Bright Lights and Fairy Dust E-Book

Chris Page

• Herausgeber: Grosvenor House Publishing
• Kategorie: Sachliteratur, Reportagen, Biografien
• Sprache: Englisch

Seitenzahl: 552

Veröffentlichungsjahr: 2011

Beschreibung

Only weeks after Linda receives the devastating diagnosis of inoperable lung cancer, she and her husband, Chris, are told she may not have long to live. But Linda is not about to let cancer put her away that easily. She fights back. Facing the disease together, for Chris at least, bright lights and fairy dust become matters of life and death. Interwoven with information on her care and treatment, their story lays bare their love and devotion, their sadness and despair, their joy and hope. It reveals Linda's determination and strength of spirit and tells of the power of love.

Leseprobe

In dedication

LINDA PAGE

‘WAGAMAMA’

1st July 195227th September 2009

Forever loved, forever young

D4389

Contents

Introduction

Prologue

December

January

February

March

April

May

June

July

August

September

Epilogue

Acknowledgements

Glossary of medical terms

Glossary of non-medical terms

Abbreviations

Bibliography Books

Bibliography Leaflets/Booklets/Internet

Introduction

Linda was born in Gosport, Hampshire, during a heat wave, as the sun beamed down from a cloudless sky.

She was one of six children and her father was a serving soldier who had met and married her mother in India. From Gosport the family moved to Barton Stacey, where Linda grew up and went to primary school, moving on to secondary schools in nearby Overton and Whitchurch. By then she had grown tall, like her Dad, had her Mum’s big, almond eyes and possessed stunning natural beauty.

On leaving school, she took a job with a book publishing company in Andover, but her real calling was to nursing and so she left home and began training as a nurse at The Royal Hampshire County Hospital in Winchester. After qualifying, she continued to work on a ward there before marrying in the early 1970s.

She and her husband tried for a family and, after two miscarriages, Linda eventually fell pregnant. Serious complications arose during the birth, but after thirty-six hours in labour and an emergency procedure, her darling son Wayne was born in February 1975. Shortly after the birth, Linda began to lose blood and she lost consciousness. She was transfused with massive quantities of blood and another emergency procedure was carried out to save her life. When she came round from the operation she was told that she could no longer bear children. She was just twenty-two years old and she was devastated, but she had Wayne, the most precious thing in her life.

The following year, the family took an army posting to Germany and lived in Dusseldorf for some three years. During that time, Linda helped at a local kindergarten, as her calling to work with people was ever present. Shortly after returning to England, Linda’s husband divorced her and she brought Wayne up as a single parent, while juggling various nursing jobs.

She moved to the Newbury area and began working at Newbury Hospital as an Enrolled Nurse and it was while working there that, in June 1985, she was introduced to Chris. Neither she nor Wayne had ever met anyone quite like him, but all three fell in love; and Linda and Chris were married in October the same year. Linda had finally found her soul mate and in June this year Linda and Chris renewed their wedding vows in a moving ceremony.

While continuing to work at the hospital, Linda studied and became a Registered General Nurse. Building on this she later took a position as a District Nurse at Hungerford, a responsibility that she thoroughly enjoyed.

In 2007 Linda lost a sister and, in 2008, a nephew, both to cancer. She and Chris nursed each of them throughout their illness. Then tragically, and incredibly, in December 2008, just eight months after her nephew’s death, Linda herself was diagnosed with inoperable cancer. She spent the next ten months fighting her own battle. She knew it was a fight she wouldn’t win, but she faced it head on. She wanted to be nursed at home – the home she loved so dearly – and she wanted to be able to look out to her garden, her most favourite place. It was a tough journey, and Linda came close to death many times but, throughout her illness, indeed, throughout her life, she never, ever, stopped fighting.

Unfortunately, little by little, bit by bit, the disease overwhelmed her. She was at home when she died; she had her family and friends with her. And her bed was angled towards the garden, into which the sun beamed down from a cloudless sky.

(Obituary printed in the Newbury Weekly News, dated 8th October 2009)

Prologue

I first met Linda in June 1985, when she was a nurse and I was in the ambulance service. As soon as I saw her, I was bowled over by her beauty and wonderful smile and her personality and zest for life captivated me. I simply adored being with her, wanted to be with her as often as possible and close to her every day. In short, I fell in love. Linda lit up my life. She was wild, exciting, fun loving and strong-minded and I loved everything about her.

She had a ten-year-old son. Wayne remembers the day I proposed to his Mum, the day I left a love note in the flat, written in big letters on a huge piece of paper that read, ‘Dear Linda and Wayne, The hottest ambulance man in town loves you and there’s room in my heart for three.’ It set the tone for a beautiful and loving relationship among us all.

We moved from the flat into a rented maisonette, before buying our first house. Many years later, we started looking for a bungalow. We ended up buying a Victorian semi-detached house in the East Fields of Newbury instead. The house had been modernised in the seventies, so we spent all our time trying to restore a period feel and, in the end, most visitors agreed that it had a warmth and cosiness about it. We were blissfully happy there.

The back garden was entirely south facing and, although narrow, extended some ninety feet. After we had changed one or two things, it contained a mix of paving and pergola, lawn and light trees and Linda delighted in it every day. For her, it was a sanctuary from the rest of the world. It was a place for peaceful contemplation, for taking some sun. It was a canvas, too, upon which she splashed bold colour and tone and she made it a haven for birds, bees and butterflies. For the first time in her life she had somewhere she could truly call ‘home’ and we filled it with love.

Wayne is a professional musician and known to most of his friends and family as ‘Wag’. Because of his pseudonym, Linda and I were affectionately known as ‘Wagamama’ and ‘Wagapapa’.

Wayne met Sara and it wasn’t long before they became Mr and Mrs Wag. As a couple, they were always Linda’s ‘babies’. Linda became Sara’s ‘Mummy Linda’ and Sara was Linda’s ‘Sweetie’, or ‘Darling’. Linda called me by a variety of names. Although we were a great team, I knew I could be awkward at times and moody too. Whenever I was like that, she would throw me one of the less-than-polite names she reserved just for me. However, those times were few because we enjoyed one another in every respect. I was her ‘Baby’, her ‘Darling CP’, her ‘Crisp’. Linda was my ‘Dolly’. She was my ‘Darling’, my ‘Precious’. We shared a wicked sense of humour and a love of nature, the countryside and architecture. We laughed and cried together.

