Ppc

[Juliette35]

I did a really stupid thing, I Googled Ppc which I have. Now I can't stop thinking about what it said, I can't believe I did that. 😩now I can't get it out of my head. Just had my 11th (I think) weekly taxol another seven to go.

[Hidden]

You are so bold keep away from dr google, he is like Manuel in Faulty Towers, he knows nothing/. Seriously their stats are totally out of date and some of the US site are rather too dramatic for me. You are doing very well on the taxol and hold on to that thought you dont need to think of anything else but the facts in your case

[Juliette35 in reply to Hidden]

Thanks suzuki, I have just read your reply out to my hubby, I hope you didn't mind. And he said the same as you,

It was a stupid thing I did. 😞x

[Hidden in reply to Juliette35]

Look its natural to be curious but some of the stuff you find is really scary and we are all individual. Keep on with the taxol I dont mind you reading my answer to your hubby. I learned in Mindfulness thoughts are words but not facts and we tend to ruminate and make stories out of our own journey. I dont know if that make sense but it is meant to.

[Juliette35 in reply to Hidden]

Hi suzuki, my daughter in law told me about mindfulness so going to practice that. Thanks again for your helpful reply. Also I think the chemo as affected my memory I keep forgetting things, for instance I tell my son's, hubby, and others things which iv already said to them about a few days before. Lol xx

[Hidden in reply to Juliette35]

I have to confess to doing the same or forgetting what they have told me. I also find myself putting stuff into the fridge instead of the dishwasher but I check myself in time, Chemo fog lol

[Juliette35 in reply to Hidden]

Haha yes I understand what you mean

Lol xx

[Gleedy]

Hi. I have PPC. I have not googled since early days as it is too depressing. Even my friends cried after googling. I'm currently NED and focusing on that x

[Juliette35 in reply to Gleedy]

Thanks gleedy, that is what I am going to do. Live for today and tomorrow will take care of its self. Really glad you are ned, when did you find out you had ppc. Xx

[Gleedy in reply to Juliette35]

I was diagnosed Jan this year. Surgery in June and last chemo Aug. NED September. I had a 0.5cm deposit left near liver but chemo should have dealt with it. For now I'm living my life. It's hard but I'm not spoiling what I have for thinking about what I might have xx

[IrishMollyO]

Dear Juliette

I also googled PPC 4 years ago and I was sorry that I did. However if I had believed it I would have given up right then and there. I somehow put it out of my head and made a huge effort to get back my positivity. As lots of people have said here statistics are probably not up to date, and they always give you the worst case scenario. Just listen to your doctors and I'm sure they are not quoting from Google. Take care and best wishes

XXX

[Juliette35 in reply to IrishMollyO]

Thanks molly, you are right I was told by my macmillan nurse to treat it like a chronic disease. Are you still on chemo, I haven't really had a break from it since starting it last year apart from going on avastin which didn't work for me. Will finish this weekly taxol first week in December then have ct scan xx

[IrishMollyO in reply to Juliette35]

Hi Juliette

I'm halfway through my chemo . My fourth I'd on Monday.

[IrishMollyO in reply to Juliette35]

Sorry Juliette

Went too soon. Will finish around the same time as you although I won't have had to do it for as long as you. This time round I'm finding it hard mentally so there are days I am struggling. Take care and stay in touch .

XXX

[Juliette35 in reply to IrishMollyO]

Thanks molly, I don't know about you but I am sure chemo has affected my memory I keep forgetting things. Like I was telling one of my son's something and iv already told him same with my friends and hubby. Yes my onc said by the thirteenth or fourteenth chemo it will affect me more, I think he means the fatigue. Is that what you feel like.? Xx

[IrishMollyO in reply to Juliette35]

Hi Juliette

Was out this morning and just turned on my iPad now. I know what you mean about the memory. I'm sure it affects everyone. I have lost count of how many times I have repeated a story. The fatigue never really left me . Right now I am also trying to deal with a really low feeling of despair almost. It's a long story but it's been an uphill struggle with a hostile CNS and an abrupt oncologist . Tomorrow is my fourth chemo and I am praying that I will get talking to someone who can sort things out. It's difficult enough dealing with a recurrence and treatment without having to deal with some unfeeling people. The nurses on the chemo ward are lovely and caring and it keeps me going . Sorry I didn't mean to go on so much. All the best Juliette. Take care

XXX

[Juliette35 in reply to IrishMollyO]

Thanks molly, for your reply. Xx

[Juliette35 in reply to Juliette35]

You take care to. Xx

[Millie-c]

Julie you are doing so well, ignore the stats, we are all individual.

Take care, xx

[Juliette35 in reply to Millie-c]

Thanks millie, yes that is what I am going to do, hope you are doing well too. Thinking of you. Xx

[Chamber]

Hi Juliette

Yes I've googled ppc many times. Why do I do it ? I think sometimes I can't believe I've got this rotten thing. I check up on symptoms and treatment. It doesn't make for nice reading.

Well we've come this far Juliette so let's just keep on living and defy those statistics !

With love

Judy x

[Juliette35 in reply to Chamber]

Thanks judy, yes I am going to stay positive and putthat out of my mind and we will prove the stats wrong. with love Julie. Xx

[Mommoo65]

Oh Lordy, I did the same thing. Still do. But somehow I never believed those scary stats applied to me. My oncologist is delighted with my progress and that's all I need to stay positive.

[Juliette35 in reply to Mommoo65]

Thanks mommoo. X

[LittleSan]

Hi Juliette, I've Googled many times, read statistics and academic papers online and I have fitted none of the statistics/facts. I'm here and stable over 5 years from diagnosis and that's all that matters. I regret Googling as it wasn't worth the panic to only find out years later that those stats don't apply to me. Having said that my mum is poorly and I'm at it again trying to find out what her heart op is likely to involve - hey ho - I'm only human ;)! My GP said a prognosis is like a weather forecast - and you know how accurate they are!!

Mindfulness is a great tool.

Much love and tranquillity to you.

Sandra x

[Juliette35 in reply to LittleSan]

Hi Sandra. That's great news, I do hope your mum soon gets well and comes through her heart op. Thinking of you.xx

[Julie40]

I'm a stage 4 PPC and have been living with it from Mar 14. I was given a very ooor prognosis and of course googled the stats. Scared to close my eyes to go to sleep but within a week had a second opinion and was a new woman. He warned me not to go near it. He told me what the stats were but also that even if there was only 1 survivor why couldn't it be me. That totally transformed my thinking and I never went looking again and even when I do read things that pop up I always remind myself it's not my story. The stats are so out of date and we are all individuals. I have a fantastic Oncologist who tells me if I've any questions or need to know something ask him directly no need to go looking for answers he will always be honest.

I'm now in a place that I don't even take my scan reports he gives me the highlights. I usually love the detail but I've had to make a decision to trust my team or go crazy with it all. I'm doing really well. I've had a recurrence and I'm on a parp inhibitor now and feeling so good. DO NOT go looking for information. It will only upset you. This is a great place to come for PPC help as you will see from your post you're not alone and we can all offer you support. Worrying about tomorrow steals today. Hugs xo

[Juliette35 in reply to Julie40]

Thanks Julie, yes you are right worrying about tomorrow steals today. Big hugs to you

Love Julie xx