Lucky stars
Earlier this year I noticed a lump in my left breast that was not going anywhere. It was hard and persistent but not very big. Having always had lumpy breasts I proceeded to ignore it for quite sometime. Then eventually I could hear the voice of my best friend in my head telling me to get it checked out. My best friend Lisa had passed away the year before from Breast cancer so her voice was like a wake up call.
Living in a small country town and busy working as a teacher it was easy to ignore for a while, at work we had the breast screen poster on our fridge and when the mobile unit came to town I knew it was time to take action and get my small lump checked out.
In the van the nurse in charge was pretty certain it was nothing to worry about and nothing was visible on the mammogram. Lisa's voice was insistent though that I persue it all further, so I ticked the box that said I was concerned about my lump. This lead to another appointment with the Breast screen clinic in Ipswich. A breast care nurse examined me and could feel my lump but she also was sure it was nothing to worry about but just in case I had to come back for an ultrasound and to meet with a doctor.
I remember that day so clearly I was the youngest person there (46) and quite confident I was wasting everyone's time. The doctor exmained me and he could feel the lump and ordered an ultrasound the ultrasound showed nothing however he ordered a biopsy with my guidance.
I remember going home that afternoon thinking it would be great to get the call that all was fine. I went in for my results the day after the easter break and I knew something was up when I said my name at the front desk and the lady mentioned that I was the one the doctor wanted to see. I walked to the waiting room leaving my husband in the waiting room. The doctor in charge asked if I had brought anyone with me and I replied yes my husband and before saying anything else she asked me to go and get him. I knew then that my hopes for normality were gone.
My initial diagnosis was ductal carcinoma in situ. She explained that at this stage the cancer had not spread and was however high grade so it had the potential to spread. I was given a kit of information, measured for a bra and chatted again to my breast care nurse. We left there stunned, I have three daughters so naturally I was worried for their future. I felt lucky though that we caught it early and was sure it would all be fine.
The next step was to meet with my surgeon and we planned our attack. Due to the elusive nature of my lump i.e the fact that it was invisible on the mammogram and the ultrasound I had to have an MRI . The MRI was like being connected to some barbaric milking machine the radiologist in charge was wonderful and she actually showed me my results on the big screen as they came in. She told me that red indicated invasive cancer cells , my left breast featured first and the insitu cancer was evident but no red dots so that was a good thing. Next came the results of the right breast and unbelievably red dots appeared. I was shattered, to now have cancer in both breasts was more than my mind could comprehend at the time.
My surgeon went from discussing a possible lumpectomy to a radical bilateral masectomy. Really I had no choice I knew I could not live with cancer in my body and I owed to my family and friends to be as proactive as possible. So very quickly a bilateral masectomy was scheduled with the removal of lymph nodes.
Prior to my surgery I made a boob cast of my boobs with my wonderful husband's help and I have started to decorate this. I called it an Ode to my boobs. My surgery went as planned although a little longer due to an excessive bleed, requiring three blood transfusions. Other than that all was fine.
At my review I was given the news that two of my lymph nodes tested positive , all the margins were clear and my cancer was HRE positive. All in all not too bad.
It was decided that I would have chemo and possibly radiation.
Today it is three months since my surgery, I am half way through my chemo. My hair is just about completely gone, my scars are fading and I am looking to the future when chemo is a distant memory. I have to have radiation at the end of my chemo and then hopefully all will be clear. It has been the most surreal event of my life, I count my friends and family as my blessings each and every day. I thank my lucky stars that Lisa's voice was in my head urging me on and making sure that I didn't ignore the change in my body and I urge anyone who notices a change in their body to persist in getting it checked out.
Comments
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Hi sueki
Welcome to the network. I'm sorry to hear what has happened, but you have come to the right place.
Lots of ladies here have had, or are going thru their own particular journey, so this is the forum to be asking questions and if you like - vent! I know I did.
I really believe your friend was sending you messages and that she's been integral to you and your journey. She's obviously your guardian angel. Thank God she whispered in your ear (so to speak).
And how thoughtful of you to think of your family and friends when facing the prospect of a double mastectomy.
Having a mastectomy, let alone a double mastectomy is a traumic experience (I had a single left one). You have been very brave having done this and I hope the recovery wasn't too bad for you.
I simply love the idea of getting a boob cast - how fantastic! I just wish I had thought of that - although I'd have no idea where to go to get it! And I love the idea of decorating it too! Well done!
