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.
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"-free.
Sending lots of love....
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.🥂
I'm not a "legit" September Surgery friend 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.
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
Thanks very much Helenann...I left there at 5:50PM and just arrived home-stopped off for groceries.
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 figures 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 me.
Thats great news, Marla. Well done for sticking to your guns and having the confidence to tell your surgeon how you feel. I think we can sometimes be intimidated by 'people in authority' - so you've done great.
Good luck with the scans - it's been a long old day for you if you're still there now.💖
Thanks very much Chocxie7, and for your well wishes for my mum.
It is exactly that-it's my gut. It's my instinct. It's just a feeling I cannot describe. And the fact that they are telling me I'm OK (I'm safe) provided I'm taking Letrozole allows me to get myself mentally ready for such a big step. I just hope they don't change their tune today. I do realise and appreciate I've left it late to let them know and I feel awful about that but I'm sure it's not uncommon for women in our position to change our minds and have different thoughts and feelings on different days. I'd rather defer and think things through than go ahead with it when I don't really feel ready...you know what I mean?
Thanks for sharing your own experience with your tumour size....that's very reassuring. I know that lobular cancers don't always shrink the way they need to (I have a lobular cancer as well as ductal) but I would kick myself if I didn't give it a go!
Will update you late this afternoon...
Thanks a million for being so supportive Helenann-it feels very validating that you understand. It *is* such a big operation, as you well know, I just don't feel I am strong enough to cope with it at the moment, nor do I want to make the decision to have the mastectomy without first giving Letrozole a go.
I am expecting a telling off tomorrow. I am also expecting that they may try and sway me to have the surgery as planned, in 2 weeks. I am petrified. A friend has offered to come with me to my appt but I politely declined. I have insisted on going to all of my appointments on my own-I think I'm nuts. I'm a firm believer that we all need an advocate, and I don't feel the BC nurse is there for me-but more for the consultant, yet I continue to attend on my own and am outnumbered.
I want to be able to be with my mum for her surgery and though she said on the phone today "please don't postpone your surgery for me"-I emphasised to her that even if she was well and not about to have her own surgery, I'd feel the same about postponing mine. I just want to feel more certain and more ready than I already do.
I really appreciate you understanding. I know you've just been through the op yourself, and am envious in the sense that you were ready to face the music. I don't think I am there yet.
Oh Marla - I totally agree with you - if you're not ready to face this and you've been assured there's no urgency you must do whats best for your sanity.No body would judge you.
I have read posts on this site that have said by taking the medication the tumour can shrink to almost nothing - so as long as they keep an eye on you all should be well. Obviously if scans show the medication isn't working or things change you can always reassess your options at that stage.
You're a really strong individual who knows her own mind and has weighed up all the options and been brave enough to 'voice' your fears/concerns.
Please keep posting, though, or keep in touch through PM if you don't want to post.
We're all here for you and will help you get through whatever decision you make- and it has to be a decision YOU'RE comfortable with - sod what anyone else thinks - its your body.👍
You have the added stress of your Mum;s forthcoming operation as well - and I think you do need to be as strong as is possible mentally to get through a mastectomy and if you're worried about your Mum thats not going to help you.
Take care and sending you lots of love and hugs.
So pleased to hear you're doing well and coping on Letrozole, and that you feel positive about your new expander. It takes time by the sounds of it but you're getting there and seeing improvements on a daily basis.
My latest post was on another thread:
I'm not feeling "mentally" ready for a mastectomy (despite having bought the bras, underwear, PJ's, and my father is booked on a flight to come over, etc.) and and after an hour long call with a MacMillan nurse this AM (I talked her through my journey from diagnosis to where I am now)-she said that it sounds like I've already made up my mind but am too afraid to voice myself to my team for fear of upsetting them. She is right. She is the first professional who has actually listened to me (as opposed to talking *at* me)-my experience of this whole process has been (more or less)-"this is what you have, this is what we recommend, let's set a date". I realise you are never "ready" for something like this but I have had surgery before (another type) and I know how I *should* feel...a lot more mentally ready than I do.
Now that I'm on Letrozole, I'm aware that surgery is not *urgent* and even my breast surgeon had said to me weeks ago (end of Sept-feels like months ago) that provided I take Letrozole, I can afford to wait and see if my cancer shrinks and I can defer surgery for 9-18 months, etc. She also said they would monitor me closely via scans.
