First Post from New Zealand
- This topic has 3 replies, 4 voices, and was last updated 8 years, 11 months ago by
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Hi,
Welcome! Thank you for introducing yourself and sharing your story. Long-term stable although not perfect, is very good to hear. More importantly, I’m glad you’re able to enjoy life. This disease can be a wake up call to many that we should be living and loving more.
Take care and keep in touch,
CatherineHi Allan,
Welcome to the site and thanks for posting after joining a while ago. Sorry that you had to find us all but glad that you have joined as you are so in the best place for support and help and will get loads of both from us all.
Thanks for sharing everything that is happening for you and you say you are feeling pretty good right now. Well feeling pretty good sounds good to me and I have to say, what a great attitude you have. I hear what you say re no second opinion in NZ and it being a very small country. I a few family members that moved to just north of Auckland decades ago from Scotland and I get what you are saying here.
Yes you most certainly do have much living to do, so you go for it! You guys down there are on your winter right now are you not? Hope it is not too much of a bad one! Please do keep on coming back here and know that we are here for you. I look forward to hearing from you more.
My best to you,
Gavin
Dear Allan, welcome to our remarkable family along with your fantastic attitude! WOW! You are a brightly shining star. I know we have had one or two members from NZ and if you go to the top of page to our search engine and type in New Zealand posts from them will pop up. I think one could say “Life is for the living” no matter how it is done. What a Miracle that your tumors have stabilized, you just never know which is why we don’t listen to statistics either. So, you go on filling your bucket full of good things and please do keep us informed of your progress.
Hi everyone
I joined this site in February after I was diagnosed with Intrahepatic Cholangiocarcinoma that is stage 4b. I am 54 years old. It took my team 3 months to positively identify my cancer and a Liver biopsy nailed it down. It has spread to a lymph node below my liver and also one beside my heart. The left kidney also has a tumour.
It is inoperable and has been since being discovered in December 2014 after shingles arrived. I had some hope of chemo shrinking the liver tumour for surgery but since it had already spread my Oncologist suggested I would be better waiting until I have more serious symptoms and then maybe have chemo. My health is pretty good apart from fatigue. He said chemo would maybe extend my life by 3 months but probably take away 6 months of reasonable good health.
I took his advice and here I am 6 months later feeling pretty good. Working hard on my bucket list and enjoying an early retirement. I still work 2 days a week just for fun and sanity and enjoy my 5 day weekends to just get out and live.
I have CT scans every 3 months and my last one stumped the Oncologist as 2 of my 4 tumours have stabilized and showed no growth. The large on in the liver grew slightly and the lymph node grew some as well. Liver is over 5cm and lymph node is 3.2 cm. We are happy with the slow growth.
Time will tell how long I get and I intend to make my own statistics. My faith in God has helped on a spiritual level and I have passed the cancer into his care as its just too big for me to deal with. I never looked back once I did this.
Will re evaluate the chemo options after winter and see if it may be useful to me. Many find this hard to believe that I choose to go untreated but for now its working for me. We don’t have clinical trials in New Zealand for this cancer and second opinions just don’t exist as we are a very small country and this is a very rare cancer. I am happy to go when the time comes and I don’t fear death but I’m in no hurry and I have a lot of living to pack into my finite time. I pray for you all here and around the world. You people understand :o)
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