Listening to Raelene Boyle's podcast is well worth it, as well as Charlotte Tottman's!
We often recommend that new members have a listen to Charlotte Tottman's podcasts on dealing with a breast cancer diagnosis http://www.drcharlottetottman.com.au/my-podcast.html. and I've only just listened to Raelene Boyle's - and it is terrific! SO ... If you've never listened to the interview with Raelene Boyle .... it is well worth listening to. Raelene was diagnosed at the same time that Lyn Swinburne was first starting her support for women with breast cancer (out of a Bakers Delight office!) just under 30 years ago. She was then diagnosed with Ovarian Cancer, twice! She is still going strong & is an Ambassador and founding board member of BCNA https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/
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.Breast 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
Effexor XF can anyone help?
Hi, is had a LCIS lump removed April 2018, begun taking Tamoxifen that Aug but the past few months I’ve experienced a few episodes of anxiety which has really affected me. I went to an Oncologist check up on Friday and she said it was a common side effect of Tamoxifen. She prescribed me Effexor to help but I’m really hesitant and concerned about the long time effects of taking it. The 2 episodes of anxiety I’ve had both came down to worrying about my health and visiting the Doctors btw I’m fine health wise but this whole BC scare has really scared the shit out of me. I don’t know whether to take the advice and take it or see how I go and if it continues to pop up then rethink it. Is anyone on it and can give me any advice please? Thanks
Help, i don't know how to handle the sadness thats coming.
i have to see a very special doctor of my care team tomorrow for an appointment, and it’s the first time I will be seeing her after I heard she has recently been through breast cancer herself. Im terrified. I am so scared of how emotional it might be. I don’t know what I’ll say to her. I feel like a total selfish idiot for making this about me, but I am just so scared I’ll have to face all this grief I’ve been running away from, because I won’t be able to handle knowing she had to go through it all too 😥 I don’t think I can handle the f*#!king INJUSTICE of this disease hurting the Carers who got ME through it. My brain can’t process that. It’s just too unfair. please help me find some kind of strategy to go and be in this appointment without bawling and panicking. I don’t know what I’ll say, or how to be! It’s at 10.30am. And I’m here having a mad worry about it tonight. Shit. Xoxo
Apparently ok to tell someone incorrectly they have stage IV cancer
Got the decision back from my complaint regarding my previous surgeon. For those of you that don’t know my previous surgeon told me the day after my mastectomy, and before receiving pathology results that I had stage IV cancer and was in the fight of my life (his exact words). I was sent away as a blubbering mess with a blubbering husband at my side for a CT scan which turned out to be clear along with the lymph nodes. I complained to the health commission as I thought this was totally unprofessional and caused so much stress to myself and hubby - what would of happened if one or both of us had decided to harm ourselves after this incorrect diagnosis!! Apparently him telling me this based on a pathology report (after partial mastectomy) that said lymphovascular invasion and swollen lymph nodes at the time of mastectomy (which can also be caused by inflammation and I had recently had 2 other surgeries) means it was ok for him to tell me this. They say him recommending for me to see an oncologist for chemo and radiation was fine. They seem to be missing the whole point of the incorrect grading prior to pathology results. Wait until you get confirmation. I wasn’t going to be starting chemo or radiation the next day so keep your mouth shut. I’ll never forget the horrified look on the nurses face when he told me this. I’ll also never forget that after that news was the first time I got on the forum - blubbering away whilst writing posts and getting support from you lovelies. I have sent sent his response to my oncologist for her review as she was confused by his referral letter which was still talking about stage 4 cancer, she had to request the slides so her pathologist could review them as the referral letter didn’t make sense. I’m also seeing my new surgeon in a couple of weeks and will get her thoughts. Im definitely going to be providing feedback to the commission and asking for a possible review!! Sorry for the early morning rant everyone. Tossed and turned all night thinking about this.
Dont know what to do!
I'm struggling at the moment. Our family were meant to be on the holiday of a lifetime in Europe at the moment celebrating our eldest son's graduation from High School. We were meant to fly out on the 28th November but I was diagnosed with BC on the 8th November. I had surgery on the 6th December single mastectomy. Physically I'm recovering slowly but surely. I ended up with 2 infections on the suture line which are finally starting to heal. We have had a torrid 2 years with our youngest son who has made some poor choices and has struggled with anxiety and depression. He has been seeing counsellors and I had put in place some great mentors and this trip was meant to be a great circuit breaker for him but instead we are stuck here while I'll deal with BC. School holidays have just been a nightmare as all the supports around school have fallen away and he's struggling. This morning I wake up to a message and he's taken off during the night. At least he's checked in to let me know he's safe but I'm very stressed. I don't know where he is. I think he's probably struggling with the BC diagnosis on top of everything else now. He won't talk about his feelings with us and I'm so worried. We are a strong supportive family but he's hanging around with kids who's parents don't seem to have any boundaries for their kids. I don't know what to do or who to turn to. I just wish we were on that holiday instead of being here. Thanks for listening.Overseas visitors staying during radiation
I am new here so hello everyone. I have had a mastectomy and a week later had my lymph nodes removed. I start chemo on the 10th of sept for 16 weeks then soon after that I begin radiation for 5 weeks. During that 5 weeks I have a cousin and her hubby coming from America. Am I going to be up to having them stay. I’m the usual go to person that everyone stays with so the rest of the Australian family is a bit in shock that I’m feeling unsure I will be able to do it. Any advice would be much appreciated.
12 months on
Hello im hoping someone out there can identify with my experience so I can shake the feeling of being a bit inadequate. i was diagnosed 12 months ago, had 2 lots of surgery and 6 weeks of radiation treatment. i have a stressful job, aging parents and have built a home - all in the last 12 months. i feel exhausted and unable to focus or concentrate. Have difficulty sleeping and am teary and feeling anxious all the time. Is this something anyone else has experienced? thank you so much for any advice.
Depression,PTSD and BC
Hi all, this forum has been invaluable to me since my diagnosis on May 26 this year. Had lumpectomy ,left breast,including loss of nipple, clear margins, nodes all clear. Yay! Stage 1, grade 3.About to start chemo, TC, on Thursday. Have lots of support too, I am very fortunate. I feel as prepared as I can be.....everyone on here’s advice etc. and lots of my own research. I have had clinically diagnosed major depression for about 20 years and then added PTSD from an incident about 12 years ago. Now BC. My gp has explained that often people with mental health issues cope very differently with physical illness. Because I can see what’s wrong and actually do something about it, meaning surgery , chemo etc, I can deal with it. who would’ve thought I’d be saying yay for depression!? Anyway, I was at first, very upbeat, not scared, sleeping fine.....here comes the rant......post surgery now , I hate the way I look, I am terrified of starting chemo and don’t want to get out of bed. Yes, I have counselling all booked in and my gp is seeing me fortnightly. I have so much to be grateful for, and I am. Anyone able to share their mix of Mental health and BC? Hoping I’m not alone. Best wishes to all.xxx