After her A-Levels, Daisy flew out to New Zealand returning home in 2013, as she was experiencing acute discomfort from an abnormal area on her tongue. A doctor examined her in New Zealand and, on her return, had surgery with a biopsy by a maxillofacial surgeon at St Richard’s Hospital Chichester. Daisy was hospitalised, but we thought that the ulcerated area of her tongue had been removed. She stayed at home to recover from this first biopsy and operation, returning to New Zealand once she had healed. Daisy underwent further biopsies in 2014, 2016 and 2019. These biopsies caused Daisy constant pain, resulting in her being incapacitated for over three weeks at a time. Every biopsy was agony for Daisy. She could not manage everyday food for two weeks and was forced to have a liquid diet. Daisy adored her food, and this got her down. She hated what was happening to her but always put on a brave face and never made a fuss.

As you may know, Daisy worked as a teacher and resident at Seaford College. In September 2019 she moved home to Carthagena Farm due to her ill health. In the Autumn of that year, she managed to go back to work for half a term but then had to stop due to severe discomfort necessitating a return to St Richard's Hospital. There was a big ulcer on her tongue, and she was always in pain.  She would frequently catch the ulcer in her teeth, immediately bringing tears to her eyes. She had a gum shield fitted by the hospital that she could wear at night. Her voice was not affected at first which meant that the ulcer did not initially impact her work, and she always went back to school.  She never took days off work as she was passionate about school and loved her children.

By late October 2019, Daisy had returned home again.  She was ill for quite a time afterwards and, in fact, never regained the ability to eat normally. She was in agony most of the time, needing regular medication. We believe that the October 2019 biopsy should not have been carried out as it set her so far back, and she barely regained enough strength for the big operation that November. We kept pushing for the operation to be brought forward, but the specialists said nothing would be gained from an earlier operation. Around this time, we saw a TV documentary on how prevalent the incidence of tongue cancer was in women, so we felt that Daisy should have her tongue checked again even though she was repeatedly told the condition was not serious.

Daisy was often in pain - she thought the biopsies were awful and didn’t seem to achieve anything. Throughout 2019, she had constant pain in her tongue, jaw and throat and eventually ulcers in her mouth. The back of her throat was black but was not seen until July 2019 at St Richard’s. The oncologist at the Royal Marsden who treated Daisy said later that he thought cancer had been there for at least a year and a half. At home, we discussed Daisy’s condition a lot between March and July 2019.  By then, she felt sore the whole time and could not swallow.  Adrian nicknamed her "bubbles" because these used to be created on the left side of her mouth, and she often dribbled.  Her speech was starting to be affected, and the condition became upsetting for Daisy as it was embarrassing and was likely to be noted at work. July 2019 was agony for Daisy.  She attended St Richard's Hospital, which she hated.  She had just broken up from school for the summer holidays around the 5th of July. She was not eating properly and was unable to eat solid food again from this point.

The biopsy taken in July 2019 was judged to reveal a ‘traumatic ulcerative granuloma’ known as TUGSE. The inexperienced doctor said, "it's not cancer".  I asked explicitly whether it was cancer, and the doctor said it was not.  It was left that Daisy would go back two weeks later. However, it seemed Daisy was now healing - still in pain but living off the good news that the diagnosis was not cancer. It was the news that she desperately wanted to hear. Her voice started to change throughout July 2019, and she was increasingly in considerable pain. The bubbles were getting worse, and generally, food was a problem even though she had a good appetite.  Food was something that she had always liked. Daisy stopped wanting to socialise due to the embarrassment of blowing bubbles or dribbling. Daisy's sleeping was affected, and she was increasingly getting up at night.  She also suffered from the pooling of saliva.

She went back to St Richard’s two weeks after her TUGSE diagnosis and saw her consultant.  This was a check-up appointment following the biopsy. He said, "I thought I would be sitting here with your mother with a diagnosis of tongue cancer". He laughed with her and said what a relief the news of the diagnosis was. However, Daisy was still in extreme discomfort, so I felt we needed to get someone else on board to find out what was causing all the pain. We organised a private appointment with a practitioner in London who specialised in oral disease. I wanted Daisy’s consultant to refer her to this lady, but he said St Richards was an outstanding hospital and knew what they were doing.

