Shi Community Champion
Community Champion
Posts: 3,247
Registered: ‎11-10-2017

Re: June 2018 Chemo Starters

Hi sally great news you are getting your prosthesis. M&S do a good range of bras to fit them into (I’m fussy and found perfect ones in here, the staff were excellent and understanding too) also Nicola Jane do good range my cousin who is double mastectomy uses Nicola Jane garments and is very happy with them. If you’ve not already got yourself a knitted knocker it’s worth getting them, I found in the hot summer padding bra out with the stuffing from knitted knocker far more cool and comfortable in the summer and also for walking when we do our long walks. Reddi 😘😘so pleased you’ve consented to rads 👍💕💕✨✨Shi xx
Member
Posts: 686
Registered: ‎03-04-2018

Re: June 2018 Chemo Starters

Hi Reddi.

I have my first Zometa infusion on 7th February. A lady I ran into on train that I met at guys said to take paracetamol before it because you can get shivery fluey symptoms after and paracetamol helps with that. She said she was wiped out for a day or two after her first one cos no-one told her so shed not taken anything beforehand.

My local hospital have finally got in the prosthesis that's been ordered for me because nothing they had in stock was suitable. Got an appointment for that 31/1 so looks like I'll finally (fingers crossed ) get my falsie nearly a year after my mastectomy. All I have to do now is manage to find a bra that I can actually wear it in that's not cut too high or lacy or the wrong material that I can't wear. I had to throw out all my bras from before and now only have the stretchy cropped top types which are unsuitable for the prosthesis because of the weight.

Member
Posts: 330
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

[ Edited ]

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?

 

Kip
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Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Yes thanks Jencat I've printed it too, going to show hubby so that "hopefully" he can understand a bit more.

Member
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Registered: ‎30-03-2018

Re: June 2018 Chemo Starters

Thanks Jencat you’ve just reminded me about this article and so I’ve just read it right through for the first time. What a brilliant piece! He really hits the nail on the head in so many areas. I’m printing it out too, to show to a couple people. I hope you are doing ok x
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Registered: ‎21-06-2017

Re: June 2018 Chemo Starters

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

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Posts: 330
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

@cdc I hope everything went very well yesterday. I know you're in hospital for the next few days and thus will be well looked after -- though I'm sure you will be happy when you are able to get home. Take care! xoxo
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Posts: 330
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

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.

Kip
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Posts: 914
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Ooh thanks Reddi ill do skme research and see what suits...  I mnow whst you mean about phones tho 

Member
Posts: 330
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

@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.

Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Hi Reddi, ahh yes the tattoos will be one of the fun things in store. Actually it was all quite quick, a scan, tattoos and some measuring then had a chat and a tour and all done. Was given my first appt on that day and the full schedule when I had had my first one.
I did start Tamoxifen before rads but only about a couple of weeks, so all in all its not been long really and like you said it's hard to untangle what's doing what. When I think since end of Sept I have finished chemo had ANC surgery and 15 x rads plus starting Tamoxifen so I have to be patient I guess. But like you I want the old body back and want it now
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Posts: 330
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

[ Edited ]

@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. 💐

Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

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?

 

Kip

xx

Member
Posts: 337
Registered: ‎05-05-2018

Re: June 2018 Chemo Starters

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

Highlighted
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Registered: ‎30-03-2018

Re: June 2018 Chemo Starters

Great news Reddi 👍

Kip
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Posts: 914
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

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!  Smiley Wink

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.

Kip

xx

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Posts: 152
Registered: ‎21-06-2018

Re: June 2018 Chemo Starters

Morning ladies, wow what a lot happening since I last logged on. Reddi my daring I’m so pleased that your operation went well, I hoping the recovery goes well for you and isn’t too painful.
Yes Kip, I can finally say I’m getting married 👰🏼 this year! 148 days to go till I’m a Mrs! Wedding planning going ok but dress shopping a bit weird because I don’t look or feel like me. It’s strange because I don’t look like I feel I should look like. But it’s all trial and error and I’m sure I will find one that’s me. On another good note went to watch the amazing step daughter in young voices concert last night, such a lovely night watching all the children sing 🎶. I’m tired this morning though, seems to be a on going thing with waves of tiredness. Update on S/E I’m tired and ache more, all the nails on my hands have come off but seem to be growing quickly, hair now has a reasonable covering all over, one eyebrow growing other not so much and eyelashes slowly coming back. Getting to the point we’re leg 🦵 hair needs a shave 😮. Not one thing I will miss lol. Radiation treatments wasn’t to bad, have a blister under breast and next to SNB scar and am bruised around the edge. Just like extremely bad sun burn but have a dressing from burns department to help it heal quicker. Now I’m concentrating on planning the wedding as no active treatment till after then at least, although I do have meetings planned to discuss genetics lineage and double mastectomy and ovary removal or hysterectomy in the next few months. But nothing will happen just yet it’s just to discuss options as I will be taking a while to think as I don’t have children yet.
So for this year or at least the first 6 months the theme is party 🎉. It’s my 40th in February 😱 so looking forward to that. And the wedding 👰🏼 in June. Happy times! Xx
Kip
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Posts: 914
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

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.

Kip

xx

Shi Community Champion
Community Champion
Posts: 3,247
Registered: ‎11-10-2017

Re: June 2018 Chemo Starters

Reddi ❤️❤️❤️Wonderful news darling 👍👍👍so pleased for you, thank you for updating us 😘😘😘💕💕💕✨✨✨Shi xx
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Posts: 330
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

Thanks, everyone!

 

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.)