Paul - cancer survivor in the making

A very fitting send off

2008-11-27T20:32:00.005Z

Last Friday we celebrated Dad's remarkable life with a service at Our Lady and St Georges Church and a brilliant reception at the Royal Chase Hotel. We were overwhelmed by the number of people who were able to attend. We knew Dad had touched many, but to see over 500 people give him a standing ovation in the church would have astounded even him we're sure!

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.

(Standing ovation)

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.

Carpe diem.

Funeral arrangements

2008-11-17T22:11:00.007Z

There will be a funeral mass on Friday 21 November at Our Lady of Mount Carmel & St George, 45 London Road, Enfield, EN2 6DS at 12:30pm followed by a burial at Lavender Hill Cemetery, Cedar Road, Enfield, EN2 0TH at 2pm – all are welcome.

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.

From Paul's kids

2008-11-16T22:11:00.004Z

Soon after his last blog, Dad's health deteriorated quickly and today he died peacefully in his sleep, surrounded by his family.

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

BIG update

2008-11-03T21:52:00.030Z

Social News

So on Saturday 27^th 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!

Paul

I've had better birthdays

2008-09-15T21:00:00.004Z

Ooops, seven weeks since I've blogged! I've been good, then poorly, now getting better. So much to say, but you may not want to read it all, so there's a paragraph synopsis next, then lots more detail about Ireland holiday and medical matters and finally a video promoting blood donations! Today is my 51st birthday and apart from being happy to be here, I am thankful for all the kind wishes, many by text from overseas.

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!

Paul

Warning before you look at the video: I did this piece to camera as I was overwhelmed by gratitude for blood donors. I thought at the time it could encourage some new donors and or backsliders. However, I have been made aware that this does show me near my low point and it could be distressing. So be warned: for those of you who think "Good old Paul, he's been ill before, his attitude will see him bounce back..." you may find it a bit of a shock to see me quite unwell. It's partially my fault; I tend to blog and and talk when I'm feeling well and do want to send out positive vibes. Also, I think it is hard for others to envisage what I am going through, so I tend not to dwell on when it's tough. With those caveats, if it does encourage one more blood donation, I'm happy to put it out there.

Phew!

2008-07-31T00:40:00.008Z

As I said last time, I was due to be enrolled on the monoclonal anti-body trial on 25 July, but when I went to "be consented" they said my platelets were too low to be entered into the trial.

"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!

Paul

Back to me...

2008-07-21T20:49:00.010Z

After Katie and Luke hogging the recent headlines (Daniela, Laura and Frank are doing fine, too) it's time to come back to me!

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!

Paul

More family news..

2008-07-06T12:34:00.011Z

Katie does the British 10k London run; gets a first

Oh sorry. Those are two separate headlines. First, Katie heard this week that she has indeed done sufficient to pass her degree - with first class honours. Both her parents are emphasising their own contribution to her remarkable intellect and workrate, charm and interpersonal skills. Katie has always and played hard but, as has been evident since her first major public exams at 16, worked hard too. Well done Katie - a great achievement! (If any readers hear of any Physiotherapy jobs going please let us know!)

As for the 10k run today around London, er, everyone's a winner but someone else might have come first? A few months ago, Katie and her friend from the Uni football team Bren (actually Rachel Brennan) agreed to do something energetic for the end of term and decided on using the British 10k in London. I can report that they did it today and looked pretty good doing it, too. I was delighted that they decided to not simply challenge themsleves in this way but also to raise money for the Royal Marsden. They did this in gratitude for the magnificent treatment I have received and have already managed to raise over £1,000 (believe it - this figure has been validated by the Zimbabwean Electoral Commission). And that's before you go over there and donate! It's easy to so at their justgiving page which, inexplicably, is called "beerbellies hit london" and hit the sponsor us now button. If you're a UK taxpayer, you can augment your donation by 28% painlessly by admitting to being a UK taxpayer. If you're a foreigner - it accepts your money equally gratefully, you just need a card! Great effort, girls.

Luke and his lungs...

.. are now fixed! After the trauma of the right lung operation, and the twice as long as expected stay in hospital, Luke got home to recover just three days before his left lung started to collapse. A couple of pointless days in our local hospital preceded a transfer back to the Heart Hospital in Central London (another ride in an ambulance - Yea!) for more or less the same op on his left lung. Much pain, anxiety and, eventually, relief ensued. I'll spare you the details in case you're eating. He is recovering fast now, and going to be building up his fitness to be ready for his Paramedic course at Uni in Liverpool in September.

Hope you don't mind, but we've decided to cut down on medical traumas for a while; we feel we've been overdoing it.

Keep well yourselves,

Paul

Tall skinny is good for lattes...

2008-06-12T08:12:00.009Z

.. but tall skinny Lukey is not so good.

About 8 weeks ago, after several weeks of having sharp pains in his chest Luke, our 19 year-old, succumbed to a pneumothorax - his right lung partially collapsed. Air escapes from the lung into the chest cavity and the pressure outside the lung forces the lung to collapse. Painful as well as life-threatening. Apparently, this is fairly common is tall skinny young men and though a medical emergency, easily fixed. A simple chest X-ray showed the air in the chest cavity and then a quick emergency room procedure let the air out.

Experienced readers of this blog are expert readers of CT scans and can see the two bullae at the top of the lung (red circles added).

The follow up was a CT scan and an appointment with a cardiothoracic surgeon who straight out announced that Luke had bilateral bullous lung disease and would be operated on the next week! Bilateral meaning that his left lung had signs of the same thing so it, too, could collapse. So on Monday he had an operation to remove the blisters at the top of his right lung and have the lung "stuck" to the top of his chest lining to prevent any future collapse. Once this is done, he should be right, as the stuck lungs won't be able to collapse again.

