Tuesday 2 October 2018

CERY'S CANCER JOURNEY part 1


The story of Cerys’ Cancer Journey,  as seen through the eyes of her father Kevin.

                                                                                                

                                                                                                                                            

Our beautiful beloved daughter Cerys Elen Lewis born 14 April 1991 in Withybush General Hospital, Haverfordwest died on the 04 August 2010 in the University Hospital, Cardiff.



Cerys’ mother Helen, who is still emotionally effected , has contributed her experiences and thoughts to Cerys’ story.



A year has now past and at the end of the evening Helen sits on Cerys’ bed, talks to her and cries. Her thoughts are with a Cerys who is very much alive, though asking that unanswerable question of why did Cerys at such a young age have to struggle for her life and after such a brave fight have it tragically taken from her.

At the start of every day, I open Cerys’ bedroom door and desperately hope to see her alive. A hope I will live with until the day that I will die and wish her “good morning,” I talk about what’s been happening and I tell her I will see her later. Andrew every morning says, “good morning,” to Cerys.



Here follows the story of Cerys’ brave struggle to keep her life and her battle to overcome Acute Lymphoblastic Leukaemia.



On the 31st of December 2008, Helen phones the surgery as Cerys is unwell and requests a home visit for Cerys. Helen is phoned back by a doctor who is insistent that Cerys attends the surgery. Cerys, who became anxious when having to leave her home, chose not to attend.

  

On the 5th of January 2009, Helen phones surgery as Cerys is still unwell, very unwell, Dr A Evans visits, his advices is that Cerys visits the surgery the following day for bloods to be taken.



On the 6th of January 2009 and with Cerys very physically weak and required Helen’s physical assistance to get ready knew that she had to attend the surgery. Although Helen was told on the phone that Cerys would be seen straight away, Cerys was kept waiting, despite requests by Helen to the receptionist for her to be seen. In the waiting room and with a continuous nose bleed and feeling very anxious, Cerys wanted the toilet and was taken by Helen.

Cerys collapsed on to the floor and was kept waiting in the toilet for twenty minutes, until the member of staff was ready to take Cerys’ blood.

   

Later in the afternoon Dr A Evans phoned he told us Cerys’ situation was serious and we are told to take Cerys to Ward 10 Withybush Hospital.

Here we are told by Dr Harry Grubb Consultant Haematologist that Cerys had Acute Lymphoblastic Leukaemia and that Cerys will shortly be transferred to the University Hospital of Wales, to commence chemotherapy treatments.



We found out later that the NHS in Wales did not allow Withybush

Hospital to administer chemotherapy treatments.

We endeavoured to console ourselfs and come to terms with the reality of Cerys’ diagnosis. The fact is we never came to terms with the fact that Cerys had Leukaemia, but for Cerys we remained positive and brave.

The medical team commenced with stabilising Cerys’ condition and we reassured Cerys that every thing would be fine, we left Cerys to go and get provisions to take to Cardiff.

On the way we to Helen’s brother Warren and his family, who live near the hospital. Before I went in I phoned family and friends in tears, to tell them that Cerys had been diagnosed the Leukaemia. I remember the shock they expressed in their voices and their offers of support.

Here and in total emotional turmoil we told Warren & his wife Mel that Cerys had Leukaemia. How we all cried, their support at this moment was very important to us.

On going home, I needed to get fuel. After filling up at the ASDA pumps, I went into pay the woman behind the counter, but the word Leukaemia as too big a word to keep in my head and I had to tell her that my daughter Cerys had just been diagnosed with Leukaemia. This woman was Ursula and we from that day on are friends.    

After collecting provisions from home, we headed back to Cerys.

The evening was very cold and I do not remember anything about what happened on Ward 10. However, I do remember Cerys being wheeled out to the ambulance and this critically ill and frail looking young woman walking into the ambulance, Helen followed her. Andrew was with me and as we gave them our love and told them we would see them tomorrow, the doors closed and with the cold wind surrounding us, we watched the ambulance under blue lights drive away. I felt empty and devastated, but I knew I had to stay strong for Cerys, Helen, Kyle and Andrew.  



