BCNA Online Network
Re: 27 year old lobular carcinoma
I've come into your story late. I've needed to hibernate for a few months to deal with my own issues, and am now just gradually coming back, and that feels so good to again be among the people who have given me so much support.
What am impressive young woman you are. I'm 76 (diagnosed at 74) and I've always said I was grateful that, if this had to happen to me, it didn't happen when I was young or in my middle-aged full-on career mode. You are an inspiration, the way you're handling your situation; and I get the feeling it's not just because of your clinical knowledge: it's just you and your own extraordinary spirit and intelligence.
My oncologist stopped my chemo after 8 of the 12 weeks of Taxol because of peripheral neuropathy. She said it could end up being permanent and advised me to opt for quality of life. I'm glad about that. A friend did the whole course and she still has dreadful PN nearly five years on. It took some time for it to fade for me, but it did.
Not being "sure how to feel" is the way it goes for us all. I have ups and downs sometimes from one minute to the next, one day, one week, etc.
Re: Black nail polish for chemo
I used black nail polish all through chemo and beyond. I didn't lose any nails, but they thickened and got ridges. 10 months after the end of chemo, my fingernails are only VERY slowly becoming less thick and uncomfortable, and are no longer flaky. A few of my toenails lifted, including the two big toes. They are still a problem, because wearing closed shoes (now that the weather is cooler) puts pressure on them and I've ended up with both big toes bruised black under the nail from the pressure.
It seems there's no clinical evidence to support wearing of dark nail polish, but I figured if anything MIGHT help ... besides which, the loveliest thing was that my daughter and a couple of friends here, plus two friends in France, wore black nail polish all through my chemo in solidarity with me!
Re: 27 year old lobular carcinoma
, it really changes your perspective, being on the other side of the fence. It's made me so aware of my responsibilities as a health care consumer, and my rights. It's also strengthened my belief in the need to be my own advocate
All things I thought I had a handle on before, but........ no
Re: still in shock
The speed things often move at with breast cancer whilst reassuring in some ways (and necessary) leaves us reeling in shock. Five weeks ago your life was “normal”, you probably have barely had time to think, now your brain is catching up and it’s no wonder it’s protesting. Be kind to yourself, there is no such thing as an invalid feeling xx
Re: Heartbroken, but unbroken
. When you see the oncologist you'll be given lots of info. Ask for the acronym of your wife's chemotherapy regime. It might be AC-T. Once you know, you can use the search bar here to find out more information.
At the stage you guys are at now, it's important to remember that no one gets all the side effects! Most people don't even vomit these days, so good are the meds. Some people even work through chemo.
Once you're through the horror that is diagnosis, it's the not knowing that's most unpleasant. Once there's a treatment plan you start to feel better, and then once treatment is underway you get into a rhythm. Chemo is no parts of fun but it's important to know that while it's grotty, it's doable.
Just a word of caution about the private health system. I went this route, without thinking much in the blur of the diagnosis at the start. I am significantly out of pocket as a result. Especially be careful round radiation therapy. Some people have been known to have five figure bills. You can have a mix of private and public care. Ask ask ask until you're truly clear about the costs and your options.
What part of the country are you? And how old are your kids? I have four. It's a very complex situation here (read my bio) so I've had quite a time of it with them. Trust your instincts, give them age appropriate information, and check in regularly. It's easy to disappear into the diagnosis, become an expert, and forget that kids process slowly and will have questions 'later'. Circle back regularly with a "now do you have any questions about mum?" In the car is a good spot, especially with boys. They don't always like eye contact!
And when chemo starts you'll probably be inundated with food. My kids loved coming home from school to see what treats had been delivered!
The three Cs of cancer treatment when you have kids: communication, cuddles and cake/chocolate!
Please tell your wife from me that I have never felt so loved as when I was going through chemo.
Try not to Dr Google. I know, easier to type than do! Start with the BCNA website if you have questions. They have some excellent fact sheets. Macmillan in the UK is good as well. It's wise to remember that a lot of data on the internet is old, and that Australia (and Finland) have the best survival rates in the world. There's a lot of breast cancer research and so it is relatively fast moving.
That's probably enough for now! Please look after yourself as well as your wife. I had to give my husband a stern talking to along the lines of 'I'm not going through all this treatment to have you drop dead of a stoke '!
One day at a time. The biggest of hugs to you all, K xox
Really well thank you
. It was amazing what she did, I was
impressed. What she did to my feet, neck and shoulders in particular. Back next Monday. K xox
Re: Wise words ....
A friend put this in our entrance hall back in 2010 when we came back from Sydney, following hubby's Stomach Cancer surgery - where he had 3/4 of his stomach removed.
Re: still in shock
Never apologise for feelings. This is happning to you and whilst it can be helpful to acknowledge the positives it doesn't take away the fact that. ..you have a diagnosis of breast cancer. ..and with that comes all the fears, tears and unknowns that go with that.
We all get it.
We are here to support you anyway we can. Kath x
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