Hi, not sure that I know my way around this site yet but thought I would dive in and see what happens! I had a mastectomy two weeks ago and will commence 4 cycles of chemo in two weeks time. My story started with an odd ache in my right breast. My mother-in-law and sister-in-law have both had breast cancer and so I thought I should sign-up for my first ever mammogram. To my surprise I was recalled for an issue with my left breast. On the day of my recall I started in the waiting room with about 15 other (mostly older, grey haired) women thinking that I had probably moved during the first mammogram and a further mammogram would see me skipping off back to work before lunch. As the day progressed there were less and less women in the waiting room and after two more mammograms and an ultrasound I was directed to the room with the big box of tissues! Not a good sign! I was told I had two lumps and an area of calcification and that one of the lumps definitely looked cancerous. Two biopsies and one stress headache later I was the last woman to leave the clinic as the sun went down. As you are probably all aware the wait for results was harrowing but I was prepared for the worst. Jumping forward a few weeks I am now recovering from a mastectomy of my left breast. I am glad it is gone as the final pathology revealed three tumours of Invasive Lobular Carninoma measuring 25mm, 20mm & 6mm, a 10cm! area of Lobular Carcinoma In Situ and some thing weird going on in one of the ducts under my nipple. Fortunately the four lymph nodes that were taken were clear of cancer and good margins were obtained. Amazing that although I checked my breasts regularly I was completely unaware that basically half my breast was rotten. So, now I am facing chemo. Trying hard to remain positive and up beat but everynow and then I have a mini melt down. My concerns are not so much how I will handle the physical effects but how my husband, my kids, our kids and my mother (supportive to the max) will cope and whether I can remain sane while being either 'looked after' (killed with kindness - you are now the patient and not qualifed) or completely 'side lined' (I have to run this house now and won't have time to tend to you!). I also don't really want to wear my friends out as this experience is totally outside their realm of expertise (although they have been very supportive). So...I am throwing myself out there to the network as a newbie. If you would like to chat or offer advice to a 47 year old who is used to juggling multiple roles, four kids and a very busy life but who isn't quite sure how she is going to get through the next few months then I'm your woman! I figure I am now strapped to this pink lady conveyor belt whether I like it or not so I may as well have some friends along for the ride. Talk to you soon, K

Hi karen b, Welcome - It is good to see you taking the plunge and sharing your first blog post. If you need a hand finding your way around, just shout. You might also find the 'Help' section of the site useful as it will give you tips on searching for others going through a similar experience as you. See: http://www.bcna.org.au/help I hope the online network provides you with a place to connect with other members and share your experiences and as you put it - 'may as well have some friends along for the ride' I love it! :-) Daina

Hi Karen and welcome to a wonderful group of amazing women! Your story sounds so familiar to mine - except mine was ductal not lobular. I am now halfway through my chemo and it is now reality not a dream. I think you hit the nail on the head with what is hardest - the being looked after! My family all live interstate so being looked after means having others living in the house. I now accept it - we all need it and it has helped get us through. The support of my friends and family has overwhelmed me but in a good way. The things that have worked for us: - a friend organised a food roster - she sends out the emails including a list of family favourites and no-goes, they all communicate to make sure we don't have a week of lasagne! I leave an esky on the front porch and a box for the containers to be returned. We do this for about a week and a half so that I or hubby cook on weekends and the "good" week between chemos. - Friends text before calling or calling in in case I'm resting. - I organise pampering and catchups with friends in week 3 (my good week betweeen chemos) - we redid the kids' job schedule (varying success here) - lots of praise for when it actually happens (they are 4, 6 and 9) - organised other parents to help with pick ups and drop offs - particularly any before school ones. - we told the kids everything that was going on from the first day. We used varying resources depending upon their ages. - we had a Hair shaving party to celebrate losing my hair so it wasn't so confronting for the kids - they all had a go at taking some off. - I have lots of tv shows on a hard drive and headphones so that in my 'off' week I take off to my bedroom and sit in a recliner chair and watch tv or snooze without hearing all the noise in the house. The hardest thing is actually having to slow down a little. I still find I can "Captain" the ship so to speak but delegate the tasks more. I try to rest so that when the kids are home I am feeling good to help with homework, music practice and chat about the day generally. You can and will get through it - there are times when I think I can't - the drugs often make me feel quite low but here I am halfway and coping fine so far and only now realising how strong I can be and how I am changing as a person despite thinking I wouldn't. I hope you are recovering well from your surgery and look forward to sharing with you. Which state are you in? Amanda xx