During the course of her illness, our love for one another grew stronger. We had always intended to renew our wedding vows on our silver wedding anniversary, but brought forward our plans when we knew Linda couldn’t make that date.

Throughout her treatment, I only missed one appointment and we frequently referred to the disease as ‘our cancer’ because we were in it together. After the bronchoscopy, when Linda fought for her life and required a range of medication to recover, I began to record the drugs that I gave her. I had to be sure I didn’t miss any or, worse, double dose her.

I didn’t set out to keep notes, but I did write things down when something bothered me, or I felt it was worth recording. Then, as the drug list lengthened, so did my entries in what I started to call the ‘drug diary’. I went on to document other events as they occurred and the diary evolved into a ‘journal’. It ran to several notebooks.

As we faced ‘our cancer’, we occasionally found ourselves drawn to the possibilities of what might lie beyond the plane in which we live. Some might argue that what we experienced were merely ‘coincidences’ and, to be honest, there were times when I thought so myself. However, the reality, for me, is that we opened our minds. With equal measure, we could simply have shut them off to what happened.

I remain convinced that what we have and experience in this life is not all there is. I don’t know what lies beyond our earthly existence, but I believe Linda saw and felt it ahead of her passing.

We sometimes called it ‘magic’.

Others might call it ‘faith’.

We embraced it.

Linda always knew what the outcome of her disease would be, but she never, ever, stopped fighting. She pushed back at a terrible prognosis very early on and went on to see snow and snowdrops and trees bud and blossom. She watched her garden bloom with spring bulbs and then summer flowers. She potted up geraniums and begonias, pansies and lobelia and, even when she was in her wheelchair, insisted as often as she could on getting out into her little bit of paradise. She watched me mow and scarify her lawn and prune the hedges, watched me harvest apples from her tree and tomatoes from our greenhouse.

She couldn’t go to America to see her sister and brother-in-law, so instead they came to her. She went back twice to her beloved Isle of Wight and had special time away and at home with her Darling son, Wayne, her Sweetie, Sara, and with me. The love and support of all her family and friends lifted her constantly.

The day after her diagnosis, Linda came home from work. She never went back, but she always remained a District Nurse. She was told not to drive, but she went everywhere by car. When she couldn’t climb stairs anymore, the dining room was converted into a bedsit and we remained there together. And when her legs wouldn’t carry her, I did, with a strength I didn’t know I had.

In the last week of her life, she remained bed-bound. Even then, she somehow maintained her beautiful smile throughout her pain and torment.

I miss my Darling Linda so very much and there is no doubt in my mind that I shared my life with an incredible woman.

This is our story.

“From whence comes the strength of spirit to guide us through uncertainty, so worrisome a burden?”

December

In the beginning, there wasn’t a diary, journal or notebook because, in the beginning, Linda didn’t have cancer.

Her sister Brenda, though, had died from cancer in 2007. And lightning had struck twice when, just before she died, Brenda’s son David was also diagnosed with cancer. He died less than a year later. Linda and Chris supported them both throughout their illnesses and were with them when they died – Brenda in a hospice, David at home.

Although she was heartbroken, Linda remained strong, a characteristic that she possessed in part because of some of the things that had happened in her own life, but also from years of experience in her line of work.

No, in the beginning, Linda didn’t have cancer. What she had – all she had – was a little floppy lump on the right side of her neck, just above her collarbone. Chris couldn’t see it when she first mentioned it to him in September 2008, but it bothered her enough that she went to the doctor to get it checked. The doctor told her it was probably a fatty lipoma but to come back if it got bigger, or if she was worried. In less than two months both those things happened and by then, when she showed Chris, he could clearly see the lump. When she placed the fingers of his hand over the area and gently moved them from side to side, he could feel the raised jelly-like mass.

Linda made an appointment with the surgery and saw a doctor after work on 1st December, which also happened to be the same day that Chris received his formal ninety-day notice of redundancy.

He met her outside the surgery after her appointment. She told him the doctor was concerned, had written her up for a chest X-ray, which she was to have the next day, and wanted to see her again on 3rd December.

She asked Chris to go with her that time. He met her there after work again and they sat holding hands in the waiting room. Linda was nervous but, when her name was called, she told Chris she wanted to see the doctor on her own.

It seemed like ages to him before she came out. When she did, he could tell something was wrong.

‘Come on, Chris. Let’s go. Please.’

She didn’t intend to discuss anything in the busy waiting room.

They crossed the dark car park and as soon as they got in the car, Linda fixed him with a stare and told him what had happened.

‘I’ve got full blown cancer,’ she said, in disbelief.

Chris looked back at her, dazed by every single word she had just uttered.

‘I’m going to die.’

She covered her face with her hands and burst into tears.

‘I don’t want to die.’

Lightning had struck a third time.

When they got home, Linda showed Chris the piece of paper on which the doctor had written details of the X-ray report:

‘5 cm mass in right upper lobe with adjacent consolidation and possible mediastinal increase in soft tissue.’

It was on a ‘With compliments’ slip and might as well have read ‘congratulations, you have cancer.’

When the doctor had showed her the X-ray images, even as they viewed them together, Linda thought that she must have been looking at someone else’s pictures.

‘I’m so sorry,’ the doctor had said.

In plain English, there was a two-inch lump in the top of Linda’s right lung, which had probably already spread and so was likely to be inoperable.

Sitting opposite one another at the dining table, she and Chris started to cry. He got up and went round to try to comfort her, but he didn’t know what to say or do that could possibly take away the dread and fear they now faced. Having watched Brenda and David die, Chris could only recall the dark days of their illnesses and the short time they had left after their diagnoses.

‘I must tell Wayne,’ Linda said through her tears.

