(Hopefully) At the end of my journey
Hi everyone. I have been reading all your posts (thank you) and never wrote anything myself until now. I was diagnosed with a pretty small but aggressive tumour last June, and pretty quickly moved to a lumpectomy, then 4 dense doses of AC chemo, followed by a planned 12 weeks of Taxol (I only got to 8 due to peripheral neuropathy), then 22 doses of radiotherapy (including 6 'boosts'). I had some rotten times, AC chemo was difficult- I tried to work while I was having it but had to go on leave at about treatment 4. I had issues with almost all my procedures- my hook line had to be done twice (nearly 2.5hrs), I became febrile and had to be admitted to hospital, my veins collapsed, my PICC line removal was difficult to say the least and I ended up in hospital for emergency surgery, and right now I am battling the radiation burns. I lost ALL my hair, couldn't taste anything, felt nauseous and exhausted and am still having a heap of side effects. I live alone, so looked after myself pretty much all the way along, although I had heaps of support from my sister and some very good friends. But the most important thing I wanted to say to anyone starting out- nothing that happened to me was as bad as I thought it would be. I used mindful and meditation techniques when I was having my procedures and they worked for me- well most of the time. I fought a battle in my mind with cancer every day and I am so proud that I feel like I beat it many more days than it beat me. I just made up my mind that it wouldn't defeat me on a daily basis. I had a great surgeon, a wonderful oncologist who provided a positive and confident outlook, and all the doctors & nurses at the hospital were gold. I thought the chemo ward would be sad and upsetting- instead I found it to be a place of laughter and hope. I used a mix of public and private treatment and still see somewhere around 13 medical and allied health professionals while holding down a full time job. I didn't write this for anyone to say I did well. I wrote this to say DO NOT BE AFRAID. You can do this and there is lots of help if you need it. Reach out to this community, to a breast care nurse (thanks McGrath Foundation), to your family & friends, to the volunteers, a psychologist- people want to help you. Then when you get better, you can pass it on. Pay it forward. All the best of luck from me. Believe your mantra- mine has been: Things could be worse Accept the things you cannot change Do not live your life in fear
A big welcome to all New Online Network Members .....
A warm welcome to all new Online Network members - to the club that no-one really wants to join! Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you, cos we 'get it'. Nothing is off limits. We have ‘private groups’ for some more personal discussions .... so feel free to join any of them, if they suit you. Category: Groups | BCNA Online Network We are happy that you found us - as we were in the same boat not that long ago. The members here are just wonderful and will provide you with as much support as you need. Just ask away! If you put your story in the 'Newly Diagnosed' Thread, we'll have a better understanding of what you are going thru - and don't forget to add your 'town or region' in your Profile info - we may have members nearby who you can meet up with for a chat and a coffee. https://onlinenetwork.bcna.org.au/categories/newly-diagnosed We all know the absolute turmoil that comes with a BC diagnosis .... specially after a ‘clear mammogram’ and no family history. This was my story. My MG was clear just months before my wonderful GP found it, by accident! I had lumpectomy, Rads and now finished after 7 years of AI Tabs. If you can, take someone with you to your appointments for support - as it can be daunting sitting there alone. A 2nd set of ears also picks up points raised that you may have missed - and ask relevant questions too (as did my Sister in Law with me.) Also, consider recording your meetings on your mobile phone - so that you can go over it again later, if you have to, to query a statement, or just to have as a record. Your whole world is turned upside down in a millisecond, as you navigate unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this .... and it may take a year or two for your life to settle down. It is totally 100% ok to skip between anger, denial, sadness - but if you find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you to a psychologist ... or your local Breast Cancer Centre May have help there .... where you are more likely to find a bc specific psychologist who is more familiar with BC issues. Just talking about it openly and sharing it with a professional should be able to give you coping mechanisms ... Also, consider listening to Charlotte Tottman's Podcasts on her own experience with BC - she is a specialist breast cancer Counsellor - and was surprised at her own reaction to the news, when she'd been counseling others for many years & thought she 'knew it all'! She has done 2 'seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped. She is very easy to listen to & you'll probably recognise your own reactions in many of the podcasts. http://www.drcharlottetottman.com.au/my-podcast.html Also consider ringing our Helpline, for a confidential, one on one chat - just phone 1800 500 258, Mon-Fri, 9-5 You will make new friends who will support you (specially on this forum) and may lose some old ones, who just do not understand what you are going thru. Most of us here, have found wonderful friends within the group and have even met up with them in ‘real life’ before this Covid thing and since - hopefully they'll get on top of it soon & our lives return to a 'new normal'! If there is anything you want to discuss in a more private manner, you can message a member (or a group of members) and chat in total privacy. Personally I found that it mucked with my BRAIN more than anything else! And sometimes that is very hard to control, as it has a mind of its own! Keeping BUSY doing things is the secret .... get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before. Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!) Just click on the link to add pics and posts ... https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest If you are into arts & crafts, we have a 'Creative Corner' https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest and if into your garden, a Gardening post as well!! https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078 And we now have a Fishing post, as that is one of my passions! https://onlinenetwork.bcna.org.au/discussion/19494/fishing-brag-pics If you are an artist or a knitter or do chrochet or other art & craft stuff ..... whack up a picture here!: https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest ; If you have 'fur kids' - put their pic here & describe their funny antics ... https://onlinenetwork.bcna.org.au/discussion/comment/92526#Comment_92526 We even have a funny Xmas page .... feel free to add any that you’ve seen! https://onlinenetwork.bcna.org.au/discussion/20086/christmas-funnies-put-them-up-here-for-a-laugh#latest Try not to use Dr Google too much (difficult tho it is) as there is just so much conflicting information out there (and much of it is REALLY OLD & OUT OF DATE), and every BC case is totally 'unique' and it will only scare the pants off you! If you haven't had your surgery yet, we have some posts here on what to take with you to hospital, to make it 'easier' on you. https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1 And for your annual checkups, here are some ‘tick sheets’ to help you put your questions together for your medical team. (Make sure you click on the documents at the BOTTOM of the post, as the others are only sample pages.) https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment/p1 Take care, and all the best to you!
Things worth remembering
Ruth Hunt, in Perth, has published a letter to herself, about the things she would have found valuable to know earlier, before metastatic cancer, It seemed to me a really good list for almost anyone. Her circumstances are very sad, but she has found a way of looking at the best of her life. A link to the full letter is at the top. https://www.kidspot.com.au/news/perth-woman-with-days-to-live-pens-touching-open-letter-to-her-precancer-self/news-story/af5e4b2fd3a89fa1029f847cc3bfbedb Ruth’s letter Dear Me, You don’t know this yet but you’re going to have a rough few years in the future - far earlier than you might expect. Don’t worry – as rough as it gets, it turns out you’re a lot tougher than you thought and you will have a lot more support than you could imagine. Getting cancer at 34 will teach you a few lessons. Along the way, you’ll have amazing experiences, so don’t fret it’s not all doom and gloom. However, despite all these wonderful things, at age 34 you will unfortunately be diagnosed with stage 3 triple negative breast cancer. And, by the time you’re 37, you’ll be diagnosed with stage 4 terminal breast cancer. Cancer sucks. The first time around it’s not the end of the world. The second time around is a more difficult pill to swallow but, again, it’s not the end of the actual world. It will, however, be the end of you in this world - somewhat prematurely. Cancer will teach you that you can still train, go out, dance, sing, cook, love, work, be a sister, girlfriend and friend. The main lessons it taught me are listed below (because what lawyer doesn’t love a good list. Lesson one – Ask for help Mum always tells you the story of how you were playing with pieces of cloth as a one year old and that you were getting very frustrated because the cloth wasn’t doing what you wanted but you wouldn’t let anyone help. There’s also a great photo of you attempting to dress yourself as a two-year-old and failing miserably - again refusing help. Getting cancer will teach you that, not only is it ok to ask for help, but it will actually make life a lot easier. Lesson two – Family is so important In your twenties you will be so busy working and training that family gets a little too left behind at times. You move to the Eastern States and you are not very good at picking up the phone. You send birthday presents but they are usually late and when you do come home it’s for a whirlwind tour. Cancer will teach you that family is everything. They will be the ones sitting next to you on the chemo ward, flying across Australia just to be with you, sending you care packages and flowers. It will not be workmates. On top of this, you will find people who aren’t blood related - but they might as well be. They are the friends who call, even after there’s bad news; there will be friends who support you and love you and accept you, even if