My husband John was first been diagnosed in June 2010 with an aggressive malignant brain tumour.  He was forty four years of age. We had been told that we should not expect him to live to see Christmas that year.  John had surgery and radiotherapy and chemotherapy and much to everyone’s amazement went into remission in February 2011.

By June 2011 John started suffering visual problems which at first we thought were due to the very high levels of radiotherapy he’d received following his initial diagnosis.  When one morning he woke up and discovered that he’d lost most of his sight overnight we knew that something was seriously wrong and, following an urgent brain scan, it was discovered that he had three new brain tumours, two of which were inoperable.

John started having the very aggressive second line treatment for his type of cancer and against all the odds he managed to carry on working.  By February 2012 his body could no longer tolerate the chemotherapy and it came to an end.  It was simply too dangerous to continue.  In a meeting prior to his brain scan his oncologist told us to expect only bad news and that John might like to plan his funeral and consider making a Will if he’d not done so already.  We were devastated.  However, when the scan results were revealed everyone was amazed to discover that once again John was in remission.  This period of remission was to last an incredible eighteen months.

On 17th September 2013 after he came home from work John almost immediately suffered a crippling headache coupled with dreadful sickness.  He was quickly admitted to hospital and following a brain scan John was diagnosed with a reoccurrence of his aggressive malignant brain tumour on 19th September. 

John had been discharged from Treliske Hospital on 20th September but by Sunday 22nd he was at home and very poorly indeed.  He was in a huge amount of pain and was feeling very sick.  He’d barely managed to hold down any food and water for nearly a week.  A doctor came out to see John and said that he needed to be readmitted to hospital.  John’s MacMillan nurse became involved in the process and as we were making preparations for John’s return to hospital she phoned me to let me know that we had a choice.  John could be readmitted to the hospital, or, there was a bed available at St Julia’s Hospice.  It was an easy decision for me – John was too poorly to choose for himself so I asked that John be admitted to the Hospice.

I had had experience of visiting the Hospice on a couple of occasions through my work as a Wills and Probate lawyer.  On each of those occasions I had found the Hospice to be a very peaceful and inspiring place.  I had had a number of clients and friends who had personal experience of the Hospice and knew that they couldn’t speak of it highly enough.  The hardest part was trying to explain this to John.  I didn’t want him to think that going into the Hospice was going to be a death sentence, in spite of the fact that he was very gravely ill.  In the end, John was so poorly that he simply didn’t care where he ended up.  That is where our amazing experience of the Hospice began.

To make sure that John could receive treatment as quickly as possible, I loaded him into our car and drove him straight to the Hospice.  He was in such a poor condition that a wheelchair was brought out for him when we arrived.  We were greeted very warmly and John was immediately taken to his room and settled into bed.

I left him briefly to move the car into the car park.  As I walked back into the Hospice and down to John’s room I felt an overwhelming sense of relief.  At last I felt at peace.  I was certain that this was the start of things improving for John.  There is such a tangible sense of tranquillity the moment you walk through the doors of the Hospice you can’t help feeling it and being moved by it.

The wonderful Elaine Potter dealt with John’s admission.  Asking all sorts of questions and explaining how things worked at the Hospice.  She was at pains to explain that the Hospice would seek to try and relieve John’s symptoms and to allow him to return home as quickly as possible, only this time in much better shape than he had left.  I could have hugged her.

Shortly afterwards the inspirational Dr Deb Stevens arrived.  She sat down with John and talked to him about his symptoms.  After he described each one she told him that she could help him with that problem.  She was good to her word.  Within a couple of hours of John arriving at the Hospice, he was transformed.  In place of the extremely nauseous and man in agony that I’d brought in, sat in the bed was my lovely John, smiling and chatting.  He even managed to ask for some delicious homemade soup for tea.  It was the first food he’d managed to hold onto for nearly a week. 

John was initially at the Hospice for a fortnight.  During that time his condition changed and at times deteriorated.  Each time this happened, he was immediately visited by a doctor who would carefully consider his symptoms and immediately treat them.