At the University Hospital of Wales, Cardiff, and B4 Haematology Ward, here Cerys’ chemotherapy treatment was commenced.

Helen was told to go home, Helen refused and stayed.

The following day and as critically ill as Cerys was, Cerys was asked by the Consultant to sign her consent, which she did, to be part of a chemotherapy trail being coordinated by a “Sheffield Hospital?”

What was important here was preserve Cerys’ life and not statistics for the trial.



Helen was not offered any accommodation and spent five nights sleeping in the chair next to Cerys’ bed. Some of the kinder nursing staff allowed Helen to use the staff shower to freshen up in. Eventually, Helen was offered a bed in the relatives accommodation attached to the Children’s Hospital.

Helen had been told to book in to a B&B or a Travel Lodge.



Cerys received her acute intravenous chemotherapy treatment in B4, after one month of having injections into her arms, they were battered and bruised. We raised concerns with the medical team about the injury and distress this was causing Cerys. They in turn insisted that they would continue using the arms and no other parts of her body.

How Cerys suffered for her life in those early weeks for her treatment, she contracted pneumonia twice and had to have lumber punctures to drain off the fluids & chest X-ray after chest X-ray.

Epidurals into her spin of chemotherapy drugs on top of the injections into her arms.

All the pain and discomfort Cerys was in, she never complained to the staff, she left this for her mother.

Helen told me that a greater concern to Cerys was loosing her hair, what other teenage girl wouldn’t feel the same. Cerys’ hair ended up falling out on mass and eventually Cerys was made to accept that fact and asked her mother to shave what was left off.

Cerys did ask Helen if she would be able to have children, when this was all over, Helen was not able to answer truthfully and said we’d have to wait and see.



In one of those early months, a junior doctor told Cerys and Helen they could go home for that weekend, but that there may not be a bed for Cerys on her return. They of course did not come home and I on my next visit and as any father would do, had words with this doctor.



In the three months that Cerys spent in the B4 ward, Cerys should have transferred to the newly built Teenage Cancer Trust Unit after a month, but there was a further three month delay before Cerys eventually transferred. Cerys was continually moved in B4, from this bedded unit to that bedded unit.

Cerys was seventeen when she arrived on B4. Cerys was eighteen when she left. Cerys was the youngest female there and was placed with women considerable older than her.



On one occasion a group of doctors descended on the elderly lady in the bed next to Cerys and told her that there was nothing more they could for her. Cerys and Helen could hear everything that was said and this distressed them greatly. Later that day Jude the CLIC Sergeant Social Worker raised it as a concern with the Nurses, but it was the doctors who had caused it.



We did write a letter of complaint to Hugh Ross Chief Executive at this time, regarding Cerys being treated in the age inapropreate setting of the B4 ward.



There were many times for me, especially on the long drives home on those dark nights, in the first couple of months, having left Cerys in a very poor state of health.

Helen was also concerned by Cerys’ health and the intensity of the chemotherapy treatments.

I have this pictured of Helen in my mind, silhouetted by the back light, in the large windows of the hospital, waving goodbye, as I walked back to the car. Me with tears in my eyes, wondering if Cerys would be alive the next time I visited and how would Helen cope with this.

Whilst driving west for home, there was this particular bright star in the sky, I would look to and plead with God to preserve Cerys’ life.     



Cerys and Helen did not come home for over three months. Andrew, Cerys’ brother and I made twice weekly visits, sometimes accompanied by our daughter Kyle or other of my sisters Julie or Shirley or Rose or Mickey friends.



Over those months in the evenings I would phone and talk with Helen about the day that she and Cerys had. It  we not what Helen said that I remember the most, but the reflection in her  voice, the worry, the anxiety, the concern, the despair. And always throughout, the hope, the need, the wish, the longing that Cerys would recover and out live her and me.  

It would have been during these early months that the car clock up over six thousand miles.

After a few months this changed into long weekend visits, when Cerys became an out patient and a flat local to the hospital was provided, because it was too far to travel back and for from home.

It was on one of these weekends that Cerys needed to go in on a Sunday, her bloods had not been good and she required a transfusion. With no day unit open on the weekends this was done on B4 ward. The only place the transfusion could take place, was in the largest of the bedded units, which as usual was full of women considerable older that Cerys. One of the nurses sorted Cerys out for the transfusion and as the custom had become, Helen Andrew and I got chairs and sat around the bed talking with Cerys.