She wept as she passed on all the information, while Chris knelt beside her with his arm around her waist. Eventually, she passed the phone to Chris, who spoke calmly but firmly.

‘We’re going to have to be strong, Son. Stronger than we’ve ever been in our lives.’

He knew they all had to tackle it together. Wayne was stunned by the news, but felt the same as his Dad. Chris handed the phone back to Linda and she sobbed a tearful goodbye.

She turned to Chris and they hugged one another.

‘Why?’ Linda asked. ‘Why me? What have I done to deserve this?’

‘Oh, Darling, I don’t know what to say.’

The next day, Linda went to work just as if nothing had happened but, because it had, she was advised not to stay and later wrote in her patient appointments book:

‘Finished work today.

Sent home – Lung cancer!

Sick certificate done this teatime by doctor.’

She also blocked out every remaining day of the year in her book with the letters, ‘S/L’. Sick leave.

The sick certificate signed her off for the next two weeks. When Chris got home from work, she showed it to him. In the area marked, ‘Diagnosis of your disorder causing absence from work’ the doctor had written, ‘Lung cancer’. Reading it made his heart jump. There it was again, written confirmation of the most serious of situations.

Linda knew that under guidelines set out by the National Institute for Clinical Excellence, or ‘NICE’ for short, cancer patients were ‘fast tracked’.

A specialist would now see her, possibly within two weeks.

They cancelled all the engagements they had planned for the weekend and Wayne and Sara came to stay with them. On 7th December, they went for a six-mile walk to Donnington Castle and back, via The Blackbird pub, where they stopped for one of the best cheese ploughman’s ever. Considering her circumstances, Linda didn’t look like someone with a serious and life-threatening illness and she was only occasionally a little breathless, never once flagging behind. It was a bright day and, despite their sadness, they all managed smiles and laughter in the winter sunshine. They talked openly and honestly about what was likely to happen. They resolved to be strong for one another and to face it head on. Wayne and Sara even made a little card that evening, which consisted of two stick men and two stick women, with a caption below it:

‘The four of us, together’.

Just as Linda had predicted, it wasn’t long before she heard from the hospital. She was given two appointments for 10th December: one for a CT scan and the other to see Dr Zurek, from the Department of Respiratory Medicine. It was a little awkward that the appointments were on the same day, because the scan was in Reading and Dr Zurek’s clinic was in Newbury, but Linda and Chris were confident they could get to both.

They knew from previous experiences that parking at the Royal Berkshire Hospital was always difficult and allowed ample time to get to Reading. They did well and got to the CT Scanner Suite in main X-ray twenty minutes early. However, it was another hour before Linda was scanned and as Chris sat in the waiting area, he wondered if they would make their appointment with Dr Zurek.

Linda came back through to the waiting area, putting on her coat as she walked. She knew time was pressing, so she told Chris he would have to do a ‘Red One’ drive back to Newbury. He didn’t have a blue light, but their Ford Focus screeched into the car park at the West Berkshire Community Hospital with only minutes to spare.

The CT scan was crucial to Dr Zurek’s appointment and he quickly brought up the images on screen of what had taken place an hour earlier in Reading. He also had the X-ray results there and this was the first time Chris had seen them. Chris reeled at the extent of the misty shadows on the chest X-ray, as he could see that one side of the image was clear while the other was quite milky. The CT images were even more revealing and, like Linda, for a brief moment Chris could not believe he was looking at his own Darling wife’s results. Dr Zurek dragged a pointing device through the CT images and they could all see, detailed in stark white, a large area in her right lung and some other, smaller, white areas elsewhere. It was extremely likely that this was all cancer but, in order to treat Linda, it was necessary now to establish exactly what they were dealing with, so Dr Zurek said he would arrange for a bronchoscopy to be carried out urgently.

The next day, Linda made contact with the Macmillan Nurse, who would work with her throughout her illness. As part of the multidisciplinary team herself, and because of her work, Linda already knew her. She arranged for her to come to the house before Christmas, to meet Chris.

On the evening of 12th December, just as they had for many years, Linda and Chris went to the Hungerford Victorian Extravaganza, where Chris was going to play guitar and sing. So that he could do so, his sister, also called Linda, went with them and the two Lindas stayed together all evening. This was an important part of Linda’s calendar. She didn’t want to miss it and the event, as always, did not disappoint.

She received a letter and an information leaflet on the bronchoscopy procedure from the Respiratory Medicine Department, notifying her of an appointment on 16th December.

Bronchoscopy

The word ‘bronchoscopy’ comes from two words: ‘broncho’, which relates to the larger tubes that lead down to the lungs, and ‘scopy’, which roughly translates into ‘have a look at’. The procedure enables the large air passages of the lungs to be examined and the piece of equipment used to do this is called a ‘bronchoscope’.

Once, when he was training as a paramedic, Chris watched this procedure being carried out in an operating theatre with a long, rigid metal tube. If he hadn’t seen it with his own eyes, he would not have thought it possible for such a piece of equipment to go so far down into the bronchial tubes and for the patient to survive.

These days usually a flexible bronchoscope is used. It is still a tube, but it contains thin glass fibres that transmit camera images back to a screen so that the doctor can see what is going on inside the patient. Moreover, whereas the rigid metal tube that Chris had witnessed necessitated a general anaesthetic, the flexible bronchoscope usually only requires that the patient be given a sedative injection, although sometimes even that isn’t necessary.

Before the procedure starts, an anaesthetic spray is used to numb the patient’s nose and throat. If the sedative injection is given, it is usually in the hand or arm and it often makes the patient forget afterwards what has happened.

The doctor is able to manoeuvre the tip of the bronchoscope, left and right and up and down, so that it goes exactly where he wants. He passes the flexible tube through the nose or the mouth, down through the vocal chords and larynx (the voice box), into the trachea (the windpipe) and further on down to the breathing tubes (the bronchi). Not surprisingly this can make the patient feel that they can’t catch their breath, so sometimes extra oxygen is given and more local anaesthetic administered through the bronchoscope to relieve any coughing as it goes on down into the passages.