Hi Shirl, Thanks for your reply, lots of great advice. I think I am going to enjoy this network as it is so nice to talk to other ladies who have felt the same emotions and dealt with the same problems and issues. I have four children. The older two are a nearly 19 year old daughter and a 16 son from my first marriage. They live with us every second weekend and the rest of the time with their dad. They took my diagnosis very well, being teenagers they are completely grossed out by my surgery and don't want to look - but that's OK. My younger two are a 4 year old daughter and a 6 year old son and are from my current relationship. I have been honest with all of my kids. I have given them age appropriate information and made sure that they know I am happy to answer any questions or concerns they had. My teenagers have been supportive and loving but not particularly interested in the details. My younger kids have been very accepting and full of intelligent questions and matter of fact statements. They are both fascinated by my mastectomy wound and in thrall of my drain. My son tried to pull my drain out of its carry bag the other day at school for show and tell (I gently advised him that showing my drain was not appropriate). Over lunch with the in-laws on Saturday my gorgeous 4 year old daughter asked me to show everyone my flat booby (I declined again). I have already ordered a My Journey Kit and it should turn up soon. I am off tomorrow for a bone scan and liver ultrasound (just to be sure) in the morning and then on to a post mastectomy shop to look at wigs, hats, prostheses and bras in the afternoon. So, by tomorrow night I should be thoroughly stuffed but hopefully I will have lots more ideas about what I can buy in anticipation of losing my hair and what is available in the way of bras and protheses for when I have recovered enough from the surgery. Today my drain was removed..woohoo... I shall do crocodile rolls in bed tonight with out waking up wrapped up in tubes! Funny..how breast cancer quickly changes what gets you excited! Karen

Hi Daina, Thanks for your welcome and advice. I got quite excited when I logged on tonight and found that I had messages already. Looking forward to further chats. Karen

Hi MandyMoo, Thanks so much for your reply and all of those really practical tips. I am a pretty logical and organised person and I am usually most comfortable once I have sorted out how I am going to accomplish something so your insights into how you are managing to keep the house running will really help me. I am sure you have your down days but you seem to have your stuff sorted and a pretty positive attitude so I hope that I can also stay up beat and keep my sense of humour through this. I am sure that I have had some post natal depression and so I am hoping that my treatment does not send me back there but this forum will probably help a lot to keep me sane. Like you, I have had heaps of offers of practical help and so I might start calling in some of the favours when the going gets tough. I live in Jerrabomberra NSW which is just over the border from the ACT. I grew up in Canberra and still travel over the border to work but love living in NSW (the pollies aren't quite so nutty and I live in a really great community). I accepted your contact request and read through your first blog and its replies. Your thoughts and emotions were very similar to mine. I felt a bit embarrassed about the fuss that everyone was making as to me as this wasn't so bad..or was it? I decided to send an email to all 171 people in my branch prior to my mastectomy. I decided that I wanted to tell everyone the facts (so that hopefully they wouldn't start writing my eulogy just yet), I wanted to make people feel comfortable to discuss my diagnosis with me but I also stressed that I also wanted to be treated exactly the same as before and that I wanted to discuss other subjects too! I received some really uplifting replies and have printed these off to read on a gloomy day. Today was my first day back at work after my mastectomy and I think the email has worked. I received lots of g'days and some people stopped me for a chat but in general it was work as usual. I am hoping that when I walk in to work the first time without my signature blonde curly hair that my email will serve to stop any embarrased glances or whispers in the tea room. I have told my two oldest and cheekiest male friends that 'baldy' is not an appropriate substitute for my normal nickname of 'blondie' but I am sure they will probably come up with some other nickname or pick on another of my body parts! I got my drain out today so that was exciting for me but I think my little kids might actually be a bit disappointed that they won't get to see 'my blood' anymore. As I have said in another reply I will be able to perform crocodile rolls in my sleep tonight without waking up bound in tubing! I am also hoping that I can start to exercise my arm more now that the drain is out as I am keen to get it back to full movement as soon as possible but I think I will give it a few days as I don't much fancy having fluid syringed out if I over do it. Tommorow I will have bone scans and a liver ultrasound (which they say doesnt hurt) and then I am off to the post mastectomy shop to look at hats, wigs, bras and protheses. So I have a busy day ahead but I always feel better when I am getting on with things. Thanks agains for your comments to my first blog. Karen

Another newbie for the pink lady conveyor belt!

