It's not actually all THAT far, it's just that the bus connections are abysmal! But she's had her first Chemo session yesterday, today was a bit wonky and she needed haemoglobin, but she might be home as soon as Monday for in between sessions on Thursdays ... but yep, we're still looking to move her to a nicer hospital that is also a tad closer and has better amenities, so that will make her stays more 'enjoyable', if such a thing is possible ...
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So it turns out today was just the visit with the Oncologist. I'm not altogether happy with him. I'm on public transport to get there, it takes about 1.5 hours, I arrived at 9am and he'd already been. The new hospital she's at is giving her Oxycontin and Endone (the other one where she was at previously when we thought this was strictly surgical was giving Endone/Panadol) and the combination of the two drugs and the unexpected visit meant that my mum wasn't able to ask all the questions she would have liked. She asked him to come back when I arrived and explained I was enroute and would be there all day, but he refused saying that he didn't need to talk to me cos there was nothing more to be said!
Also, we had thought this was a temporary hospital for the first round, and that future rounds would be at her preferred hospital - this is what the Oncologist had actually said to ME when we spoke briefly on the phone last week. Now the nurses say that the Oncologist wants all future treatments to be at the current hospital, that he doesn't offer Chemotherapy out of the other hospital, which doesn't make sense cos I *know* that other hospital offers Chemo, and he actually told me that the rest of the treatments could be there. I asked him: "Will it be a problem having the first Chemo treatment at one hospital, and the remaining treatments at another?" and he said that it wasn't. So either the nurses aren't really contacting him, or the Oncologist is lying, and it's my mum's life on the line here. My mum doesn't LIKE the current hospital where she's at. Aesthetically it's a dump, and even as a visitor it's a very depressing place to be - I want her out of there ASAP!
Thing is, this Oncologist is a friend of the surgeon who's going to be performing the RC eventually, so it's a tricky situation to be in. I think I need to phone the Cancer Council tomorrow for advice.
In other news, Ian, thank you for what you wrote. I know this forum needs rules, and maybe it wasn't appropriate for the forum, but I did appreciate the time and effort you went to and I *will* click those links!
Tanya: Yep, I come from a family of smokers (I'm a non-smoker), and watching them get sick one by one is excruciating, but especially with my mum, it's beyond even that. Thankfully she's stopped stone cold now, and I'll never be enabling that habit again.
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Thank you Ian for such a thorough and informative post!
On my way out now to see my mum on what should be her first day of Chemo, but I absolutely will follow up on every link you posted when I get back.
Stay strong, and again, thank you!
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Than you Sailor. Yes, the Sam Newman doc has handed her across to a colleague who specialises in bladder removal. He came to the hospital today (a Sunday visit!) and apparently the tumor is currently too big for surgery, so the first steps are to increase her weight/health and also chemo to shrink the tumors. I just keep wondering when the bad news will end?
I probably exaggerated about the "drug haze" ... just that on the Endone she tends to sleep a lot, and off the Endone she has pain. Then again, sleep's probably a good thing for her. While in the hospital she's been gaining weight back, about 500g a day, but now it looks like they might discharge her into my care, and I just hope I can maintain that progress. I'll be speaking tomorrow with the Dietician and the Discharge Nurse for more info, and also hope to call the Cancer Council as you suggested.
Thank you so much for replying by the way ...
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I'm Kate in Vic. It's almost 4.30am and yet another night without sleep since we found out my mum has bladder cancer. She went into hospital Wednesday for surgery Thursday on a suspected GYN-mass, and the first part of the op was to put a stent in her left ureter because supposedly the mass had squashed it shut.
So it was during the first part of the surgery that they discovered it was bladder cancer that was also wrapped around her left ureter, not a gyn-thing, they did the biopsy but the major surgery we'd expected didn't happen. And now we're in a holding pattern, waiting for Monday when we hope to get the results.
Everything seems to be going wrong though.
It started off wrong - her GP seemed bored and even went to sleep during one consult, we wasted weeks with him. Then our regular GYN has lost the results of all of both of our previous visits, so has no record of us ever having seen him, and was going off on a conference so couldn't see us.
We found a new GYN with a good rep, he did some tests and referred us to a guy who apparently is the holy grail of GYN-docs, and he is friends with the doctor who did Sam Newman's prostate! Finally we had 2 great docs, which was something of a relief.
But the Holy Grail doc dropped out when it wasn't a gyn-thing, and now my mum tells me that we're also losing the Sam Newman-doc and getting one of his "colleagues". There's also some talk that they may not be able to fit her in for surgery next week, and that she might want to go home, but she has cachexia and pain and I really feel that the best place for those to be treated is hospital, with a surgery that happens sooner rather than later - there have been too many delays already!
My mum has 2 choices at the moment - excruciating pain, or drug haze - so she wants me to be there when the docs talk to her, but I'm on public transport and don't want to risk travelling alone in the dark, and the docs keep coming when I'm not there, even though I've been there every day for 6-7 hours at a time.
My mum and I are really close, and I'm just blind-panic-scared all the time now, and I hate the way this is going, with losing the good doc after we found him, an unknown surgery date, and the hospital seemingly wanting to put her out-of-sight,out-of-mind.
I really need some advice. Thankyou.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.