Cpet

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Bob1955
Posts: 305
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Cpet

Post by Bob1955 » Sat Oct 28, 2017 1:44 am

Thanks for the replies, I had myself set up for this op and now I feel that not only is the chance of a cure gone, but the chance of cancer is now very high sooner or later, they think I have hade the cysts around 10 years or so...and I can't help but think that is a long time .... I feel mentally drained and fed up, I never realised the op may NOT be a option as all the feedback I got before was positive.

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Foxysally
Posts: 207
Joined: Sat Apr 01, 2017 11:25 am
Location: West Sussex, South of England

Re: Cpet

Post by Foxysally » Sat Oct 28, 2017 11:28 am

It sounds a bit strange if they seem to have done an about face :( As it was someone different, will you get to see your usual person eventually? Can you ask to see them and talk it through with them?

I'd feel a bit cheated, I think, if I was told I would be getting an op if I got my fitness up, I got my fitness up and then it led nowhere. I'm not surprised you're upset, especially with the cancer worry.

I really would keep going with the fitness, though. Apart from anything else you may get a different opinion further down the line if you stay fit.
Sarah

Bob1955
Posts: 305
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Cpet

Post by Bob1955 » Sat Oct 28, 2017 12:08 pm

Unfortunately not, I have CysticFibrosis and my lungs are not good, this is why they reckon I would not survive, they were honest and said it how it is, the reason to improve my fitness was to seehow my lungs performed...although my fitnes very much improved, my oxygen saturation levels dropped quite a lot during the test, they said a bad chest infection or pneumonia would finish me or leave me with little quality of life...I can understand all that, I queried why the stats for the whipple were so good yet my chances were so poor, he said they basically cherry pick candidates for the op, the ones with the better chances to do well get the op...so the figures are a little misleading.

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MikeyB
Posts: 2616
Joined: Sat Apr 30, 2016 6:48 pm
Location: Ribble Valley, Lancashire

Re: Cpet

Post by MikeyB » Mon Oct 30, 2017 12:59 am

You aren’t exchanging one risk for another of equal likelihood, Bob. The risk of the cysts becoming cancerous is relatively small. It’s all a matter of perspective, which is skewed at the moment. Just get on with living. After all, living is a relative risk as well. Just stay fit is all you need to do as best you can. You’ve been doing it for sixty odd years, after all. You’re an expert.

Bob1955
Posts: 305
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Cpet

Post by Bob1955 » Mon Oct 30, 2017 1:42 am

You are correct Mike, and sitting moaning about it wont change the facts, I may try sky diving or bungee jumping...once I overcome my fear of heights 😂

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Janey Dal
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Joined: Mon Jul 26, 2010 10:34 am
Location: Stockton on Tees, NE UK.

Re: Cpet

Post by Janey Dal » Mon Oct 30, 2017 1:09 pm

Very disappointing for you Bob when you have worked so hard.

I can only add that Alan had a modified Beger’s op (whatever THAT is? :shock: :shock: ) several years ago with much the same hope as you had prior to it. Whilst there is little doubt it was an improvement on his previous quality of life (which was practically non-existent) it was by no means the life changing intervention we had both hoped for.

He still cannot work and he is still in constant pain. His prognosis now is simply pain management because they have removed the damaged part of his pancreas yet the pain still remains.

So whilst I fully understand that your expections were perhaps inappropriately raised, there is no guarantee that the operation would have made that any different and add to that the distress and recovery time of a major op and maybe, just maybe, it’s all worked out for the best for you?

Hugs

Jane xx

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stuart13
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Joined: Thu Nov 02, 2006 8:23 pm
Location: The English Lakes

Re: Cpet

Post by stuart13 » Thu Nov 02, 2017 8:45 am

Hi Bob,

I have to agree with Jane, reluctantly, in that, I can understand your disappointment regarding the not going ahead with the op, but she is right in that although an operation might sound as though it is a positive step there could be no guarantee that by having it you would be any better off than you are at present. Yes, your level of cancer might be higher but you have to weigh that against their real concerns that you might not survive the operation.

The best that you can do for yourself is to keep a good level of fitness and general health. Don't push yourself but walking is one of the best medicines for both physical and mental health.

Stu :)

Bob1955
Posts: 305
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Cpet

Post by Bob1955 » Thu Nov 09, 2017 2:44 am

I dono...I was told at the last appointment that I would get a scan within a month to see if there were any changes... and today I get a outpatients app in a clinic to see Dr Chang (senior lecturer and surgeon who specialises in cancer), ad far as I am aware I do not have cancer but I was expecting a scan...not another meeting... not only am I more concerned, but getting seriously fed up with appointments that to me are fruitless....any guesses why a surgeon would want to see me ????

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MikeyB
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Joined: Sat Apr 30, 2016 6:48 pm
Location: Ribble Valley, Lancashire

Re: Cpet

Post by MikeyB » Fri Nov 10, 2017 10:25 am

To reassure themselves, maybe? To reassure you? Don’t get paranoid, Bob, they’ve seen all the previous scans.

Bob1955
Posts: 305
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Cpet

Post by Bob1955 » Fri Nov 10, 2017 6:40 pm

Aye Mikey, I just find it strange my CF consultant was very sure I was fit enough, but they dont think I would survive...lol...from one end of the spectrum to the other, I would prefer tobe in the middle😂😂😂

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Janey Dal
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Joined: Mon Jul 26, 2010 10:34 am
Location: Stockton on Tees, NE UK.

Re: Cpet

Post by Janey Dal » Sun Nov 12, 2017 11:44 am

Not sure about Scotland but if your doctor suspected cancer at all in England they would whip you in there the same day.

Any waiting time has to be a good thing I promise.

Hugs

Jane 😘

Bob1955
Posts: 305
Joined: Tue Dec 27, 2016 1:10 am
Location: Glasgow

Re: Cpet

Post by Bob1955 » Mon Nov 13, 2017 2:00 am

Thanks Jane and everyone who replied 👍

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