Hello all, I am new here today and am seeking support from others as I don't think I am doing as well, mentally or physically as I am expected to do or expect of myself.. I had a bilateral mestectomy on 13/2/13 following Padgets Disease of the Nipple with secondary high risk DCIS in situ as I have a form of haemophilia which increased my risks of bleeding a double was recommended. Sadly 1 week later further surgery was required due to internal bleeds. I thought I was OK with the first surgery which went as I expected, although confronting to see myself that way but the second surgery required much more work with further incisions needed. Now I feel I look like frankensteins bride, still in pain, with feelings of electricity running through my giant incision and a sensation of feeling too tight inside almost like too much has been removed. I have had a large weight loss, over 11 kilos in 3 weeks so not sure if its that or normal, really ladies I'm not sure what normal is anymore and I am crying constantly. Any feedback and advice would be great, regards Susan

Hi Susan I had the bi lateral mastecomy too and mine often felt too tight too, it still does when I get tired or don't take in enough fluids. It's a crappy time and having to have an extra surgery sux. It takes time to process all that has happened and time to find out what the new normal is. Apart from the physical wounds, there are also the emotional wounds that tend to get overlooked. I saw a physologist (under protest) but proved to be very beneficial for me. Also coming here is a step in the right direction too, we have been there. I am actually at home recovering from having my ovaries removed on Tuesday, so feeling a bit sad and sorry for myself too today, but tomorrow I will pick myself up, dust off and keep on keeping on planning all the fun things I can do with my life. Much love and support huny, we are here for you. Tanya

Welcome to this network but sorry to here about all the surgery you had to have. It's hard at first to get used to the mastectomy scar.I had my mastectomy in 2010(my second bout of bc cancer) and then after that I had chemo.I can remember looking in the mirror,bald and scarred,and saying the same as you - I look like Frankenstein's bride!! It's "normal"to cry and grieve for breasts you've just lost. You will feel tightness(like duck tape across your chest?) and numbness and weird shooting pains.It took about 4 -6 weeks for it to settle down for me.However,I still have tightness which is apparently adhesions. Once I got fitted for a prosthesis and bought proper mastectomy bras,I felt more comfortable and confident.It is a big adjustment to get used to so give yourself time-cry if you need to. You've lost alot of weight but perhaps losing both breasts might account for some of it? Please blog back here for support,information or to vent your fears - I think it helps.Your pink sisters know what you are going through. sending hugs, Tonya xx

So much for responding and so sorry to hear all you are going through. After speaking with a lovely girl at BCNA she pointed me here first. Yes I did get my journey kit which I have found invaluable. Only 7 years ago I had major reconstructive bowel surgery which was a long slow recovery (and a massive change of diet!) and was strong enough to cope with that. I think i gave my friends and family the thought that I was superwoman, tough and strong etc. that I don't think they know how to deal with this weeping, angry, frustrated me who is so sore and cut up to even get a hug. I do appreciate your comment that the old normal is gone and I have to learn to take it each day. am seeing my GP again tomorrow to check leaking drain incisions and will ask her to refer me to someone for councelling. last week she thought I was not depressed but suffering post traumatic stress, I think she may be wrong because this is just not me at all. Luckily my lymph nodes and clear margin were clear and so no radio/chemo needed. Reconstruction is not viable due to my blood disorder as the risks of bleeding and infection are too great. I am hopeful that once I am off antibiotics and pain relief I will settle. Berlie sent me a new bra with pads which I will try once the incisions begin to heal (from my shoulders, under my arm pits like a fan, down to my lowest rib on the L side and the R side and connected straight across my chest) Anyhoo I will come back tomorrow after my visit to doc and let you know how I go. Thank you so much again. I just noticed other messages which I will reply to later as it's taking ages to type with the swelling I have...thank you all xx

Hey Susan I am more than happy to be here for you and I know what you mean about people thinking we are super women cause that was how things were for me before BC. Have a good chat with your doctor tomorrow and let them know how you are feeling. From the other posts from the girls it appears it is normal to have that tight feeling etc. but it certainly doesn't sound comfortable for you. Hope we have helped to make you feel a bit better about things. Please stay in touch and let us know how you go with the doctor tomorrow. Lots of love, Mich xoxo

Post bilateral Mastectomy advice | BCNA Online Network

15 Replies

SusanF
Member
12 years ago
Haven't we been thru it. I'm up and down, currently up but it can all change. Just got off the phone making arrangements for my new girls so it's all getting close....terrified and happy, wish it was now then it would be over. Humour, lost without it, check out the humour/comedy thread x
Mechell
Member
12 years ago
Gee girl, you sure have been through the wringer!! but your reply to mine sounds like you are today in a good place. Thats heartnening to read. Thankyou for sharing with us and for your reference to my blog, And I note we have all seemed to retain our sense of humour!! Gads, what would we do without that!!??!!

