Letitia's story

My name is Letitia Gwynne, nee Fitzpatrick, and I'm a journalist.  I've worked for the BBC in Northern Ireland and for UTV from 1997 to the end of 2008.

In May three years ago, I was living in Bangor with my husband, Johnny Gwynne, who was 58, and my teenage son and daughter, who also spent part of their time with their father.
 
I was off work at the time, recovering from an episode of depression, and I was getting better all the time.  The first sign that anything was wrong with Johnny was that he got diarrhoea and stomach cramps. 
 
This was very unusual for Johnny, who regularly suffered from constipation, so I immediately sent him to his GP.  He said it was stomach spasms, and gave him a medicine called Spasmodol.  The problem persisted, and I sent him back, and a different GP said more or less the same thing.
 
Days later, Johnny got jaundice, and I raced into the nearest bookshop and looked up jaundice.  The medical dictionary said it was a sign of something wrong with the liver, like gallstones, gall bladder problems, hepatitis, cirrhosis or it could be an indication of pancreatic cancer, which is one of the worst cancers to get, because by the time it's diagnosed, it's usually too late.
 
Johnny, being an eternal optimist, said it was probably gallstones.  I being a worrier said: "What if it's pancreatic cancer?" and he said: "We'll sell everything, visit all the horseshows in Ireland and go round the world!" 
 
We didn't waste any time.  That evening, we went to the emergency doctor, who immediately sent Johnny to the Ulster Hospital, where they began doing tests to find out what was causing the jaundice.
 
They did every kind of test, and Johnny was perfectly happy, until one afternoon, I got a call from him and he was in tears, and he said: "They've found a tumour."  And I said: "What kind of a tumour?"  And he said: "There only is one kind.  I've got cancer of the pancreas.  Can you and my sister come to the hospital right away?"
 
As we travelled from Bangor to the Ulster, his sister, Norma, kept shaking her head in disbelief, and saying: "This doesn't happen to our family."  But I thought to myself: "Why not us?"
 
We arrived, and Johnny was very emotional, and we all prayed, and cried, and then he showed us a diagram and explained where the pancreas is, and where his tumour was, and that he understood what was wrong.
 
As he talked, he calmed down, and talked about the possibility of surgery to try and remove the tumour.  We asked if chemotherapy would be any good, and he burst into tears again, and said: "I don't want to lose my hair." 
 
Also, the consultant had told him that chemotherapy could not cure pancreatic cancer, and would, at best, only prolong his life for a few months.
 
One of the positive aspects of Johnny's illness, for me, was that he was happy for people to know that he had pancreatic cancer, so I was able to text everyone, that night, and immediately, our wide network of family and friends began phoning, visiting and asking what they could do.
 
Many of us, including me, frantically looked up pancreatic cancer on the internet.  Now, I know that a little knowledge is a dangerous thing, and that the internet can be very unreliable, but it did result in lots of gifts of so-called superfoods, like certain types of fresh fruit and juice, which were great for Johnny's tastebuds, health and morale.
 
When Johnny's best friend, Jim, arrived to see him, Johnny had written out an A4 page of questions for the doctors, about exercise, eating habits et cetera, but at the top of it, he'd written: "I do not want to know my prognosis." 
 
However, I did want to know it, and when I spoke to the doctors, privately, they told me initially that he would have between two and twelve months.  Then later, they were able to pinpoint how long he had left, almost to the day.
 
Johnny was diagnosed with pancreatic cancer on a Thursday, and they let him out of hospital on a Friday, to spend the weekend with the family.  The minister from our church had already visited him and held a special family service that Friday evening.  He began by saying: "This is not a requiem." 
 
Soon, people from all religions, all over the place were praying for Johnny and for our family, and we got huge sustenance from that.  The chaplains at the hospital also came to see him, the Catholic one, because I was brought up Catholic, and the Church of Ireland one, because that was Johnny's faith.  Both brought him great comfort.
 
When Johnny went back into the Ulster, they put in a stent to relieve the jaundice, and talked about the possibility of surgery to try to remove the tumour.  They told him that there wasn't much chance of success, but Johnny begged them, and they finally agreed.
 
Before the operation,we went on a wonderful sailing holiday around the Greek islands with our friends, Jim and Alison, and Johnny's twin sons who were  31.  We swam in turquoise waters, and sunbathed, and slept a lot, and Johnny was in great form.  It was so relaxing and different from home, that I sometimes forgot he had cancer.
 
He was getting thinner, even though he was eating well, and he loved spending the time with his sons, who he adored..  I went snorkelling for the first time in my life, and saw lots of lovely fish, and felt triumphant over my own brush with depression, and my lack of confidence.
 
