First off, my apologies for inadvertently transgressing this site's guidelines. It is the site owners' hard work and responsibility to run it as they see fit, and I should respect that.
I did only offer evidence-based info, all from medical research and most from orthodox medical doctors (as anyone will see if they follow the links I gave). However, I am aware that some of this information is contentious for those who think such advice should only come from orthodox qualified medical professionals - and I do not wish to upset anyone.
Cancer treatment is a developing field, and what is discovered in one country may take some time to spread to others - even within the same country (not all hospitals even agree that chemo should precede RC for example, even tho' the research and historical evidence is now overwhelming in its favour, done by the research hospitals). Alas, some of this sort of info may only spread by the knowledge of the patients themselves being shared.
But I understand the difficulty of this - how to check that non-medical people are giving sound info? For me, it is by always giving the links to the original research evidence so that us patients can make our own minds up and also taking it to our medical advisers.
However, back to my apologies at the start - I should not contravene the guidelines of those whose dedication make this site possible. So I thank them for their gracious dealing with my transgression and will now be more discrete.
Best wishes to everyone, Ian
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.
I'm also a non-smoker from a family of smokers. I have begged my mother for twenty years to give up smoking but of course it doesn't work unless they want to give it up.
Is there a family member or friend near by the current hospital who can make it meetings easily so someone is there to hear directly from the doctors and take notes? Or can you move your mother to a hospital closer to where you live? That 1.5 hours travel must be taking it out of you.
All the best,
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 ...
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.