62218members
327548posts
cancel
Showing results for 
Search instead for 
Did you mean: 

June 2018 Chemo Starters

Kip Community Champion
Community Champion

Re: @SallyG63 Couldn't have put it more perfectly.

OMG whats happened?   I can't find anything on here?

 

Member

@SallyG63 Couldn't have put it more perfectly.

@SallyG63 Couldn't have put it more perfectly.
Community Champion

Sally - that really made me laugh - it's a bit loud isn't...

Sally - that really made me laugh - it's a bit loud isn't it !
Member

Re: June 2018 Chemo Starters

Jesus, the forum looks like someone vomited trifle all over it. Not a good look at all.
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Thanks Reddi, yes hopefully I can keep on top of it and stop it getting worse.  I am going to look up the sleeves which look like tattoo sleeves... might be fun!!!

Hi CDC - glad you are home!!

 

Kip

xx

Member

Re: June 2018 Chemo Starters

@Kip My sister has been bugging me to get some sleeves for transatlantic long-haul fligjts, and now I feel inspired. I hope you've caught it so early that the sleeve is all you ever need.
Member

Re: June 2018 Chemo Starters

@cdc Welcome home! 🏠 💤 💕
Member

Re: June 2018 Chemo Starters

Well it’s been somewhat of a marathon and I still have a long road to recovery but so glad to be home and getting cosy on our new electric recliner. Huge thanks to everyone for the good wishes. Sorry for not replying to everyone personally but I’m just exhausted. Will catch up when I’m feeling more with it xxx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Ladies,

Firstly, CDC glad you are back on the ward and that it is in pleasant surroundings, always helps to recouperate when its nice to be there.  

Thanks for all the info regarding bras and fittings etc, will come in useful for me when I get round to getting a prosthetic too.

Just been to lymphodema clinic.. thankfully cording has sorted itself out pretty much but I have some slight lymphodema to my arm, they did measurements manually and then with some kind of instrument which measures liquid or something.. so now sporting the lovely arm compression sleeve.  Don't have to wear it all the time though, just when exercising or walking or doing gardening and housework.. anything strenuous really.  She wants to ensure that it doesn't get worse so its taking steps early.   Have to go back on 3 months for a review.  Actually got a bit teary when I left, as it always seems I come away with something else when I go to hopsital.. but in the scheme of things... whats a sleeve hey! 

Kip

xx

Member

Re: June 2018 Chemo Starters

@SallyG63 Seeing the list on Jill's link reminded me that my first BCN suggested Silima bras to me. There was one in particular she'd recommended -- the Anna -- knowing that I was trying to avoid the look and fit of typical full-cup bras. The side panels/strap of the Anna might still be cut too high for you, though, and it looks like a synthetic fabric rather than cotton. 

 

I'd also bookmarked a few on the Royce site: Supreme Comfort and Maisie. Neither is high cotton content, but from looking again it seems the lining/pockets are cotton.

 

Community Champion

Re: June 2018 Chemo Starters

Good luck - hope you find something comfortable .

Community Champion

Re: June 2018 Chemo Starters

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Sally ❤️❤️Have you got a local Macmillan centre who you could speak to about finding a suitable bra and also the someone like me on here, I’m also going to see if any of the cc’s have any suppliers they could recommend for you too 😘😘💕💕✨✨✨Shi xx
Member

Re: June 2018 Chemo Starters

Wow You look stunning Red Rose! Love the detail especially the back. I’m finally on the ward now my BP has stabilised. Team seem to think that finishing chemo fairly recently has caused it to dip. This ward is sooooo beautiful! The family of a former patient paid for all the renovations a couple of years ago so I feel like I’m in a lovely hotel with 24/7 service. Really need some rest so will catch up properly once I’m home xxx
Member

Re: June 2018 Chemo Starters

Bum, my post from earlier got lost. I did say the dress is a must to give those at the back something nice to look at Smiley Happy

Re the prosthesis fitting and bras we have nothing at my hospital. One BCN working out of a room not much bigger than a cupboard measuring herself and dishing out from the limited stock she has. No free bra or even anything to try. After my surgeries I've been left with a concave chest so nothing to hold a bra down which is why everything rides up. I also have loads of scarring and lumps and bumps near my arm pit so anything not really low cut at the sides rubs and hurts. If I'd have known then how affected I'd be I'd have told them not to do that surgery and taken my chances with chemo and radiotherapy killing the cancer in the nodes.
Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Red rose 👍👍👍👍stunning, so beautifully elegant, you’ve no rum to be worried about at all. You enjoy trying in lots and lots but I think you’ve a major contender right there ❤️❤️💕💕💕✨✨✨Shi xx
Member

Re: June 2018 Chemo Starters

Well I wasn’t expecting that, A picture of a beautiful bride! The dress is lovely Redrose and I agree with what has been said by Reddi and Kip. You look grorgeous, I hope your day is all you dreamt of! X
Member

Re: June 2018 Chemo Starters

@RedRose -- Kip took the words out of my mouth. If this ends up being *The Dress*: Gorgeous. And if another dress usurps its position as fave: Gorgeous(er). 💎

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

OMG RedRose.. you bought a tear to my eye... you look beautiful.  Love the dress and the beautiful back..  You were amazing to be out there trying on dresses 2 days post chemo.... love it.. .and no big tummy!!!  more updates please!!

