Hi Mirkir, So So Sorry, My Heart Sincerely goes out to you! I am told Seeing Karen So well I mean She looks normal etc. Acts Normal, But Here is this Thing this UGLY HORRIBLE THING inside her, Add to this the surgery scaring inside and out,Some Pain And Slight differences Temperature control is a huge issue, Nausia,tummy pain,Aches More than usual Etc. And I can Only assume was and is the same for so many? There are days I just can not Fathom what I hear or see regarding this type of cancer! And Yes the Children even though mine are older and independent they are like me We are simply making the most of it We just celebrated Karen's 50th had a huge Party Close friends and Family, All of a sudden the garden and house work just seems so irrelevant. and we tend to go out more for Lunch etc. I can not imagine life with out her,or the 33 years together Now having a Stupid TIME limit put on it Sigh! GOD I just can not Fathom The next year Sigh! We keep positive,We hang on to Hope After all these silly 2% and 5% survival rate things Well someone has to make that % up right? And we have the fact Karen is yet another Unique individual as was your Wife or Jane Smith down the rod like! THANK YOU so Much for coming back and writing on here for ME for US,for EVERYONE Mirkir :) ... View more

8 weeks have passed since my partner passed away from brain cancer and I can totally understand when you say it seems to have gotten harder. Just when you think you are managing a 'tad' better, such as driving in the car alone with minimal tears and bang your hit by a 5 metre wave and your back at the drawing board of lost and so sad. I have been there and thought I was pulling it together and right now I am down and lost again. I don't understand how it gets easier. So I am sorry I do not have any words that can help you process and cope, I think we are all individual and support from family and friends is our best avenue. If you or anyone else has any advice on how to cope please share. What has worked for you? What hasn't worked? Keep strong, take pleasure in the little things, live each day to the fullest and smile and laugh at the many good memories 🙂 ... View more

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 ... View more

Thankyou to all those who have replied.........Given me heaps more places to go...if you read my thread on It's back and more voracious....you will see why.... Cheers! PA ... View more

Hi All! Once again some great advice! I have found a child psychologist at my local Area Health Service who has worked with our daughter (5YO) and has done wonders.....I have also had a few chats to a psychologist of my own....and once again quite helpful! I think maybe our children may emerge more empathetic and sympathetic to others, which can only be a good thing. PA ... View more

I have just read that post again for the first time......ahhh how quickly things shift..... a few days of poor eating and the poor darling man is right back in bed, no acupuncture, missed appointments with GP and onco to see if radiation was successful......He just can't catch a break! But we battle on, and maybe tomorrow he will have a good day, be able to eat, his medication might work, he may be out of pain, he might get out of bed...... And the story continues as we roll increasingly faster to two years since his peritonectomy! and the start of this insanity! ... View more

5 year olds are very wise! my little sister is 5, she knows whats going on.. so cute they are. Im very much the same with vomit! i clean anything else but when it comes to vomit i vomit myself.. its disgusting! haha ... View more

I have just read all of your comments and it makes me wonder if its worthwhile filling out the centrelink forms i have here. HOW does the Gov't expect you all to live ?????? ... View more

cancer can be humerous! we were at the oncologists the other day and my bfs doc said 'i'l be right back my pen just died' we giggled at the irony of it... its a long process.. the internet can be a bit scary as some of it is just writen by people who dont really knw much... i advice to stay away from it, unless looking up posative information like survival stories etc! xo ... View more

i know how u feel! the waiting game is awful.. but there's nothing you can do.. my bf has his good days and bad days, and ur right when the bad days are bad, they are horrid! my bf gets so moody and angry and just blank.. pain management is good because it means healing faster to.. i massage my partner often, this helps hims sleep and with the pain. I also think that you should be upfront and honest with your kids.. i work with children and they often are very cluey about things. Best of luck! xoxo ... View more