Hi from NZ all is well!

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RE: Lucy bad news today

by LibbyH on Tue Apr 23, 2013 09:39 PM

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Hi Kathy, I'm glad to hear that George is feeling fantastic. You have a wonderful time overseas and good luck with your contacts in America- I'm very envious as I've only been to Australia. Tell George to remain positive and strong and I'll be thinking of you. Big hugs Libby :-)

RE: Lucy bad news today

by Maudsie on Tue Apr 23, 2013 09:50 PM

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Oh Lucy, Lucy.  I am so sorry -- SO sorry -- that you have been given news that is naturally throwing you right down.  It certainly doesn't help that you are already feeling weak and exhausted by the surgery and the aftermath... it makes it hard to look at anything with a positive motivation, already feeling sick like that.  You have some very sympathetic ears right here, we can all speak to how you feel because we have all travelled a similar scary and bumpy road, but you really do need to find support right there at home, or around home, too.  Look for support groups.  Ask around, do the local research.  And don't worry about the chemo at this point, you will begin that, or decide about that, when you are healed and stronger.  And you WILL heal and you WILL get stronger, though it probably feels like it's taking forever.  Try to live each day and find something that makes you smile.  Start small like that.  Eat what ever feels OK to eat.  This is a tough time, no doubt about it.  I have thought about you all day today and I continue to send you best thoughts and wishes.   Let us know how it goes, don't worry about being "morbid" or whatever when writing here.  We know, we understand, we're here.

Maudsie

RE: Lucy bad news today

by lucynz on Thu Apr 25, 2013 06:58 PM

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Thank you all , Libby , Kathy, Maudsie and Carolyne , you all know exactly how lonely, scary, and emotional this process is. I think immediately post op my hopes were raised significantly as the surgeon said he felt that there was no tumour that he could see and no sign of seeding anywhere , his feeling was there was no nodal involvement. He was very shocked to find it was so far spread. Thank you Kathy for telling me about George having nausea, I'm now 3 weeks post op and still have post surgery pain and nausea, the surgeon felt it could be a result of the gastric bypass, not the liver resection, but either way, I've been struggling to eat or drink sufficient. Because of the bypass I have malabsorption issues anyway. Since December I have lost 32 kgs and I'm still losing 5 kgs on average per week. I'm now the weight I was when I was 16 which is a bit scary. I've made up my mind to eat more meals per day to try and slow the weightloss a bit, my meals are less than half a cup anyway and there's not many foods I can tolerate. I have absolutely no chance of doing any anti cancer diet unfortunately. I've had troubles with my extremely selfish teenagers this week which has stressed me out a lot too, as well as my husband being unkind to me. But thankfully one of our daughters came to stay and gave them a talking to. Not that they listened. I so appreciate you all being there. Kathy, please have a wonderful holiday, and try not to worry about the spot on George's liver, it's possible it is something other than cancer. Libby thank you for your kind words, how do you feel most days do you have much pain, what are your energy levels like? I hope I will get to feel well enough to go for a walk, or even a run, and enjoy days out again, right now I can't cope with even the smallest walk down the street. Cheers Lucy

Lucy extreme nausea

by lucynz on Mon Apr 29, 2013 10:43 PM

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I've been given anti nausea meds and patches, but still am struggling to get food and fluid in I'm almost a month post op from the liver resection and I just feel so unwell. I guess I should be thankful I haven't heard from the oncologist yet. I'm so scared that I might never feel well again. I know having a positive attitude is important, just easier said than done when I feel so unwell. Lucy