For a short while that was the case until the shout and stern looking sister arrived, administering medication. She looked at us and asked us to leave. I replied that we were comfortable,” thank you.” She replied that we were blocking the toilet. We apologised to Cerys for having to leave her.

Due to this sister’s dictatorial attitude, I asked if I could meet with her after she had completed administering the medication

I explained the events that had happened in Cerys’ and our lives that had got us to this position on this particular Sunday morning. The Sister’s attitude changed completely. This Sister now showed her humanity, Cerys was moved out of that bedded unit and thought not realy suitable and with no other space available, completed the transfusion in the staff room, this allow us all be together. On leaving we thanked the Sister and the staff.   



Early in April 09 and with great joy and relief in our hearts, I collected Cerys and Helen from hospital and took them back home, although with a very big bag of oral chemotherapy medication etc and a drugs protocol?



Helen, completely inexperienced and without any training, was expected to and did administer this medication to Cerys She even devised her own medication chart. No provision was ever made or discussed by the UHW, to arrange community nursing support, to assist in the administration of this medication.  



However, Cerys’ return home was short lived. In amongst the cocktail of oral chemotherapy medications Cerys was required to take was Methotrexate.

The first time Helen tried to give this 15 ml dose of Methotrexate, Cerys refused, she did not like the taste. Cerys was unable to take anything in tablet form. The following day a fresh 15 ml dose was offered and Cerys again refused. The next day after much pleading by Helen, Cerys took this fresh 15 ml dose.

This medication was never given to Cerys when she was on B4 and Cerys had a severe negative reaction and was required to return to B4, for her condition to be stabilised.



On arrival at UHW it was initially implied, because 45 ml was missing from the bottle of Methotrexate that Helen had overdosed Cerys, this of course was not what had happened.



Helen and I felt that the person responsible was the Consultant. When I tried to speak to her over the phone about this matter she told me she would not talk to me on the phone. I therefore arranged with her, for Helen and I to meet her later that same week. At this meeting we raised our concern and put it to her that she was responsible.



It would be a further month before Cerys and Helen came back home again.

  

Chemotherapies remained the responsibility of UHW and Cerys and Helen endured many four hour round trips, in all weathers and traffic hold ups, to receive this treatment.

One of these treatments lasted for twenty minutes. Thankfully, by now Cerys was being treated in the Teenage Cancer Trust Unit and not B4.



Cerys’ maintenance chemotherapy commenced at the end of December 2009.

Due to Withybush Hospital’s proximity to her home, Cerys always preferred, to use its facilities.  

The Chemotherapy Day Unit and Ward 10 at this Hospital we’re only allowed to check Cerys’ blood, give blood products and deal with the medical complications that the chemotherapy treatments did cause.



However, during Cerys’ treatment, there were five occasions when Cerys was denied direct access to a bed on Ward 10 and on one occasion at the beginning of February 2010, Cerys was required to languish for four nights in Adult Critical Decision Unit.

There were occasions after chemotherapy treatments for Cerys to be neutropenic, which means Cerys had no immune system and was an open door to any infection.    

It is our opinion and this we had written into Cerys medical notes, that Cerys contracted Clostridium Difficile while she waited for a bed to become available on Ward 10. We of course did write a letter of complaint about this.

Cerys never fully got over the Clostridium Difficile infection and there were minor reoccurrences over the coming months.



Despite this, over the next months few Cerys’ treatments were administered with little difficulties or concerns.

Family life was starting to get back to normal during the first seven months of 2010.

On July 19th 2010 Helen took Cerys to Cardiff interfecal,(epidural,) of Methotrexate a chemotherapy drug, into her spine. As painful as this and other treatments were Cerys accepted the pain and following discomfort, in order to maintain her life.

It is normal for the blood counts to drop for about 10 days after chemotherapy treatment, thus making the patient neutropenic and prone to catching an infection.

Cerys on a check up of Cerys’ bloods at Withybush Hospital on the 22/07/11, a marker indicated the presence of an infection. A specific antibiotic was prescibed and Cerys condition initally began to improve.