Then, ten days after John was admitted, I received a very early morning ‘phone call to tell me that he had suffered a seizure and was unresponsive.  The children and I were asked to go down to the Hospice straight away.  The nurses and Dr Stevens told us that John’s tumours were now threatening his life and that in Dr Stevens’ opinion John needed urgent brain surgery to remove them.  She left us to go and do battle by ‘phone with the neurosurgical team at Derriford on our behalf.  By 11.00am John was still unconscious and the children, John’s sister and I were called into a small room with Sister Sam Pleasants and Dr Bridget.  They carefully explained that as John was still unconscious and showed no signs of improving, that it seemed very likely that he would pass away that day.  They offered us only a slim chance of hope.  We were understandably heartbroken but what surprised me was how upset and affected Sam and Bridget were also.  Our heartbreak mattered to them.  We weren’t just a patients’ family, we were John’s wife, son, daughter and sister and they felt our pain.  We knew that they must have had to do this heart-breaking task on many occasions but it meant the world to us that they seemed upset because it meant that they cared.

We called all John’s and my family down to the Hospice to come and make their quiet goodbyes to John.  Then, against the odds, as everyone was quietly embracing him and kissing him and telling him how much they loved him, he woke up.  I can’t begin to tell you how that made us feel.  The tears we were trying to hold back just flowed as John quietly spoke words of love to everyone and then was ever so slightly cheeky to us all in turn.  So typically himself.  Of course, we couldn’t tell him that everyone had assembled because we’d believed that he was going to die that day.

The Hospice ran some blood tests and found that John’s tumour was starting to drop his sodium levels to dangerously and near fatal levels.  Dr Stevens now insisted on our behalf, that John must be operated on and as soon as possible.  For this to happen it was necessary for John to be moved first to Treliske and then on to Derriford Hospital in Plymouth. 

We left the Hospice extremely reluctantly.  We had all been taken such good care of, but especially John.

John then faced a six week battle with Treliske and then Derriford desperately trying everything that they possibly could to get him well enough for surgery.  It was explained to us over and over again that unless John’s sodium levels were increased within a safe range, there was no chance of surgery.  It was simply too dangerous to anaesthetise him.  Finally, after five weeks John had the surgery.  His neurosurgeon was delighted to report that the surgery was amazingly successful and that he’d managed to remove a huge amount of tumour.  Of course, we fully understood that without a miracle, surgery was just prolonging John’s life a little, but we were grateful that he was being given that chance.

Amazingly, the Hospice were willing to take John back and to help him with his recuperation following the surgery.  So once again we found ourselves wrapped up in the peace and security that is the Hospice.  We were welcomed back with open arms.  Everyone seemed to know exactly what had been going on while we were away.  Lots of the staff then confessed that they had been following my daily blogs on John’s condition via Facebook.  I was more moved than I could possibly say.  It was yet more evidence, if we needed any that we mattered as an entire family to them. 

We quickly settled back into the Hospice routine.  I would spend every day with John and later our children Becca and Matt would join us after they had finished their days, Becca on a teaching training placement at a junior school in Redruth and Matt at Sixth Form.

Each day as they would arrive they’d be greeted by the lovely volunteers and staff who would quiz them about their days and how things were going.  Everyone took an interest in their lives and how things were going for them.

Sadly, the expected improvement in John’s condition did not materialise and his health and symptoms started to slowly deteriorate again.

John’s lovely sunny personality had changed. He was suffering visual and hearing difficulties and couldn’t walk independently.

He was overdue an appointment with his oncologist to discuss further radiotherapy and chemotherapy but the Hospice kept delaying the appointment in order for John to be well enough for that initial appointment.  It was really important that he saw his oncologist in a fit condition, otherwise treatment would be refused.

Eventually he was deemed well enough to travel to Treslike and meet his wonderful oncologist.  Because John was such an unusual patient – he had outlived by a long way the usual life-expectancy of his disease and he had come through two previous lots of treatment and gone into remission for a period of 18 months which was unheard of – his oncologist was willing to offer him treatment.  A brain scan was booked to see what was going on inside his head post-surgery and to help map the treatment plan. 

On the 6th December, my birthday, John and I again set out for Treliske.  It was a very difficult appointment.  John was so agitated and distressed.  He shouted and made a fuss – this was so completely unlike him.  Eventually however, the wonderful staff in the Sunrise Centre managed to calm him and successfully scan his brain.

When we arrived back at the Hospice I was very upset.  I had never had such an unhappy birthday.  I’d never anticipated spending a birthday at the Hospice.  As John was settled down and went to sleep, I sat alone with my thoughts feeling utterly desolate.  After a while I noticed that there seemed to be a lot of shuffling and people moving about in the corridor outside the room.  Then, before I knew what was happening, the room was invaded by all the staff and volunteers.  They knew I was having a tough day and they’d brought me a birthday cake!  It was the first nice thing to happen on that day.  They sang happy birthday to me as John quietly snored in the bed.  I was completely reduced to tears.  I was overcome.  It was such an amazing act of kindness and compassion.

