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
39 comments:
Hey Paul,
This is super news! I (and Ron) have been very concerned because our research, such as it was, was not very encouraging. I'm really excited that the diagnosis has taken you down a less dark path. All of us on this side of the pond are really pulling for you. Take it as easy as possible. You are in our hearts and minds.
Your friend, Justin
Paul, I was speaking at a practice managers (health sector) conference today to people that were really uncomfortable about measurement because of the maths. So I really emphasised the language component - the sensory rich language and using it to be super clear of the results you want.
It reminded me of the power of clear thought on what can manifest in the body. If you aren't already, something you may find valuable is visualisations of your body healing and cancer shrinking and leaving because you don't need it anymore. It's already done its job and can go. Maybe some websites that could help, if you're interested:
http://www.cancerhelp.org.uk/help/
default.asp?page=256
http://www.empoweredwithin.com/
products/cancer.html
Warm smiles, Stacey.
Paul, your "good" news is wonderful to my, uh, eyes. Chemo is yucky (yes, that is actually a medical term!) but the possibility of reducing the Matter, and entering remission is definitely worth it.
Love and hugs,
Michelle
My TA,
That's wonderful news (I know, the irony). Glad you started treatment.
Hope I get to see you when I'm over?
Does this mean I should change my flight to 5am?
Thinking of you always,
gh
Paul,
in the scheme of things great news. Means all your clients,customers, friends, current converts plus those future converts can now look forward to seeing you back in Australia before too long hopefully.
Meanwhile some of us will keep up the good fight and hold the fort until you return.
Got another fine bottle of Barossa shiraz and a fine Rutherglen muscat waiting for you.
Keep it going mate
John & Karen
Hi Paul,
It is fairly early here in Louisiana on a Sunday morning and I am enjoying some quiet reflective time. I actually was thinking of you and decided to check out the blog site. Your courage is inspiring.
FYI..Sarah is still home on a visit before she begins her first, after university, job as a registered nurse in Birmingham (that's in Alabama...not the UK!)Of course she is still sleeping. She and I have discussed your current circumstances...not the most recent news however...we are/will be encouraged!!
Again, know our prayers are with you daily.
Tim McKey
Hey, wait a minute...
O'Byrne's blogging????????????
paul, been meanng to do this since ron told me, but being computer challenged, well anyway here in d.c. with ron, just got the good news, our thoughts and prayers are with you, hope to see you in the usa at a class in the future.....love sam and jeanine
Paul
You were never this good at updating the obk web site!
PK
Yo Paul
Great news that you have a diagnosis and a plan to execute! Lots of positive thoughts coming from way down here in NZ to make this work for you. Stay strong - we're coming back to the UK in December for hols.
POM
Hi Paul,
This is great news - not just for you, but for everyone that knows you and who works with OBK.
I heard the initial news from our mutual techno geek (he knows who he is!) and it was really quite upsetting.
When I first heard you speak at one of our eBiz seminars many years ago, you totally changed my opinions on being sucessfull in business.
Coming from a working class family I thought that making money and wanting success was somehow dirty - as though success only comes at a price to somone else; but that day I realised that it doesn't mean giving up qualities such as honesty, integrity and humility.
It may sound silly but that speech had quite a profound effect on me and my direction in life - and I just wanted to say thank you for that.
Anyway, enough of all this sentimentality - where's my monthly phone call!!!?
Hi Paul. Not seen you since the days of Big Chief and the St Christopher's Cycling Club (I was the one you used to help push uphill, well, in the early (unfit) days). Glad to hear you have some positive news and a plan with which to move forward. My thoughts and prayers are with you and all your family. Love Anne Putman (nee Curran)
Paul and Daniela,
As well as family members, we knew your local friends were rallying round with support, hope and prayer for both of you at this difficult time -- but how wonderful to see that we are only a small part of a world wide support network that is out there rooting for you!!
As they say - keep taking the tablets! - and we hope it's not too long till you are back 'on yer bike!'
Tony & Maggy O'Byrne
Paul, your positive thinking is truly wonderful. I am thrilled to hear that you have started treatment. You really could not be in better hands. It won't be long before you are off travelling once again.
All the Dumbletons are with you in spirit and are thinking and praying for you and the family. When Elise was ill we really did feel the power of all the love sent by our friends and family and I know with a fabulous family like yours that you will be feeling it too. As Henry Cooper said in the old Brut adverts ' rub it in all over'! Actually, I think you may be too young to remember that one, but I am not!
Anyhow, take lots of care of yourself. Love to you and the family.
Wendy x
Hi Paul - Another post from NZ - Keep thinking positively, it’s what your good at! Wishing you a successful treatment....
Stefan
Hi Paul
I have never doubted the outcome although the process sounds a little uncomfortable!
Sorry but I cant identify with the picture, sitting behind a desk working, no standing in front of your white board and taking the ........ out of me more like!
Would be rude but others might not understand, so just keep at it and do what you are told, how shall I put it, you strong willed person.
Love Nick & Debra
Such great news! This sounds like a really good "project" and we know how Paul likes a project with some meaningful planning and a real goal at the end. Right up his street, then !
We think of you often Paul and imagine you pushing at the edges and re-designing the health service while you are there, just as an aside. So good to be included in this blog, to be included in the journey.
best wishes, Debra x
Hi mate,
Good idea to set up the blog, but being a first time blogger I'm not sure if I am doing this right! Anyway, as you say, this is the first bit of relatively good news, so it is very welcome! I'll pass on the website address to the many people who keep asking about you. Can we send any books etc to keep you amused during the treatment or do you not feel like doing much?