It hasn't been as straightforward as they said and Luke has suffered post-operation with pain, sickness and draining a lot of fluid. We're pleased to say he seems to have turned the corner on Wednesday and is no longer a uniform insipid grey colour, but has a little pink in his lips and cheeks. Hopefully, he'll be weaned off the morphine / tramadol / codeine / paracetomol diet in the next day and be able to come home.

As if that weren't enough, the surgeon said his left lung definitely could use fixing too, so he'll have to go through it all again after a six week recovery.

Luke was due to do his fitness test for the paramedic course at university he is due to start in September, but obviously has had to defer that test. We all trust that the Uni will wait for him to be well and he will get to the course in September. The surgeon says there no reason he can't pursue the profession he has set his heart on but Luke has to take it easy this summer, scuppering plans to earn some money - and travel by plane.

Through it all, Luke remains charming, polite, apologetic (though there's no reason to be) and grateful. Amply demonstrating how easy it is to cherish him and be proud of him.

I love my life!

2008-05-23T22:32:00.024Z

Wow, two and a bit weeks in to my Aussie trip and life is great! My health is perfect (apart from the obvious, of which there is no evidence at the moment): I have no pain or any symptoms other than being follicly-challenged, I am enjoying wonderful company wherever I go, I have lots of energy and when presenting and workshopping I feel as sharp as ever.

Of course, I assumed I'd have loads of time to blog and give daily updates of where I was and what I was doing. But you know me better than that by now. So mini-highlights (here's some photos ) are:

Hong Kong stopover, bought a made-to-measure suit (my first), and then succumbed to the upsell for a sports jacket and two shirts. But to be fair to myself, the tailor did give me a very special price.

Brisbane conference for the splendid Principa Alliance, a great buzz and a more friendly and decent bunch of people you could not meet.

ALPMA QLD had me back from a talk on knowledge management - a fundamental but misunderstood element of intellectual capital. Knowledge transfer and sharing took place!

The other main speaker at Principa was Dr Paddi Lund, the mad (self-confessed) dentist. On the way to a relaxing few days at Lennox Heads, we visited Paddi's practice and were royally entertained - it was as if we were clients.

My first facial at the exclusive Gaia resort. It is co-owned by Olivia Newton-John but she didn't do my facial; clearly understanding the idea that owning a business doesn't mean you have to do the work the business does. This whole indulge-yourself-facial-thing was NOT my idea, but I have always said take opportunities in life as they present (and believe it even more now). I hereby publicly thank Kerry Payne for this, er, opportunity. I always take loads of pictures and videos and have loads to show you, but me having a facial will not be featuring. The interview I did with Ric will be released in time for next year's Oscars.

Melbourne and enjoying again the superlative hospitality of Karen and John Chisholm and family. Apart from being the best-connected consultant to professional firms, John was kind and generous enough to organise a dinner for friends I have made in Melbourne. The most special guest there - they will excuse me for saying this - was Nathan Dorembus, who was one of the standout nurses in my first few months at the Marsden, now returned to his native Melbourne and working at the Marsden-esque Peter Mac hospital. I've made no secret of my admiration and gratitude to these devoted skilled, yet underpaid, lifesavers, so I was happy to fête Nathan for his personal contribution to my well-being and as representative of all those medics who have got me back to where I want to be.

Melbourne events have been fun. Both in-firm and for ALPMA, who were good enough to pay $1,000 to Cancer Council of Australia by way of a thank you.

Adelaide - my first visit and met up with Kain C+C, a firm that are not a client of mine but continue to impress me from afar. Also some in-firm work and presented to ALPMA (SA), as well as a major accounting firm conference.

Melbourne again and after watching the footy (Go Monders!) and met up with some former swimmers from Halliwick Penguins that I used to teach swimming, now re-settled in Victoria. Wonderful to roll back the miles and the years!

Now for a couple of days R & R at Point Lonsdale and then off to Sydney for the last four days before flying home. I'll tell you how it went, but if it's anything like my past two weeks, expect me to say I loved every minute of it!

The single improvement I would wish for would be if Daniela were with me. (Oh, and all my children of course. Sorry!) Her school have been very understanding and accommodating in the past year but it's exam time in the UK, and we all know how important that is.

My love to all. Take (make?) the opportunities life presents to you.

As they probably say here: Carpe G'Day!

Just another day?

2008-04-24T19:51:00.008Z

24 April is a significant date for me. Well it is as of 2007, as that was the day the pain in the side (which I had confidently self-diagnosed as kidney stones) was diagnosed by someone who knows about medicine as advanced cancer with metastases in the liver. On this first anniversary, I had planned to write about what had learned in this past year and maybe to reflect on life and death as I now saw it. But yesterday, 23 April 2008 became another significant date. Yesterday my dear mother died.

Dympna, or "Dimps" was 86 (last week actually) and had a fruitful and giving life. She had five loving children and 11 grandchildren. She always had a welcome for her extensive family and equally extensive circle of friends. The door was always open and the kettle always on; I bet at this moment she's going round Heaven with a huge plate of sandwiches. At the time of my father's death two years ago (after 61 years of marriage) I noted that for them the traditional Irish greeting of Céad Mile Fáilte - a hundred thousand welcomes - seemed not so much a quaint Irish exaggeration as a target!

I know everyone thinks their mother the best, as they should, but I was humbled the past couple of weeks when she was unwell and we spent a lot of time together. She was always, always, so grateful for any little thing we did and trying to shoo us away to go back to our own home and not be bothering with her. She honestly didn't get it that after a lifetime of serving others, that she was entitled to have things done for her and that it was an honour for us to make some small attempt at payback.

