Hi from NZ all is well!

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Decision made

by lucynz on Mon Jun 10, 2013 01:48 AM

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Well after much thought, research, prayer and careful consideration made to what peopled have said I made the decision to not pursue chemotherapy and make the most of the time I have. Because I got so unwell post surgery and I'm only just starting to feel good again I am reluctant to put myself through feeling sick and tired with chemo side effects especially given the problems I've had eating and drinking. I'm sure everyone is different but for me I just don't think I'm ready to to try it at this point. The oncologist thinks there is a window of opportunity for chemo and I'm almost past it, but I'll just have to take that risk I think because I'm reluctant to give up the health I have left . I hope I'll be the extremely unusual case that somehow doesn't have a recurrence of the disease despite not having chemo. Cheers Lucy

Decision made

by lucynz on Mon Jun 10, 2013 03:38 AM

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Hi everyone, I made the decision this morning not to go ahead with chemo, largely because it will definitely make me sick having it, and I'm only just now starting to feel ok after the liver resection. I'm told there is a high chance of the cancer returning, and having the chemo won't necessarily reduce those odds, so having given it huge amounts of thought, research, prayer and deliberation I've decided to opt for quality of life for as long as I have. There is the chance the cancer may never rear it's ugly head again, and I'm of course hoping and praying that will be the case. For all of us living with this disease, I pray for better, more effective treatments to become available, and that each of us would wring every precious moment from each day joyfully. Love to all of you, thanks for sharing your experiences, I'm going to keep on here, just won't have much to share because I won't be having drs appts and so forth until I'm really in a lot of pain or have some other symptoms that require me to go to hospital etc. Cheers Lucy

RE: Decision made

by Minmin on Mon Jun 10, 2013 10:10 AM

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Hi Lucy, I'm with you! Quality is key. No matter why you've always got friends who understand in this group. I'm praying that the cancer doesn't rear it's ugly head again for you too. Great that you're going to stay connected. I find you inspirational. Enjoy everything you can, and live your life as if the GBC never happened, for as long as you can. With much love to you. xx

RE: Decision made

by lucynz on Mon Jun 24, 2013 10:47 PM

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Hi Kathy and George , I hope you are both doing ok, how did your trip go? My husband and I are looking to go to Rarotonga for a few days soon, we have never had a proper holiday by ourselves ( without kids) let alone one overseas, but I figured that we had best do something while I'm still well enough. I'm feeling much better now I am not nauseous and I'm able to eat better. I still have to be very selective with what I eat, but I feel really good now. The only hassle with overseas travel is not getting cover for health due to the cancer. But I guess it's really not worth worrying about. I hope you are ok Libby, I've been thinking of you every day. Cheers Lucy

Latest visit to oncologist brutal honesty

by lucynz on Fri Jul 19, 2013 05:46 AM

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Had my latest visit to the oncologist today, the usual guy wants there and a woman was standing in for him, she was brutally honest, and asked me whether I was there to get palliative chemotherapy. I said I wasn't wanting chemo, she said that if I refused chemo now, I might regret it in a few weeks when it metastasises to my liver and bileducts and it will be too dangerous to try chemo then. She examined me and my lungs sounded clear, and there were no nodal lumps anywhere, I feel as healthy as a horse, I simply don't believe that I'm supposed to succumb to this disease anytime soon. She also told me that no matter what, no one survives this type of cancer, funny, someone ought to tell that to Maudsie eh!!!! I'm feeling a bit shell shocked now, but seriously glad I'm not doing chemo, and am feeling well. God bless each of you as we go through our various battles with this cancer. Cheers Lucy

RE: Latest visit to oncologist brutal honesty

by Maudsie on Fri Jul 19, 2013 01:47 PM

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Lucy, you are priceless!!! I would SO like to know you!  That lady might have seemed brutally honest, but yikes!  I would say everyone certainly does NOT succomb to this cancer!!!!  I think you made the right decision.  You feel good, go enjoy it.  

big hug --

Maudsie

 

RE: Latest visit to oncologist brutal honesty

by DiarmuidD on Thu Aug 01, 2013 12:46 AM

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Hi all sorry for not being on here for quite a while now, but I have had such a normal life the last year that I have had nothing to add. Now I realise that that fact is probably the most important thing to say here. I've been very well and the surgery/treatment is now a distant memory. I did have a minor surgery to correct an incisional hernia that has been there since my original surgery. Nothing to say but all went fine. For that lady to say nobody survives this is just not right and she should do her homework. I have survived! and its been over three years now and I'm as normal as anyone. There are I'm sure many more like me. Maudsie is one. Although she IS much better than I am at understanding the disease and has been a massive help to me and others. So to Lucy dont listen to that lady she is defiantly wrong I hope your treatment goes well for you mine was ok and not too bad all things considered. The best of luck to you all here. It's a roller coaster ride for sure, but don't be disheartened there are good times ahead too. I hope everyone can see this. If you think they cant please pass it on.

RE: Latest visit to oncologist brutal honesty

by Maudsie on Thu Aug 01, 2013 09:55 AM

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Hello to all -- I have just read DiarmuidD's note and am so happy indeed that he continues to do so well, and I suspect this cancer is now totally behind him, as it is for me.  I had my last final CT scan 2 days ago and the results are clear..which we all expected.  So, after five years with him,  I hugged my oncologist goodbye and we wished each other well, both with big smiles...he rarely sees anyone walk away from this disease.  And now I am finally totally done, and walking away from that cancer center for the last time.  But... I am not done here, on this forum, and never will be.  This is an important place for me, with precious people who continue their journey.  In fact, we are all still on this journey, I am changed forever by GBC, and feel united with you all.  Yes, there are survivors.  But that almost entirely depends on catching this cancer in early enough stages to be entirely, or almost entirely, surgically removed.  Really, bottom line, that is the thing.  There is promising cancer research out there so the situation remains fluid and open for most of us with this disease...and so survival  is certainly NOT beyond hope.  And some do better with the chemo than others, everyone is a little different.   So the fight goes on, we do the chemo, and/or radiation, we swallow the pill, we stay on course, we take care of ourselves, and we hope for the best.  However for Lucy not to choose therapy in her circumstance is a brave choice and if I were her, I think I'd do the same.  I just wanted to let you all know.

I send love out there to you all --

I am still here --

Maudsie

RE: Latest visit to oncologist brutal honesty

by lucynz on Wed Aug 07, 2013 12:50 AM

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Hi DiarmuidD and Maudsie,

I appreciate you both writing and sharing your news, I am still feeling well, and I really do take each day at a time, I think its a healthy way to live, just to be thankful for each day, and to love life. I am so happy for both of you, that your cancer ordeal is behind you both, and you are living proof that GBC is not neccesarily a death sentence. My oncologist has told me I have little to no chance of surviving GBC, but I'm not going to live the rest of my life believing that, its not a good way to live. So every normal day I have, I'm thankful for, and I pray that God will give me many more. I'm thinking of Libby, and Carolyne, both of whom haven't written in for quite a while. Lots of love to you all out there. Lets hope we start proving the nay sayers wrong.

cheers Lucy

RE: Latest visit to oncologist brutal honesty

by Maudsie on Wed Aug 07, 2013 09:53 AM

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Hi Lucy -- you are such a sweetheart, and your approach to life is an excellent one for all of us, whether we have some illness or no.  I too think of Carolyn and Libby -- it HAS been a while, I hope they both read this and respond!!!!

wishing and hoping best for all --

M

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