15 Replies

elisaw
Member
15 years ago
hi girls i hav just started this bc journey for the second time i hav had a masectomy on my left breast but had reconstruction on the same day where they used my latissimus dorsi muscle (back) but am due to hav a nipple reconstruction (if anyone has experienced this i would love to hear from you). I finished my chemo lost my hair and starting tomoxifin soon. All these challenges we hav to face and i feel alone at times but being a member makes me realise there are a lot of us out there that hav to be brave hav courage and deal with this. Always look out for more opinions and chemo isnt as bad as what they say i hated it but i got through and i managed to party every time i had my first dose it must of been the steriod in dont let it stop you from doing what you want just be careful not to pick up any illness also there are a lot of great plastic surgeons and if you want to know who i had would gladly share any info with you. all the best and lets all hope their is light at the end of our journeys xx
glenmkelly
Member
15 years ago
Kitty you beautiful person. I have just started posting on this site and you took the time to reply and I wanted to say thankyou. I hope that you are now coping ok, I am sure that there are a lot of ups and downs ahead, please talk about things when you are feeling down, I think it helps. Best wishes.
karen_b
Member
15 years ago
Hi Mandy Moo,

I am doing good so far, feeling really positive. I haven't logged on since my last blog as I have been buried in medical appointments, school open nights for my older son who will attend a new school next year, and appointments to look at hats, wigs etc. I will post a separate blog on the happenings of my last two weeks. (I presume that is what you do..I still haven't quite figured out how this site works. I presume friends automatically get notified of new blogs but as they are public anyone can comment. I had four lymph nodes taken and so I don't think that is called an axillary clearance. My range of movement is really good (the physio was pretty amazed) but I do have cording which is limiting my ability to stretch my arm out completely. I have started more extensive exercises and that already seems to be improving things which is good. I do think I probably have a wicked sense of humour and often see the irony in things, so if it makes you laugh all the better. I think you have to have a laugh cos being serious all the time is not good for your health.

I think you must be having a different chemo regime to me, how many cycles do you have to do. I think I am lucky? as I should be having four cycles of TC (every 3 weeks).

So, tomorrow is day 1, cycle 1. Not looking forward to it but feel that I am pretty well prepared. See my new blog for more details.
JJoy
Member
15 years ago
Oh Kitty, just go ahead and have a howl and let it out! It may be unbelievable but you will feel normal again one day - when all the trauma and shock is over, you wont be the same - you will have changed forever, but go with it and hang in there! As far as a man loving you - don't even worry about it at the moment, you have bigger fish to fry, if there is someone out there, he will love you for who you are - its just really hard for you to get your head around, as I say to the ladies, 'baby steps' - one foot slowly in front of the other. I grew up with a big 'T' scar on my chest - right for everyone to see, my Mother used to tell me "I should cover it up" - but I thought "Nar, to hell with that" that scar was a sign of the life saving heart surgery I had as a small child, people would poke at it and question me, I didn't flinch - It was a part of me! Now I am missing half a boob (one normal saggay and one right perky) and a whole heap of scars from recent operations - together with the bald head, I hardly think it's worth putting on lipstick! I figure, you don't like it? then suck it up babe, this is me! It is very hard to accept how you now look and the changes that have occured, but you will adjust withh time, with our support you will know at the end of the day, it is the person who you are that counts for everything in this world, believe me - you will be ok kid, chin up and big hugs to you x x x x Josie
MandaMoo
Member
15 years ago
I am so sorry you have had a bad experience with your surgery Kitty25. Maybe it is worth posting a blog of your own so you can get some feedback from others too - they may have trouble finding your post here.

Have your surgeons given you options for reconstructive surgery? have you had any physiotherapy for your arm?

All of this gives your self-esteem a kick in the guts but you are more than your body and can triumph over this. Those who love you will see past this. Perhaps that all sounds a little cliche - I'm trying to be positive but it may be worth talking it through with a counsellor or your breast care nurse to get some help sorting through it all both physically and emotionally.

It's ok to cry too - it's probably really good to cry.

Thinking of you.

Amanda xx
Tanya
Member
15 years ago
Hi Karen

Lots of replies, so you've got all the "good goss" on BC by now. just wanted to say Hi and welcome. My kids were 2 and 4 when I was diagnosed back in 2007 when I was 36.