you’re a very different person from the one they met. Treasure your family and spend as much time with them as you can. Lesson three – Stress less. I promise you, you won’t be sweating on the small stuff when you are facing the end of your life. In the grand scheme of things, missing a day of work because you have a cold is fine. It doesn’t matter that you got 69% in an essay instead of 90%, in the long run no-one looks at your marks. Working Christmas Eve instead of spending it with family is a really terrible idea. (You don’t even get paid more on Christmas Eve!). Don’t worry if you’re a tiny bit late - no-one will remember. Same as no-one will remember if you wear the same dress to two functions with the same people. Lesson four – Dogs are awesome You will make the magical and terrible mistake of buying a puppy two weeks after getting a double mastectomy. Magical because Dougal is the greatest character ever. Terrible because you will quickly find out that lifting puppies is difficult post-surgery. But you will learn that sometimes just cuddling your dog is one of life’s great joys and that, post chemo, having a nice warm body lie with you is just what you need. You will get your own dog one day. He will be all yours - weird and lovely and he will worship the ground you walk on. He’ll be your only dog ever and he will be wonderful. Lesson five – It’s ok to say no You don’t know it yet but you are prone to saying yes to everything. This is one of the biggest lessons cancer will teach you. You will learn that you do not have to always say yes. Often, there are other people who can do the work. You will learn that if someone gets a touch cranky when you say no, that’s not actually your problem, but theirs. Cancer will teach you that a lot of people have been taking advantage of your generosity and kindness for a long time. The earlier you learn to say no, the better. Lesson six – Travel. Travel as far and as wide as you can. Don’t worry about taking time off work - it will always be there when you get home. As a wide-eyed, borderline fan girl law student, you and your friends will be dumbfounded when the Hon. Justice Michael Kirby tells you how he drove across China and Russia in a Kombi when he was a young lawyer. At the time, you will be so busy applying for law internships that you can’t fathom the idea of taking that much time away from your floundering career. Do it. There are so many places for you to explore. Go to Africa while you can and yes, Europe is amazing but there are a lot of different places to explore beyond Europe. There are so many places to go but, by the time you’re 34, cancer means you won’t be able to travel anymore. These are the lessons you will learn. You will wish that you had known them before getting cancer.
Are you a breast cancer survivor who happens to be childless?
I have been a member of this online network since 2014, just after my diagnosis. At a recent breast cancer seminar at a city near where I live, something hit me like it hasn't in all this time, the subject of survivors who happen to be childless. I thought to myself, "Noone talks about this. Why?" This has led me to do my research, as you do, I found this demographic of women are at higher risk of breast and ovarian cancer. It is explained this way, you are at a lower risk of diagnosis if you have children. Interesting I thought, Nuns are at a higher risk of breast cancer and ovarian, not that I am a Nun but an interesting statistic that gets me thinking. Which brings me to why I am posting. I am putting it out there in a courageous way to see if there is another like me. Courageous because for 30 years after my extensive efforts to go forth and multiply I walked away childless. The one thing I learned was to keep it to yourself as I found there were lots of people willing to give you their advice, just like they do with breast cancer 'cures', an emotive issue is best kept to yourself for your own emotional survival. I am running a personal survey just to see if there are other women within this network who are in the same boat as me. Does anyone else feel a little left out when sitting in a seminar and not to be included in the discussions? I tell ya, there is a real sense of alienation, but culturally we are told to, 'just get over it', which is fine and life for me has been fulfilling in spite of it all. My GP doesn't know of another single patient like me which isn't very encouraging in finding my tribe, my mother always said I am different when all you want to do is be like everyone else. So please step forward if you are like me or if you know someone who has a similar story. I feel it is a subject that needs discussion and inclusion because in society we, the childless women are 1 in 5, by choice or by circumstance. Cheers Janet
still in shock
Five weeks ago I was diagnosed with invasive ductal carcinoma in both sides. I have had surgery and have a oncology appointment next week. The pathology result down graded the cancer from 2 to 1 and lymph nodes were not affected. So some good news in a not so good situation. Everyone around me has been so supportive and positive. It is very hard to tell people the emotional devastation I am going through. In the scheme of things my situation is no were near as bad as some and I keep telling my self that I should be greatful for a good pathology result. But still the tears flow.