On Tuesday 10th December, in the early afternoon, Dr Stevens came in to see John.  She sat down quietly next to him and asked him how he was feeling.  He replied that he was starting to feel much better and I could only agree that things did finally appear to be improving. 

Dr Stevens then ever so gently explained to us that she had been working at the hospital that morning and had met with John’s oncologist.  During that meeting he had told her that the results of John’s scan were back and they were not good.  Truth be told, they were terrible.  The scan had revealed that a new, even more deadly and aggressive brain tumour had grown and completely filled the space where the previous brain tumour had been.  Given its sudden and dramatic growth the news was horrendous.  Dr Stevens, as gently as she could, explained that John had a matter of a very few short weeks to live.  When John asked if he would live to see Christmas, she made no promises but I knew from what she had said that it was not expected to happen.

Once again, the family rallied round and visited en masse.  John decided that given that as life was short, he’d like to eat some of his favourite takeaways – the staff at the Hospice actively encouraged this so for a week John dined on Chinese, Indian and fish and chips.

John also expressed the desire to visit our church for a regular Sunday service – we’d been going along to the lovely communion services each Thursday morning but it wasn’t the same as being at the heart of our church family.  When John asked Dr Bridget if he could go to church he was told that it simply wouldn’t be safe for him.  He could become very ill and die whilst he was there.  No one was willing to risk that.  Dr Bridget then said that if John couldn’t go to church then why didn’t church come to him, and that is exactly what happened.  The very next day (a Sunday) a large number of our church family turned up filling not only the chapel but the corridor outside and the visitors’ room.  Our children took their usual spot as lead guitarist and bass player in the worship band and sat right in the middle of it was John.  It was brilliant.

Every day as Christmas drew closer I feared that this Christmas would mark our loss of John.  Each day when I awoke I wondered if it would be John’s last day.  When Christmas Eve arrived, I simply couldn’t believe that John was still with us.  Strangely, in lots of ways, it seemed like he was started to make small improvements and for his condition to improve slightly.  I took nothing for granted and left him with a great deal of reluctance on Christmas Eve, fearing that he wouldn’t see the light of Christmas Day.  There was no phone call that night – we’d always dreaded the ringing of the ‘phone, fearing the bad news it might deliver.

On Christmas morning the children and I were up and dressed early.  If John was still alive we were determined to spend as much of this last Christmas Day as we possibly could with him.  I arrived at the Hospice at 8.00am, bringing the children’s Christmas presents with me.  I met Dr Stevens at the door.  I think neither one of us could believe that John had lived to see the day.  It meant the world to me but I knew that it mattered to her too.  It was writ large on her face.  When I went into John’s room I was met with his usual beaming smile.  If anything it was larger than normal.  He was so thrilled to have lived to see another Christmas.  I was then told about how much all the staff loved to be the first person to see John each morning when he woke up and as everyone was so pleased that he was alive for another Christmas morning, everyone went to wake him up and wish him a very happy Christmas.  He awoke to find eight members of staff around his bed greeting him that morning, including Pete the cleaner dressed as an elf, complete with sparkling lights around his waist.

Later that day as we were preparing ourselves for lunch – we’d been expecting to eat it off trays in John’s room, the staff came in and told us that they had laid a table in another room and that we would be able to enjoy our lunch sitting round a table together, just as we would have done at home.  It was such a treat.  This hadn’t happened for three months and we genuinely believed that it would not have happened again.  We felt so very blessed.

No one could quite believe it when John not only lived to see Christmas Day, Boxing Day, New Year’s Eve and then New Years Day.  As we moved into early 2014, everyone started to pray that John would live to see Matt’s 18th birthday.  It seemed like an impossibility.

John started to make good progress and seemed to started getting physically and mentally better.  It simply didn’t make sense.  People started to talk about him being well enough to have short trips out from the Hospice.  John even put himself on a diet.  He wanted to start walking more but was struggling after weeks of sitting down and enjoying far too much of the delicious Hospice food.  This improvement was a mystery.  So much so that Dr Stevens decided to ask for a new scan.  No one could have expected the results.  They showed that since the date of the previous scan, John’s tumour had stopped growing.  It simply didn’t add up.  No one could explain this apart from all those people who’d been praying for John.

Suddenly there was increased talk about John making trips out of the Hospice and even talk about making preparations for him to come home. 

There was also a realistic prospect that the treatment which had previously been offered and then withdrawn, would be offered to John once again.

