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It's my first meeting tomorrow and I don't know what to expect. I haven't been able to get the tests I needed to have done (chest x-ray, bone scan and liver scan) before I get to see him so don't know what to ask or what we will talk about. Has anyone else seen the oncologist before having the other tests and will it hold my chemotherapy up? I just want to get in there and get it started so I can zap this little ***!!! out of me!
What sort of questions should I ask? I have so much floating round my head at the moment. I am self-employed so will not get paid while I'm unable to work and as I already have Fibromyalgia, I am wondering how heavily the chemo will hit me. I know I'll have to have Herceptin as I am HER2 positive but have no idea about the rest (I have IBC)
I'd been feeling reasonably OK up until this morning and then it's all gradually started to creep over me like a damp grey blanket. I have good support from friends and my immediate family but my own parents haven't even phoned to see how I am, even though they know I have cancer and although they've never been the best of parents, it's shocked me and upset me. Sorry, this is turning into a rant but what I really want to know is - what might I expect tomorrow and what should I ask?
I'm not sure you can expect a whole lot, given that the oncologist won't have your full story until all the tests are done?
But what they will tell you is the most likely scenarios, the likelihood of chemo, radiotherapy, etc etc.
I would make sure they are aware of the fibromyalgia, in order that it can be taken into account. Even if it's already in your notes, make a point of repeating this, as I've found from experience that they don't read all the details half the time.
As to your parents, I guess if they've not been great, it's not a surprise that they haven't come up trumps for you at this difficult time. That doesn't make it easier though, does it? I think sometimes people just don't realise how much of an impact their words and actions have on us, and although my parents were OK, I ended up having a row with my mother (we don't get on that well really anyway, although she'd tell you differently!) and telling her not to ring me! Insisting on telling me all about how so and so had a Mx and no recon and because they had a supportive husband, it wasn't necessary. I wanted a recon for ME, not for my husband but I was absolutely livid that she even considered that my husband was less than supportive - he was an absolute ROCK. So I guess what I'm saying is that you're not alone, rely on your real friends to support you, and, of course, US!
Good luck for tomorrow ....
Thanks, Helen. I just can't imagine being in a place where I wouldn't pick the phone up to my daughter to speak to her in this situation, no matter what (and I haven't done anything awful or given them any trouble in the past) so although I'm not really surprised, I just find myself wishing I had PROPER parents who would want to look after me and care what happens. Sigh. We can't choose our families, can we? Like you, I'm really lucky in having a fantastic husband and my children are also wonderful. My daughter just dropped everything and flew down to London to be with us, even thought she's got a business up there that she's busy building up with her partner. My son is equally supportive so I know I'm very, very lucky in that respect.
So, tomorrow is another day and quite a big one. I wish they could have got the tests organised before the oncologist but I hope it won't delay things very much.
Thanks for your support. Everyone on here has been so helpful, it feels like another extended family.
I was HER2 positive back in 2004 and my advice to you about going to see the consultant would be to just try and take it all in, also don't be scared to ask if you don't understand something, they will understand that what they are telling you is a lot to take in.
Also take each bit of the treatment one step at a time, that way it won't feel so overwhelming.
Ask your breast care nurse anything medical, make her your best friend LOL.
The very best of luck with tomorrow
One thing I forgot - if you can, take someone with you. It's difficult sometimes to take it all in when you're involved, and if someone else is there, they tend to remember more details. Then, after, you can say "did he say this ....?" and they can help.
Don't forget your BCN will also give advice if you want to ask more questions later.
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