Member

Re: June 2018 Chemo Starters

Morning ladies. For those of you requesting a wedding dress update, this is the favorite so far. Will be looking at others in the next couple of weeks but I do love the back on this one. Just not sure on wether it makes my tummy look big. Have to bare in mind thought that this dress was tried on 2 days after my last chemo session  xx

Member

Re: June 2018 Chemo Starters

BAD0C495-2782-4177-9BE9-1B6B1FBC215F.jpeg

Member

Re: June 2018 Chemo Starters

C0A94FB6-C557-45BF-AF1A-B469E19A155C.jpeg

Member

Re: June 2018 Chemo Starters

Sally ... Just wanted to pop on and say great news you’re getting your prosthetic.... about time. I sent for a couple of NJ bras but sent them back as I wanted more cotton content... the fit was ok though. I’ve not tried Amoena yet but will be targeting cotton rich ones to try. I would really like seeing them in a shop.... would think there would be a shop/outlet in the London area. I did keep the Asda bras I sent for and they are ok after washing but they are lacey and I would prefer none but they aren’t irritating. I was given a bra from Womanzone with my foob which I was thankful for. Someone did mention m&s do a cotton zip front bra but I’ve yet to get in and eyeball it ... ive looked at it online ... only in white though. Might be worth a try. As you’re super lucky at the mo that bra could be the one ... Reddi ... pleased you’re getting sorted for rads. Hope your recovery is going well. Xx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Morning ladies,

Reddi - shame you can't join the Add Aspirin trial, I have been asked but am waiting for a call to go ahead with it.   I have all the paperwork to read up on and think its worth a shot, nothing to scary about Aspirin I don't think.  Good news about Rads though, get that over and done with too.

SallyG - Wow you really are on a roll with the competitions aren't you.. .hope you do the lottery!   Also good news about the prosthetic finally available, I still haven't contacting them about one for me, I am waiting for sign off from Rads then I will do it, although my Knitted Knockers are perfect for me.   When you tried one, did you put it in the pocket of a bra?  Mine don't move at all but maybe thats because I've found a bra which fits and is comfortable, probably makes all the difference.  I have bras from George @ Asda but I think I remember you didn't get on with those?   I think I am lucky too that my scar is just one line running across to the start of my armpit and its quite flat and not sore or anything, nothing to rub on really.   They reopened the end of the MX scar to do the ANC and he did a good job, you'd never know its been open twice!  

 

The Zoladex needle sounds grim... you would be very brave to attempt to do that yourself.. I had to pysche myself up each time for the chemo ones and they were diddy.   Good news that the docs can do it though, saves a lot of travel time and I'm sure you'll get used to them.

 

Kip

xx

 

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi sally, sorry Nicola Jane haven’t got anything you like the look of. When you go for your fitting does your team have specialist fitter my unit did and they also had underwear to try on with it, you might be able to purchase in your unit if they do or ask them if the can recommend anywhere else. You will find what you are looking for and i’ll Keep eyes peeled too if I find anywhere else too that might help you. Well done winning another competition 👍👍reddi I think she should enter another one too, that big one on GMT’s they are currently running 👍👍💕💕✨✨✨Shi xx
Member

Re: June 2018 Chemo Starters

@SallyG63: You should enter a bunch more contests asap -- you've clearly got some good luck hovering 'round you right now! 

Member

Re: June 2018 Chemo Starters

Thanks, @SallyG63! When my oncologist asked me if I preferred any particular day of the week for the Zometa appointment, I'd asked her if there were any immediate side effects like achey legs, etc., and she mentioned the fluey symptoms / aches, so I opted for Mondays. (Since I'm freelance, I can work around this every 6 months, but I'm also a keen walker, and really want to be able to go out on the weekends, especially right now, so that I can get rid of my chemo weight gain!) She didn't mention taking paracetamol, but that totally make sense -- so huge thank you to you and the woman you met at Guys!

 

Most of all, congrats on finally getting the prothesis! I'll keep an eye out for other promising post-treatment bra options.

Member

Re: June 2018 Chemo Starters

I'm so fussy though ShI. I can't find anything. I've lookied on the Nicola Jane website and don't really like the look of much at all and those I do look too high cut right where I have extensive scarring. I do have a knitted knocker but everything rides up and moves and I'm forever having to adjust my underwear.

In good news though I've won another competition, this time on FB for a nice poreclaim dinner service. That's 2 things in just over a week.
Shi Community Champion
Community Champion

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

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

Re: June 2018 Chemo Starters

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 Community Champion
Community Champion

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

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
Member

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

Member

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
Member

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 Community Champion
Community Champion

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

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 Community Champion
Community Champion

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
Member

Re: June 2018 Chemo Starters

@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 Community Champion
Community Champion

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

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

Member

Re: June 2018 Chemo Starters

Great news Reddi 👍

Kip Community Champion
Community Champion

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

Member

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 Community Champion
Community Champion

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

Re: June 2018 Chemo Starters

Reddi ❤️❤️❤️Wonderful news darling 👍👍👍so pleased for you, thank you for updating us 😘😘😘💕💕💕✨✨✨Shi xx
Member

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.)

Member

Re: June 2018 Chemo Starters

Great news Reddi x
Member

Re: June 2018 Chemo Starters

That is good news Reddi and I’m glad you can now move forward with rads planning xxx