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SURGERY SEPTEMBER 2018

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Re: SURGERY SEPTEMBER 2018

Hi Helenann,

 

I'm so sorry to hear about your Dexa scan result and hot flushes. I know it's easier said than done but try and keep it all in perspective-the osteoporosis is treatable and the hot flushes will hopefully diminish, and in the meantime it's important that we all find ways of managing them....I go to sleep with a t-shirt on and by 3AM I've whipped it off, as well as my duvetSmiley Happy. I have a ceiling fan & an air purifier blowing in my bedroom and they do help very much with the warmth. I've always been hot when I sleep so it's hard to know whether it's a flush or whether it's just me. During the Summer heat wave (and before Letrozole) I used to sleep with an icepack wrapped in a face cloth...it really helped. I put the icepack between my knees, or sometimes on my tummy...it really kept me cool. It may be worth a try (but do place it in a face cloth or thin towel-not directly on your skin).

 

All this to say-I empathise with you, but at the same time, we need to keep these other issues in perspective. You've had the cancer removed-yay! That's a really BIG yay! Smiley Happy. And you've got a nice new boob (in progress)Smiley Happy. Keep reminding yourself of what you have to celebrate...I know it's hard...especially when you're sleep deprived.  

 

Sending lots of love...

xxxx

Member

Re: SURGERY SEPTEMBER 2018

Just thought I'd post a quick update - went for my final fill of my Tissue expander today - so the next step will be in 3 months when I'll be discussing the exchange to a permanent silicon implant and subsequent treatment re nipple reconstruction and 'work' on my 'good' side to make me more symetrical (hopefully).

The results of my DEXA scan had been received and low and behold I have Osteoporosis! I can't believe it - what else can go wrong?😪

I now have to take a bisphosphonate - alendronate, as well as the Letrozole and Adcal - feel like I'll be rattling at this rate.💊

The Letrozole wasn't too bad at first but now 4 weeks on I'm getting hot flushes of a night - so not sleeping too good and am very achey all over.

Sometimes wonder when's its all going to end.😓

Member

Re: SURGERY SEPTEMBER 2018

Thanks Helenann-we have indeed been together from the start Heart& I hear you loud and clear. I, too, was told what needed to happen and at the time the message was conveyed to me, it did *not* sound like there was an alternative....it was all said very much "in small print" if you like (oh, by the way...we can start with Letrozole and then see). The message that I got was "you need surgery *but* if you start on Letrozole, there is no hurry for surgery". As I elaborated on a different thread, I just decided to plan for surgery to get it over with but in hindsight I wish one of my medical team had slowed me down rather than me having to slow myself downSmiley Happy

 

We have all learned so much about breast cancer since diagnosis, and this forum has also helped us all to understand that there are different types, different grades/stages and a variety of treatments that we don't all get in the same order/sequence. Yet it is so comforting to know that others "get" us and are supportive of our individual and personal decisions. 

 

Chocxie: I, too, relate to the "hello, it's me who has breast cancer". I have little tolerance at the moment, for friends and family who feel compelled to dump all their stuff on me any time we speak. I wish more people understood that a friend telling you about ther breast cancer is not an invitation for you to tell them how crap things are for you too. And in turn, it causes us to "shut down"-when a person has an illness like depression or breast cancer, they genuinely have little left in their reserve of energy....I have some friends who text to ask how I am and within a message or two dump all their crap on me (and I mean....not just "I'm feeling low today") but the in's and out's of their situation. I *want* to say "I can't handle any more right now" but how do you say this without sounding like a complete b-tch? I have a friend who has been going through a dififcult time for over 3-4 years and I have listened to her for hours on end, on the phone. Since my diagnosis I had been avoiding her (and didn't tell her about my BC at the beginning) because I just couldn't cope with her stuff as well as mine. She has been messaging me more now that she knows about mine and I just know that if I ask "how are you" it will open up pandora's box again. It was genuinely 90/10 as to who was dumping and who was listening....me the 10%! I wish more people would just use their common sense-when you have a friend with depression, *or* breast cancer, understand that their reserve for listening and soaking up all *your* stuff is limited, and will be, for some time. 

xxx 

 

 

Member

Re: SURGERY SEPTEMBER 2018

Helenann

Your comment: When I told family and friends of my diagnosis I was quick to add 'but its been caught early, its treatable and I'm going to be fine' - when I didn't know at that stage whether I would be fine.

