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Hi Everyone, sorry I have been a bit quiet of late, been having a bit of a rough time of it. 6 weeks ago I started a 3 week intensive course of IV treatment for my lung diseases. I was in hospital in Manchester for a week to get stable on the drug and to be taught how to do the IV myself through my porta cath in my chest. The treatment had really nasty side effects and caused some kidney damage too. After 3 weeks I finished the course and on friday I go back to Manchester to find out if it has done anything, whether it has slowed down the speed of growth or spread.
This is pretty much a last treatment option available after my disease became resistant to the other treatments that are available.
So if everyone could keep their fingers crossed i would be very grateful, also if anyone in the UK is interested in coming to watch me doing my olympic torch bearing I am doing it on July 1st in Chipping Campden at about 12.30.
Jules
Need Everyone To Keep Their Fingers Crossed For Me On Friday
Started by
jules
, May 02 2012 02:16 AM
48 replies to this topic
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#3
plank
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Posted 02 May 2012 - 04:05 AM
Everything crossed Jules.
Good luck with the torch too.
Good luck with the torch too.
There are two types of people in the world; those who classify people in two types and those who don't.
#4
Edinburgh Colin
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Posted 02 May 2012 - 06:16 AM
Pulling for you Jules, sure it will go well, look forward to the Torch Bearing!
EC
EC
Impossible only describes a problem that needs viewed from a different perspective
#7
nomis
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Posted 02 May 2012 - 07:26 AM
Here's hoping, Jules. I'll be thinking of you on Friday.
"It's the notion that there is no perfection ~ that this is a broken world and we live with broken hearts and broken lives but still that is no alibi for anything. On the contrary, you have to stand up and say hallelujah under those circumstances. " - Leonard Cohen
#8
knightrider
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Posted 02 May 2012 - 07:34 AM
Everything crossed for you Jules and will be thinking of you on Friday
"I like the dreams of the future better than the history of the past, so one way to get the most out of life is to look at it as an adventure"
#10
greybeard
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Posted 02 May 2012 - 10:52 AM
Got my fingers crossed for you Jules. I used to be able to cross my toes as well, but seem to have lost the knack. Wonder why. 
Be thinking of you Friday.
Be thinking of you Friday.
I am not young enough to know everything.
Oscar Wilde (1854 - 1900)
#11
Aparr
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Posted 02 May 2012 - 11:23 AM
I will be thinking of you Jules. Everything crossed that I can for you sweetheart!!
Best of luck with the torch!!
Best of luck with the torch!!
A man who carries a cat by the tail learns something he can learn in no other way.
-mark twain
-mark twain
#16
qbounce
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Posted 02 May 2012 - 06:15 PM
Thoughts and prayers, crosses, whatever it takes, Jules.
We just want you to bear more torches and run more marathons!
We just want you to bear more torches and run more marathons!
When we remember we are all mad, the mysteries disappear and life stands explained. - Mark Twain
#17
julibugs
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Posted 02 May 2012 - 06:57 PM
Jules,
You will be in my thoughts and prayers - I will be there in spirit to cheer you on at the torch bearing. Good luck
You will be in my thoughts and prayers - I will be there in spirit to cheer you on at the torch bearing. Good luck
Life is not measured by the breaths we take, but by the moments that take our breath away
#19
spot
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Posted 03 May 2012 - 03:52 AM
Keeping you in my thoughts, not just on Friday, but I'll have a special "thought session" for you on that day (Hopefully on Friday, your time.)
#22
jules
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Posted 05 May 2012 - 09:08 PM
Hi Everyone, I thought I would give you an update, firstly thanks so much for all of your comments and support it really does help. Well yesterday didn't go well, the ambisome treatment does not appear to have worked because my growths are bigger and I am having lots of bleeding in my lungs at the moment. They did do lots of blood tests to see if I responded in any way to it. The other bag news that I had was that my immune system is completely shot, we are not sure if this is directly from the disease or whether it is the treatment, or a combination of both. My CD4 and CD19, which are white blood cells (CD4 is T cell and CD19 is B cell) my CD4 count is the same as a person who has AIDS, the count where someone is diagnosed as AIDS rather than HIV is 200. This means that I am liable to get a lot more opportunistic infections like AIDS patients get, so we will be making decisions as to whether I go on low dose prophylactic antibiotics now.
We haven't made any decisions about what to do next, but it has knocked the stuffing out of me a bit, I have also picked up a secondary infection,which I will probably need IV antibiotics for but hopefully now that I have my port and can access it myself I can do my own IVs without having to go into hospital.
At the moment I am putting all my energy into my charity wheel that I will be doing for the Matt Hampson foundation, and also this year my local chest consultant (who I love to bits and is amazing) fund. The wheel is 110 miles in 6 days, as an aside if anyone is interested in sponsoring me please PM me and I can send you my just giving site.
Thanks again for all the support, I am sorry that the news wasn't better, but I will be fighting on, just not sure what our tactics are going to be yet.
Jules
xx
We haven't made any decisions about what to do next, but it has knocked the stuffing out of me a bit, I have also picked up a secondary infection,which I will probably need IV antibiotics for but hopefully now that I have my port and can access it myself I can do my own IVs without having to go into hospital.
At the moment I am putting all my energy into my charity wheel that I will be doing for the Matt Hampson foundation, and also this year my local chest consultant (who I love to bits and is amazing) fund. The wheel is 110 miles in 6 days, as an aside if anyone is interested in sponsoring me please PM me and I can send you my just giving site.
Thanks again for all the support, I am sorry that the news wasn't better, but I will be fighting on, just not sure what our tactics are going to be yet.
Jules
xx
#24
greybeard
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Posted 05 May 2012 - 10:44 PM
The Rat just about summed it up. Jules, I often think about you and hope you are having a good day. Sorry your news wasn't better. Keep safe.
I am not young enough to know everything.
Oscar Wilde (1854 - 1900)
#25
Edinburgh Colin
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Posted 06 May 2012 - 09:26 AM
Got to agree with GB, Ratty has nailed it again. Hope you get an opportunity for a few smiles.
EC
EC
Impossible only describes a problem that needs viewed from a different perspective
#28
julibugs
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Posted 06 May 2012 - 09:10 PM
Dear Jules,
Stay strong my lovely, this is dreadful news but take each day as it comes and enjoy the little pleasures in life. Thinking of you xx
Stay strong my lovely, this is dreadful news but take each day as it comes and enjoy the little pleasures in life. Thinking of you xx
Life is not measured by the breaths we take, but by the moments that take our breath away
#29
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Posted 08 May 2012 - 01:55 AM
As has happened often, of late, I missed the thread until just now. I am very disappointed that your therapy was unproductive.. and I firmly hope that there WILL be options. Your strength and determination are always both an inspiration and comfort to me. Please know that you are in my thoughts.
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