There is a channel in the flexible bronchoscope that enables specimens to be taken from the bronchial tubes. These can include washings, brushings and biopsies, where very small chunks of tumour tissue are nipped out. The patient might feel pressure or tugging, but not usually pain.

Linda’s leaflet explained that in most cases, bronchoscopy is a safe procedure that carries little risk and it is normal for the patient to cough up a little blood for a few days afterwards.

On the day of the bronchoscopy, Chris went to work. His employers were aware of the situation and were supportive, but he felt he had a responsibility to continue with his hand over if he was ever going to get it done before Christmas. After the seventeenth, he only had one more day to work before the New Year.

He asked Rosie, Linda’s best friend, if she would accompany Linda to the hospital. Rosie was very pleased to have been asked and said she would look after her.

In his office, Chris wrote on some sticky notes:

‘Today Linda has gone to RBH for the bronchoscopy, one thing she has dreaded from the start. Brenda had one; I think David had two. David had said it was a horrible experience and we imagined it would be.

Rosie’s taken Linda to the appointment so I can come to work and carry on handing over my job. I feel awful about that and, right now, I can’t stop thinking about what’s happening at the hospital. Linda has her best friend in the whole world with her and Rosie is glad to be helping, but Linda would far sooner I was there in Rosie’s place. It’s not about the physical thing. Physically there’s nothing I could do that Rosie can’t. It’s about the emotional side. Sharing this bumpy journey with my wife. But I’ll be home tonight and I will care for her and find out all about the dreaded bronchoscopy.’

Chris called Rosie a couple of times throughout the day. Things appeared to have gone well. Rosie said that after the procedure, Linda said she was glad it was out of the way and was pleased to be coming home. Chris thanked her for taking care of his Darling.

When he got home from work, Chris went straight into the lounge. Although she was resting on the sofa, Linda appeared to have taken everything in her stride. She was a little sore, but happy to be home and she talked with Rosie and Chris almost as though nothing had happened. However, when she described the procedure to them, they were horrified. Linda said she had been ‘with it’ throughout, even after being given the sedation. As the scope went down, it had made her cough and she became very distressed when the biopsy was taken. She heard the team mention something about some blood then, she said, they washed her lung with saline to flush the blood away. She felt as though she was drowning and was relieved when the scope was finally pulled clear from her throat. She told Rosie and Chris she never wanted to go through that again, but it was over, behind her, something that had to be done. After listening to her description of what had happened, Rosie and Chris were surprised at how well she was. It was a measure of Linda’s strength.

She was booked for a follow up appointment with Dr Zurek on 18th December, by which time he would know the results.

During the course of the evening, Linda occasionally coughed up a little blood, but the leaflet had told her to expect that and so she wasn’t too bothered. However, the cough continued to produce blood throughout the whole of the next day and, with it, she was by now experiencing some pain. She lay on the sofa most of the time, feeling generally unwell and running a temperature. Chris sat beside her, fussed over her and was concerned for her. Instead of getting over the bronchoscopy, she appeared to be suffering somewhat from it.

When the coughing, pain and fever continued into the third day, Linda called her Macmillan Nurse again, who recommended that she should ask her doctor for some pain relief. Linda’s GP, Dr Faulkner, made out a prescription.

• Oramorph, 10mg in a 5ml spoonful, an ‘opioid’ liquid, for chronic pain relief.

• Tramadol, 50mg, an opioid capsule, for severe pain relief.

• Zopiclone, 3.75mg, a ‘hypnotic’ tablet, to help Linda sleep.

• Symbicort inhaler, an ‘anti-inflammatory’ and a ‘bronchodilator’, to help Linda’s lungs.

After lunch, and after collecting the prescription and drugs, Linda and Chris went to the appointment with Dr Zurek. It was in the Department of Respiratory Medicine at the Royal Berkshire Hospital in Reading. Before anything else could happen, she had to be ‘weighed in’. She was 71.68kg (or 11st 4lb). As Linda and Chris looked around the waiting room, they realised that they were in the company of patients with nasty coughs, bubbly chests and poor colour, some of whom would receive a poor prognosis that day.

Linda’s name was eventually called and, when she and Chris went through to see the doctor, it was exactly what happened to her. She and Chris listened carefully as Dr Zurek told her that the bronchoscopy confirmed she had ‘Non Small Cell Lung Cancer’. They both thought they heard him say that the bronchoscope had gone clean through the tumour as it went down. He prescribed a course of Augmentin 625mg, an antibiotic, for Linda’s fever, as he felt she might have a slight infection.

Finally, in discharging Linda from his clinic, he introduced them to the Clinical Nurse Specialist, who explained her role and gave them her contact details and some information leaflets about lung cancer.

Dr Zurek subsequently confirmed everything in a long letter explaining that Linda’s lymph nodes in her chest, neck and right armpit appeared to be involved and that her left adrenal gland was enlarged, which may have been due to the spread of cancer to that area. To confirm that the cancer had spread to her lymph nodes he was arranging an ultrasound guided biopsy of the lymph gland in her right armpit. He thought Linda’s chest pain was also due to the cancer, and put in his letter that he was referring her to the Oncology Consultant, who would discuss her treatment options and look after her from that point.

The letter certainly summed up the facts of the matter and Linda and Chris realised what big trouble they were in.

Lung Cancer

Our bodies consist of millions of cells, which join to form human tissue and body organs such as the heart, lungs and liver.

In a very rough analogy, you could liken cells to little polystyrene beads. A single bead might be so small that on its own, you might not even notice it, but if you put enough beads together, you could make a very nice beanbag. And every single bead in it would have to be in good condition if it was to stay looking good and feeling comfortable.

