16-01-2019 09:15 PM
16-01-2019 06:55 PM
16-01-2019 06:33 PM - edited 16-01-2019 06:40 PM
Consented to radiotherapy today, but won't get tattoos or CT until next week or beginning of the week of 28th January.
However, I unexpectedly started endocrine therapy today! Had my first Zoladex injection to put me into menopause -- and I am getting Zoladex and not tamoxifen because of my history of pulmonary embolism. I'd thought I might ask if I could be trained to give myself the injection, rather than having to go to have it done every 28 days (+/- 2 days), but *wow* it's a big needle -- 16-gauge (about 1/16th of an inch in diameter) and having now read the instructions, I don't think I'd be able to do it, even with all my GCSF training. Thankfully, I can get my GP to administer them going forward, rather than visiting the hospital every 4 weeks for the next few years.
Aromatase inhibitor (exemestane/Aromasin) tablets to start with my 2nd Zoladex injection, when I should officially be menopausal. Bisphosphonate infusion no. 1 will be in February, to protect from osteoporosis caused by draining me of all my estrogen. I suspect my thick buzz of hair will be affected, too, @SallyG63 -- it's going to be quite the change in biochemistry.
Apparently, a small percentage of women develop eye problems from taking tamoxifen or AIs, which, given my eye problems during chemo, is yet another thing to monitor.
Sadly, no Add-Aspirin trial for me: I was told I can't participate as they won't accept folks with bilaterial breast cancer (too many variables). I was thinking of just taking low-dose aspirin on my own, but it's a weak aromatase inhibitor, and so I should check with the oncologists first.
@Kip, am I right in remembering that you're part of the Add-Aspirin trial? Or are you still deciding?
16-01-2019 09:28 AM
15-01-2019 09:35 PM
Funny you were both talking about that article by Dr Peter Harvey, I'd just printed it off! It made me cry the first time I read it as I thought he's hit the nail on the head, that's exactly how I feel! I've given my ED a copy to read to hopefully get a bit of a better understanding of how I still feel sometimes xx
15-01-2019 11:22 AM
14-01-2019 04:40 PM
p.s. The book @Michelle21 mentioned, Mindfulness: A Practical Guide to Finding Peace in a Frantic World, is really good. I read it years ago for work, and should dig up my copy.
14-01-2019 02:14 PM
@Kip I get notifications for the May 2018 surgery thread (maybe I asked to, way back when, since so many of your stories started there), and saw you were thinking about mindfulness resources. If you prefer longform reading or listening, there are the classic books by Jon Kabat-Zinn, all of which are available in audio editions. When I got diagnosed, I bought a copy of his Full Catastrophe Living, which is specifically about his mindfulness programme for those dealing with illness and/or pain, and the stressors and anxiety that come along for the ride. It can get pretty heavy, though.
A lot of the newer resources on mindfulness are indeed in the app space -- and they can be great in coaching you through a deep breathing or mini meditation session or whatever else, even timing you so that you aren't looking at the clock the whole time, which kinda defeats the purpose. I asked for app recommendations from some folks who are committed mindfulness practitioners and found that most of the apps were on this "best of 2018" list. (There may now be a 2019 version of the list.) I ended up trying the 10% Happier app, since I love the concept of mindfulness but tend to want to hear about the science that backs up what I'm doing and don't go for woo-woo stuff. In the end, I discovered that apps aren't a fit for me when it comes to mindfulness practice -- not because of the quality of the app, but because my phone is at least a 30% Stressier device, given the various work emails that show up on it! But I got some good breathing tips that, alongside some tactics I've gained from the counsellor I've been seeing, have helped with the anxiety and other emotions of treatment and (the beginnings of) recovery -- even (somewhat) with my impatience.
14-01-2019 01:16 PM
14-01-2019 01:07 PM - edited 14-01-2019 01:09 PM
@Kip I'm seeing the oncologists this Wed (16 Jan). This was rescheduled from 2 Jan, when it conflicted with my 3-monthly heart scan (re: Herceptin). I'm thinking it will now be radiotherapy consent and maybe planning, too. I know I need a CT scan, tattoos, gating technique and position training... Feels like a lot to get done before I actually hit the sunbed.
Did you start endocrine therapy before / alongside RT, or after? I'm slightly worried about bigger effects on mood and potential for increase in hot flushes, versus chemo-induced menopause (which hasn't abated yet; like my eyebrows, my ovaries are in hiding). I've probably been reading too much on the Moving Forward forum. Perhaps better to wait and see what happens, eh?
Regardless, I think the most difficult thing is teasing out what are lingering SE of chemo and what are SE of the new procedures and treatments. Plus, I'm impatient. (See: reading Moving Foward forums, when I haven't even yet had RT planning.)
@Linda Thanks for that reminder -- bookmarking the link to the PDF.
@RedRose Another interested in a dress update, when you have one. 💐
14-01-2019 11:55 AM
Oh I think I read that Linda, I must read it again, it was very good.
Reddi - have you had your planning for RT or is it this week?
How is everyone else doing? I'm still aching, tried to call Onc Nurse for some reassurance. am thinking all sorts and need calming down I think but she's on holiday so will have to try to calm myself until next week. Having read loads of chats on this site many women suffer all sorts of things post chemo and during tamoxifen and other hormone stuff. the SEs never seem to stop they just change to something else... ho hum...be positive be postive be positve.
RedRose - found that dress yet?
KTK - how are you doing?
13-01-2019 11:27 AM
Just remembered an article called After the treatment finishes what then? By Dr Peter Harvey that I read and thought good so will read again when my treatment ends on Wednesday!x
10-01-2019 12:26 PM
Hi RedRose.. lovely to hear from you. Yes a Mrs this year.. how exciting.. and in a strange way even more special because of all you two have been through this last year. I know how you feel about not feeling like you, I feel like that. I actually dreamt last night that my hair was shoulder length again and everybody was saying "oh you look like your old self again" and when I woke up and realised it was a dream it was quite upsetting for a while. I'm sure you'll find a dress that is just what you want, it may be that it isn't what the old you may have wanted but it will be gorgeous and you'll know when you find it. I am finding I need to change what I wear now, just to take into account the Judi Dench hair cut and being so grey. I need to wear brighter colours and bigger earrings.. think Pat Butcher and you'll get the picture!
Sorry to hear you've lost your nails, mine have all broken very low now so hoping once the re-grow they will look a bit more human. You should find your eyelashes grow quite quickly now, mine were short and stubby for a bit and then suddently I could use mascara again... fab! Shame to hear you are aching too, I hope they go eventually, I still ache everywhere and feel 100 sometimes.
10-01-2019 11:05 AM
10-01-2019 09:34 AM
Thats brilliant Reddi! And top marks to your surgeon for using her initiative and taking that little bit more to save you another op.. i don't think anybody would complain about having that done. As so on to Rads, the last leg of the journey.
09-01-2019 08:02 PM
Oh, I should mention: the main reason I don't need re-excision is that my surgeon decided in theatre to take more tissue than she'd taken originally on the left WLE. What good instincts. If she hadn't done so, I'd be going back in for another op. I'm so grateful she made that call. It does mean that my left areola now has a little crease/wink where the scar tissue is tugging at it, and we'll see how that scar tissue, in particular, recovers from rads. But my surgeon has been great about talking through the options for "top-up" procedures on the far side of active treatment, should I be interested in them. (Right now, I'm not, and indeed I think I'll be slightly sad when the blue dye from the SLNBs finally fades away. Weird what you get attached to.)