However on the morning of the 26/07/10 Cerys text from her bedroom to Helen who was having a shower that her temperature was 38.8°C. The tickly cough that Cerys had was worsening.

It was usual for Cerys to dawdle, but not this time, Cerys quickly got ready to leave her home, alive, for what turned out to be the last time.

Ironically, Cerys told Helen this was the best she had felt since being diagnosed.  

This being a Monday, Cerys was due a check up on the Chemotherapy Day Unit Withybush Hospital, with Tracy the Sister there. Cerys and Helen, so to write, click with Tracy and during Cerys’ cancer journey and they became friends. Tracy is a wonderful Nurse and we remain in contact with her.

Cerys’ temperature was checked it was now 40°C

Cerys was now very critically ill, her condition worsening by the minute, Cerys was finding it more and more difficulty to breathe. Cerys had contracted a respiratory infection and she was initially admitted on that day to Adult Critical Decision Unit, yet again, oxygen and IV antibiotics were commenced, whilst placed on a trolley bed!  



The following day Tuesday, Cerys transferred to Ward 10.

  

Cerys’ condition continued worsening even further and subsequently Cerys was transferred on the Wednesday to the Intensive Treatment Unit.

Cerys who had very little sleep, as a result of her distressed breathing and now having to where an oxygen mask, told Helen she was “tired and just wanted to sleep”

Cerys asked Helen and Tracy, when she woke up, she would see her “Prince,” before being put into a drug induced coma and placed on a ventilator to take over Cerys’ breathing, as this had become very distressed.

Helen and I now feel that Cerys knew her life was near to its end, but she was still living with the hope that she was wrong and that the hard working medical team would keep her alive.  

Neutropenic sepsis was now being talked of?

On the Wednesday I think, Helen and I spent the afternoon and evening with Cerys, who lay in a bed on a ventilator, surrounded by monitors, stands with blood products or other liquids attached to syringe drives, tubes and wires connected to her. I said “hello Cerys Mummy and Daddy are here. Cerys opened her right eye lid to look at us for a moment and then it closed. The same happened the following day, when Helen said “Hello Cerys Mummy and Daddy are here,” Cerys looked at us for a moment. Cerys remember was in a drug induced coma and this would have taken a monumental effort on Cerys’ part to have done this. This was the last time we saw an indication that Cerys was mentally aware of us being with her.

Kyle her older sister visited Cerys, sat with her, held her and talked to her.    

Dr Harry Grubb Consultant Haematologist, Mike Bartlett, Associated Specialist in Haematology and Tracy Thomas Sister continued visiting to assess Cerys, or stay with her for a while.

I do remember saying to Dr Grubb, that if Cerys had not transferred to ITU she would be dead now, Dr Grubb aggreed.



An unknown police motorcyclist, bless you, took 1 hour twenty minuets to deliver irradiated blood products from Cardiff to Withybush Hospital.

   

Cerys’ condition continued to worsen further, over the next few days and into the week end and dispite initally saying no more Cardiff and with the “straw” we were holding getting shorter and shorter, we relented.



So it was on Monday the  2nd of August 2010, whilst Alison Howells Senior Nurse and  other members of the staff team with tears in their eyes, as did we, Cerys left ITU for Cardiff, followed a short while later by Helen, for the two hour drive to Cardiff.



Cerys travel by ambulance, it actually hook 1 hour and twenty five minuets to get to there. Besides the paramedics, members of ITU staff went, to care for Cerys, bless you all.



Cerys was admitted on to the Intensive Treatment Unit and bay 10 at the Critical Care Department of the UHW.

The reason for the transfer to here was because they had a twenty year old high frequency oscillating ventilator and a laboratory that was open 24 hours a day,

Withybush General Hospital did not and should have been allowed these facilities.



On the 3rd of August Andrew and I headed for Cardiff, I felt myself getting angrier and angrier the closer and closer we got to there.

In the early days after Cerys was diagnosed this place was a place of hope, now in my heart, it had become one of despair.



We arrived and were met by Helen in the concourse; she said they were waiting for us in the Teenage Cancer Trust Unit. We could not go straight to Cerys as the medical team were with her, on a ward round?