Daisy then saw a consultant from Portsmouth who happened to be at the clinic at St Richard's. She came back to school in floods of tears following this consultation - she had been informed that there would be another urgent biopsy and MRI scan. She was devastated due to the agony each biopsy had caused her previously. I telephoned Daisy’s secretary and asked for an urgent appointment.  I wanted to discuss our wish to look at Daisy’s case with another specialist. Her ordeal had been going on for seven years, and she was in agony.  She desperately needed another referral.

Her consultant said he had called for a second opinion and then admitted Daisy to hospital immediately because she felt so ill and the pain was too much to bear. We could not control Daisy’s pain, and she was given several types of painkillers in St Richard’s. She was now not able to eat and was feeding on liquids only. An MRI scan and biopsy were undertaken that week.  Friends who visited Daisy witnessed the incredible courage and stoicism she showed despite her apparent fear and the acute pain she was clearly in. Daisy was on the ladies' ward, which she hated and found very difficult considering her pain, feeling that nobody could understand her situation.

The consultant and his team came in to see Daisy the next day. They were indeed very friendly, but it seemed that there was ‘something up, and they subsequently moved Daisy to the Chichester Suite (a private ward).  On Friday, Daisy was visited by a second consultant who told her that he was looking for cancer. A third consultant subsequently visited Daisy on Saturday morning to say to her that a cancer diagnosis had sadly been confirmed. It was very upsetting for us all that none of us was given a chance to be with Daisy when she was given this distressing news. Daisy collapsed when she heard the news that the diagnosis was cancer. Daisy telephoned us to explain what had happened.  She said that she had known from the consultant’s expression that it was terrible news.  She had guessed from his demeanour.  He also told her that cancer had been discovered in the July 2019 biopsies and explained that Daisy would need major surgery.

Later on Saturday, we were all involved in a conversation with the second consultant, who was cross when he saw the biopsy results - the tumour measured 12mm, and he wanted to get to the bottom of Daisy’s case. He said that he had his duties in Portsmouth but would carry out her surgery. We were distraught at the prospect of the surgery and thought about a referral to the Royal Marsden.  I asked whether the consultant could help in this regard. The next day he told us that he had arranged the referral.  At the Royal Marsden, Daisy was seen by a senior consultant maxillofacial surgeon.  He had recently been away and did not have access to all the information he needed, but despite this, he stated bluntly to Daisy and us that he would be aiming to cure her. However, he explained that he would have to break her jaw to remove a percentage of her tongue, remove lymph nodes, take teeth out, and put in a tracheostomy.

The surgeon confirmed that the operation was needed, and Daisy asked what would happen if it did not take place. He told her that she would die if the operation were not carried out. Other team members also came in to talk to us all - they said that Daisy would probably need chemotherapy and radiotherapy to mop up any fragments of cancer. Daisy was understandably shocked and devastated by this news – the matter-of-fact delivery of her circumstances compacted this. We saw all the colour instantly drain from her cheeks, and she struggled to stop herself from fainting. When Daisy was calmer, she asked what was involved.  She was told that she would have a mask made to concentrate the radiation on a particular area. The treatment would be like sunburn and would affect her eating.

Daisy was admitted to the Royal Marsden before the operation because she was in so much pain. The consultant surgeon said her condition was severe- he was due to go to South Africa but would try and postpone other operations to book her in, saying that he only carries out one of these operations per week. Daisy wanted to proceed as soon as he was back and able to perform the surgery. In the Royal Marsden, Daisy was in agony, including a terrible earache. She was extremely uncomfortable and lost her appetite.  She tried so hard to get food down but lost much weight. Naturally, we were distraught that the surgeon would not want to operate because of her poor nutrition. A close friend visited her and was appalled at how much weight Daisy had lost and the pain she was in and amazed at Daisy’s resilience and fighting spirit.