You mention you're half way through chemo and that your hair is almost out. I think you're lucky to have had it that long....some women (like myself) loose it on the first chemo. I lost mine within 24 hrs after the chemo - I couldn't believe it! What was left made me look like Cousin It (out of the Addams Family) so I went to a hairdressers (not my own as it was too upsetting for my hairdresser) and got it shaved off.
We nick-named my now shiny head - chrome dome! When I purchased my wig that was christened "Fred". Funny how we nickname things isn't it.
Aside from the obvious shock and the emotional roller coaster ride that goes with cancer, let alone the surgeries, I think you have coped really well and you should give yourself a big pat on the back!
I really hope chemo isn't too bad for you but do remember to rest a lot. I was told to drink plenty of water a couple of days before and after chemo - somehow it's supposed to help. I s'pose it did too.
By the sound of it you have a great support network of family and friends and that's very important. Likewise you'll get support from the ladies here, so do blog away to your heart's content - like if you're awake at some ungodly hour of the night/morning 'cause the steriods [if you have to take them before chemo] is keeping you up! I know I did and got to meet some lovely ladies.
Do keep in touch and good luck.
cheers
Helen
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HI Helen,
Thankyou so much for your response to my blog. I believe Lisa is with me all the time I don't see her, but I definately feel her calming influence and her laughter when things are just too surreal to describe to anyone not going through the same process.
I try to drink lots of water after chemo I find it so hard to swallow at times though, initially the first week after chemo everything tastes like oil. My tastebuds have left the building completely, I no longer can eat chocolate or sweet food and I used to love coffee, now I can't stand it, it is so weird.
I do have an amazing network of friends and family and it is amazing how there seem to be so many connections in my life that have lead me to this place I am in now.
It is nice to chat to people who are having similar struggles as me, which is why I decided to join this group. Thanks once again for your support. No doubt we will chat again . I hope your journey is on the right track. Best wishes Sue.
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Yeah my tastebuds went really weird too....before Chemo I loved savoury food - would always go for an entree and main when out - never a dessert.
Well how the tables have turned! I'm now so addicted to chocolate I simply can't get enough! And I luv desserts!
I also participated in a clinical taste study which measured your taste before, during and after chemo. The report is due to come out shortly so that should be interesting.
I also found toothpaste quite burning when I was on chemo and had a real metallic taste all the time. I also suffered from really bad reflux as opposed to nausea (although I did have that a bit). I used to suck on barley sugar and drink a little bit of coke to relieve the reflux (I HATE coke!) - it made me burp alot but at least it relieved the burning.
I'm glad you have such a great support network - I believe it's really important.
My taste returned about two weeks after I finished chemo but my sweet cravings remained! hahaha!
Take care
Luv H
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Haha you and I could be opposites Helen. I was always a chocolate and desert girl now I am a savoury girl. It has helped me lose weight though so I am not complaining about that. I can't drink anything other than water, tea and sometimes lemon squash now. It would be so interesting to see the results of your trial and see how it impacts and why they think it occurs.
I had my blood test this morning and for the first time my portacath really aches, which is quite odd, I will just have to take it easy. I also met with my surgeon today and he wrote a referral for me to see the plastics surgeon sometime next year, so new boobs here I come!
Not looking forward to tomorrow I have to take 2 dex tablets each day from tomorrow for three days and from the last round of chemo I know one tab a day is enough to keep me wide awake and anxious to keep busy, can't imagine how wound up I will be after 6 in three days. New chemo this time on Wednesday as well the D rounds, hoping it doesn't make me put on weight which I know is vain but I have my niece's wedding to go to in November and it will be bad enough being the bald chicky babe albeight wearing a wig, without being the puffed out bald chicky babe. Anyways anyone who has been through the D round of chemo if you could let me know how your body reacted I would love to hear it. Hope you are all doing well in your battles today.
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OMG That's so funny - you being sweet and changing to savoury when I did the opposite! I'm really keen to know the outcome of the trial too! I'll let you know when I get it back...should proove interesting reading.
I hope you won't be too wound up with those steriods!!! Maybe you should think about leaving a pile of ironing or something to do when you're all revved up...or better yet - do you like craft or cooking. You could cook up a storm and freeze up some dishes for when you're not feeling up to cooking....or start a craft project (if you can concentrate enough) to do.
I redecorated! First I reorganised a spare room - complete with dragging furniture around (really dumb - don't try that!) and then I revamped my bathroom - painted it, put in new fittings, redecorated it altogether...very productive.
I hope that the steriods won't have you up all night, but if they do - there's a few options for you! LOL!
Can't help you with that particular chemo unfortunately but I hope it goes well.
