Thursday, 27 November 2008
Lots have people have asked for copies of the eulogies given at the church, so we've attached them below.
We'd like to thank everybody who came and made the day as special and unique as Dad was. We'd also like to thank everybody who couldn't make it, but have written on the blog and sent cards, we feel your love and support and are very grateful.
Finally, Dad had particularly requested that the Monty Python song Always Look on the Bright Side of Life, be played on the day and Luke put together a slide show with some prize pictures of Dad. Please watch and enjoy. And remember to never stop carpe-ing!
Lots of love and thanks from the O'Byrnes xxx
Paul O’Byrne – Eulogy 21 November 2008 by Paul Kennedy
Paul would be so proud of me I have done a mindmap for this talk! (Held up)
Paul was not normal. He wasn’t like anybody else I have ever met.
I first met Paul when he was in his early 20's and I wouldn't say he was an angry young man because Paul was never angry but he was a rebel and was intent on changing the world. I remember he described himself as anti-establishment.
He never stopped being a rebel. To the day he died Paul was not bound by convention or normality. He reveled in being a contrarian and was most comfortable when in the minority.
Paul never lacked self belief and refused to believe he couldn't do something -except keep his desk tidy - we all gave up on that one
He did give up on his plan to change the world. I remember him telling me that he had realised that he couldn't change the world. All he could do was to change the lives of the people he came in contact with. Ambition enough for any ordinary person but for Paul this was a concession, almost an apology. His intent to impact the lives of the people around him may explain his drive for personal development - that and his natural intellectual curiosity - for he set about developing his knowledge and skills like he was a man on a mission.
Among his skills I could list:
1. He was an accountant - but more especially an talented business consultant with an enviable breadth of skills
2. He was passionate about learning languages including sign language
3. He loved the arts including plays, books and paintings and was a good writer - abnormal for most accountants you understand
4. He was something of an expert on medical matters and not just over the last 18m - When I had something wrong with me I wouldn't go to my GP I would go to Paul!
5. He could juggle, uni-cycle and he was a Triathelete
6. As most of you will testify he was also an entertaining and skilled speaker
And Paul loved the limelight. Who could forget Paul’s 15 minutes of fame when he was on the news last year when the Royal Marsden burnt down. How he enjoyed being interviewed on prime time TV; how he sold pictures of the Hospital to waiting journalists in aid of cancer research; how he gave many interviews all printed in the daily newspapers the next day. What fun he had. And how typical of Paul to seize that opportunity. I don’t know how many people in this church today but I wonder how many would have seized that opportunity as Paul did.
So Paul was intent on changing the lives of the people he came in contact with - Paul loved to help. It seemed that he was always helping somebody with something. Many times did he help me or my friends and what a useful friend to have. Not only was he happy to help but had such a breadth of knowledge and experience. The ultimate phone a friend!
Not everybody was grateful for Paul’s help. There was the train fare dodger who when questioned by the ticket inspector pretended he was deaf to avoid his fare – how he who must have cursed his luck to be on the same carriage as Paul O'Byrne who was willing and ready to lend assistance with signing.
Others were more grateful for his help as he unleashed his talents on various organisations:
1. There was The Halliwick penguins - a charity he spent many hours supporting and one dear to his heart
2. He was chair of Governors at St Georges for many years.
3. He was a medal winning blood donor
Paul had very little self orientation, suffered no self pity and loved to give.
The thing I suspect many of you will remember him by was his humour. He had a very dry and fast wit which was still very evident even during the dark days of his illness. Indeed in his last few weeks his lucid moments were peppered with humour as he attempted to ease the suffering of his family.
And what a fantastic role his family has played in his life, his illness and his death. He was so very proud of his four children. Daniela Laura Katie Luke and Frank you should be so proud of the way in which you supported Paul when he needed you. He certainly was.
One of Paul's passions was public speaking and he took every opportunity to speak. He joked that a crowded train carriage was a real temptation for him given the captive audience and the relative silence. He loved to develop his skill and he loved to entertain but most of all it was his chance to change the lives more than one at a time. In recent years he has been given the opportunity – correction - he seized the opportunity to travel and to speak in some wonderful venues across the globe. He was in his element and has influenced so many people many of whom also now hold him in such high regard. I like to think that he has now gone to that great auditorium in the sky.