Now back to the human cells. Every single cell contains a set of instructions telling it exactly what it should be doing and whereabouts in the body it should be. The instructions tell it when to reproduce (which it does by dividing) and when to die. When the instructions are wrong, the cells may carry on reproducing when they shouldn’t, may not die when told to or may not stay where they should. These are cancer cells and every time they divide, they pass on the wrong instructions. It only takes one cell to go wrong to start the process off but, as it divides and as the cells multiply, they can form a tumour, a word used to describe a clump of cancerous cells. As the tumour grows, it can even arrange its own blood supply by constructing blood vessels. Where in the body the cancer starts, affects how fast it will grow and whether or not it will respond to treatment. In addition, as the tumour grows, the cancer cells in it can break away from where they started out and start growing on other tissues and organs. This is called metastasis, sometimes referred to as ‘secondaries’ and, when this happens, the patient’s symptoms can worsen and become difficult to treat. As a result, there is less chance of curing the cancer.

A major problem in cancer is that it can often be some time before the tumour results in symptoms that the patient notices. This is what happened to Linda. What she inadvertently found when she discovered the lump on the right side of her neck were the secondary cancer cells – the metastases. She had none of the common symptoms of lung cancer, which are shortness of breath, coughing and weight loss, and yet the primary cancer in her right bronchus was quite large and had already sent out breakaway cancer cells into her lymphatic system.

Full diagnosis is confirmed with a biopsy, which is then sent to pathology for testing. There are two main types of lung cancer and the biopsy will establish whether it is small cell lung carcinoma or non-small cell lung carcinoma. It is important that the medical team knows which cancer they are dealing with, because the treatment and prognosis varies with each.

The most common cause of lung cancer has been found to be long-term exposure to tobacco smoke, but this is not always the case. Non-smokers too can get lung cancer, sometimes through a combination of genetic factors and air pollution, including second hand smoke.

It wasn’t something that particularly crossed anyone’s mind until Linda was diagnosed, but with the benefit of hindsight, cancer was familial. Many of Linda’s family, including Brenda and David of course, had been affected by a cancer of one kind or another, and on both her mother’s and her father’s sides of the family there was history. Her father and two of her uncles had died from lung cancer; an aunt had once had a tumour removed from her neck; Linda had one cousin who had once had prostate cancer and another who’d had oesophageal and prostate cancer. Another sister had been treated for breast cancer.

Although Linda wasn’t a ‘never-smoker’, she was an ex-smoker who, through family and work, was regularly exposed to second hand smoke. She was also exposed to lots of airborne dust and debris as she and Chris did up their old house. Such history placed her at greater risk of developing the disease somewhere in her body.

The diary

Linda had become very ill in a very short time. She now had several drugs to take, each for a different symptom and each with a different dose at different times of the day. Chris reckoned it would be a good idea if, between them, they started noting things down and recording what drugs she took, and when. He bought a little exercise book from Smiths and marked each page into three columns, the first for the date and time, a wider middle column for a description of the drug or event and the right hand column for the doses. He didn’t think it was wise to trust things to memory; too much was going on now. He wrote on the cover of the exercise book, ‘Linda’s Medication’ and they each started to write in it. The diary had begun, although it was only very rough and sketchy to start with.

For instance, Linda’s sick certificate had taken her up to 18th December, so she had booked an appointment at the surgery with her doctor to get another one. However, she was running a high temperature and was feeling far too unwell to go, so the diary noted that instead the doctor went to the house on the nineteenth and issued the next sick note. Nothing was written for the twentieth, but the truth was that Linda continued to be unwell following the bronchoscopy. By now, she finally had the cough that had been missing from the list of common symptoms of lung cancer. She was also breathless and her chest was bubbly with mucus. That night she and Chris didn’t get to bed until very late and, on 21stDecember, Chris wrote notes on some paper, rather than in the diary:

‘Awake at 2.30 a.m. even though we didn’t go to bed until 12.30 a.m. Linda has pain again and her chest is very bubbly. ‘The cough’, as I think we should call it now, persists, but brings up nothing. It just doesn’t stop and it doesn’t get any better.

Taking account of the situation, and hoping that modern medicine can give Linda something – anything – to ease her suffering, she and I decide jointly to call the out-of-hours doctor.

The doctor came at around 3.30 a.m. He came out because I explained Tuesday’s bronchoscopy and related the symptoms that Linda has had since. He came out because he thought Linda might have sustained a pneumothorax as a result of the procedure. We got the idea that was the only reason. He checked Linda’s blood pressure – ok. Her ‘sats’ – ok. Her chest – clear. Clear? Clear? Is his stethoscope broken? Linda is still bubbling, but he says it’s clear, although he did say there’s probably a bit of infection. The doctor was very pleasant, but Linda and I got the impression we were being told, ‘keep taking the tablets’. Oh, and the morphine, keep taking that, even though it suppresses ‘the cough’. This is being caught in a vicious circle. We need ‘the cough’ to get rid of the mucus in Linda’s lung, but the tumour may be blocking the airway and preventing the mucus from getting out. ‘The cough’ isn’t productive, but it hurts Linda so much that her intercostal and abdominal muscles ache with pain. Ah, pain. The morphine will ease the pain, just like it will suppress the cough. The lung will continue to secret mucus, but it’ll sit there, in its infected state, and up will go Linda’s temperature again. More mucus, but no cough – sounds like a place we don’t want to be. The doctor left shortly before 4.00 a.m. Linda took a spoonful (10mg) of morphine and dozed until 6.00 a.m. still bubbling as she tried to sleep.’

The doctor advised that the only course of action was to keep taking the Oramorph and tramadol, as no other treatment was available.

After their early morning tea in bed, Chris tried some chest physio on Linda and gently tapped her back, like some bongo player, hoping to help clear some of the snot in her lung as she lay on her side on the bed. After a ten-minute percussion session, they both gave up on it, as nothing seemed to happen. Then, five minutes later, Linda started to cough up thick, sticky, brown phlegm. They repeated their efforts twice more, Chris tapping her as hard as he dare without adding to her pain.

They went to see Chris’s parents. Chris’s Dad, who suffered with a breathing problem himself, loaned Linda his nebuliser and gave her three Ventolin nebules. When they got home, Chris did some more chest physio and Linda nebulised for ten or fifteen minutes. She managed to get rid of more muck when ‘the cough’ kicked in.