We should have been present and listen to their medical decisions regarding Cerys’ treatment.



I didn’t want to go to the TCT Unit, me being me I wanted the toilet and after this a cup of tea.

To my total surprise on leaving the toilet Helen is in the corridor talking with Cerys’ haematology consultant, whose opening comment to me was “how was the journey?” My blood was boiling and I replied with “here we are again, I’m so angry, were going for a cup of tea, good day!” I turned on my heels and walked off, Helen and Andrew went with me.      



When we did eventually got let in to Intensive Treatment Unit, we did not feel that Andrew due to his learning disabilities, he would be able to cope with seeing his sister in a bed sleeping as he would see it attached to this ,that and the other.

So what turned out to be seven hours in total Andrew sat in the grubby relative’s room with his DS and the TV.  We had no option; we had no one to call on being so far away from home.

Andrew never complained, he told us he wanted Cerys to get better, Andrew was brilliant.

When Helen and I got to ITU, I found Cerys was not in an isolation room, as no isolation room was available for Cerys.

Cerys had been neutropenic; she was now with neutropenic sepsis. Cerys received her treatment on the open ward in bay 10. This bay, as was the ward was in a dilapidated state and in need of intensive refurbishment.

This bay was next to a set of swing doors that was being used as the connecting corridor between the Intensive Treatment Unit and the High Dependency Ward, Nurses going too and fro with aprons on that should have been removed, as part of infection control measures.    

On this very afternoon we as parents expressed our opinion to a senior nurse that this was not a satisfactory situation for Cerys to be treated in and had this written into her medical notes.

Cerys was connected to a ventilator, the oxygen it was able to give was near to maximum, a new central line had been fitted for the IV drugs that were being pumped into her body which was slowly becoming grossly swollen.

The Hickman line that had been in place for over a year, had been removed as it may have been a cause for the sepsis.

Cerys was surrounded by stands with this or that fluid hanging of it, monitors, syringe drivers, with wires lines and tubes attached to her body. The young nurse commented that Cerys looked dignified. I strongly disputed her comment, saying” where is the dignity in that,” while gesturing to her to look again at Cerys tortured body lying on the bed     



Helen and I sat around the bed that Cerys lay in we held her hands and talked to her to console ourselfs, that at this critical stage in Cerys’ life, she would get better and have a little longer with her life left to live. While trying to keep out of my thoughts that Cerys’ life was near its end and we would never see our daughter alive and at home with us again.



After what seemed like no time at all, we left Cerys to meet up with Andrew and get some refreshments. Helen brought Cerys a brush saying, “what will Cerys say when she wakes up and she can’t brush her hair.” This was a desperate act by her mother she wanted to believe that Cerys would recover.



When we went to return to Cerys we were again not allowed as the medical team were back with her as Cerys’ conditioned has worsened and they were putting her on the twenty year old high frequency oscillating ventilator.

When we were allowed back to be with our beautiful beloved daughter Cerys, we found her connected to this ventilator.

The force at which this ventilator, put air into Cerys’ lungs was such that it made her body bounce on the bed and the sound it made was loud and like that of an old building site dumper.         

This must have been around 7 pm and I noticed that no blood products or fluids hanging off the stand?

At no time were we told by the medical team that they were stopping Cerys’ blood products, although on asking Alex the nurse with responsibility for Cerys I said to her “they’ve stopped all Cerys blood products, haven’t they.”  Alex replied “ah yes.”

We now feel that the medical team had made a clinical decision to accelerate Cerys’ death. The reason for this we feel was that Cerys’ bone marrow had “crashed” a conclusion the medical teams had come to, but had not been expressed to us.

At around eight pm and after saying “good night dear daughter and telling her we would see her in the morning, we left Cerys,

We headed to the flat provide by the hospital, the same flat that Cerys and Helen had used many, many times before. When Cerys moved from being a inpatient to a outpatient and due to the frequency of the outpatient appointments and the distance involved in getting to and fro from home, this had been the only option.

We were ready as we could be, for what would be a distressing and emotionally charged night, we were not unfortunately wrong. Some time after 9 pm the hospital phone to tell us that Cerys was being taken for a CT scan, as her pupils were fixed & dilated and would we come back.