Paul made no secret of the fact that he loved the applause at the end his talks and always wanted a standing ovation. Now, it also occurs to me that when you go to a funeral you do not get a chance to publicly express how you feel about the deceased (unless you do the eulogy) so today I thought it would be good to give you all that opportunity. I know that we don't do this sort of thing at funerals but …
…I would like to invite you to join me in applauding Paul for his life. So, if you have been inspired helped or influenced positively by Paul I ask you now to join me in showing your appreciation in a way he would have enjoyed.
Paul was not normal. There was nothing ordinary about Paul except perhaps his diet which was notoriously plain. Paul was extraordinary. He was an extraordinary accountant, an extraordinary business partner, an extraordinary friend, an extraordinary father and an extraordinary Husband. Most people live their lives fearfully in a small box that gets smaller as they get older. Paul lived in an expansive, abundant world fearless of failure. He was courageous and an inspiration in the way that he lived, the way he dealt with his cancer and in the way in which he died. He died too young but as ....Abraham Lincoln once said, and echoing what we heard in the reading earlier " It is not the years in your life that count but your life in those years"
I finish as he would have wanted me to, with his invitation to us all: Carpe Diem
Tribute to Dad by Laura O'Byrne
As Paul has said, Dad relished every opportunity to speak in front of an audience and was always encouraging us kids to practise our public speaking. Unfortunately, I never did, and I really regret it right now, but I wanted to at least try and talk today, because although we’re devastated to have lost dad, my overwhelming emotion throughout has been that of gratitude. I am so honoured and privileged to have had Dad as my parent, my mentor and my friend.
When I started thinking about what to say, I came across a questionnaire that dad had pretty flippantly filled out for the Halliwick Penguins website about five years ago, and I thought it was quite revealing and appropriate today. It reads:
Name: “Paul O’Byrne”
Position in club: “Chief instructor”
Time at the club: “since April 77”
Favourite food: “fry up- but it must include chips”
Favourite colour: “bubblegum pink with sparkles” (who knew?!?)
Greatest achievement: “Escape from Alcatraz Triathlon”
Most memorable event: “Canyoning with my family in New Zealand”
What annoys you most: “Potential wasted”
What would you like to achieve in life? – to which he replies- “Immortality or eternal youth, not bothered which.”
And I think that in his own way, he’s achieved both these things, because we will always remember him as a very youthful 51 year old, full of energy, enthusiasm, passion and drive.
And I know that not only our family, but his friends and colleagues too, when faced with difficult situations will ask themselves “What would Paul have done?” and we’ll continue to draw on his values, advice and guidance, and I think that will be his immortality.
Dad knew that he had a lot to offer, but what set him apart was his willingness and determination to offer his expertise and advice to anybody and everybody he met.
One of the most important lessons he taught us as kids was to give. Not just to give to charity or even to give blood- though dad was a passionate advocate for both- but to give of ourselves, to give our time and our efforts for the benefit of others.
Dad always used to say “Accept the things you cannot change, and change the things you cannot accept”, and he very much lived by that. So, from the moment he was diagnosed, he accepted what lay ahead and was totally calm about it- much to the frustration of a counsellor who insisted that he must be in denial, which in turn infuriated Dad no end. But Dad said that though he couldn’t change what had happened, he could determine how he lived his life from that point on.
And that spirit of his never faltered- there were no dark moments of despair- he was genuinely happy and content with what he’d achieved in life and determined to make the most of what time he had left.
Dad loved to travel, but he was always happiest when he was at home. I remember not long ago, when Dad was a day patient at the drug development unit in Sutton. We’d left the house at seven in the morning and made the two hour journey down and with the inevitable wrong drug orders and delays at the pharmacy, Dad didn’t get his transfusion until very late and we wouldn’t be leaving the hospital before 10.30 that night.