The operation, we were told, would take sixteen hours and be scheduled for 12 November 2019.  It would involve breaking Daisy’s jaw and opening up both sides of her neck to remove the tumour and 85% of her tongue. The operation would also include reconstructing her tongue using tissue from her thigh. There were appointments with various specialists before the surgery; Daisy was seen by a dentist and a speech therapist who was pretty blunt about her speech prospects after the operation, chemotherapy and radiotherapy. It was heart-breaking to see Daisy, not only so scared of the operation and all that it entailed but also fully aware that she would never be able to speak normally again. Incredibly, Daisy could make herself understood within forty-eight hours of her surgery, but, tragically, as hard as she battled over the following months, further progress was minimal. This would be a ferocious blow; Daisy was a talker – as we all know, she would light up the room, always the life and soul of the party.

When the 12th of November arrived, Daisy was so scared and was shaking uncontrollably and struggling to breathe as she walked down to the operating theatre. Apart from the shadow of cancer hanging over her, Daisy knew that the operation ahead would mean her jaw being broken, her face and neck being opened up and the possible loss of her voice forever. She was in the hospital for two weeks, much of this in intensive care, struggling with the after-effects of over a hundred stitches in her face and neck. A RIG had already been fitted to manage her food, and later, they changed the food to stop her sickness and maintain her body weight.  In addition, Daisy was prescribed antiemetics drugs. She had to wear a backpack that housed the drive for the RIG from then on. It was traumatic to see the impact of such a massive operation on her face and neck. The surgical team had done an incredible job, but Daisy was understandably distressed. We stayed in a flat in Victoria throughout this time as we were not allowed to stay in the hospital.  Daisy begged us not to go home, and we visited her every day, not leaving until very late at night. She was in constant pain and utterly terrified.

In the end, we would live up in London for six weeks, and around 9th December 2019, Daisy started an egg harvesting process at the Hammersmith Hospital Wolfson Clinic. We drove up every time for two and a half hours, staying overnight in a hotel close by. The process was gruelling and was another painful and traumatic ordeal Daisy readily took on. Also, in December, there was a meeting with Daisy’s Marsden consultant, who explained that there would be a scan to make the mask necessary for the ‘mop-up’ radiotherapy.  He also said that Daisy would have chemotherapy.  The mask would prove uncomfortable and make it difficult for her to breathe. The process of fitting the mask was another traumatic ordeal. It initially involved a rubber sheet placed over Daisy’s face, which she found suffocating. The first time the sheet was applied, Daisy suffered a frightening panic attack, having to bang on the table next to her bed to let us know that she couldn’t breathe. It was no surprise that being as determined, brave and competitive as she was, Daisy trained herself to hold her breath for four minutes and, before long was able to cope with the claustrophobic ten minutes needed to endure the mask fitting.

The mop-up treatment was due to have started between Christmas and the new year, and there was eventually a planning scan on 2nd January 2020 - Daisy needed to be strong and in relatively good shape for it. She had the scan at 9:00 am, but we then had to wait for five hours while the results were reviewed. The longer we waited, the more we suspected that we would be given bad news. This was very worrying because we wanted to get on with treatment. The doctors were between operations, and when we eventually saw them, they indicated that there was a lot more red showing on the scan but that it could be an infection. As a result, Daisy was prescribed oral antibiotics but in tablet form. Daisy obviously could not take these, and we then had to wait for another three hours to get the tablets changed to a liquid medication. We subsequently had to go to St Richard's on three occasions because Daisy reacted severely to the drug treatments.