Peace and light hun :)
SusanF
Member
13 years ago
Hi tan, not sure if all my posts and replies can be seen? If so see response above for update, if not will fill you in soon. Great idea about taking hubby and loved the defrag analogy, taken loads of meds last hr and think k I should not type under the influence...off to my happy place xxxx
SusanF
Member
13 years ago
Too funny leonie and I have the perfect image in my mind. What a perfect day to make me laugh too. Terrible weekend here high temps, extreme pain not eased by anything to hand. Living in the country refused local a&e room full of Saturday night drunks. Called surgeon who kindly met me at my gp's....hows that for service? Neck, shoulders and arms look like alligator spine turns out other lymph nodes are swollen so can't turn head left or right. Have invisible! Infections causing high temps so a new cocktail of 3 more drugs to add to my growing list really my husband has has to put it all in the pc with alarms. New much stronger pain meds with double for sleep. Really he says what can I expect.....one of the most radical surgeries he has done and thinks anyone living with this pain for a month would be crying lol hope all this works or I am threatened with hospital again...god forbid. Hope your back feels better. Tell your hub that mine did his first grandson change Wearing his grandfathers gas mask! Anyhow must go meds are kicking in feel better xx
Tanya
Member
13 years ago
Hi Susan Hope you are felling a little better today and your pain has settled a little. At my first physio I took my husband and asked them to teach him the lymph drain massage too, so maybe you can take your hubby along to learn it too. Tell him it like a de frag for the computer, but for your lymp instead. He he he. Tell your Doctor you will be fine to go to the UK in July, it's a long time away and it will give you something to look forward to and focus on. We are going to the UK and France in July this year too, I love tripping round experiencing new things now. Before BC we hadn't even had a family holiday, now you can't keep me home. Anyway just wanted to check in and send some love and healing vibes. Xx Tan
SusanF
Member
13 years ago
Hi Leonie, I love your comparison to Robomaid, just love it and made me smile. My husband (an IT geek) says I have to put my processors into sleep mode and not start up again until the new processor has upgraded my server. You both sound similar.

I hope to go with the flow, I am trying, but still so angry right now, my sisters are all in panic mode for themselves and there daughters and its like 50 questions so hubby is now monitoring calls to keep them at bay as I simply cannot tell my story over and over.

I think I suffer "middle child syndrome" the one that get everything. I am sure I will start to love myself again, or I will try to. Hope your back improves and you enjoy at least part of the family celebration. all love and thanks x
SusanF
Member
13 years ago
Thank you Diana, I'm slowly finding my way around. Funny today when I logged on my daughter sent me my horoscope which I never read myself. It says "you are your only priority" so I am writing that in my journal along with your advice to "be kind to yourself" as a reminder to me to offer myself.

have a great day x
SusanF
Member
13 years ago
Thank you Tonya, Its reassuring to know that others have had this tightness and shoorting pains and I sure hope it swettles down. My girls were a 12 C and I have no idea what they would weigh, Doc thinks the weightloss in due to many things, obviously decreased appetite but perhaps also the factor 8 infusions and blood products, etc. Thank goodness I had enough weight in the first place to loose or I would look like a skeleton now.

Once the incisions are less sore and begin to heal I will head off for a fitting as it was such a drama finding something to wear just to go to docs, everything is just hanging off me making me look even thinner and to think I was thinking of loosing a couple of kilos in October LOL.

Thank you so much x
SusanF
Member
13 years ago
Thank you so much Chris, I am simply in awe that 3 weeks post surgery you were flying to Perth! I have a family wedding in the UK in July and the specialists say no its too early but we will see. Sorry to hear of your bleed, maybe that's why they say no flying.

I must thank you for sharing all this with me, I can't believe they don't send us out from hospital with a "what to expect sheet" but I am feeling less alone. Making appointment with a physio who specialises in helping folk like us. Had a bath last night after a month of drains and felt a little more relaxed.

Have a great day Chris and thank you x
SusanF
Member
13 years ago
Thank you so much Tanya, I tooki on board your advice and started to drink a lot more water but so far not much relief. I went to see the doc yesterday which was traumatic in inself just getting out the door, what to wear? nothing fits, on with the Berlie foam bra for a whole 3 mins then hubby had to get it off me, just too swollen and sore what a laugh in the end, inbetween more tears!

Full check and drain out, yuk yuk yuk almost a foot and half long! Swelling on left arm which may be due to lymp drainage, referal to physio now drains out as I am shaped like a pretzel, blood work taken as doc thinks I have abruptly gone into menopause and my low blood count may be affecting my emotions and thyroid function done due to massive weight loss which may have changed my levels (Hashimotos) Doc still thinks I am suffering PTS rather than depression as was reluctant to prescribe anti depressants so have referal to Phsycologist.

Still very tight and sore, drinking warm liquids feel so hot going down and cold feels freezing. But guess what? did not wake up in tears this morning. Back to Docs Tuesday.

So how are you today following your overian surgery? you all amaze me. thank you for being there for me too x