She suffered with her health for many years in many ways, and after a real scare two weeks ago, seemed well on the road to recovery and we had a fun weekend together. But on Monday she had a massive cranial bleed and never regained consciousness. She just slipped away peacefully last night. We had a chance to say our goodbyes and were grateful for her peaceful passing.

Her funeral is Friday 2 May at 10am at her church for the past 40 years Our Lady of Lourdes, London N11, preceded by a reception into the church the previous evening at 5pm. Dimps will be mourned and missed by a great number of family and friends, but her funeral will surely be a celebration. Not just because of her unswerving conviction in her Catholic faith and the joy of reuniting with Dad and her daughter Clare, who died tragically early of cancer aged 51. Certainly Mum had her adversities tragedies and hardships, but we all have the consolation of a life of service and devotion, great companionship, laughter and - I hope she sees it as we all do - that she left this world better than she found it.

Rest in peace Mum, and thank you so much.

Oh, I didn't want to hear that

2008-03-07T17:33:00.012Z

Another month, gone, and that means good news - so I have led you to believe. I've been remarkably well and doing more jogging and working and feeling full of energy. My re-scheduled chemo happened on Feb 11, even though my neutrophils were still at 0.8 in the belief they were on the way back (next day 4.1!!!). It was my first IV chemo since the end of November and unusually caused me to be nauseous and sick but that's normal for most people.

Three weeks had passed and for the scheduled fifth cycle on 5 March I was keen to see what my neutrophils would be and would this for much-interrupted regime actually have a three week cycle? They were 1.9 and treatment went ahead; an hour for the anti-nausea drugs and hour or so of the three chemo drugs and then 14 hours of basic fluid with Mesna added to flush the chemo from my kidney(s). A bit of nausea at the end but OK. A nice bunch of fellow patients, much more lively than usual and it was great to meet up with the nurses and doctoring team again. Five down and just one (or two, to be decided) to go.

In February I had belatedly discovered a e-mail list exclusively for people with Sarcomas and decided to join. It wasn't at all that I felt the need for support. I have always felt strong, with only a very few short, low interludes. And I have tremendous support from my whole family and of course, friends and acquaintances (YOU!). But maybe I could offer help, as I've been told my story of good heath has been encouraging for others. Actually it's been great. Instant bonding with people who have actually been through what you're going through is remarkably comforting.

Less comforting is they introduced me to the word "scanxiety": that feeling you have between getting a scan and hearing the results, invariably a few days, sometimes a week or more. Thing is, I didn't use to get scanxiety. Of course, I would wonder what they scan would show, but I was never apprehensive or worried about it. Helped by having great progress through the latter part of 2007 but even when "stable" I was unperturbed. Having a word allows expression, so I found myself scanxious (that can't be a word) on Thursday morning before the Docs all come round.

All that prattle is a long build up to the fact that the scan of 25 Feb shows, in the stark words of the radiographer, "disease progression". But only in one area. The kidney and liver areas are stable: no reduction but no increase. Thing is, the area of progression is an area I didn't know there was cancer, my left adrenal gland. A quick consult with Doctor Wikipedia and I realise I shouldn't be surprised. The adrenal is ad-renal (on the kidney) and located by T12, the 12th thoracic vertebrae, the general location where all the action is. The radiographer actually said: "the left adrenal metastatic lesion is significantly more bulky and now measures 7.2 x 6.2cm (previously 6.4 x 4.6cm)" The previously refers to the last CT scan on 14 December 2007.

Having had all those great scan results August to October where there was obvious visible shrinking, to November and December scans officially "stable" was one thing. Progression - while on chemo - was another. Initially (yes, I know: oddly) I felt mostly annoyed that my mental vision of getting better and better was dashed. I had entered some runs and been spending a little time at the office which I enjoyed. I felt I was getting my life back and now this. But within a couple of hours I recognised that "this" was proof of the winding road of the disease, and I started to re-adjust. I'm not pretending that everything looks the same and so positive to me: I'm in no doubt this is a mind game as much as anything. Look at how long before I posted this blog, it's been written pretty much in this form for three weeks.

But the growing certainty of a return to full effectiveness in 2008 has ebbed and that makes planning and committing (and expecting others to commit to me) problematic. However, the medics have re-iterated their approval of my three week trip to Australia in May and I'm looking forward to meeting up with friends (and lawyers!) I've made over there. The Docs were obviously surprised themselves at the progression with the infrerence that, after squeezing in and extra cycle of this VAC chemo regime before Australia, there may be a return to the hard stuff of last summer. Makes sense: harsh though it was, while I was on it my tumour and mets reduced. While on the VAC regime, which they called a maintenance regime, my tumour has been static or grown.

I'm in good hands and in good spirits. My fond love to all who care for me daily and whenever.

Carpe your diems!

Paul

Where did January go?

2008-02-06T15:25:00.000Z

Hello, where've you been? Oh, it's me that's been absent, sorry.

You can take it that no news is good news. I have been SO well: totally symptom-free, infection-free, even avoiding all the bugs that everyone else has got. All the more surprising because I have been out and about, mixing with people and just discovered the other day that my white blood count is low (Neutrophils 0.8 for those who like that sort of detail).

Following the fire, the hospital got back up to speed remarkably quickly, but was hampered not so much by burnt-out bits as smoke and water damage. Some wards remain closed because the closure of corridors for remedial work have cut off fire exits - rather important, we all agree. Smoke damage did for the hospital's high-spec water filtration system that is used to make up the IV chemo. I never thought about it before, but it probably is sensible that they don't just go to the tap to mix the infusion bags. So, the orders were to be inventive where they could, and in my case cycle 3 was already much delayed due to my infections before Christmas and then the fire.