RE: Lucy extreme nausea

by LibbyH on Mon Apr 29, 2013 11:42 PM

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Hi Lucy Hang in there, I'm sure it wil get better for you as the days go by. I'm sorry your family have not been so supportive for you, maybe they are struggling with the enormity of your situation and are not coping well themselves. I'm not doing too bad thanks Lucy. I have a little pain that comes and goes between my shoulder blades and at the bottom of both sides of my stomach by my ribs. Not bad enough to warrant any pain killers though. My energy level is quite good, I'm trying to eat healthy (very hard because I love my food) and have started an exercise programme with my stationary bike - trying to do half an hour each day. I have started a treatment called Rife which is a light wave treatment. Very hard to explain so maybe you can google it. The lady who I go to is 2 hours away from my home so I go once a week for 2 hours. She has had quite a few success stories so I am very excited. I would like to come and visit you but i won't be able to come for another month or so. By then you will running around and feeling much better. Let me know if that is ok with you and my husband Andrew and I will try and make a date that suits us both. Thinking of you and big hugs Libby :-)

RE: Lucy bad news today

by Carolynnz on Tue Apr 30, 2013 05:03 AM

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Hi Lucy! Sorry havent been able to check in lately havent been well myself...but saw this post and wanted to just quickly let you know that the nausea i had post surgery lasted a long time 6 months for me so very normal!! Also i had the chemo for 7 months after and even though it added to my nausea misery i would highly reccomend going with the chemo!! and also I had lymph nodes removed which the GBC had spread to as well....again why they do the chemo follow up!! Hope this helps.......and i will be in NZ next week so will give you and Libby a call....... xxx Carolyn

RE: Lucy bad news today

by LibbyH on Tue Apr 30, 2013 05:26 AM

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Hi there Carolyn, Sorry to hear you haven't been well. Looking forward to hearing from you next week and hopefully we can catch up. Big hugs, Libby xx

RE: Lucy extreme nausea

by lucynz on Wed May 01, 2013 12:25 AM

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Hi Libby, I would very much like to meet you and your husband, and I'm also keen to know more about the Rife treatment, I think anything that offers hope of a cure has to be investigated. I haven't yet received an appt for the oncologist, and its awful knowing that vicious cancer cells are loose in my body. The nausea is constant and overwhelming, eating and drinking just make it worse so I literally have to force myself to eat. I feel it's more a problem with the gastric bypass than the liver resection but I have terrible tummy ache after eating caused by wind pain and general digestive system upset. I'm looking into getting some counselling for my husband and I to try and deal with the the prognosis, I find myself overwhelmed whenever I think about it, and my husband is definitely not coping. Lucy

RE: Lucy bad news today

by lucynz on Wed May 01, 2013 09:30 AM

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Hi Carolyne, My cancer is staged at 4b, which honestly sounds as though there is no hope. The nausea isn't improving at all and I'm only able to eat the smallest amounts of food, and liquids. Nothing feels good in my tummy, it reacts horribly each time I eat or drink. I'm on patches and pills for the nausea, but they don't seem to be having much of an effect. I think I'd be in a far better position if I hadn't have had the gastric bypass, but because I have I'm now rapidly getting anorexic. Cheers Lucy

RE: Lucy bad news today

by Maudsie on Wed May 01, 2013 10:41 AM

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Lucy, yes it really does appear that the gastric bypass is complicating the situation, and without it you would have more of a normal recovery from your surgery for sure.  I hope, and assume, that your bypass docs are still involved in your case, they would be the ones to best consult about your eating/pain/digestive problem, which indeed sounds significant.  Better off without the gastric bypass?  Sort of, and sort of not....it was from the bypass surgery that they found the cancer, if I'm remembering right, yes?  

Have your docs considered the temporary use of TPN?  This is Total Parental Nutrition, which is intravenous feeding, you get all the nutrition and calories you need through an IV, basically bypassing your digestive system altogether.  Might help until your digestive system starts to heal more and your stomach settles down.  Gets you hopefully out of pain since most pain medications only contribute to gastric problems.  I'm sure your docs, and you, would rather try to handle this without resorting to intravenous measures....but it's a thought that might make sense if this current problem is too much to handle other ways.  Just wondering.  Lucy, I am just so sorry.  I think of you a lot and sending you best thoughts as I write this.  Maudsie

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