But until now, I hadn't really had the courage (and perhaps hadn't made my mind up) to defer surgery and I fear she will be extremely upset with me given my surgery is booked for 2 weeks from yesterday. I have asked to see her tomorrow; I have an appointment to discuss my thoughts and where my head is at.
I'm sure I am not the first to choose to defer but I feel bad leaving it this late. The MacMillan nurse said that it sounds like I am very low risk and that if my team monitor me closely I should be OK, i.e., if a scan in 4-6 months shows the cancer is *not* shrinking, I'll know that my chances of a lumpectomy are slim. To be honest, I might decide on a mastecomy in a few months time anyways (even if given the choice) but *now* doesn't feel right for me. I'm just not ready.
I would like to be in Canada for my mother for when she has her hip surgery and if I have my surgery in 2 weeks I probably won't be able to fly early in the new year when she may be operated on-she doesn't have a date yet. And so whilst there is no urgency for *me*, I would rather defer and give the Letrozole a chance to do it's thing. I'm curious to know if and how much it will shrink my cancer. One lady on the MacMillan forum said her cancer shrank by 50%! This is amazing. I consider a mastecomy a last resort, and until they tell me "Marla-if you don't have surgery now you are 80% at risk of it spreading" or whatever....I am in no hurry to have it removed.
I realise I may be alone here but I'm not afraid of the cancer-it does not bother me to have it in my body. It's the surgery and recovery that concern me. The time is not right for me. As long as I am taking Letrozole and as long as my cancer is not growing (which my second opinion consultant at the Royal Marsden said it shouldn't) then I am not worried about the cancer being in me.
Let's be honest-to have a 52 mm cancer in my boob it would have had to have been there a while-it did not grow overnight. And yet it has caused me no harm till now. I am *not* being irresponsible, in that I am not refusing treatment, *but* I *am* taking the decision to defer until I feel ready. I've been told by both consultants that whilst on Letrozole, there is no urgency to have surgery.
Hi Pastasmissus - you're certainly going through the mill - sending you love and hugs. xxx
Hi Kateday - sorry the chemo is so horrible for you - hopefully they'll be able to give you something to help next time.xxx
Hi JacqB - happy belated birthday - glad you had a good day.xxx
Hi Chocxie - glad you're getting stronger and good luck with making the decision. xxx
Hi MrsLET - good luck on your return to work later this month. xxx
Hi Marla - hope all went well with your visit to your parents. xxx
Hi Xela - hope all is well with you. xxx
All September Ladies - sending love and best wishes to you all. xxx
My original mastectomy has nearly stopped leaking, just in time for my ANC that side and mastectomy and SNB the other side!
Hi my fellow September surgery friends - hope everyone is doing well.
I'm doing well - have been going to the hospital weekly getting my temporary expander filled, and I think it's going to be good.
I always feel a bit sore after the fill for a day or two (nothing awful, just tender really).
I now have 425 mls of saline in it and I think thats as much as they intend to do - I have an appointment next week with the consultant who'll confirm she thinks its enough - apparently they weigh your breast and then try to get the 'new' one as near to the same size/weight - its all very clever.
I've been taking Letrozole for nearly 3 weeks now - don't seem to be having any awful side efects - little bit achy today (but that could be the weather as much as the drug?), and I have felt nauseous (again, don't know if this is the drug or just how I'm feeling at the moment)
I'm exceptionally tired - is anyone else suffering from fatigue?
The October and November surgery threads seemed to have disappeared for a while - I've been following some whose surgey has 'spilled' over into those months - I hope people start posting on those threads again to keep us up to date (Octobers seemed to have come back but November??? Or is just me?).
Take care everyone - post a little update on how you're all getting on if you can.💖
I hear you loud and clear MrsLET. My excess is £500 (but my choice to go down the private route) and I'm self-employed. I had hoped to have a holiday this year (that was the plan pre-diagnosis)-my last holiday was Oct 2016, it looks like I won't be having a holiday for quite some time because as soon as I'm well, I need to go back to work. I just can't justify taking even more time off after this illness, for a break!
We're all in this together my friend. It sucks. But it's important we manage to keep things in perspective, and like you-have had my moments. We are *entitled* to having our moments, and I do hope that perhaps in the morning, if not before, you feel a bit better.
As my father continues to tell me, you can always make more £££. But as per our health-it's now or never (so to speak). As long as you're still fit and healthy and able to work-you'll earn the £££ back and get on top of things again.
Xela - hope all is going well at home.
I don't know whether to leave this thread now as having a re-exision in October so may qualify for the October thread!
Anyone got any experiences of the second op to re-assure me?