22nd December 2008

It was Chris’s last day in the office for two weeks. Linda and Chris got a late appointment with her doctor at the surgery. As ill as Linda was, she insisted this time on getting to the surgery. Dr Faulkner topped up the antibiotics with another course of Augmentin 625mg, prescribed several boxes of Ventolin 2.5ml nebules and saline 2.5ml nebules for the inhalation therapy and, because the side effects of tramadol and morphine can include constipation, she prescribed some lactulose solution. Linda would later top this up with off-the-shelf Senokot tablets, to make sure she didn’t get bound up.

After seeing the doctor, they spent some time with the surgery’s nurse practitioner, Sue. Sue and Linda had known one another for at least twenty-five years, but each had gone their own way in nursing before their paths inevitably crossed again at the surgery following Linda’s bronchoscopy. She offered advice on how Linda might try to shift the muck on her chest without making things worse. Problems could arise, Sue explained, because actually ‘coughing’ caused the airways to tighten up. She said it would be better if Linda could learn to ‘huff’ instead and gave her a book on breathing techniques. In it was a section on clearing secretions (mucus) which described ‘huffing’ as taking a medium to small breath in, then forcing or squeezing the air out by tightening the abdominal muscles, but keeping the mouth open. The ‘huff’ had to be long enough to move the muck up the small airways, but not so long that it produced a ‘wheeze’. The ‘cough’ could then go ahead and clear the mucus when it had arrived at the back of the throat. ‘Huffing’ was a lot more difficult to do than it was to describe.

Christmas and in particular the run up to Christmas, was difficult. Quite apart from all the cards they received from friends who were so far unaware of what had happened in just a few weeks, Linda and Chris weren’t even sure she would make it. The word had gone out to most quarters, but for some not in time. And some people – those who were on the Christmas card list and usually only corresponded at Christmas – remained completely unaware because Linda and Chris only managed to send out a few cards. In the fullness of time, though, everyone would know. Everyone.

24th December 2008

As arranged earlier in the month, the Macmillan Nurse came to the house to see Linda and to meet Chris for the first time. He knew nothing about Macmillan. He didn’t know, for example, that the charity’s history went back to 1912, but this was probably because Chris had only ever imagined cancer to be a ‘modern’ illness. He thought people back then died of tuberculosis, scarlet fever, or smallpox and certainly didn’t know that cancer had actually been around for thousands of years. He also didn’t realise that Macmillan Nurses don’t do hands on nursing, so he was surprised upon meeting the nurse to see that she didn’t wear a uniform.

They discussed Linda’s present condition; how ill she had become following the bronchoscopy. Linda told her about how she thought the bronchoscope had pierced the tumour and sent it flying everywhere, like someone puffing on a dandelion seed head. But this was conjecture and the discussion quickly returned to the matter of Linda’s pain, cough and bad chest. Linda was taking more and more painkillers but she still couldn’t get on top of the pain.

She had blood taken in the afternoon, in readiness for the ultrasound-guided biopsy, which was now booked for 29th December.

25th December 2008

Wayne and Sara had left presents for the folks under the Christmas tree, in a lined basket decorated with crimson, glittered ribbon. As they opened each present, a theme emerged. Sheepskin mules, a dressing gown, white fleece blanket, Mama Mia DVD and some popcorn were all things that would keep Linda cosy, warm and entertained while she and Chris spent time at home.

Beneath the wrapped presents, at the bottom of the basket, was a shiny foil envelope. Their babies had something else for them.

Linda opened it and took out a handmade card. A voucher:

The Perfect Night Out For Ma & Pops,

After your perfect night in, this voucher is redeemable through the Marshall-Pages for a perfect night out for two in London town. Your choice of theatre show, your choice of meal!

with much love xxx

29th December 2008

Chris noted in the diary that Linda was coughing up thick brown muck but, thankfully, no blood. ‘The cough’ was quite pronounced and even though she tried very hard to ‘huff’, Linda couldn’t prevent the cough reflex from kicking in. And she was still in pain.

She went for her ultrasound-guided biopsy at The Royal Berkshire Hospital. Dr Gibson, the Consultant Radiologist who carried out the biopsy, allowed Chris to sit in on the procedure. The lights in the cubicle were dimmed and Linda was asked to lie on the bed, next to a trolley loaded with the ultrasound equipment and a monitor screen. She raised her right arm, so that the doctor could get to her armpit, and he gave her an injection of local anaesthetic there. Then a handheld device (the ‘transducer’) was coated with a clear gel and Chris watched the monitor screen as Dr Gibson ran it over Linda’s exposed armpit. In seconds, the screen produced images of the soft tissue that lay beneath her skin and it wasn’t long before the Consultant located Linda’s lymph nodes. Chris continued looking at the screen and on it he watched him insert the biopsy needle through Linda’s skin and into one of the lymph nodes and then, a bit like a tiny spud gun, the device shot into it and withdrew a small core of tissue, all in less time than it took to blink. Dr Gibson took a few samples then wiped the gel from Linda’s armpit. There was barely any blood but Linda was asked to stay for an hour, just in case any complications arose, and she and Chris held hands trying to find comfort in the knowledge that they had just taken another major step on the cancer journey.

Linda’s next appointment that day was at her GP surgery, back in Newbury. Her antibiotics were topped up with a prescription for a course of erythromycin 250mg, to knock back ‘the cough’ and to clear up any remaining infection. A sputum test was arranged and Linda was prescribed some Zomorph ‘MST’ (Morphine Sulphate Tablets). These were slow release capsules, to spread pain relief over a longer period. She was advised that she should continue with the Oramorph and tramadol as well as the new drugs.

30th December 2008 – Happy Birthday, Chris

This was not a day for celebration.

At The Berkshire Cancer Centre, Linda had her first appointment with the Oncology Consultant, to whom Dr Zurek had referred her on 10th December. He examined the raised areas in Linda’s neck and armpits. Although he was still waiting for confirmation of the results, the biopsy of her lymph nodes was likely to show that the cancer had spread and, as a result, was inoperable. She was told that because lymph nodes are near nerves they would cause trouble as it continued to spread.

Linda and Chris asked him how long they had.

The answer, like the question, was unfair.

