Welcome Emma! This is a great haven! Good luck for your remaining treatment and op.... PA ... View more

Enjoy planning your wedding and don't invite the rude ones or detractors or just plain jerks I say!! PA ... View more

There is also gabapentin which is not on PBS but cheaper than lyrica. My husband gets Lyrica through the hospital pharmacy- he did a day at Lismore Pain Management Clinic and they order the Lyrica through there and have it delivered to Tweed hospital. It only costs $5.80.....as he has a health care card again. Maybe investigate going to a pain management clinic and see if they can sort it for you....... PA ... View more

Interesting....... My husband has a very slow growing (2mm in a year) cancer, that is very rare. So far he is three years past diagnosis, with no treatment options and battling pain from his operation three years ago. We concentrate on getting him pain free, we have not even really begun to focus on eradicating the cancer.....is he a survivor? Is he "living with cancer"....... I ask myself this a bit....... We see his surgeon in Sydney once a year (900 kms away)who tells us he is doing okay....... The tumor robbed him of a kidney last September, as it blocked his ureter......is he surviving? I think he is...... Olivia newton John tells people she is thriving..... And I ask myself if this applies to my husband......no definitely not. Every day is a battle with pain, loss of memory caused by meds, loss of bowel control caused by the cancer, battling depression, unable to drive, work, lift children, wrestle with our three year old son......so thriving......no. Still with us, contributing in small ways to our family, making memories for our young children, creating a beautiful garden, folding the washing...... Walking lots and being mr havachat to everyone in our local area..........I would consider these small victories...... Surviving!!!! Living one day ata anime, surviving.......sometimes living one hour at a time......surviving....being out of hospital for nearly six months........a record......surviving!!! Being able to keep food down.....surviving..... It is all relative AND personal....... Thanks for sharing and good luck!! PA ... View more

Oh pal! I hear you! When my husband was diagnosed, our son was 6 months old and I was still getting up twice during the night to feed him. When his onco told us that we would need to freeze his sperm as there was a chance that he would no longer produce some, we just looked bleary eyed at each other and said 'no thanks!'..... Although we did want more children initially...... It is something though that was not mentioned again until after his op, when we realized that he no longer had proper sexual function......to which one of the doctors replied....'well that would be my fault"...... To which my husband replied as quick as you like. "well I try not to think of you in the bedroom"...... Another piece of the cancer puzzle...... That is not mentioned much at all anywhere.....surely after all the poking,prodding, operating and such, it would be nothing to talk about this side of the equation.....in my husband's surgeons case, he has petty much held all of his internal organs except for his heart in his hands.... What could be weirder or more awkward than that!!! Hang in there....and just take every moment as it comes, coz it will come and then breathe and take the next one.....ride the wave as it were...... Thoughts and positive vibes headed your way tonight! PA ... View more

Hi there! Good luck and positive vibes coming your way....... I care for my husband who has a rare peritoneum cancer...... That has affected pretty much all the organs in his peritoneum..... Life is so tough at times, but don't forget to appreciate the small victories and they may be small......and be fleeting, but it is so important to acknowledge them, they somehow make the hard days bearable...... We have made a conscious effort to say to each other, THIS moment is great! THIS moment we are 'normal'............ Even if it only lasts minutes.....we are grateful for it......but it has taken three years to get to this point....... And some days are revolting and rubbish!!!! PA ... View more

Hi nat! Good luck tomorrow! Sending positive energy your way........ Remember to breathe when feeling overwhelmed...... And cry if you have to........ Let us know how you go! PA ... View more

Hi Nat! You are a similar age to my husband who was diagnosed with a rare peritoneal cancer three years ago. Hang in there and hang out in here....... Such good therapy and support from others when you feel poorly. Don't forget to breathe deeply.... Have you found a good social worker? Can be helpful, they sent me here...... Take care! PA ... View more

Hi there! My husband had a peritonectomy on December 2, 2008. He is still hanging in there. He has a very rare cancer that is made even rarer by the place he has it- wait for it- epithelioid haemangioendothelioma...... In his peritoneum. They took his peritoneum, omentum, loads of large and small intestine (colostomy for 6 months after), gall bladder, appendix, diathermied his liver, part of the rhs of his diaphragm..... And a few other bits and pieces. He had chest drains, abdo drains, high levels of pain killers after the op but was out of hospital in 3 weeks. His main issue to date has been with pain ( unexplained) so is on pretty heavy doses of morphine and oxynorm. He was 35 when he had the op, has lost heaps of weight but really struggles mainly with depression caused by the chronic unexplained pain. He had his op done at st George with a fabulous team. It is the mother of all operations, but having a positive attitude helped (sounds cliched) ...... Good luck! Good luck! Good luck! Ask any questions if you want further info..... Cheers! Purpleangels ... View more

Maddie! Long time..... Bugger Bugger Bugger! My darling husband has asked this question for the first time himself just this past month....he just wants his life (our life) back! Too many days spent in bed and not out with his family in the sun.... But! The lady down the road mowed our lawn the other day.....someone left movie tickets on my desk at work, just when you feel that it is all too much...out of the boue something happens to remind yourself that you are not alone! And we are not! It is just so hard some days to get out of bed and keep going....... I have been reading a book called the Four Agreements and another called Simple Abundance (among other books on how to housetrain/ wrangle young children...but that is a whole other story!) Even though the message may not seem relevant everyday....there are some beautiful ideas in these books to try to practice and learn from... And you can borrow them from the library for free- gotta love the free stuff at the library! Hope you get some hope again soon! Sending you purple hugs! PA ... View more