Hey Dan! My husband is 36 and has been dealing with cancer since Oct 08- we also live in Northern NSW......For him it has meant many trips to Sydney for treatment, no work for two years, loads of pain and lots of drugs.....BUT......he is still hanging in there and it sounds like you are too. Just keep talking, boxing, adapting...and that has been the biggest thing for us- is the constant change and adaptation. THAT is the new normal. We have two little kids who keep us 'real' and they make us smile and laugh even when we think we will never again, it is important to connect with something positive, and have a positive attitude, although as my husband often says is so hard when you have your head in a bucket and can't eat! But he always looks for the ridiculous in every situation and makes a concious effort to laught at himself (and me!) Good luck on your journey! PS_ Music helps him heaps too! for all sorts of moods and states of mind. ... View more

Hey there! If you are at St George you are seeing the best people! They know heaps! Good luck to you and your sister and the family over the upcoming op and recovery.....hope it goes well! Today is one of those days that I wish someone would just invent a cure or a vaccine for cancer NOW! Too much chaos it does cause! Thoughts with you! PA ... View more

Hey! I hear you on the driving thing...my husband was told in no incertain terms by an ED nurse that with the amount of meds he is on there was no way he should be driving unless he wanted to end up there after a car accident. I then spoke to his GP and specialist who both agreed that he should not be driving....this for him is THE WORST! WE are in the process of selling his car as we need the cash, he can't drive it if it is not there and it is old.....he constantlt throws it in my face that he has committed no crime, except to get cancer, he has done nothing wrong, except to get cancer and he is being punished by having his one hope of freedom taken away. He has been helped considerably by the Palliative Care people who will drive him wherever he wants to go at a (seemingly) moment's notice......which has given him a newish lease on life. He still can't wait to get his licence back and constantly buys lotto and scratchies in the hope he will win big and buy the best car ever! As for the smoking thing.....my grandmother had her voicebox removed because of cancer caused by smoking and I have memories in the 80s of her smoking through the stoma in her neck......She had to do what she had to do. In the end she died from Anorexia- caused by a fear of food getting caught in her throat, so she stopped eating.....go figure! CANCER is a CRAZY CRAZY trip.....one no one would go on if they had the choice! PA ... View more

Oh Maddie! I feel for you! Cancer is the stupidest, unthinking, ridiculous and painful thing ever- it just creates chaos on so many levels, in so many lives..... I can only suggest that you keep talking to us....and call the Cancer helpline or Lifeline. I admit that I have not had the time myself, but my poor offsider at work cops a lot of venting from me first thing in the morning........and I have blown the speakers in my car from playing music too loud trying to sort myself out before work. Hang in there.....it may get worse before it gets better, and the way you want things to work out may not work out the way you hope.....but sometimes you just need to take it one minute at a time......don't give up! I just want to give you a hug- so CYBER hug it up right now! PA ... View more

Hey there! I hear you about the person who lies on the couch.......my husband has been in bed for 9 days straight...only getting out to go to the hospital for his radiotherapy,then straight home to bed. He barely eats, barely speaks, barely even looks in his kid's direction. They have both been sick this week with tonsillitis and Middle ear infections, and they need him....but he is on so many drugs and in so much pain, he is barely functioning. I plead, beg, cajole, wheedle, order, complain that he should go to our local hospital so they can feed him up and get his pain stabilised, but he just wants to 'ride it out'. Um- sorry darling but you have been 'riding it out' for weeks now- it ain't working! Can we try my way now please? But alas..... We can only lead the horse to water, we can not make it drink! I totally want my husband and best friend back! I am sick of making all the decisions, dealing with all the mail, dealing with centrelink( don't get me started!), calling his family with updates about his condition.....So sick of cancer it is ridiculous! It is a hateful, non-discriminating waste of human existence- why can't we find a cure? or a prevention? Unfortunately it is hard to see beyond pain.....and even the strongest people falter when hurting.... Just know that I hear you! PA ... View more

YEah- Friends are funny- they say they are supportive, and I think they would like to be but it weirds them out on two fronts.....firstly they realise that it could happen to them, and secondly, they want you to have your treatment and get over it. Unfortunately we thought the initial treatment would sort Bob's cancer right out and he would be able to get back to work 6-9 months after his op. Well it is nearly two years down the track and he is so far from working it is ridiculous. He is flat out looking after himself while I am at work, and most days stays in bed in pain. Just focus on good friends- even one.....and from my experience, you just need to let the others go...they may come back one day, or not at all, but you have to choose where you put your energy..... ... View more

Hey maddie86! Scared probably doesn't even begin to describe it.....and patience is so hard to have when waiting for such a momentous occasion. You do get very sick of talking about, thinking about, worrying about cancer, treatment, coming back, going, successful, we don't know! It is surreal- what course did you ever do at school or uni to prepare you for this? We are all muddling through doing the best we know how, stuffing up, but still battling on. Keep going- you are doing a great job! You will be able to deal with the news you get in three weeks- don't doubt yourself! Take care of yourself too....Good Luck! ... View more

Hi All out there! So.......I am eligible for Carers Allowance- YAY! But unable to reinstate pension and HCC- "there are no exceptions". So- Have gone to the chemists I have used this year and got them to print out the safety net PBS form. Will take to Medicare and hopefully they can give me a form that I can take to chemists that will get Bob's medication for Pension rate.....until the end of the year, and then we start again. I am just closing my eyes and hoping for the best really- as the reality is a bit too scary! However, he starts radiation this Tuesday on his back and hip to see if this gets rid of the pain (oh and the cancer)....12 sessions, everyday except weekends....will be a mission to get him out of bed each day, but I have the backup plan of admitting him to hospital because then they will make sure he gets his treatment. So much to think about, but so much to hope for! If this works, then hopefully he can get some sort of life back maybe...... Once again I am blown away by the stories of others out there....I have mentioned the advocacy to many of my friends, as another way they can assist us in our battles with cancer on so many fronts. But to all of you........just keep on keeping on.......it is so hard sometimes, and especially with little ones who don't quite understand what is going on.......but remember to enjoy the good times, even fleetingly, and roll with the bad. It really is an hour to hour proposition some days. ... View more

Thankyou to all of you! As Maddie said one day is the worst and the next day is okay. I am seeing the oncology social worker at the hospital tomorrow (I know her and she is very knowledgeable)so shall keep you posted on how we go with Centrelink. Thankyou Sailor for that link to the ombudsman website.....WOW! I really am not alone! I have also written emails and letters to my local MP (federal and state), Julia, the Minister for Health and Community Services (federal and state) and the newspapers in my area. Can anyone think of anyone else I need to contact? Sailor- you also are a wealth of supreme wisdom- I know Centrelink people are totally overworked and have a massive responsibility.....so shall follow your advice on how to deal with them. Cheers! PA ... View more