Etoposide is chemo drug that I had in my previous regime that can be administered orally. It was explained that rather than delay more or send me to another hospital I could take a tablet twice a day for 14 days and that would count as a cycle. Not so efficacious as the IV and with extra side-effects as it was oral. I had NO side-effects, in fact half-way through I accused the oncologist of giving me a placebo. She held up that day's blood tests and said "So why do you think your platelets, haemogolbin and whiteys have all gone walkabout"? (She's Australian and therefore direct, but quite good ;-)

Since Christmas I've been turning the every-other-day walks into walk-jogs, moving from walk 5 mins jog 2, to today's walk 2 jog 2. I'm feeling full of energy and working (from home, not real work) mixed in with reading, visiting Mum (now out of hospital and recovering) refreshing my French and watching my hair grow. I've been starting to believe I'm going to enjoy some good health for some time, only slightly mindful that it's the end of November that I last had IV chemo. So, it was with some surprise that when I went in to the Marsden on Monday for an overnight IV session that they said my white count was too low to be putting more poison into me and would I come back next week?

Initially, I was more frustrated with how this put out some of my plans than considering what it meant. As I've been feeling increasingly "normal", I've been making more appointments and commitments and was annoyed to be reminded I'm not quite the superman I sometimes like to believe. It's been two weeks since I finished the oral chemo and my bone marrow is slow - getting slower? - at creating those essential white blood cells. I'm not at all downhearted about it, just a bit put out and carefully considering how this affects what I should commit to over the coming months.

I could commit to blogging more frequently? Nah! though I continue to appreciate the comments, even if I don't know who they're from (Fab Al???). For those of you - many of you - who have said you wanted to post a comment but the technology defeated you, it is fine to bypass setting up a profile and press the "Anonymous" button, but you can still sign, if you wish, in the main text box.

And I have tried to get back to friends and acquaintances who discovered I had cancer only when tuning into the News on 2 Jan. Sorry!

A bientot!

Ho hum, another new year...

2008-01-02T18:25:00.000Z

...begins with being burned out of hospital and interviewed live on BBC Radio5 live and News 24, for the web / later broadcast by BBC (different lot)and the Press Association, and by The Guardian. I refused the gutter press (with glee when Murdoch-owned).

A brief report, interview and some of my pictures are on the bbc

I am well and available for other speaking opportunities!

Paul

Chemo delayed, Christmas isn't

2007-12-20T15:37:00.000Z

I came into the Marsden for cycle 3 of regime 2, but instead am back on antibiotics. Latest word is I'll be home for Christmas, but will have no time for Christmas shopping. Result!

Trouble is that when I came in for one of my infamous week 2 infections on 7th December, the first cannula I had fitted was painful and after just one shot of IV became blocked and unusable. So I was fitted with another, and after 4 days of general IV antibiotics, and after my temperature came down and my white blood cells bounced back (they had all but disappeared) I was sent home with 4 days worth of oral antibiotics. As soon as I finished them, I developed a painful, angry-looking swelling at the site of that first cannula. I was persuaded (thanks, Dear) to go to the hospital and get a doctor to have a look and came away with some more, specific antibiotics. That was last Friday (and I sneaked in a CT scan due the following week), by Monday it was no better, in fact a bit worse. So I went up again and got some ointment, too (and sneaked in the routine blood tests ahead of the chemo due on Wednesday). The doctor was interested to see if my white cells were high (as if!) which would indicate an underlying general infection not just localised to my arm. They were bang on my base level, so back home.

Wednesday in for chemo but the admitting nurse didn't like the look of my arm and declined to cannulate me, suspecting I wouldn't be fit for chemo. Much deliberation and inspection followed and I am now in for maybe 3 or 4 days (was expecting chemo to last 24 hours) on the strongest IV antibiotic they've got. No question of feeding me poison while that's going on, so chemo will be - at the time of writing - between Christmas and New Year.

A little setback but not the end of the world, there's always someone worse off. In the bed opposite me today, a 19 year old was told bad news about his multiple stomach tumours and in the bed next to me an older man was told all the medicines available have been tried and his tumour continues to grow. They'll try and "make him comfortable". I've got a sore arm, and a disruption to my plans. Oh, and I've been told the CT scan shows more movement in the right direction - I'll try and upload it as soon as I've seen it.

Count your bleesings and seize the day!

Paul

Oh bugger...

2007-12-06T07:53:00.000Z

I was doing so well, and feeling great and working effectively from home. The new lighter chemo regime2 is a lot less to take, and though scycle 2 of it had to be oput back a week as my white blood cells barely passed muster, I've felt near normal. However, this is week 2 of cycle 2 and now the sore throat, general unwellness and soaring temperature are back. So it's off to the Marsden, probably for the neutropenic adventure so familiar of week 2.

I had meant to post on the blog today anyway - honest. I can't believe that it's been five weeks - although I have had increasing number of emails saying how am I, a sure sign I've been neglecting my friends. Sorry to write when it seems poor news, but this isn't too bad, just another episode to remind me I'm not a machine.

As compensation, I launch here a photo competition. The first to identify what the picture is, gets - guaranteed delivery in time for Christmas - a warm, self-satisfied feeling. Offer open to subjects of the UK, citizens of the republic of Ireland, the republic of Australia (only a matter of time), New Zealand, USA and Canada, and of course Argentina - and all other residents of Earth. A clue: it's not a field of pygmy buckwheat waiting for harvest.

I've been carpe-ing well, hope you have, too.

Paul

Put Me Back On My Bike..