Talk again soon
luv H
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I intend to cook up a storm tonight. Lots of choc chip muffins and whatever else takes my fancy. The girls will love it.
I have started several craft projects, I usually love art things. Some of my things are crazy as like my boob cast, I emailed a company that makes belly casts for pregnant women and asked them if it would be suitable for my needs and they were surprised but very supportive and loved that I was going to do it.
Next I went crazy and decided I could make hair clips, They were amazing until you bent them to put them in the girl's hair, not mine cause I don't have enough. Well anyways when they were bent all the bits and pieces that I carefully glued on went flying off. I tried to use the glue gun to fix it but it happened all over again. C'est la vie. Why a bald chick would make hair clips is just crazy as anyways. Any how since that debacle I have tiedied numerous slips and camisoles, they look fantastic, well I think so anyways and some of them are so comfortable I wear them to bed, very soft and bright. I am also making my niece's placecards for her wedding, by tracing around skeleton leaves onto cardboard, writing the names in gold and then overlaying the skeleton leaf and putting on paper flowers as well as making a stand for them out of recycled card in the shape of a heart. I hope they look okay they take about ten minutes to make each one. Only thirty to go.
I also go in to my work every friday but not chemo week and I work with some kids and listen to reading, sight words and in the afternoon I work with the special needs class and teach them art.
I try very hard to keep busy, luckily for me I live across the road from a blue care store and when I get really bored I go there and buy a couple of new books and find my own treasures.
My friend Lisa used to shop on ebay when she was wired up, I don't think I want to go down that path it could prove to be very expensive.
Anyways Chemo tomorrow more dex and then only two more treatments, so good to see light at the end of the tunnel.
Take care lots of love
Sue
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I think you would be perfect for the job working with kinder kids and elderly and they would be very pleased to have such an experienced volunteer. You can always approach your local schools and volunteer to work with kids, we have mums come in for reading, writing, maths groups, garden work and kitchen work as we are a Stephanie Alexander kitchen garden school. I have never knocked back help. The school may ask you to get a card for clearance purposes though in Queensland it is a blue card. All people working in our schools even volunteers need to have one if they don;t have their own child in that particular school.
I love your fundraising idea. Before I left school this year we had a Pink celebration day and the whole school wore pink and donated a coin to go to the McGrath foundation, we had a sausage sizzle with all meat from our local butcher donated and bread from our bakery donated, we had pink activities, my breast care nurse came out and handed out bags to mums who came along, the kids made headbands, wands, had pink ribbons face painted on made cupcakes and biscuits blew bubbles and had the most amazing day. The local bakery made me a cake with pink licorice straps in the shape of our ribbon and we cut it and shared it with everyone. I usually organise our celebration days and this time everyone else organised it and I was allowed to float through the day and check everything out. It was very very special, so it is so easy for me to give back now when i feel up to it.
I will post pictures on here when i work out how to do it. Glad you like the idea of the place cards, hopefully the guests won't think they are too cheesy and they will like them. Your cook book sounds awesome let me know how I can purchase one from you, would love to do that. I love cookbooks written by real people as their recipes actually work.
I had my fourth chemo today and am feeling okay a little sore they had some trouble acessing my port today so that is bruised and I am flying high on six dex I actually missed two yesterday and they gave me extra today in my drip so now i have had six. but the good news is they gave me a sleeping tablet to offset the dex. I managed 2 hours sleep last night and mad an awesome batch of chocolate cupcakes with delicous choc frosting. Now almost gone thanks to one of my princesses.
I would give the boob cast a crack like your idea of using your prothesis, it is worth a shot, I found my kit on line and just looked up pregnancy casting kits and they were great, don't be afraid to ask questions.
Anyways hope you had an amazing day Helen. best wishes and love Sue
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Well it has been just over a week since my new chemo regime. I am now on dax and I now feel like I have cancer. Not all the time but on the weekend if there was a hole I could have crawled into with a blanket to cover me and a dream to get me through what was to come. At times it felt like my nerves were being ripped from whatever incases them. In my darkest time, my breast care nurse karen rang and asked how i was doing. I was so happy she did, she explained that this treatment was not easier and was very traumatic and all that I was feeling was normal, she sympathised, and offered very good advice. I am so lucky to have her in my corner that is for sure. Once i started doing what she told me to, my days were easier to bare and now a few days on things are good again. Now I know what to expect for my second round of this I will be better prepared. I didn't like to feel so vulnerable , knowledge is power. Hope everyone else is doing well in their battles.
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