Election called
Hi everyone - it has been a while since I have posted myself but as always I love the many messages you share with each other that I have a chance to read. Last week Vicki (our Director of Policy, Advocacy and Support Services) and I were in Canberra meeting with both the Minister for Health and Shadow Minister to take them through our policy priorities. I hope you have had a chance to read them: https://www.bcna.org.au/latest-news/bcna-news/bcna-policy-priorities-2025/ These are driven by your experiences and where our Network wants the Australian Government to invest. Keep any eye out on our social media and through the Online Network on updates on commitments the parties may make. Love your work KPBreast Cancer & it's psychological affect on your Mental Health
I haven't listened to the broadcast .... but this is very much a topic close to our hearts. Our diagnosis and treatments really DOES muck with our brains ...... sometimes, longterm, even forever. PLEASE - if you are in any sort of turmoil with your treatment, make sure you chat with the helpline here 1800500258 or try & see a psychologist to chat about your distress. https://www.breastcancertrials.org.au/research-blog?name=the-psychological-impact-of-breast-cancer&fbclid=IwAR05x0kVWb12DTLG4JCg_daVJy88D6C23zaJbRklZj3mcJUOYosN7Xo1bfE
Weird Financial Pity Silverlining
Just thought - I got diagnosed 3 months ago after a lumpectomy and now after a single mastectomy at the end of February I realise I’m about 500 to 600 dollars better off. I don’t know if any of you will recall but when I had my mastectomy my surgeon told me the next day that my lymph nodes were swollen and therefore I had stage 4 breast cancer and was in the fright of my life. He sent me to get a CT scan in my wheelchair whilst blubbering away and scaring everyone else and putting my husband and I through hell. The anaesthetist actually came in to see me the next day too and told me how sorry she was. Anyway, it turns out that my CT and lymph nodes were all clear and I’m actually 2a and my surgeon was a complete fu***it (needless to say I have an appointment with a new surgeon in a few weeks) but I have just realised I never got a bill from the anaesthetist for the gap which her receptionist told me would be between 500 and 600. Obviously felt sorry for me!! At least I can use that money for a wig and prosthesis- silver lining.
Just touching base :)
Hi lovelies I've just got back home from surgery last Thursday :). On the pre-op scans they found a 2nd mass which had been "overshadowed" by the main mass on previous checks, so that's been taken away as well. Lumpectomy (with the 2 masses) & full axillary lymph clearance (lymphs were already proven as malignant in the initial biopsies) & I must say that the surgical team did a very lovely job with the lumpectomy :) I have the surgical follow up appointment next Friday (before people start their Xmas breaks) & the 1st MDT meeting after Xmas will be 7th January. So it's a quick trip down to Tassie on New Years day to see our daughter. The poor thing only just moved to Tasmania & 2 weeks later I rang her to say "It's all okay, BUT Dad's just had a Heart attack!" & then 2 weeks after that I rang her again to say "It's all okay, BUT I've got Breast Cancer!"... I figure we'd better see her just to prove that we really ARE both okay before we start getting organised for the next steps, with Chemo starting sometime in January :) Happy holidays to all everyone. <3
Today's feelings in poetry
Lucky So lucky, people say. That they caught it when they did That it hasn’t spread That they got it all That I have insurance So, so lucky. That my friend told me about her cancer That I finally moved my arse and Went and had that mammogram That I live in the lucky country So lucky That my prognosis is good That my job will be there for me That I am surrounded by family and friends With their love, soup and casseroles. Lucky. That my new set are perkier Smaller, Scar-rier, numb-ier. A bit lopsided Like me. Some days though, I just feel A tiny bit Unlucky.