2007-10-30T22:17:00.000Z

.. were the reputed last words of Tom Simpson, British racing cyclist who died 40 years ago on Mount Ventoux. He was quite out of his mind of course, but you know how obsessive people can be about doing what they love.

I've just come back from Las Vegas where I spent a deliriously happy (for me, at least) few hours on stage and many hours meeting / talking to /at the fine accountants of the Principa Alliance. Utter bliss. Las Vegas the city did nothing for me at all, but the opportunity to get back presenting for the first time since March was irresistible. It went really well, so much so that I've been invited to go and repeat the performance for the Australian Principa conference in Brisbane next May. From Las Vegas to Bris Vegas, something to shoot at. I'm grateful to Ric and Kerry Payne who took a gamble on me to be there and let me "get back on my bike".

I was there with Paul Kennedy who did most of the presenting and kept checking on me that I wasn't overdoing things. Daniela was very supportive and understanding, although obviously apprehensive. As part of our ongoing celebration of our 20th year as O'Byrne and Kennedy, we took a 3 hour helicopter flight to the Grand Canyon; that WAS impressive! Also while in Las Vegas, we met up with our fellow fellows from the VeraSage Institute for a two day meeting - the first time we had all met up, even though we've been collaborating by email for ages. Very neat.

Medically, I've been outstandingly well for 3 weeks. Helped by the fact I've had a lay off from treatment, and that I received two units of blood before I went. I have said before how impressed I am with the medical team, nursing and doctoring. What I especially like is that they work to help me actually DO things, I'm not just a bundle of symptoms to lay there and take what treatment they prescribe. They've all been very conscious of my desire to talk at the Vegas conference and worked to get me there. They all share the view that they're treating me so I can live my life, so it seems only right that I should do so!

Usually when I start to feel well, that means it's soon time to go back in for four days of chemo. I had thought I might have had more of a layoff, but the experts said "it's working, let's keep going", so tomorrow, 31 Oct, I start the new regime which is hopefully less hard on my system. This regime has 8 sets - so that takes me through to the end of March 2008. I've had tests for my kidney and heart function yesterday and - wait for it - a CT scan tomorrow. Trying not to hope for too much from that, but can't help feel the others have been great psychological boosts. We travel hopefully. And travel is good for you!

Carpe all that you can, and when you find people who will back you, treasure them.

Paul

Another celebration

2007-10-18T21:10:00.000Z

Hot on the heels of my Fiftieth - thank you all for the good wishes and cards - last Saturday we celebrated the 20th birthday of the firm O'Byrne and Kennedy, Chartered Accountants. I'm very grateful to all who made it a true celebration and a great party. The world has changed in 20 years and the firm certainly has, too. It's in great shape and has the team and the clients to do more challenging things in the future.

Medically, I am very well. My white blood cell count bounced back from diddly squat to normal on its own (I know some of you like it when I talk scientific), but my platelets and haemoglobin are low. I'm writing this while having two units of red cells infused - thank you to two more blood donors!

I finished the last of my six scheduled chemos a couple of weeks ago and the medics suggested I'd have a bit of a break before they decided what to do next. Maybe surgery to remove my useless kidney and the tumour on it, maybe some radiotherapy to "consolidate"?

In the event, they decided it's all going so well, we should carry on with the chemo. So, Wednesday 31 October I'm back in for a new regimen which will involve two sets of infusions and an overnight stay. That will be repeated every 3 weeks for 8 cycles.

I'll be around a while yet, carpe diem!

Paul

50 is the new...

2007-09-26T10:25:00.000Z

.. 30 is the lowest I've heard so I'm going for that. I've seen lots of cards (none sent to me) that do that "oh no, five-oh" type of thing. Bemoaning the ageing process. Well, as many a wise person before me has said, it sure beats the alternative.

I had a wonderful birthday party, brought forward a week to add to the confusion about when my birthday actually was (really to fit in with chemo dates) and I was very well and fit and had a great time. I had asked for no gifts but one my of my oldest friends (by duration) Peter had gone and bought me a wig. I've made out I don't care about losing my hair, brows, lashes, but I have to admit it is aay-maaazing what they can do now with wigs and I wore it most of the evening. As you can see from the picture on the blog, you'd never know I was wearing a wig, although oddly the DJ played Jackson Five songs non-stop!

Health-wise, I had chemo cycle 5 two weeks ago and took it well but have been very lethargic all through week 2. Not enough to go back in to hospital so that's a win. However, the interim blood tests showed that I was anaemic, and so I am going in tomorrow to receive a red cells transfusion to perk me up ready for chemo cycle 6 (of 6!) starting next Monday 1 October.

In lieu of presents, I had suggested people might like to donate to a charity that provides wonderful information and support for cancer-havers (there has to be something better than "patients", and certainly "victims"). To my astonishment and delight, over £750 has been given through me or direct to www.cancerbackup.org . No less gratifying are the eight people who have told me they have started or resumed giving blood. Thanks you all, I am humbled by your generosity.

In fact, in my speech at the party - you knew I'd be making a speech, didn't you - I remarked on how great it was to know of tributes from those dear to me and those who are not so close but our paths had crossed and an impression made. At funerals, I had often thought when hearing eulogies that I bet the deceased did not know how much he or she was appreciated and I resolved to tell more people how they have impacted on me and how prized was our relationship. I have said before here that the warmth of fellow-feeling I have received since being diagnosed is more heartening that can be described. The empathy, the small touches, the "hi, how are ya" are part of the essence of our co-existence, our humanity, that I feel so much more now that I'm not running around in the daily routine that is normal life.

I haven't actually done it a lot (habits of a lifetime?) but I do resolve to be openly more appreciative - and encourage you to do the same!