Oh yes, this was me, word for word! Also, consoling some relatives when they burst into tears and even reassuring one that her upcoming mammogram would be fine!! Hello, it's me that's I'll, not you 😂
I wish I'd had the nerve to say that !!
Member

Re: SURGERY SEPTEMBER 2018

Hi Chocxie- thats brilliant news for you - also a bit worrying to think if they hadn't done the Oncotype DX test you might have been started on chemo as matter of course - and you now know this would have a detrimental effect on you. Good luck on the trial you're doing - it must be 'good; to feel you're helping the way forward for other's in the future. That book sounds interesting - might see about getting a copy myself.👍.I hope you're feeling a bit better emotionally today - I am - but who know's how I'll feel tomorrow - I'm all over the place at the moment. My husband has been great - he tells me not to 'bottle things up' and I should let him know what I'm feeling - but I'm so used to be the one who doesn't usually crumble and at 62 years of age (a young 62 i might add😉) i'm not likley to be able change the way I am. I just might consider professional counselling at some time in the future if things don't get better- I might be more able to open up to a 'stranger' .

 

Kateday - I'm so sorry you're feeling so rough - can you mention how bad it's made you feel at your next appointment and they might be able to do 'something' for you? Isn't it mad the way it's come out that we've all been putting a brave face on things for our friends and family's sake. When I told family and friends of my diagnosis I was quick to add 'but its been caught early, its treatable and I'm going to be fine' - when I didn't know at that stage whether I would be fine. 

 

JacqB - give up wine??? Is that even 'a thing'.🤣😂🤣. Not a chance.

 

Marla - we've been 'together' from the start - I think we were originally on much the same path but then we went our different routes. I think your story is inspiring because you didn't just go along with what was being suggested by your team. You questioned things and looked into things and made informed choices for what was in your best interest (with the blessing of your medical 'team'). Dont worry that you feel you might have got me wondering if i should have done things differently - my case was different to yours (it was in different parts of the breast and some IDC as well as DCIS), so I'm 100% sure I would have opted for the mastectomy in any event.

It's just that when I look back to those early days I think I was in a blind panic about having breast cancer - although it was seeming like I was calm and collected about the whole thing - I was like a duck seeming to be gliding along the water effortlessly when in reality they're paddling like hell underneath. I can remember being told what needed to happen and I just nodded and said 'sounds like a plan' - I just feel now maybe I should have taken a step back to think things through - as I say, though, it was always going to be a mastectomy for me.

Great idea about yourPh.D by the way - and if you need any input on the topic we're all here.

 

Alex - if you're reading this drop a little post to update us on how you're doing - we miss you💖

 

 

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Re: SURGERY SEPTEMBER 2018

Hi Chocxie,

 

A huge congratulations on your low oncotype Dx score. That's such a relief that you won't need chemo-one less thing to worry about. I"m really pleased for you, and also pleased to hear you're part of a trial-I think that trial participants are usually well looked after which is always good news!

xxxxx

Member

Re: SURGERY SEPTEMBER 2018

Hi All
Thank you so much for the well wishes for my appointment. So, I am back and, overall, it went really well.

My oncologist is lovely and she went through my Oncotype DX test with me. It was very interesting, it was good to receive a phone call saying your score was low, so you don't need chemo (not that I didnt jump for you at the time), but it's eye opening to have the results explained to you in detail. My score came out at as low level risk of recurrence, but the more amazing thing is that, when plotted against average recurrence levels after chemotherapy this showed that, in my case, having chemo could have had a detrimental effect and actually increased my likelihood of recurrence. I found this mind blowing, especially as this test has only been available on the NHS for 5 years and the most recent research was only this year.

All this gave me great confidence in my decision to join the current medical trial I've been asked to participate in, so I have signed up and now wait a few days to find out the result of randomisation. This is related to treatment to the axillar, as I have minimal involvement in just one node with a further two clear.

A lot of what my oncologist told me I already knew, from reading the fantastic book 'The Complete Guide to Breast Cancer' by Prof Trisha Greenhalgh and Dr Liz O'Riordan, which was published in September and written by a breast surgeon and a GP who have both been through treatment themselves. We chatted about the book, which my oncologist had not heard about, and she's going to read it too - result 😊

I spoke to my BCN about how I'm feeling and she seemed quite concerned, but she said it is very common to feel this way at this stage. I'm going to have a longer chat with her on Friday, but she made me feel better (as she always does). There is even counselling available, apparently, but I don't think I'll be needing that, just need to learn to talk about how I'm feeling, I suppose.

Anyway, that's enough from me for now. I hope everyone's having a good day, even if the weather is miserable.

Ooh, has anyone heard from Alex recently? Is she okay? If you're there lovely, please post and let us know.

Xx
Member

Re: SURGERY SEPTEMBER 2018

I would go hunting for the stop button
But I’m currently in bed feeling bloody rough as a badgers bottom
I can’t figuirw if it’s the chemo or the flu jab or just a bit of everything

I also have to agree with the always being the strong one and I still find myself telling people I’m doing ok when I’m reality I’m not
I’m not sure if we do this for our friends and family or a lotttle for our selfs
It would be interesting to see just how many of us are like this
From reading these posts we’re all pretty much the same mindset on the outside
Xx
Member

Re: SURGERY SEPTEMBER 2018

Thanks very much JacqB! I feel a bit of an intruder but hey! It's often the only way to keep abreast (love the pun)? of fellow warriors. 