Gonna be a bumpy road for a bit, but there is a wonderful life waiting just around the bend and over a few pot holes!! thanks for sharing your story with us.

Tanya ???
JJoy
Member
15 years ago
Welcome Karen, the ladies have pretty much 'nailed it' - I can only offer friendship and a shoulder like these other wonderful women, quite frankly even my husband commented "That website has done wonders for you Josie" and he is right - he has been my carer, my rock. We live in a small town and we moved here to take care of my elderly mother, we time passed, and she did too - so we were stuck thousands of miles from our children and grand children, and then this! We have been fortunate though because the locals have taken us into their hearts and homes - they all know me up at the local hospital and we sometimes have to travel a long way for many appointments in a larger town. I would like to say that you will go through a gambit of emotions, you will - but this website is a marvelous outlet and we are always here to listen and offer help in the best way possible. My children are all grown up and for awhile they acted like I had a 'bad case of the flu' It took time for me to realise they were just as frightened as I was....but I told them, please be 'normal' - normal is good! and gradually they are taking things on board bit by bit, I guess the 'bald head' brought it to the fore! It is hard having them in differerent cities and towns around the country and I miss them so much - thank goodness for Skype! I even get to talk to the grandchildren! You stay on board with us and we are here for you - even when you want to vent! This is one place you can laugh and cry and at least everyone in this club 'understands' believe me, I know, all the best with a biggie hug x Josie
TonyaM
Member
15 years ago
Hi Karen, Ditto to all of the above.I've had 2 bouts of breast cancer and have noticed that younger people seem take the news of your cancer in their stride but the older generation near faint away when you mention the big c.My poor elderly mum came over to help after my mastectomy last year and almost drove me nuts.I couldn't move without her saying"o careful, mind the drain".I think we are inclined to put on a brave face for every one to alleviate their fear..Also we are trying so hard to be positive so we can get through it all.Well this is a ride like no other- you can't always predict your emotions or keep control of them.I would surprise myself and be so brave and other times burst out crying at the smallest thing. I struggled with being bald.Not at first but as the months went on and no hair was coming back I became quite down.I really didn't wear my wig much cos it irritated me and caused worse hot flushes.I mostly wore bandanas,caps and scarves.Being bald over summer is probably worse.I take Tamoxifen and that cranks up hot flushes.After chemo my hair took 8mths to get to the length in my pic.I used to have straight blonde hair and now it's dark and curly.When I get changed in front of the mirror I do a double take cos I don't recognise myself at first.

Good luck with your scans(they don't hurt) and your ongoing journey on the pink conveyor belt as you so very well described it.

Tonya
louiseg
Member
15 years ago
Hi Karen

Welcome! I'm sure you will find this site full of valuable information and advise - I know I did!! The ladies on here are wonderful.

I, like you, have problems with being "taken care of". I don't like to feel like an invalid and soldier on regardless. I worked all the way through my treatment and chemo (had a week off after each chemo just so that I didn't run myself down too much and a few weeks off after the mastectomy). I have a very positive attitude and I found that that really helped with the morale of the family (and friends). My kids coped really well all the way through my treatment. I still cooked all our own meals but got my mum to help with the housework. I also had a friend drop my boys home from school for me on the days that I wasn't feeling up to it.

Take care of yourself and make sure that you do get some rest when you need it but certainly keep that positive attitude! I really think that that is what makes it all so much more bearable. None of us wanted to get breast cancer but by staying focussed we can get through it!

Keep us posted as to your progress,

Louise :)
louiseg
Member
15 years ago
Hi Karen

Welcome! I'm sure you will find this site full of valuable information and advise - I know I did!! The ladies on here are wonderful.

I, like you, have problems with being "taken care of". I don't like to feel like an invalid and soldier on regardless. I worked all the way through my treatment and chemo (had a week off after each chemo just so that I didn't run myself down too much and a few weeks off after the mastectomy). I have a very positive attitude and I found that that really helped with the morale of the family (and friends). My kids coped really well all the way through my treatment. I still cooked all our own meals but got my mum to help with the housework. I also had a friend drop my boys home from school for me on the days that I wasn't feeling up to it.

Take care of yourself and make sure that you do get some rest when you need it but certainly keep that positive attitude! I really think that that is what makes it all so much more bearable. None of us wanted to get breast cancer but by staying focussed we can get through it!

Keep us posted as to your progress,

Louise :)