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.




























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