 

Incidentally, Helenann-re-your last post on how you have always been the strong one and are struggling to be there for others right now...I feel the exact same as you...unable to be there for people at the moment in the way I used to be able to. I have found that as soon as you tell someone (a non BC person) your diagnosis or that you're having a bad day-they take that as a cue to tell you about their own issues or their family member's issues). I would love to explain to them that sometimes, "all we want is to be able to talk to you, and have you listen-this is not a competition as to who's life sucks more at the moment"! 

 

All this to say that I've been wanting to do a Ph.D for years and when I am finally ready to slow down work and go back into academia the idea of exploring whether being a martyr contributes to breast cancer came to mind. I am a martyr in my own family and I have no doubt that putting my own needs on the backburner has lead to some of this illness. I am *sure* there are personality factors that contribute to BC, which made me think "oh good Ph.D topic"....I just thought I'd share this with you because I completely get the fact that you've always been the strong one, and from what I've read from others' postings on here, this is a very common trait in BC women. We are warriors. End of. However, this is now a good opportunity to re-think your attitude towards asking for help, and allowing yourself to be more vulnerable and to rely on others a tiny bit more than you have in the past. It's so difficult but I think so important to do. 

xxxx 

Member

Re: SURGERY SEPTEMBER 2018

Hi Helenann, I agree with Chocxie-a little wine won't hurt you and I'm sure helps you maintain some sense of normality, if that is what you used to enjoy before your BC diagnosis.

 

I really appreciate your kind words but the last thing I would want for you is to be wishing you had done things or thought about things differently. We are all different, and unlike you, I don't have any support (in the UK)-no family at least and perhaps had I had more emotional support/family here, I might have made a different decision. So many factors contribute to how ready we are for the surgery, for chemo, and even for popping a little pill (so many women feel towards the Letrozole, the way I felt towards the surgery). From having followed your journey from the get-go I am confident (as confident as one can be) that you made the right choice for *you*, so please don't look back. You have so much to look forward to now and as you say, your breast is now "bugger"-freeSmiley Happy.

 

Sending lots of love....

xxx  

 

Member

Re: SURGERY SEPTEMBER 2018

@Chocxsie - thinking of you today, hope oncology appointment goes well. 🤞
@kateday- if you do find that stop button,please let me know where it is!
@helenann - isn’t wine a wonder? I enjoyed a large glass of Merlot last night and it was utterly delicious. I know people who have given up wine because of BC but that would be a step too far for me. 🍷
Hi Marla13 - welcome to the September thread, it’s good to have you here. 🤗
@mrslet, @ pastastmissus and @xela - how are you ladies? Hope all is as ok as can be for you.
September seems a long time ago now that we are on the countdown to Christmas here’s to staying well and staying strong 💪💗🥊
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Re: SURGERY SEPTEMBER 2018

Hi All - this is what makes this forum so fantastic - you can be feeling horrible/low and post here and within minutes there's somebody there giving you comfortaing words and making you feel so much better.

 

Chocxie - thanks for 'understanding' and sharing that you're feeling emotional at this stage in things as well.

I think i've probably been my own worst enemy by putting this 'strong' front on, but I've always been the strong one, the one people come to for help etc and I've tried to remain that person for as long as possible - but I'm at the point where I'm struggling dealing with my own 'issues' and i'm not able to cope with others problems and I hate it. You're so right, we both need to take a step back and start thinking of ourselves.

I'm wishing you loads of luck for tomorrow - make sure you let us know how you get on.🍀🍀🍀

 

Marla13 - you don't need to be a September surgery to post on this thread, please continue to follow us all - you're still on your journey and we'll all want to know how you're getting on.

I really admire you so much - you were brave enough to question what was being suggested and to examine your own feelings and instincts. I have to say after reading some of your posts I have wondered if I should have queried about what i was being told, but I didn't and now I have to get on with things as they are and I must admit I was glad to glad to get rid of the bugger out of my breast asap - so no regrets really.

Keep us posted on how you're getting on.💖

 

Feel a lot better now - a couple of glasses of sauvignon blanc have helped as well.🥂

Member

Re: SURGERY SEPTEMBER 2018

Hi Helenann,

 

I'm not a "legit" September Surgery friend Smiley Happy but since I know you from one of your very first threads I wanted to respond! I completely get how you feel re-being on automatic pilot and feeling like it's all just coming together and finally hitting home. That makes complete sense. I honestly think that the very nature of breast cancer forces women to kick into auto-pilot mode (and attend appointments, surgery, scans, biopsies, etc) and expects us to deal with the emotional component later on. I liken it to a PTSD response. Now that things are slowing down for you treatment wise, i.e., almost at the end of your implant "fills", you've got more time to think about the events of the last several months. Appointments are (thankfully) less frequent but the downside is that the emotional stuff is now finally hitting home. 