He suggested some chemotherapy, but Linda’s ongoing apparent chest infection, which nearly two weeks of antibiotics (amoxicillin) hadn’t cleared up, was cause for concern. She would have to be well to have chemotherapy, so he sent her for another chest X-ray and got the results straight back. There was no change. She was advised to continue with the Augmentin and the erythromycin she had recently started. If the chest infection still didn’t clear, she was likely to be admitted to hospital for a course of intravenous (IV) antibiotics.

An ‘eGFR Kidney Function Test’ was also required before any chemotherapy could start.

The Kidney Function Test

‘eGFR’ in this context stands for estimated Glomerular Filtration Rate and this is used to establish how well the kidneys are working. ‘Glomeruli’ are tiny filters in the kidneys and if they don’t work properly then kidney function is impaired.

To obtain the eGFR figure, a blood sample is taken and tested for a chemical called ‘creatinine’. This is something that the body produces naturally and which the kidneys constantly have to clear from the bloodstream by disposing of it in urine. Normally, creatinine levels are pretty much constant on a day-to-day basis, but if kidney function is impaired, those levels will rise. Too much, or abnormally high levels of creatinine in a blood sample can indicate impaired kidney function. Chemotherapy drugs, as they go through the body, have to be cleared by the kidneys, just like creatinine. Too much creatinine in Linda’s blood might therefore mean also that chemotherapy drugs won’t be cleared effectively and so chemotherapy might not be possible or appropriate, or the dose would have to be tailored to match Linda’s kidney function.

Pain was becoming a real problem. Nothing Linda took seemed to knock it back sufficiently to give her relief. At the end of a terrible day, she went to bed in pain. She very soon woke up again with pain.

31st December 2008

She told Chris she felt unwell. She was feverish, had been through another bad night and still couldn’t shake the pain. At six twenty, she took her temperature and recorded it as 38ºc. The ‘normal’ temperature range for a healthy individual is between 36.1ºc and 37.5ºc.

Desperate for some help and advice with managing her pain, Linda called one of the local Macmillan Nurses. Linda told her what painkillers she was typically taking in a day and was advised to increase the Zomorph slow release tablets immediately to 60mg, twice a day. The current regimen was almost certainly insufficient. The Macmillan Nurse then contacted Dr Faulkner, who wrote out a revised prescription for Chris to collect.

By six in the evening, her temperature had gone up to 38.3ºc. An hour later, it was running at 39ºc. She felt extremely unwell, but was determined not to let down the family and friends who were coming to celebrate New Year’s Eve at their home that night. There was cooking to be done: rice, chilli, curry. And the house had to be made ready to receive guests.

The celebrations that followed were fantastic. Linda laughed and smiled throughout, but she looked pale, drawn and haggard. She tried so very hard to keep going, but eventually she and Chris went on up to bed, to the attic room, which they affectionately referred to as the crow’s nest. Linda was exhausted and in pain.

“That death should come and we, ready for its coming, should not seek to stand in its way.”

January

1st January 2009

Her temperature was still high, at 38ºc. The previous day’s celebrations had resulted in disruption to her medication and Linda had gone from lunchtime on New Year’s Eve until the early hours of New Year’s Day with no morphine. She had also skipped her antibiotics. By the time she went to bed, she was in a lot of pain. Then she mentioned to Chris, for the first time, concerns about her throat, which, she said, felt restricted. Linda wondered if she had an abscess on the lung. She began to consider the possibility that she may have to go into hospital for those IV antibiotics to clear up her wretched chest infection and she couldn’t begin to think about chemotherapy until she was ‘well’ again. She started to take paracetamol, hoping to bring her temperature down.

2nd January 2009 – Friday

The Macmillan Nurse called at the house. Linda told her she was still struggling to get on top of her pain and had recently been coughing up dark muck. Christmas and New Year had been a battle. Now she had to get herself well so that she could prepare for chemotherapy. It was suggested that a different type of painkiller might help, because morphine only works on certain types of pain, and the Macmillan Nurse said she would find out what could be given for ‘the cough’.

She telephoned that evening to say she had spoken to Dr Paul Howard (the Palliative Care Consultant) and Dr Faulkner (Linda’s GP). Following their discussion, Dr Faulkner wrote a prescription for gabapentin, to treat neuropathic pain, and some simple linctus, to help reduce ‘the cough’. It was too late to do it now, but Chris would pick up the prescription from the doctor’s surgery on Monday.

3rd January 2009

Linda suffered another unsettled night of coughing and pain. That morning, her temperature was 38ºc. Unusually, she began writing her own drugs into the diary and, whether on medical advice or because of her own experience, started to take a double dose of erythromycin tablets, hoping it would help to clear up the chest infection.

4th January 2009 – Sunday

They had gone to bed early the night before, but Linda and Chris had a very disturbed night.

Linda wrote directly into the diary:

‘0915hrs. Feeling very unwell. High temp again. Contacted the out-of-hours doctor service.

0920hrs. Spoke to the doctor – I explained my diagnosis and the date of the bronchoscopy (16.12.2008). Put on Augmentin for right lung infection and, one week later, Erythromycin. Temp was coming down to 37.

In last 24-hours temp going up to 38.8 despite taking Paracetamol. Doctor unable to get me a bed on CDU for IV antibiotics and blood cultures. He asked if I would go through A&E and wait to be seen. I said no as I feel rough, unwell. He will fax prescription through to [supermarket] pharmacy for Metronidazole tablets. Have told him I will see my GP tomorrow morning. Contacted pharmacy – drugs ready to be collected.’

Chris went straight round to the supermarket to collect the new prescription for metronidazole. This was a strong antibiotic and it was to take the place of erythromycin for Linda’s ongoing chest infection.

5th January 2009

Even before he had a chance to collect the prescription Dr Faulkner had made out on Friday, Linda was admitted to Royal Berkshire Hospital’s Adelaide Ward to have IV antibiotics. It was unlikely that she would be allowed home until her temperature returned to normal and remained stable for twenty-four hours. On admission her weight was noted as 70.3kg (or 11st 1lb) and her temperature 36.7ºc. Her eGFR kidney function test had already been booked for the next day and could still go ahead, the only difference being that she was now an inpatient rather than a day case.