Dad was pretty ill by then, and so the hospital offered him a bed for the night, and friends and family near by offered us beds, but Dad, although he was exhausted, was absolutely adamant that we should make the long journey home. It was the only place he wanted to be, and that’s exactly where he chose to stay for his last couple of months. And he loved it; holding court in his big chair in the living room with his numerous international visitors, and sharing each day with us, his incredibly lucky family.
They say that behind every great man, there is a great woman, and that couldn’t be more true than in Dad’s case. Dad was the head of our family, and our mum Daniela is undoubtedly the heart. Dad wanted it to be known today that – and I quote- he didn’t know what love was until he met our mum and started a family with her.
And it’s thanks to her that we are as close and as loving and as well equipped to put into actions the values that our dad taught us. Mum has been totally devoted to loving and caring for Dad. Their 25 year partnership was a rare and extraordinary one and Dad wouldn’t have been the man he was without her.
Dad always led by example and has shown us all that if you live with honesty, integrity and love, and endeavour to make each day count, then no matter how long or short a life, it’ll be a life extremely well lived.
Thank you Dad for all that you’ve done, and all you continue to do. We’ll love and miss you forever, but we promise to seize each day and try to make half the difference you did.
Monday, 17 November 2008
There is a multi storey carpark next to the church, entrance from Cecil Road.
After the burial there will be a party at The Royal Chase Hotel, 162 The Ridgeway, Enfield, EN2 8AR in the Queens suite, (which will be open from 1.45pm for those not wishing to attend the burial).
We very much hope you can attend the party as it was very much Paul’s idea.
The family want you to know that Paul wanted his funeral to be a celebration of life and are keen for as many people as possible to stay for the party. Please bring a smile, some funny stories about Paul and a willingness to share them.
No flowers just donations of money to MacMillan Cancer Support (who have merged with Cancer back up) http://www.macmillan.org.uk/ and of course donations of blood.
Click here to see a larger version of the map
If you are unable to see the map above, use the following links - church, cemetery, party.
Sunday, 16 November 2008
Dad was a model patient and it was an honour and privilege to care for him at home, just as he had wished. Mum has lead by example and her unconditional love and care for Dad is truly inspiring. We also received fantastic external support in the shape of Eileen Hogan and the Enfield palliative care team, who played their part in keeping Dad at the heart of the family and at home right until the end.
Dad's belief in quality, not quantity of life ensured we shared many precious and hilarious moments with him over the last few weeks. His spirit never faltered and he died with the same dignity and optimism with which he lived his life.
We read all your blog replies out to Dad and we have been so touched by all your stories and your clear respect for our amazing dad.
Details of the funeral will be posted shortly, but until then...
please remember that life IS beautiful, life is for living, so never stop carpe-ing!
Laura, Katie, Luke and Frankie
Monday, 3 November 2008
So on Saturday 27th of September we held a party celebrating another year and our silver wedding anniversary. (There'll surely be some pics up soon? )
I've rarely had a happier, more joyous evening. In fact it was one of those things that a good two days afterwards I was still beaming with contentment, pride and (I'm very sorry if I forgot to invite you, or you were too far away) but 90 of us bopped, ate and drank and just celebrated being alive. Our children did us proud with a highly entertaining presentation which - we are fairly sure - showed their affection as they laughed with us, not at us and our 25 years together. There were mercifully few other speeches but you could feel the love in the room - it was that tangible! The whole thing reinforced the philosophy we live by: a well-lived life albeit too short, is about strong relationships, mutual support, caring for each other and nothing to do with materialism or the silly targets we set ourselves to chase every day. It was deeply humbling and flattering to have the people we love and respect tell us how much they love and respect us. Life is beautiful!
Since when we have had more friends and family venturing forward to express their love and respect - I wish I had learned and practised that long before. I believe in it: that you change your intent of the way you react to events "stuff out there" in a blink of an eye, but it takes longer to change a habit. This thinking became clear to me on many occasions since we married, and I clearly remember "sampling the atmosphere" at our wedding, at the births f or children, and loving it, but again, a few more samples would have further cemented that wonderful taste. Aaahhhh.