 

Thank goodness you don't need chemo, but please don't feel bad for feeling bad. This process is an emotional rollercoaster ride, whatever train you're on (the chemo train, surgery train) etc. 

 

The reality is that friends and family probably do assume you're doing so well because you've had to, and on the surface you have appeared to be coping. Nobody other than other BC women actually know just how sad, vulnerable, angry, upset, you feel. I truly believe that unless you're going through it, you can't possibly understand. I don't think my own friends and family understand either. 

 

So allow yourself to cry, to feel low, and any other feelings that come...they're coming to the surface because things have finally (and thankfully) slowed down...let them be there...and know that there are lots of women on this forum who are here for you.

xxxxx

Member

Re: SURGERY SEPTEMBER 2018

Hi Helen,
I totally understand how you are feeling, because I am feeling exactly the same way. I keep bursting into tears - the tiniest thing can set me off; the lyrics of a song, a gesture on a tv show, a lady who smiled at me in the street!

I think, like you, I've held it all in, been strong for everyone else, taken it in my stride, bounced back quickly, been told on numerous occasions how well I'm looking, but emotionally it's all just hitting me.

I know I have an important appointment tomorrow, but I think it's a lot more than that. I think we both need to take time for ourselves before we get back to normal, whatever that is 😊

Look after yourself and take it slowly and I promise to do the same too.

Love, Chocxie x
Member

Re: SURGERY SEPTEMBER 2018

Hi September friends - I'm now 6 weeks post surgery. Still going weekly to have my tissue expander filled - thought it was the last one last week but when I seen the consultant today she thinks it needed 2 more fills. Will have about 525 mils in it when finished (don't know if this means anything to anyone - I don't know if thats usual or a lot - anyway its what she thinks is required so will go along with it).

Been a bit up and down emotionally for some reason this last week or so- feel like I've been on autopilot since my diagnosis in August and everyone tells me how great i've been dealing with the diagnosis etc- which I have been - taking every appoitnment, scan , biopsy, diagnosis and surgery 'in my stride' and suddenly I feel like someone's turned the autopilot switch off and I'm on manual - and the enormity of what's happened is only really just hitting home now.😪

I know I'm lucky - I don't have to have chemo - so I need to have a good talk to myself and pull myself together.

Sorry for 'moaning' when there's quite of few having to face chemo. Sending lots of love to you all.

Love, Helen. xxx

Member

Re: SURGERY SEPTEMBER 2018

Hi JacqB, poor you, I hope it all clears up for you soon.

I'm 6 weeks post mx and SNLB, and I have oncology tomorrow.

Take care, C x

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Re: SURGERY SEPTEMBER 2018

Hi Jacqb

You must be at your wits end woth it all now
It seems such a long time ago we all started having our surgery’s
Not that my friends or family see it that way they think it’s been really quick
I’m on the chemo train now and would like to get off but there doesn’t seem to be a stop button
Hope all you other ladies are holding up well xx
Member

Re: SURGERY SEPTEMBER 2018

Hi all
Nine weeks post surgery and still not fully healed from the lymph node clearance. Ironically the scar on my weird square boob is perfect! If only my surgeon had bothered to make it boob shaped I’d be laughing! 😠
I still have a hole in the axillary scar and it’s leaking quite a bit, I’m so frustrated that apparently nothing can be done to hurry things along. I’m not a patient person and it’s driving me insane!
On a positive note the seroma is gone, the cording has resolved with exercise and I have full movement back in my arm and shoulder.
Things have gone a bit quiet here and I hope that’s because you are all feeling absolutely fabulous!
😊💪💕
Member

Re: SURGERY SEPTEMBER 2018

Thanks so much Chocxie....I hope you have a lovely week-end.

xxxx

Member

Re: SURGERY SEPTEMBER 2018

Thanks very much Helenann...I left there at 5:50PM and just arrived home-stopped off for groceriesSmiley Happy.

 

It's funny because I thought I was going there to tell *her* that I want to defer but she put it to me that she is telling *me* to defer (it sometimes seems that they (the authority figuresSmiley Happy want to be the ones calling the shots. That's absolutely fine with me, as long as we're on the same page. I just thought it was funny because it came across as though she thought she was advising me, when really I was there to say "I really don't want to go through with it". Anyways, I felt very supported today. She wants to see me in 3 weeks to examine me and then an MRI in 3 months to assess how the Letrozole is working. Unfortunately, the ultrasound scan is not allowing them to size my cancer because of it's lobular nature (it's scattered about as opposed to being one defined lump). 

 

I hope you have a lovely w/end and thanks for checking up on meSmiley Happy.

xxxx