A second meeting with the consultants turned out to be a horrible conversation. They were not happy with what the scan revealed, and the plan was changed for Daisy only to be given chemotherapy.  The scan had determined that she could not be given radiotherapy and chemotherapy. This had a demoralising and frightening impact on Daisy.  We were also given the devastating news that Daisy could not be cured at this meeting. Daisy's oncologist was away, and a doctor delivered the news in what we felt was a clumsy and insensitive way. We were told that Daisy would never work again and that her life expectancy could be shortened. Jack went back in and was told that Daisy’s life expectancy could be as short as three months or even as little as three weeks. He bravely kept distressing news to himself. We endured a terrible journey home that evening. We had to face that Daisy was terminally ill, and our time left with her was running out. Over the following weeks, Daisy’s suffering was extreme.  We could not imagine anyone suffering more appallingly, but she never once complained- she just took it, day after day.

Daisy was told that she would talk to someone to start discussing the type of treatment that lay ahead. We had to wait for some time for this, and I had to push for it.  Daisy was sent to the Teenage Cancer Trust unit at this time. Daisy was living here with us on the farm by then and travelling to London for the treatments.  She had three doses of the chemotherapy, but it was suggested that the third dose was likely to have the slightest chance of success. Daisy was starting to collapse at home, and on one occasion, an ambulance had to be called.  Later at The Brompton Hospital, Daisy was investigated to find the cause of these episodes. We needed to get to the bottom of it, believing it related to pressure on the vagus nerve.

The second round of chemotherapy was administered, and Daisy was given her results just before her birthday on the 15th of February. Daisy was telephoned with the results and said, "Mum, you're not going to believe it, but it's shrinking!".  The team knew that it was her birthday. I feel that they always knew that they could not beat the cancer but understood that good news was so important to keep us all positive. We were also hearing that many people had recovered from similar cancers. We researched alternative therapies and took Daisy to Brighton for three concentrated Vitamin C treatments. Following the third dose of chemotherapy, Daisy ended up back in St Richard's Hospital - her blood pressure kept dropping, and she was rushed to the Accident and Emergency Department - we believed that she was going to die. As a result of this crisis, St Richard’s referred Daisy back to the Royal Marsden, where she was subsequently taken by ambulance.

When we got Daisy back home, we used an oxygen chamber we had to acquire privately as the hospital would not provide one. The chamber administers pure oxygen to enhance healing - the use of these chambers is widespread abroad. Daisy was only back home for a little while before returning to the Royal Marsden - she was in agony and was frequently vomiting.  She was always against taking some more extreme medications to combat this because they made her feel out of control, but fainting continued. We took a flat in Wimbledon to live close to Daisy, and Adrian spent every day with her throughout her time at the Marsden. I went backwards and forwards on the train almost daily from work - Daisy was adamant that I must keep working and not let the children down at school that I was supporting.

As COVID-19 was forcing a national lockdown, only one visitor at a time was allowed to see Daisy and a decision was made on 18th March 2020 to transfer Daisy from the Royal Marsden to St Wilfrid's Hospice near Chichester. The reasoning was that the move would enable the family to be nearby. Otherwise, she might have been moved to another London hospital where she would not be revived because she had extensive disease. Priority would be given to COVID patients. We were shocked that Daisy was given this news. Daisy moved to St Wilfred’s on Friday 20th March. This was deeply distressing - on the one hand, the move would enable Daisy to have more visitors, but on the other, it was impossible to avoid the reality that she was moving to a hospice and all that implied. With this news, it was agonising when Daisy asked me, “Has the Marsden given up on me, mummy?”.

Patrick was there at the hospice at night, and Adrian and I always stayed during the day.  Never was one or other of us not at Daisy’s bedside. She was in the hospice for three weeks, and we worked out a routine; Patrick has a camper van which he parked in the hospice car park.  While we were with Daisy during the day, Patrick would sleep in the van so he could spend the night in Daisy’s room. For most of this time, we would go home to try and sleep, but as we became aware that the end was drawing near, we stayed in the camper van overnight. Daisy was always fully aware of what was going on, right up to the end. She and Patrick had become engaged while she was in The Marsden, and she had an engagement party on 22nd March - Mothering Sunday. This was an especially bitter-sweet day as it was also my birthday. Daisy was so brave, battling cheerfully through that day despite her obvious pain and ongoing fear.

