So- I get a call from my darling husband's onco man in Sydney today...mmmm....this can't be good..... And it ain't....there is now disease IN his liver and his bowel is covered in tumour. Before it was only on the lining of the blood vessels on the lining of his liver.....Bummer! And there can be radiation bead put in his liver to shrink the tumour, but it is not a cure nor control...... MMmmmmmm..... What does this mean? I ask....that he will get tireder and tireder as his liver struggles to function....is the answer. Prognosis (which we have never had before due to the rareness of the cancer....) Do nothing- a year..... What would you do? I ask.... Definitely the radiation bead in the liver would increase life expectancy.....then maybe surgery on his bowel might also increase time left...... mmmmmm.... How long..........????? Maybe an extra year....... mmmmmm...... Thanks very much, I say- (what the hell for I ask myself later!!!) You need to discuss it with your husband tonight and let us know what you would like us to do. Cheers! I say.....(am I drinking with this guy? Proposing a toast to our union?) Bye..... Bummer! SO I went outside, sat on a rock in the playground and cried. Quietly. The sun was beaming down on me and then I hear thunder....I look up and there is the biggest, blackest cloud over my head, but not blocking the sun. More thunder.... And I feel like I am in a cartoon with a big black thunder cloud of bad news hanging over my head.....which makes me laugh...... Am I delusional? Then I went back inside and taught Year 11 Art for the afternoon. I am delusional! SO I have come home tonight and told my husband the news.....he cried....then told me he would continue to fight! But I don't know if I can any more.... But there were more cuddles and kisses for the kids tonight, more stories, more lying in bed with dad.....cancer even has the power to screw up a bedtime routine.......it's the little things..... Bummer! Another trip to Sydney.....to who knows what???? Cheers! (And I am raising my glass to all of you out there!) PA
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Contributor
ohhh im so sorry to hear this! i really feel for you! i wish i could give you a big hug right now! what kind of cancer did your husband have orignally? was he on the road to recovery? this is really horrible and i know right now it just seems a big jumble! will they operate do more treatment etc? its such a horrible thing, especially when the news recieved is not nice! :( xx
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Regular Contributor
This seems an awful way to receive this type opf news. I am a teacher as well and it is amazing how sometimes we fall into routine and just continue until the reality sets in.Not delusional - just struggling with the grim reality. I hope that you find the correct answer for your family. Samex
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Occasional Contributor
Dear Purpleangels, I am so sorry to hear of your husband's news. I do wish you all comfort during this trying time. A wonderful lady I met years ago during lymph node drainage said to me she is a buddhist. She believes all he teaches and in his teachings. One of the teachings are, Why worry if it can be remedied, why worry if it can't. This doesn't mean you shouldn't cry and let it all out though. I don't know if you are a believer of a higher being but I do believe if we release all fear, we can accept each day as it comes. I too poured over hundreds of articles on remedies and cures over the last 12 years and have found living for each day is so much easier and allows for me to enjoy everyday. A little tip, sometimes doctors can get it wrong. I was only supposed to have had at least four years from all the information on my cancer and how it invaded lymph nodes and spread, and am still here today after 12. God bless you all. xx Annie333
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Contributor
Hey All! Originally my husband was diagnosed with Epithelioid Haemangeoendothelioma- basically cancer of the lining of the blood vessels on the lining of his peritoneum/ major abdo organs- gall bladder, appendix, Diaphragm, peritoneum, ureter, large and small intestine/bowel, liver. He had a preitonectomy in Dec 08, during which he had hot chemo poured into his abdo, followed by 6 weeks of oral chemo (which made him so ill he had to stop), followed by radiation, followed by more surgery, followed by treatment for depression/ isolation/pain management......pain has been the main issue for the last two years, as he is in chronic pain which has only just been semi controlled by a syringe driver with morphine and clonazapan? which is attached to him 24/7. As you can imagine, he is not lucid much, is sedated most of the time and struggles to get out of bed because of exhaustion. We have been told that he needs to go to Sydney again (we live in Tweed) so he can have biopsy's, tests, more scans so they can make some choices about treatment options....there is some mention of a SIRT? radiated bead being put into his liver, which might improve his outcome by 6 months to a year...... He is so frightened of going, and I haven't even told him that they have basically given him a time frame.....I am going to leave that to the doctors...they get paid the big bucks! SO we are on the countdown, four weeks till we go. He is getting admitted to Tweed and then St George will organise an inter hospital transfer....which is great, but I don't actually know what that means..... I know that our time in this world is finite, and no one can accurately predict a number, and I do have hope that he is one of those people who proves them wrong- (Thanks Annie333)..... Because his cancer is so rare, it is hard to know... So the journey continues, bring on more angels! PA
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