The nurse took Linda’s temperature by placing a digital thermometer in her ear, and got a reading of 38.6ºc. Linda was definitely in the right place to get help because, ever since the bronchoscopy on 16th December, her health had declined. Chris likened it to being in an aircraft in a steep dive. No one could bring the nose up. If things continued, they were going to crash.

Despite Linda’s poor health and prognosis, the doctor on the ward, who had admitted Linda, insisted that she and Chris should think of it in terms of ‘living with’ and not ‘dying of’ cancer. It all seemed like the same thing. ‘Living with’ it didn’t make either of them feel differently about it, at least not just at that moment.

She remained in hospital until the afternoon of 13th January. Chris went to the hospital every day, although not all day – he told Linda he couldn’t cope with being there all the time. She wanted him to stay in the relative’s room, so that he was right there if she needed him, but he declined, much to her clear disappointment.

Linda was initially in a single-bedded side room, but later transferred to a two-bedded room where she remained until she was discharged. There was another woman in the room. Angelina also had lung cancer with metastases. Angelina was more ill than she herself realised and said to Linda and Chris one day that she would be happy if they could give her another ten years. Linda and Chris both knew instinctively that it wasn’t going to be. Watching the daily decline in Angelina’s health was upsetting, because they imagined that Linda wouldn’t be far behind her. One day, they heard the doctor asking her strange questions behind her closed bed curtains. That is, they sounded strange to Linda and Chris, because anyone should have known the answers to questions like, ‘Who is the queen of England?’, ‘What year are we in?’ and ‘What’s the name of this hospital?’

The doctor was carrying out something called an ‘Abbreviated Mental Test Score’ because it was possible that the metastases had spread to Angelina’s brain. Chris realised that might also explain why she occasionally had involuntary movements that caused her to launch her orange juice across the room, or the nurse, or the bed; movements that annoyed her so much she would use the ‘F’-word to express her frustration.

Little by little, just as Angelina appeared to be declining, Linda appeared to be improving. The professionals had worked hard to bring the situation under control and managed to pull back on the joystick. Linda had gone from a steep dive into a glide slope. She had lost a bit more weight and was now down to 68.65kg (10st 11lb) but she had been given intravenous antibiotics (Tazocin and metronidazole), which appeared to have helped and, crucially, her blood test results were encouraging. When Chris collected Linda on the afternoon of 13th January, he was overjoyed to be taking his Darling home and was very grateful to all the staff for helping her to come through. Her discharge letter read, ‘Chest sepsis following bronchoscopy’. They thought it confirmed their suspicions about the procedure.

The doctor had set out a new drug regimen for Linda:

• She was to nebulise with Ventolin and saline nebules four times a day, at breakfast, lunch, tea and before bed.

• Take 10mg Oramorph for pain every two to four hours.

• Continue with Zomorph at 60mg at 9.00 a.m. and 9.00 p.m.

• Start metoclopramide, three times a day. This was an anti-sickness drug to help prevent nausea and vomiting now that she was on a higher dose of morphine.

• Take one zopiclone (3.75mg) regularly from now on, for sleep, just before bed.

• Have 10ml of Gaviscon at breakfast, lunch, tea and supper. With the additional medication she now had to take, the Gaviscon was to line her stomach and prevent the stomach contents from bubbling back into her oesophagus (called ‘reflux’).

• Take two paracetamol (1000mg) as per the Gaviscon.

• Use a Symbicort inhaler once a day, in the morning.

• Take gabapentin, one 300mg capsule, three times a day. Dr Faulkner, in consultation with the Macmillan Nurse and Dr Howard, had only just prescribed this, before Linda was admitted.

Angelina remained on the ward.

14th January 2009

Although Chris hadn’t known it at the time, Claire, the Community Physiotherapist, had tried to contact Linda during the week. Claire didn’t know that Linda was in hospital and left a note through the door asking her to make contact if she wanted a home visit. Now that she was back, Linda was ready to try anything that might help her rally and so she had arranged with Claire for her to come that day.

Claire advised Linda and Chris on breathing exercises that would help Linda to breathe more easily and clear any muck from her chest. The ‘huffing’ was still important, so as not to cause unnecessary constriction around Linda’s throat, but it was also important that she controlled her breathing so that she didn’t ‘over breathe’ and distress herself. And, to ease the pain Linda suffered, Claire recommended that she should sit at the edge of the sofa with a cushion held to her ribs when she did start to huff and cough.

The doctor also made a house call that day and gave Linda another sick certificate, this time for three months. She then prescribed some Calogen energy-dense supplement, to help build Linda up and to help her fight her symptoms; cyclizine tablets, an anti-sickness drug to be taken three times a day; and omeprazole 20mg capsules, to line her stomach, which she was to take once a day in the morning.

For the first time, the doctor indicated to Linda that if she didn’t soon pick up she might only have weeks to live and should consider putting her life in order now. In light of the most recent events, this didn’t come as a surprise, but was still desperately upsetting to hear. Linda and Chris realised that, among other things, they would very quickly have to make their wills, tasks that always seemed to have slipped down their list of things to do.

‘I’m not taking cyclizine,’ Linda said, as soon as the doctor left the house. Chris knew her reasons were founded on her experience as a nurse.

The prescription drug list was getting longer all the time. Linda would certainly need further prescriptions, so Chris picked up a form to apply for a ‘PPC’, a Pre-Payment Certificate. For an annual fee of just over £100, if the patient was likely to have more than fourteen items in one year, the certificate would cover all prescriptions in that year. They were sure it would be money well spent because forking out £7.20 for every drug item was becoming expensive.

15th January 2009

Her day started early. Linda tried to rest at home, still weak after coming out of hospital. However, throughout the day, there was an almost constant stream of well-wishing visitors, concerned for her health, worried that she might die. Her friends and family were shocked at how ill she had become in such a short time, and with love and concern, they tried to bring some cheer, along with flowers and cards.

16th January 2009