Daisy was going downhill rapidly and needed help to perform all her essential functions 90% of the time. Her suffering was beyond belief, and she was often struggling to breathe. Her life had become dominated by the fear and degradation that cancer had inflicted on her. We begged the Royal Marsden to give Daisy her immunotherapy treatment. It was eventually agreed upon, and she was taken by ambulance from the hospice to the Royal Marsden for the treatment. However, we were shocked when we were told that Daisy would not be resuscitated if she went into cardiac arrest - the medics would not be allowed to intervene. It was another body blow similar to how the doctor delivered the news of Daisy’s life expectancy at the Marsden a few weeks before.

At St Wilfred’s Hospice, almost everything was shut down for Coronavirus as the hospice was allocating beds to Covid patients.  Daisy was visibly terrified as we were asked to shut all the windows and close the curtains while deceased patients were taken out through the garden. By then, fear had been tormenting her for six months. We persuaded the doctor to give Daisy the second dose of immunotherapy. He was not sure that she was fit enough, but an ambulance was booked for the Marsden for the 1st and 2nd of April. Meanwhile, we were told of a suspected Covid case in the room next door to Daisy’s, which was particularly frightening after the news that she would not be resuscitated.

We made the journey to the Royal Marsden for the second dose of immunotherapy. There was some positivity as the swelling in her neck had gone down.  However, a hole was starting to appear in Daisy's neck at the surgery site.  Many hospice nurses were transferred to St Richard's because of the Covid pandemic. They were brought back to St Wilfred’s, but nobody could get Daisy's pain under control.  Even the consultant did not know what to do, and we missed the medical input from the Royal Marsden. Daisy hated it so much.  She was in constant pain and suffered from continuous sickness and diarrhoea.  By then, the scar in her throat was gaping open, and fluid was seeping out - we could see the back of her throat. She was bringing up yellow bile, and she needed our help, including in the bathroom. This was utterly degrading for Daisy and harrowing for us - we knew that our precious child was dying in front of our eyes, but she tried so bravely to protect us from her fear of death to the very end.

On Friday, 10th April, the hospice doctor told us that Daisy was gravely ill and that the family should come in to be around her. Adrian held Daisy the whole day - he was constantly nursing her hands and feet, but any movement caused her massive discomfort. She could not speak at all and was violently sick every few minutes by this time. She was in terrible pain. She had diarrhoea, and vomit was coming out of the tracheostomy hole in her throat. The stitching from the tracheostomy and along her neck opened up as the cancer was eating through it. It was also terribly infected. This was so distressing for all of us to see and so degrading for Daisy to go through. She was always awfully thirsty and later even managed an ice pop. Adrian thought that Daisy seemed to be a little more comfortable that evening. On this, her last day, Daisy was desperate to see her dog Kea, but she never got the chance tragically.

Daisy was given her last medication at 10:00, and that evening was the last time we spent with Daisy while she was still alive. When we left her for the night, we told her that we loved her, and she mouthed, “Love you”. I told her that we would be outside in the camper van if she needed us. A member of the hospice staff knocked on the door of the camper van at about 3:00 am to give us the news that we were fearing despite knowing that it was imminent. Daisy died on 11 April 2020.

Daisy was 25 years old when she died, but she was still our beautiful little girl. Her suffering and eventual death were avoidable, and no child or their family deserve to go through what we all went through during those terrible months. Daisy had so much to live for - she wanted to have children, and she was planning to buy a house. One of the many heart-breaking things we shared with Daisy was her looking at designs for her wedding dress, and the pain for all of us was impossible to bear. There was a long list of heart-breaking things we had to do that day, and COVID meant that we only had a short time to clear her room at the hospice. We also knew that it would be impossible to face going back there for a long time.

We would never want another family to have to endure this torture. From the second she was diagnosed, Daisy fought this wicked, degrading illness every minute of every day, and now we grieve for her every minute of every day. She was the most precious thing in the world to us, but mistakes and complacency meant that she never stood a chance of winning the battle against her cancer. We are suffering a life sentence, and the pain will go on forever.