This blogging session will be in three sections - different postings, really - Oh, you've just had one really:
The gently-break it to me medical info, coming up now, then finally. And then because I know a lot of you you like it and like detailed, specific, no-holds barred info, unvarnished info The hardcore medical info:
The gently-break it to me medical info, you probably need to hear no more:
Towards the end of September, I had a CT scan before the end of cycle 2 of the trial drug (6 weeks in) which showed such fast progression that the drug trial was clearly not helping, in fact it might be contributing to fast growth of my tumours, and so had to stop. The alternatives were three: further phase 1 trials, palliative care or more chemo. The consultant immediately started to discuss alternative chemo, which surprised me. I thought we'd be discussing if chemo would be an option rather than which type/cocktail. So we paused and considered if I was actually not well enough to go on another trial drug, that palliative care was always an option, so realistically what would the benefits be of chemo? The consultant said he had fair confidence that there'd be some short-medium term benefits, albeit at a cost of full on-chemo: hair loss, sickness, infections etc, etc. We agree to take a week to think about it and allow some time to see if my bloods/lethargy perked up. I had mixed feelings about the chemo, prior to the meeting with Professor Judson I had resigned myself to "short months / long weeks" of quality of life but was open to the chemo and the Professor has a very good understanding of my desire for quality over quantity of life. Note how this is all my decision - guided by my consultant's extraordinary knowledge and wisdom and his reading of my understanding of the science. In the event the decision kind of made itself as 1 week later my bloods hadn't improved and we all agreed my body couldn't handle another course of chemo without a disproportionate cost to my quality of life. I was outside the protocols of any presently open Phase 1 drug trial: I wasn't well enough to be a candidate to enter on to a new trial. The quality / quantity of life argument was over. The decision was no treatment aimed at curative intent on halting progression. It was to be as comfortable as possible in the remaining weeks or months of life
The hardcore medical info:
So what is palliative care? And for how long? It means symptom relief only, no attempt at cure or even halting progression of the disease. In relation to me this means pain control, learning to keep a baseline of painkillers in my system rather than letting pain take hold and then reacting. Many of you will have heard of Macmillan and their wonderful nurses, and palliative care is what they are so famous for! I am under the care of a Macmillan nurse based in Enfield who is quite frankly marvellous, she tells GPs and even folk at the Marsden to jump, and they say "how high!" Drugs are with us the same day as she prescribes them and she's always checking up on us. The only thing she couldn't do was give me a one-off, high dose, zap of radiotherapy to kill of some nerve endings inside my body. The Marsden could. I had two zaps, one in my left shoulder (a pain problem area) and one on my vertebrae which had been responsible for sending a band of nerve pain around my abdomen. They said it may help, it may not, but even a week later I became convinced it had worked and my pain control was much improved. I've talked about this concept of pain control, ideally there would be no pain because there are sufficient drugs available and long term side effects are not a concern at this stage of the game and we are as close as we can be. I've had to adjust to anticipating pain and taking the appropriate drugs where as before I would wait for pain to take hold before acting. So please don't worry, I'm not writhing around in pain as you may imagine and there are great drugs out there and I have finally adapted myself to pre-empt the pain and rather than the old "brave and stick it out".
Another symptom that needed controlling was fluid retention / build up. In the past few weeks my stomach had become acutely distended: very swollen and pulled tight at the skin. Also, a charming pair of swollen ankles. Last Wednesday, I came back from having my tummy tapped by way of a tube inserted into my stomach and getting that fluid out! I'm pleased to say that my stomach isn't so swollen as around 3 litres of fluid has been drained, plus a further 2-3 litres subsequentlly) and I feel a lot more comfortable for it. So, a bit of a mix bag of a message (and long overdue) but really when people say it's the quality not the quantity, it really is true.
I'm not sure my contentment will truly come across in this blog, but I really am very serene, very happy with life, being surrounded by those who love and care for me. I'm very much lucid and enjoying open conversations with my loved ones about their futures and reminiscing about all the fantastic times we've had together.
Life IS beautiful, and life is for living, so never stop carpe-ing!