Let me know...
Take care of yourself and your family
Phil Rumbelow and all at Jubilee Hall Clubs
Does this mean you will soon have a hair style like mine,one of the major advantages of Chemo I am told.
Very pleased to hear the news I still have my motorcycle gloves if required.
Very Best Wishes
Frank L
Hi Paul,
This is such good news, so much more encouraging compared to last month. We are all thinking of you
David Dobson & Family
Outstanding news red leader!!
So pleased that you can now make a plan - control freak - who said that? :-)
Chemo thang is crappy but I know a tough chappie like you will handle it and also that it, combined with your strength of will and fighting spirit, gives you a fantastic chance of living up to your Nom de Plume.
Thoughts and love
The Richardsons
Hi Paul,
Good news at last,
I know the treatment will take some time, but be patient.
Yes patient, not a word your familiar with ha? Some things take a little longer than what you are use to, but hang in there.
Try and get to your appointments on time, and no canceling out because you’re "running late"!!!!
It’s pretty obvious you have touched the lives (and hearts) of so many people, both here and abroad.
Your positive attitude and the support from your terrific family will have this beat and behind you in no time.
Our thoughts and prayers are with you.
Now; once in hospital you must remain a patient and focus on the job in hand and that is to get better.
The NHS is just that, it’s not a business and you are now retired, so I don’t want you’re mind working overtime. So no new strategies like;
“Grow your hospital and save a life”
“What you can measure you can mend”
“Build a salable hospital”
Our love to you and your family, hope to see you soon.
Your little friends Peter & Nina.
Ps. Was the picture taken in the 70's
Great news Paul! Trust you to have an unusual form of cancer (for a man of your age)- always the exception to the rule!
Take it easy on your down weeks - you never know, you may actually be able to watch Le Tour this year
Justine, Lee, Eva & Oscar
xx
Pobby,
Big hugs
Sue and Gav (Blaze) x
Hi Paul,
Just back from the OBK MBA session,Paul Kennedy is doing a fine job but I miss your jokes! Glad you have some more positive news, and I wish you well with your forthcoming treatment. Hopefully see you back soon.
Best wishes
Paul Walden
Hi Paul,
So pleased to hear your news and glad to read more evidence on this blog of what I put in my letter!
Still bowled over by your comments on the phone about 'not being worried' about it.
Would love to see you when you feel up to it.
Robin
Hello Paul, what you doing in hospital - get back to work! Who am i going to tell off, and tell to get off the phone cos you're talking a load of old rubbish, hey?
And get rid of that silly old 'bug thing' you've gone and got yourself, ok!!
Ugly as ever in the pictures, take a better one, ok! And take care of yourself!! Lots of love, light and sending you bags and bags of healing energy, Katerina Timotheou xxx
Paul All these years and that's the first time I've seen you in your jim-jams! I wish I could say it was worth the wait but I'm past all that now! Lots of people cheering you on - us included. Much Love (and matching accessories)
Pauline, Hannah and Grace xxx
Paul,
Thought you might like to hear the happy news of one of your Penguins - Jenny O'Sullivan.
Jenny returned home last week, after a romantic holiday in Austria, with an extra piece of hand luggage. I haven't seen the ring but I know that the wedding is planned for August next year. John Wallace is the lucky chap.
Jenny, John and friends have been celebrating since Friday at Glastonbury where her swimming skills and surfing techniques have been put into practice.
Good luck with the treatment.
Jon and Cecilia
PS Blue is rather formal and conservative, something a little more exotic and adventurous for the next picture, but no pink please.
Hey Unc,
You look great in blue!
Seeing as my cousins ignored by suggestion of going for a beer perhaps you can remind them for me...and yes I will pay for the poor students!
Love to aunty umbrella too xx
See you soon,
Gregorio
Paul, thinking of you and sending my healing thoughts. I hope this week isn't too awfully bad. Hope Baker doesn't wear you out! (jk Ron).
Love to you and the family,
MG
Hey Paul,
Heard the 'good' news from Robin on Friday - at least we can now cross fingers, toes and other appendages. All at Juice send their best wishes and knowing you are confident of a positive outcome. I guess telling you to "Begin with the end in mind" might not be the most appropriate - but what the H***!
See you soon,
Ian T
Paul,
your new best friend probably is not going to leave you alone in bars, nightclubs and in taxis so please be kind and thoughtful to him/her/it!!
Less seriously how you going at the moment? Need some Aussie cheer?
John
Hi Paul,
It was such a shock to hear that you had a blog “ paul-cancersurvivorinthemaking “. I opened it very apprehensively and was immediately hit with positive waves (you’ll remember these from the 60’s!).
Clearly the treatment has other positive benefits - you now look so much younger than your OBK web site picture :)
I’ll keep looking onwards and upwards with you – I’m convinced that everyone’s positive thoughts will keep the momentum of the 2+2 = 5 effect going.
With best wishes from all the family.
John Hegarty
Hi Paul,
great to hear the positive news after our coversation the other week. Wish I had something witty to say.......! Actually, maybe this would be a great opportunity for me to beat you at both the swim AND the run in the St Albans mid-summer race!
Keep it up Paul, Graham x
I glad to hear your recovery went so well and it was nice to see someone recommend my cds for cancer.
I apologise, but, in my opinion, it is obvious.
Aha, so too it seemed to me.
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