John made his second trip home on the 29th January 2014 – to celebrate Matt’s 18th birthday.  Four years previously that had seemed like an impossible dream.  We knew with certainty that had it not been for all the amazing staff and doctors fighting so hard for John, and a touch of the miraculous, this simply wouldn’t have happened.  Everyone from our family and friends and the “Hospice family” as the staff at the Hospice had come to be known to us as, were so excited and thrilled.

It was decided that John would come home in early February.  Everyone worked really hard to ensure that John was going to be mobile enough to manage and that there would be enough equipment to make sure that he could live at home.

Suddenly our home was filled with all sorts of amazing equipment.

The suddenly, there was shocking news.  John suffered a seizure.  This had come out of the blue.  Once again the doctors were looking at adjusting John’s medications and once again he steadied.

So finally John made it home and things went really well for a fortnight until he suffered another run of seizures which wouldn’t stop.  Yet again he was readmitted to hospital but this time when he was ready to leave, there was no space available in the Hospice and we faced the truly awful dilemma of either bringing John home and trying to care for him there or finding a nursing home to move him too.  It was such a tough decision.  It was obvious by now that his condition was starting to deteriorate rapidly.  Another brain scan was taken before John was discharged to a wonderful nursing home where he was very well looked after.

A few days after the move I received a telephone call from John’s oncologist.  The news was exceptionally bad.  There was now no hope of recovery.  John’s tumour was, as we’d expected, growing very rapidly and John had just a few short days to live.  It was a bitter and devastating blow.

We watched him deteriorate and every day he became more and more unwell.  His symptoms increased and his needs become more complex.  Finally as the wonderful staff at the nursing home, John’s Macmillan Nurse, his GP and the Hospice staff liaised about how to care for him, a bed finally became available at the Hospice and he was once again back at the Hospice.  This was to be the final week of John’s life.  He was admitted on the Monday in very poor shape.  Once he was in his room all the staff came in one by one to greet him in the hoping of receiving one of his wonderful smiles that always reached right to the eyes.  Although by now his brain was very addled by the disease, he knew that he was back with “the wonderful nurses” to use John’s own words that day.

Over the course of that week he grew weaker and weaker and the John we knew and loved really started to slip away from us until finally on Sunday 16th March we had another of those heart-stopping early morning phone calls to say that John’s condition had seriously deteriorated. 

Once more we raced down to the Hospice.  We were met by staff who were very professional but at the same time clearly upset.  They worked extremely hard all that day to ensure that John remained as comfortable as he could possibly be and pain-free.  They went out of their way to ensure that we knew that he was aware that we were with him but that he was unaware of his own situation.  When the day staff had to leave that evening it was so very difficult knowing that in all likelihood neither we nor John would be there in the morning, and that was indeed the case.

Sadly my darling husband lost his long and hard fight with cancer at 8.15pm on 16th March 2014.

We knew without a doubt that his life had been extended and the quality of life that he had enjoyed had been improved greatly by his being cared for at the Hospice.

We were able to look back on the fifteen weeks in total that he had spent at the Hospice and remember a lot of it very fondly.  We were always encouraged to carry on, so far as possible, to be the family we had always been.  There was often laughter ringing out of John’s room – this was frequently encouraged by the nurses, the cleaners, the chefs, the volunteers and even the doctors.

John was at the centre of the care and the focus of all the staff at the Hospice but the children, our extended family and friends and myself were also made to feel that we were very important too.

We were always involved in decisions which were being made in respect of John’s care.  Matt was taken very seriously when his scientific mind had questions that his sister and I hadn’t even thought of.

All the staff strived and worked so hard to make sure that John was given every opportunity to be comfortable and to enjoy the last few months of his life.

Whenever John had been cared for in places other than the Hospice I always felt that I was having to do battle on his behalf.  To speak for him when he could not do so for himself and to argue for better care and treatment. At the end of each day when I would be forced to leave him in those settings, I was always anxious and worried about the way he would be looked after when I wasn’t there acting as his intermediary.  I never felt that with the Hospice.  Yes, I was always reluctant to leave him but I never feared for his care.  I always knew that he would be safe and very well cared for.  It was a huge comfort.

Also, because John was receiving such great care it meant that the children and I did not have to be John’s carers we could be his wife and his children and to try to carry on being the close and loving family we had always been.  This was an immense and invaluable gift.

When the end of his life came he was able to die with dignity and without pain surrounded only by those he loved the most.  Had he died on a normal hospital ward or at home we know for certain that our experience would have been very different and for that we will always be grateful.

I could tell you of many other amazing things that happened including John being offered an alcoholic tipple on a regular occasion.  

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