Monday, 15 September 2008
Many more details below, but the quick summary is I'd been very well first two weeks of August and had a wonderful holiday with the whole family in Ireland. I started the trial drug on 12 August and felt fine for a few days, then my energy levels dropped from 90% to 10% and stayed there for two weeks with terrible pains in my trunk and shortness of breath, until I had to go into hospital with elevated temperatures, suspected infection and had a miserable six days in while they failed to find out what I had or what was causing it.
Holiday details? I had some perfect health and truly great holiday early August. We spent a week driving to various relatives in Ireland and were royally welcomed, entertained and fed. Much as we have travelled individually and as a family, we never made the short hop to Ireland and know or know of our cousins from their visits to London and tales from others. It was past time we made the trip and wanted to be altogether.
We started from Dublin airport in a too-small seven seater and sped up to County Monaghan, where we had a base at Catherine McDonnell's in Castleblayney. Actually she gave up her house for us - how's that for hospitality! Monday was blur of visiting my Mum's personal and family history sites and of course, aunt, cousins of various declensions all accompanied by copious amounts of tea.
No wonder Tuesday we sneaked off to visit the Giant's Causeway and were duly drenched. Wednesday, Derry airport picking up brother Edward and all going on to Donegal, my Dad's old stamping ground. Here the royal welcome was provided by Sheila and Gordon Thurston and they showed us lots of the old sites and relics - human and geographic. My Dad's old home "up the glen" was a sad, derelict spot, but the old school in Coguish where his mother was the schoolteacher until her untimely death in the flu epidemic after World War one was still standing proud. We then drove round seeing the wild west cost of Donegal and had a nice visits (with tea) with a couple more cousins. Thursday, back to Monaghan and visiting and re-visiting. Saturday to Dundalk to stay with the Hessions and the Sunday to Dublin where Luke and I got the 9pm ferry and drove through the night to get home at 5am Monday. Daniela, Laura, Katie and Frank stayed with the Quinns and flew back to Luton for 10am, where Luke was waiting to meet them.
Medical details: the day after getting home from Ireland, Tuesday 12 August, I was in hospital for the start of cycle 1 of my drug trial. I felt fine, though a bit tired from the six-go-mad-in-Ireland week, but relieved that my blood and other results were sufficient to allow me on the trial. There's the usual lots of waiting around, and cycle 1 has extra tests at strict intervals in case of a bad reaction, so I had to stay in overnight. Got home day 2, all well until day 4 when my energy levels went from 90% to 10%. Just like that. And stayed that way for over a week. Oh well, I thought, at least if there are side-effects, then there may be effects! Mind you, this drug was meant to to have next to no side effects, and I haven't been holding out much hope it would help anyway. After a week, my temperature suddenly spiked up over the threshold 38C and in I went for mainline antibiotics and squillions of blood tests and cultures to see what was wrong. I am under the Drug Development Unit at the Marsden Sutton campus, and it felt like their primary aim was to identify / exonerate the trial drug from the effects. This they did (exonerate) as no-one had had anything like the reactions I was showing, mild tiredness being the nearest.
So, what was causing these temperature jumps and extreme lethargy? None of the blood tests gave anything definitive but it has been clear for the past month or more that many of my liver functions were out of range. The consultant came to the tentative conclusion that my tumours may be "galloping away" (her words) and we should have some scans to see the size of the primary and liver mets and compare them with that of 5 weeks earlier. An anxious 24 hours ensued before the tests. It is famously difficult to get doctors to prognosticate and you can understand why; they often get it wrong, don't want to play God, don't know how the patient will react, etc, etc. I had come to adjust - and to prepare those closest to me - that the rapid growth shown in June and July, together with the experimental nature of my treatment, meant we were looking at months of survival, not more. Suddenly, weeks seemed more likely. In the event, a consultant radiologist conducted my scans and measured and compared everything there and then and told me that everything looked the same size. No galloping. Phew!
A couple of days later I was discharged with oral antibiotics and no clarity as to what caused my symptoms, but it was so good to be home, knowing my tumours hadn't increased it seemed like a win. Since then, I have continued to feel tired with inconvenient sleep patterns but energy levels getting up to the 30% mark. A frustrating level: enough to be aware of things to do, but insufficient to do much. However, I have my pain pretty much controlled and can save and plan if I need (want) to do something. I just had cycle 2 last week and so far, so good.