Carpe,

Paul

More good news

2007-09-14T00:12:00.001Z

Yesterday I got to see the results of the CT scan from Monday, compared with those of of six weeks ago (10 Sep v 23 Jul). The great news is that it all seems to halved - again!

The measurements on the scans focus on the spots (the metastases) on my liver and show that the surface of one spot has has gone from 56.9 x 46.4mm to 37.7 x 25.4mm, a reduction in area of 63%. Very pleasing! You can see the reduction in the the tumour on my kidney, too on the right of the scan pictures.

Keep up the positive thinking folks, and I'll keep taking the chemo!

Have a good day, yourself,

Paul

Quick update from Cycle 4

2007-08-28T20:55:00.000Z

For cycle 4, infused last week, they decided to drop one of the chemo cocktail, (Etoposide - rhymes with genocide) which is epecially hard on my system and may lead to me being so neutropenic in week 2 each time. As I write, it's the infamous Day 9; I'm not feeling so good and my temperature is rising...

I got to see my surfer-dude cancer buddy Ross last week while I was in. He had just been told that the highly aggresive chemo he had been having (similar to mine but on a 10 day cycle - ouch) was officially having no effect, and they were stopping it. His sarcoma is lodged between his aorta and spine so not a good candidate for surgery, so a couple of radiotherapy sessions to potentially reduce it and that was all that was presently on offer. He was amazingly philosophical about it all and is looking for alternative - and I do mean alternative - treatment ideas involving food and maybe going to Mexico. Good luck Ross.

It was Jo's funeral / celebration of the life today, and it finally hit me why she was so admirable: she always took on the fight for the underdog. No popularity, glory or rest there. But in a world where most people don't help with others' battles, and there are still deniers that kids with special needs need special treatment, Jo's energetic, passionate and tenacious advocacy and teaching helped those who needed it most.

Carpe diem!

Disappointment is ...

2007-08-20T21:08:00.000Z

...where reality doesn't match up to expectations. So I was hugely disappointed when I decided after after chemo cycle 3 that I was going to stay away from infections and stay out of hospital for 2 weeks, that on day 9 I got the shivers and then the sweats, the temperature spike and found myself back in for 6 days.

IV antibiotics kept me well, but I again needed 2 units of blood, coincidentally as my brother Tony was making his 75th donation - one a year and it soon mounts up (just kidding). I was feeling well all the time, so my continued expectation was my white blood count would bounce back quickly. The reality was it took its time. A bit of a mental challenge, those 6 days, but put in perspective by the news we got last Friday.

We got the shocking news that Daniela's dear friend and colleague Jo, whom I mentioned before battling nobly against her second cancer, had a massive heart attack and died. She was having a harsh and intensive regime of chemo, but she seemed well and we had no expectations other than her battles would continue. It can get like that: we build expectations of remission or maybe even cure; we think positively and we all act strong. But sometimes cancer gets you - or the treatment does. That's the reality. May she rest in peace.

Jo was a wife, mother, and latterly a doting and delighted grandmother. A fine colleague to Daniela and others. But we, like hundreds of others came to know her first as a passionate and inspirational teacher. I do not use those words lightly. She made a huge difference to a generation and half of children, including our four.

We should all hope to have such an impact.

Unalloyed good news...

2007-07-31T21:32:00.001Z

The CT scan results are in - and they show fantastic progress. From the start of chemo treatment to two weeks after chemo cycle 2,the tumour on my kidney, and the lesions in my liver have all shrunk 1/3 - one third - in length. On the pictures, you can see they are now 1/2 the total area they were (you do the maths - or math if in USA).

The doctors were cock-a-hoop and congratulated me. I congratulated them and the nurses - it seemed to me they did the clever work. They printed out the report for me with all the measurements (pictures are on the blog page). I have to admit that I didn't know the liver lesions were so large. Five weeks ago the largest one was 10.5 x 7.8 cm, the size now of my "big" tumour on the left kidney. Anyway it's half the size now, and I know from the blood tests last week that my liver functions - that were worryingly low - have improved.

The only little disappointment I have now seems trivial, perhaps. Having lost 30 pounds (13kg) and my hair I realised I had the Body Mass Index AND look of a potential 7 times winner of the Tour de France. (Pics to prove it). But I then remembered that I've told loads of you that I'm taking drugs and having transfusions. Having been able to watch the 2007 Tour unfold, it appears this now frowned on. Oh well, I was only of moderate enthusiasm and less talents. Even when I discovered triathlon and thought "Great - I cycle,run and swim" I found my mediocrity in all three disciplines placed me in the bottom 10 per cent of all races. I promise you those were not drug-enhanced performances.

Some drugs are good however, and I am undergoing cycle 3 with something approaching enthusiasm.

Some of you have asked for my email, rather than posting comments on the blog. I get a lot of spam so to avoid automatic pickups of email addresses, please interpret "blog a t paulobyrne.com". Thanks again for the messages and emails, even when you have nothing to say but "thinking of you" (but I enjoy the reminiscences, too). These together with ever-attentive support of Daniela and the family make it all easily tolerable.

Paul

Cycle2 Week2 was going well...

2007-07-26T20:16:00.000Z

Week 2 is meant to be the worrying low week, but it started remarkably well. I felt well enough to travel up to Sheffield to see Laura's graduation. We had a lovely meal, and enjoyed the day of the ceremony enormously. I had often wondered about the point of graduations (Photos on blog main page.) Surely, the point of a degree is the education, and OK, the employability factor. But it was great to have the occasion to recognise and celebrate Laura's work and achievements over four years. And she did get a great education as well as a good degree.

