with a date for a meeting, more on this meeting soon.
Helen
and I felt it would be appropreate to put an acknowledgement in the local paper
and this is what I wrote and we had published.
TO THE LIFE OF
CERYS ELEN LEWIS
BORN THE FOURTEENTH
OF APRIL NINETEEN NINETY ONE.
THE
FAMILY OF CERYS ARE PLEASED TO THANK ALL RELATIVES AND FRIENDS, WHO WERE
INVOLVED IN HER NINETEEN YEARS OF LIFE WITH US.
THE
FAMILY WOULD LIKE TO THANK THE MEDICAL TEAMS, WHO THROUGH THEIR PROFESSIONALISM
AND HUMANITY, DID ALL THAT THEY WERE ABLE TO PRESERVE CERYS’ LIFE.
THANKS
TO ALL OF YOU WHO SENT CARDS AND FLOWERS.
THANKS
TO ALL OF YOU WHO VISITED, LISTENED TO US AND SUPPORTED US.
THANKS
TO ALL OF YOU, WHO ON THE THIRTEENTH OF AUGUST 2010, JOINED US IN A CELEBRATION
OF THE LIFE OF CERYS AT ST PATRICKS COMMUNITY HALL HERE IN PENNAR.
OUR
BEAUTIFUL BELOVED DAUGHTER AND SISTER CERYS LIVES ON IN OUR HEADS AND OUR HEARTS,
GOD BLESS YOU ALL AND HAVE A GOOD LIFE.
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