Carpe while you have the strength!
Thursday, 31 July 2008
"Oh bother", I thought.
Every clinical trial has strict protocols so it has a good chance of giving meaningful information and, of course, does no harm. Usually they specify that candidates have platelets of at least 100, mine were 88. In fact, this trial had set a limit of 75, but nonetheless the registrar who was to take my consent wanted to check with his boss and also wondered why my platelets were low. He said we'd try again on 30 July - the day designated for full pre-trial screening and we'd hope they were up!
One of my more anxious 5-day periods ensued. Why were my platelets low? - no pleasing hypotheses to be found. If I couldn't get on the trial then what? Chemo? But my platelets are low, so blasting every cell with chemo-poison doesn't sound like a great option. Anyway, 30 July came and my platelets were 110. Consent forms signed (including volunteering for a biopsy - whoopee), seven blood samples taken, ECG, usual vitals, a physical exam and good chat with another registrar and off to a local-ish private hospital for an echocardiogram. Essentially, it's an ultrasound of the heart to test it's OK and to provide a baseline because CP-751,871 has in some cases adversely affected the heart. Good news - and for those of you who can read ultrasounds there's a movie below - I'm not going to die of heart failure!
So, I have my dates - lots of them - for the 28 day cycle trial with a first infusion on 12 August, with lots of interim testing and some hope that my fast-growing cancer cells might find they have a fight on their hands. A good day and some more coming up with the whole family. Life is good!
Monday, 21 July 2008
I have been so well this year. I was especially delighted to be well the whole time I was in Australia - the last few days that I forgot to report on, finishing up with a few talks in Sydney, were equally great. I particularly enjoyed the first run of a new session I called "Difficult conversations" - I've had a few of them this past 14 months! I've been running more, swimming and looking to enter a triathlon or two (short ones) maybe in September. We've got a holiday planned for all six of us to be together, modified slightly because Luke isn't allowed in pressurised aircraft cabins yet. I've been doing more work - such that people at O'Byrne and Kennedy actually recognise me again now! Also, and I only realised this in retrospect, people were starting to treat me like an ordinary person again, by which I mean the sympathetic look and tone of voice was definitely abating. I mean no criticism of anyone here; but I now realise the three weeks in Oz was a watershed - an end to the days of being a chemo patient and a fresh start to life as normal.
I know by now that many of you will share in our delight in all this, and I am flattered that it cheers you up, too. Hold that happy feeling, because I have some news.
Not good news. But I have always said I'd tell you like it is, so if you only like good news, look away now.
I had a scan two weeks ago and have now had confirmed that the tumour in my adrenal gland has grown over the 12 weeks since the previous one. Doubled, in fact, so it is now 9.5cm x 10.0cm. One particular lesion in my liver has also more than doubled to 3.9cm x 1.5cm. This is especially surprising as I have felt perfectly well, look well and have been symptom-free. The big tumour has extended into my spleen and into the top of my left kidney and I'm starting to feel some pain in my back again.
I knew from my early researches last May that starting off ("presenting" as the medics have it) with a large tumour that has already metastised meant that five-year survival was unlikely. But I did hope for a bit longer without progression, because that does nothing to improve the odds. Anyway, I'm adjusted to it now and looking forward to the new treatment - mostly because it's not chemotherapy and has almost no side-effects! It's a so-called targeted therapy a monoclonal antibody, similar to Herceptin for breast cancer. As I understand it, these clever things are developed to attack just cells that look like the particular cancer cells. My sarcoma ones look like certain insulin growth receptor (IGF-1R) cells and they have a new enemy CP-751,871 - so new it doesn't even have a proper name yet. So I am in a Phase I trial which means it's an unproven remedy, I start next Wednesday 30 July, I think, and I will be monitored very closely every two weeks that I go for the outpatient treatment.
I remain well, quite fit and upbeat and I hope the trial drug stabilises or even reduces my cancer. (But if I owe you money or a favour I suggest you remind me about it soon.)
Keep smiling and grabbing each day!