Daniela and I travelled back to London the same day and I was enjoying great strength and energy. But... next evening I started to shiver no matter how I was wrapped up, then I started boiling and my temperature hit 39.9 degrees C (103.8 Fahrenheit for American readers and old Brits). The hospital said come in and so at midnight Katie drove us up to the Marsden and so started the IV antibiotics, oodles of blood tests showing low haemoglobin, platelets as well as white blood cells (a new record low of 0.002). I was given two sets of platelets (thanks to 10 blood donors) and 2 units of red cells (thanks to 2 more donors). After 4 days of lows, the blood tests suddenly bounced back up and I was free to go next day after a CT scan and 2 "nuclear medicine" tests.

I'm a big believer that the point of treatment and surviving all this is to live - now, not just hopefully in the future - and certainly not to wrap up in cotton wool. That said, Cycle 3 starts Monday and don't expect me to be socialising in that week 2.

Paul, in good health and spirits

Week 4 or Chemo2 week1

2007-07-16T01:16:00.000Z

Hi Folks,
sorry for the lack of news - no problems other than lack of energy. After a very pleasing week 3 of cycle 1 where I felt my appetite, taste (some of those drugs do funny things to taste), and energy come back and had a great 5 days in Somerset with the family, it was back in to The Royal Marsden Hospital on Mon 9 July for the next three-night round of 17 hour infusions of a cocktail of four chemo drugs.

These actual infusions aren't too bad; the one cannula in the forearm has everthing pass in through it including a good mix of anti-nausea drugs, and subject to towing an IV trolley everywhere I can walk, sit, lie and sleep pretty much OK. And do. Back home Thursday and then the sleeping really starts! At the start of this, Daniela and I met with a worker for a charity called CancerBackup (amazing clear and yet detailed site on www.cancerbackup.org.uk ) and she said two things that stuck: "this is the start of your cancer journey, it will be uniquely yours" and "listen to your body". This didn't stop her giving us loads of useful information, but was helpful to stop me trying to conform or see what's normal and instead just obeying what my body was telling me and not just obeying my wife and clients, as I usually do. (Anyone buying this???)

Every cancer journey is different: Daniela's great friend Jo is undergoing 21 sets of daily chemo to treat a second unrelated cancer after 2 years of battling - wonderfully, nobly - her first. The day before I left hospital, in the next bed came a 28 year old fit-as-a-flea surfer dude who's just had a recurrence of a cancer he "saw off" four and half years ago. It's spread to his spine so he's getting a four chemo-cocktail, but gets just 7 days off between infusions!

Me? I got a hol with the family before Laura and Katie went to Barcelona and then Laura heads back to Sheffield to start work (YEAH!) Luke is off in Dubai holidaying with friends (abstemiously, I trust) and we had a lovely celebration at home of Katie's 21st and Laura's (a few pics on the blog page for those who see this via email forwarding). Now I've had number 2 of the scheduled 6 cycles of chemo, got a load of tests coming to check progression (regression?) next week, but have no complaints.

The hair is mostly fallen this past week. At first it was just the silver-grey ones, and I was thinking there may be a commerical opportunity here, but now it's indiscriminate. But, mustn't grumble, eh?

Paul

Aaahh - week 3

2007-07-03T16:43:00.000Z

Greetings from Somerset! After the trials of week 2 where infection and my new-record 8 days of constipation brought me way down, I'm feeling great.

We took a chance on me being well and booked a family-sized house in the Porlock in the West Country. Weather is patchy (see Wimbledon) but it's great for Daniela and I to be together with Laura, Katie, Luke and Frank before they do their different things for the summer.

Now on my fourth day free of pain, medication and medics. No complaints about the medics you understand; utterly expert, unbelievable work-rate and genuine (you can't fake it) care. But it is nice to be free of them and the meds and the observations and blood tests and questions.

My hair is starting to come out in clumps (they said that would be week 4!), but I look at it this way: anyone who knows me would agree most days were Bad Hair Days. Baldness may be my thing! Photos in due course.

Many, many thanks for all your comments and continued good wishes. I deeply appreciate them all. It's a beautiful day here - and I trust for you.

Carpe!

Paul

"The Nadir"

2007-06-28T22:39:00.000Z

On the chemo cycle I'm on they call days 7 to 14 the nadir. The chemo infusion days 1 to 4 are shortly followed days where the toxic effects of that chemo are fully felt: infection resistance is at its lowest and any little thing can have disproportionate effects.

Day 7 was June 21, in the Northern Hemisphere the longest day, a fact I can personally verify. A side effect of many of the chemo drugs and associated anti-nauseas, etc is constipation and I had it bad - and various remedies. I have often laughed at the various bad taste jokes about it. Eg: What do you give an accountant for constipation? A pencil and tell him to work it out himself!

Eventually, my five-day unproductive spell was behind me. But days 8 and 9 saw me just going down and on day 10, last Sunday, my temperature crossed the 38 degree boundary set by the medics. The ever-attentive Daniela helped me me make the right decisions (!) and it was back to the Marsden Hospital for me.

That day I was grey, wizened and in pain from all sorts of areas.the medical attention and tests and prescribing were all great but I really felt I had tied a knot in the end of the rope and was barely hanging on. We've all heard stories about chemo and I'm sure my experiences are no worse, and a lot better, than others. But it's been weird for me having no thought than to survive the next hour. And the next. I didn't look at a TV for three days, couldn't open a a paper or a book. Certainly not blog, though aware the longer I left it, the more people would start to call.