Four days after we returned, the surgeons at the Ulster opened Johnny up and couldn't remove the tumour, which was the size of a mandarin orange, because it was wrapped around a crucial blood vessel.
 
Again, he didn't want a prognosis, and I did.  When I spoke to the surgeon, Mr Moorehead, privately, he said Johnny has about four to eight months to live, though he may last longer. 
 
In the end Johnny got another seven months, and he only had about eight bad days during that time, so I consider him very lucky.  Johnny raved about the National Health Service, especially the nurses at the Ulster.
 
One of them told me after he died, that he never mentioned his illness, and would talk about anything else under the sun.  He was also a cheerful patient, and when one of them was wheeling him back up to the ward, after the surgery failed, she said: "I hate this part of my job.  How do you feel?"  And he smiled and said: "Well, I'd much rather be in agony in intensive care," and made her laugh.
 
Only two things upset him during the eight months he was ill.  When he was discharged from the hospital after the surgery didn't work, one of the nurses said: "We'll be handing you over to the hospice nurses now,"  and another time, the palliative care team left a message at our home saying: "The hospice nurse called but you weren't in."
 
Johnny couldn't deal with the word hospice.  To him, it meant certain death.  Whereas he had no problem with the words: palliative care.
 
Also, after the attempt at surgery failed, and we went home, we were supposed to hear from the hospital, but didn't, and weeks went by, and when we phoned, they'd somehow misplaced his files and they had to get him an appointment which they should have made.
 
Johnny decided that he was going to go down the alternative medicine route.  He told people: "I'm going to beat this," and he started ordering pills off the internet.  Soon he was taking 70 homeopathic tablets a day.  I was inwardly skeptical, but what could I say?  It was his life ending and it kept him hopeful.  
 
He never mentioned dying to me, although he secretly made a will, and picked out readings for his funeral service, and gave directions about where his ashes should be scattered after he was cremated.
 
During his last months, we went to Donegal for a few weekends, and then my brother took us to Paris for a weekend, seven weeks before Johnny died.  By now, he had lost three and a half stone, and looked gaunt, and became very tired.  He even said on the way home that this would be his last holiday, but within days, he was planning a trip to the Grand National in March.  Ever the optimist...
 
I remember him standing in the garden one fine day and crying and saying to me: "It's a beautiful world..."  and I knew he was thinking that he would have to leave it soon.
 
He got angry with a few people, and irrational, but we put it down to his illness, and tried to ignore it.  Another day, near the end, he started crying and said he didn't like being sick.
 
Johnny was very lucky, in that the only times he had to go into hospital were to have blood transfusions or get a new stent put in.
 
It was a strange time.  I knew he was waning, like a candle going down, and I feared that he might die in the middle of the night, alone and afraid, but God is good.
 
We had a lovely cosy week, where Johnny was in good form, but said that he was only going to see people between 12 and 2 every day.  On Friday the 26th of January 2 years ago, he went into Bangor hospital for more blood transfusions.  They said he should be out by Sunday.
 
I went up on Saturday afternoon, and Saturday evening and for the first time ever, he asked all his visitors except me to go home, because he was tired.  I stayed until he fell asleep.
 
At 5.15am on Sunday morning, the hospital phoned to say he'd passed a pint of blood in the bathroom.  I arrived and the emergency doctor said: "I think there's life in the old dog yet."  And transferred him to the Ulster by ambulance.
 
Johnny asked me to hold his hand and to stay with him, and I said: "I'm staying with you, day and night."  I think then, he finally knew that he was dying.  After X rays, the consultant said that all they could do was make him comfortable.
 
By then his son, sister, brother and other relatives and friends had arrived.  Out in the corridor, I cried sore, even though I'd been anticipating this moment for eight months.   They took us into a side ward, and as someone remarked, you know the end is near when you get the freshly brewed coffee and the home-made shortbread, but it was lovely.
 
We all hugged him, and he got morphine, and as his son and I held him, I asked his brother to say a prayer, and just as Robin finished, we realised that Johnny had slipped away peacefully in his sleep.  God rest his soul. 
 
The staff gave us plenty of time to say our goodbyes and then I went home to Bangor and my family and friends started to arrive with sandwiches, traybakes, cakes, teabags, coffee and lots of sympathy.
 
I was carried along on a tide of love and compassion until the funeral.  My children supported me, and we had a beautiful funeral service in the little church where we'd been married two and a half years earlier.
 
In conclusion, I have huge praise for the National Health Service staff who helped Johnny and I through his last months, day and hours.  They were kind, cheerful and caring, and gave him every chance.  If he hadn't had the attempt at surgery, he would always have felt cheated.  In the end, everything possible was done to help him, and I will be forever grateful.  Thank you for listening.