Due to the lateness we had to get to ITU through A & E. We were met in the corridor by the nurse who was now responsible for Cerys, her name escapes me. I felt so distressed, so angry, that I said, “we’ve come all this way to pay f**king car parking charges just to watch our daughter die.” This nurse said, “I didn’t need to go there.” I disagreed saying, “that’s the reality of what’s happening now!”



At the meeting, it must have been around 10.30 pm and before going to be with Cerys, the ITU consultants were telling us that investigations had identified massive swelling of Cerys’ brain and that Cerys had two strokes. There was this medication they wanted to administer that may help to preserve Cerys’ life? We aggreed to this happening, Cerys was now back on a standard ventilator and running at its maximum output.



With regards to the stopping of blood products to Cerys, at that time our thinking was emotionally charged and confused and we did not challenge the medical team at the time.

We know now that without blood products Cerys would haemorrhage internally and that is exactly what was happening. HHHhence the blood in Cerys’ urine, which a nurse said to Andrew, who was now with us, was normal when he asked? Andrew has learning disabilities & knew what he was seeing was not right.  

Andrew was now with us at Cerys’ bedside, holding her hand and talking to her, as were Helen and I.



Cerys throughout her struggle for life had not expressed any religious feelings, however Helen wanted her baptised and Helen did not want her to be a “lost soul.” It was our wish that Cerys and her older sister Kyle choose for themselves, if they wanted to get baptised. For Cerys see was denied this opportunity. 

And so it was at gone midnight, in the dimmed light of the ward and with the back ground noise of medical equipment and people talking, Eric a Vicar with the Church of Wales baptised our beautiful beloved Cerys and gave Cerys the Last Rites. Bless you Eric.  



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 in the grubbiest of relatives rooms, 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. The night was long and we slept very little, waiting all the time for a knock on the door.  

It was around 7.30 am, when that knock came and a nurse told us there had been no improvement in Cerys’ condition.

Helen and I knew what we had to do, we had to take control for Cerys’ and our sakes

Cerys had struggled for so long to keep her life and now it was for us to tell the medical team that this struggle was to stop.

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.

Cerys’ heart was, with the aid of life support machines & medications, still beating.

Eric the Vicar was back with us and Alex the nurse went to leave the bedside. I held her forearm, she stopped and I said “you will stay and watch Cerys die.”

Around 9.15 am Cerys’ life support was turned off as Helen Andrew and I held Cerys’ hands, taking and praying for her, we saw Cerys’ life leave her.

How Helen, Andrew and I grieved at that moment  

I remember devastatingly, who quickly the colour faded from Cerys lips.

Helen’s phone rang, it was Kyle to say she was driving up to be with Cerys. Helen told Kyle the tragic news that Cerys had that moment died, Kyle was utterly devastated.   



No family should see what we had seen on those remaining days of Cerys’ life, the effort made by the medical teams to preserve Cerys life.

The medical interventions that were required to do this had mutilated Cerys’ frail and tortured body that had now become very swollen.

Now before us was the dead body of our beautiful beloved daughter Cerys.

Alex the nurse said that she would remove all the medical equipment from Cerys and then would we could sit with her. We said “no, we are going,” safe in the knowledge that Cerys spirit would be with us again when we got back home.

The emptiness, the hollowness that overcame me was very black, not to have Cerys with us, not to see Cerys get married, not to hold Cerys’ baby. The feeling that comes with me out living Cerys is a f**king awful feeling to have.    



Before leaving, 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.



However we still needed to leave the car park and all I know is I was not paying car parking charges. At the barrier I pressed the help button and a voice said, “Can I help you.” I said, “We’ve just turned our daughter’s life support of, please let us go home, we just want to go home.” And with that the barrier lifted, “I said thank you, god bless you, “and we were gone.



Cerys as did we, believed that the NHS in Wales would make her well again.



I like to believe that Cerys went to a better place and that when she woke up she saw her Prince. This made Cerys happy and the Prince and her got married and have a child.



On behalf of the Lewis Family, I thank you for the concern you took, to read Cerys’ Cancer Journey.




























CERY'S CANCER JOURNEY part 2


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.