Fingers crossed the surgery will go ahead in a couple of weeks for you then. Keep chasing them up. Take care. ... View more

Hi @mensana,   How are things going this week, have you heard from them about your stress test yet?  It's sounds typical of Darwin medics. And I'm really surprised that they waited this long to get you referred to an oncologist.  I was initially diagnosed while we were up there, & to say the least, I was not impressed with how everything was handled.   I was actually referred to 2 different oncologists to start with.  One was so arrogant & so far up himself,  he didn't believe me when he asked me if I'd had a CT scan of my head & told him no.  So he asked his nurse to find the scan results.   I stopped seeing him that day.  The other one was quite useless as I think I must have been his first patient.   He didn't even bother going thru the first report from a scan I had with me.  He just printed out a copy of it in the reception area & said we could pick it up on the way out.  So we sat in the car & googled everything in it.    He had told me I was going to have chemo first, then have the op to take my kidney.  But the surgeon had said the opposite.   Turns out the surgeon was correct.   Then the Darwin Hospital isn't much better.   The day of my surgery, the doctor nicked my adrenal vein as he was going in, so he had to quickly open me up further than planned so he could stop the bleeding.  I lost around 1litre of blood while they did that.   After the surgery, the took me to the Private hospital because there wasn't enough room in the public recovery ward.  The following day, the anaesthetist came looking for me in the public hospital.   They told her I'd been discharged 🤣 .  A day after major surgery!  She couldn't believe it, she said, when she finally found me.    So many more bad things happened to me in that hospital,  but I  don't want to totally scare you.  I learned some valuable lessons during that time.   - If you can, always have someone in the hospital to look out for your interests because the nurses don't give a f**k.  (OK, there were 2 nurses who were fantastic,  so not all nurses are that bad).  The day after my op, one nurse came in & told me to go have a shower, then walked out & left me to fend for myself.  I was lucky hubby came in just after because,  I  was in alot of pain, I was hooked up to  a drip, & I  had a drainage bag clipped onto the other side of the bed.  She'd left me to get out of the bed & get to the shower by myself!  Now, I understand they're understaffed, etc, but really, would it have taken her that much time to help get me ready, because there was no way that I was going to be able to get out of the bed on one side & have enough tube from the drain bag to stretch enough to get around to the other side. - Always watch carefully, & double check everything they do.  I get reactions to adhesives, like really bad blisters.  I told the surgeon not to use anything but the tape I gave them to go over the wound.  BUT, he didn't pass on this info to his lackies who closed me up - they used a dressing with normal adhesive.   To make matters worse, they put the end of the dressing right over the incision.   So by the time I saw the dressing a day later & had it removed, I was covered in massive big blisters that ripped open when they took it off.   Now, my hubby watches everyone like a hawk.  Unfortunately, he has to because they either don't listen to you, or are so used to doing something their way, they have difficulty doing things differently.   I even had one nurse say to me that when she's heard people in the past say they have reactions to adhesives, that she didn't believe them, until I showed her what I had suffered.  That's the mentality we're fighting.  We're just patients - what would we know? I'm sorry about the rant.  I just have very little faith in the medical profession & I get angry about them. Keep on top of them!  Chase things up!  Don't let them procrastinate, because it's your life they're playing with.   Thinking of you.  Take care   Budgie     ... View more

Hi @Rico2018    Sorry to hear of your diagnosis.  There is a great thread started by Captain Australia about effect of radiation on  the neck area.  I hope yo can get some info to help you in there.  @https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-side-effects-from-head-amp-neck-cancer/td-p/25626   Take care   Budgie ... View more

I hope she recovers well & quickly, & with luck it will be the end of the cancer for her.   Take care   Budgie ... View more

It's not like you're deliberately trying to lose weight. Some doctors! I suppose she was getting angry because if they have to rescan you ,they might have to do more little tattoos. You're make extra work for them - how dare you? Did you have tattoos or a mask? I've had about 8 dots tattooed on me over the years. ... View more

Hi @Tor33,   I'm very sorry for your loss.  It's never easy to lose a loved one.  Please know that everyone grieves in their own way - there's no right or wrong way.  Perhaps if you don't hide your grief from your father, you will be able to cry together.   You can support each other.  Talk to him, & your husband, & if that's not enough, get some counselling.   Don't  try to hold back the tears, let them come.  One day they will stop, or come only occasionally.   I lost my eldest sister in 2004, my Mum in 2009 & I still, sometimes shed tears for them both.  I miss them.  But life goes on & it does get easier.    Take care  Budgie    ... View more

Hi @Sue888 ,   Sorry to hear of your diagnosis, but welcome to this site.   If you're unhappy with the treatment offered to you, ask your GP for a referral to a different oncologist.   Alot of them will work out of public hospitals, so it shouldn't cost you anything.   You are entitled to a second opinion.    If you give the Cancer Council a call on 131120, they should be able to give you info on any financial assistance you may be entitled to (or point you in the right direction).     I know last year in the US, there was a shortage of the BCG vaccine.   I don't know if they use it as it is to inject into the bladder, or if it's further modified in any way.  But that may be a reason it wasn't offered to you as a treatment.   It might be good to ask your current onc if that's why it wasn't offered to you, just in case, because if it's not available,  another onc might not be able to offer it to you either.  Anyway, I hope things work out well for you.   Budgie   ... View more

Hi @KaceJax ,   I agree with your friend.  If you're not getting anything from this one, it's no use continuing with her.  I hope you find someone to help.  You know,  even talking with your friend can be of great help... if they are willing to talk about all the ups & downs.   Take care   Budgie  ... View more

My husband was a counsellor so we talk all the time, & it helps alot.    I hope you can get some relief.   Take care.   Budgie ... View more

Well said, @Dee58 .  I agree wholeheartedly.  And yes, they do push Advance Care Plans towards people now, even if you're just going in for a simple operation, in some places.   It's great that you're seeing someone from the Cancer Council @mensana .  Talking does help.  I'm lucky - my husband has been a counsellor for work, & we talked alot about what we were going thru, & still do.   We download to each other, joke about things if we can & get on with living.   I hope you get great benefit from it.  Now, you need to work on your sleep - I hope you get some.  Take care.    Cheers   ... View more