So, at the end of day 14 I can say I am nearly back. My white cell count which bottomed at 0.1 and lingered way under the count of 3 considered the minimum for infection resistance, suddenly came back to 5.5, my base level before treatment. Full IV hydration and four days of IV antiobiotics to kill my temperature-spiking infection worked. Two units of blood in (thank you blood donors everywhere!) I have given back my IV pole, and two manbags supplying IV antiobiotics and morphine. Down from four lines into my body to none.

One thing to do before being allowed home and enjoy days 15 - 21; I have to poo and break my new seven day record. Got a pencil, anyone?

Wonderful news - relatively speaking

2007-06-15T21:53:00.000Z

Today at the Royal Marsden I learned that I had a rare type of cancer with up to a year's worth of chemotherapy ahead of me.

Not what you'd normally call wonderful news perhaps, but Ewing's Sarcoma is highly responsive to chemo; we're talking a realistic chance of long symptom-free remission. Compared with what I had been looking at these past few weeks: pretty-damn-sure it's Renal Cell Carcinoma with a poor prognosis (cancer-speak for 6 months or so).

So, I have 17 hour cocktail infusing my veins even as I type. This happens for three days straight and then I go home for 18 days. That's one three-week cycle. After every two cycles a CT scan to show "progress" and after six complete cycles a pause to see how it's all going. Then there may be an operation if appropriate and then maybe a further eight cycles. That's the best part of a year of cytotoxic chemotherapy - but up to now I was doubting I'd see Christmas, so this goes down as a win!

Of course, it doesn't always work, individual responses are, er individual, and the list of side effects is impressive in its length as its severity! (Just interrupted to go and vomit - I may be inclined to give too much information). When I named this blog, it came off the top of my head, but immediately felt unrealistically positive knowing what I then knew. This is the first time I've got good news and I may yet live up to the title.

The predictable cycles mean I can plan - I've been most disconcerted by the utter lack of control and uncertainty. I never thought of myself as a control freak, but everyone around me had that impression; I just feel you have to plan to get everything done. Week 1 treatment and tiredness, week 2 is the worrying one because that's when all (really, just about all) the white blood cells are gone and resistance to infection is negligible, and week 3 is when I start to feel better but then remember it's about to start all over again. Hoping form some good family time and trips in weeks 3.

Thanks for all your kind thoughts, I feel the support and am loving it.

Paul

Initial announcement about Paul's health

2007-06-15T06:30:00.000Z

Dear all

I know I don't write much (but Hey, I talk a lot!) but there's something I need to tell you. Sorry about the impersonal method of a blog posting, but I'm sure you'll understand.

I've not been feeling well since I came back from my two weeks in Australia in March 2007. I mostly put it down to doing too much on that trip; it was jam-packed.

Anyway I've been to my family doctor practice a few times and three weeks ago I got impatient and found a consultant who gave me some tests (failed!) and referred me for an ultrasound scan...then a CT scan.

The CT scan confirmed that I have advanced renal cell carcinoma with metastasis (secondaries) in my liver. Not good.

Not at all good. My right kidney is doing sterling work on its own but some of my liver function is badly impaired. Everyone is surprised how advanced it all is given I have none of the classic kidney problem symptoms. They say I'm special! So special, neither surgery nor full-on chemotherapy was on offer. Instead, I was told I'd be starting a drug treatment, Sutent, that is aimed at getting me into remission and holding there.

Mid-May I heard I got approval for Sutent to be provided on the National Health Service - hooray for them - it's a drug costing thousands of pounds a month. But unfortunately while I've been waiting to get that approval, various of my blood tests indicated that the kidney cancer may not be the primary source. So I have had a liver biopsy and it too indicates, but doesn't prove, I may have Ewing's carcinoma. (Guilty secret: I did watch a lot of Dallas in the seventies!) The treatment for that is chemo which would be compromised by Sutent. So, eight weeks after initial diagnosis, I'm still taking pain-killers, but thinking I may need something a bit stronger! This week I've had a bone marrow biopsy and bone mass scan, then a prolonged kidney function test and heart function test. I going in Friday 15 June for all the results and expecting to start treament really hope to know what I've got and get started on treatment; they've told me to bring in my jammie-jams*.

Apart from that, I'm very well! I look well; I feel very positive and energetic and am looking forward to a reasonable quality of life once I get used to the drugs / chemo. I've always followed a carpe diem philosophy—waaaay before it was fashionable. This has happened, what matters now is how I deal with it. I'm choosing to be determined to do what I want and not be a victim. Strong-willed I call it (my wife says: stubborn)

I decided from the start that once I told my family (also magnificent) I would be very open with everyone about all this and hope they don't (to use an accounting term) write me off. Obviously, as I have no clues at present how I am going to be, when I might be back fit after the initial effects and what will happen long-term. But I really want to continue doing what I have come to love these past seven years: travelling all over and engaging with fellow professionals and helping them change their way of working, to the benefit of themselves, their firms and their clients as we have done at OBK. And continue with my Halliwick teaching swimming to people with disabilities that I've been doing these past 30 years.

I'm enjoying time with my family and friends - and greatly appreciating the letters, cards, emails and calls from many whom I haven't seen for a while. Thank you very much. As you would understand, it's hard to respond to them all, and indeed there are times when taking a lot of calls is hard on me and Daniela. So why not subscribe to this blog and then you'll keep updated - but do keep writing!

Sorry to write at such length, but I want to be honest—and I don't want to be written off before my time.

Below are links to "subscribe" - so you'll be told when new things are posted - and comments and email a blog post to someone else. Feel free to do so - or not.

Don't be shy to say Hi!

Paul

*PS: the reference to jammie-jams reminds me of a joke a best friend just re-told me from our school days: What's pink and wrinkly and hangs out your pyjamas? Your Mum!

(No, it's not too early to joke)