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/
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.
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
Health care professionals working with breast cancer patients post diagnosis
Are there any health care professionals who worked with breast cancer patients prior to their own diagnosis, who continued working with them post treatment? How did you cope? After 20 years of working with breast cancer patients I’m struggling with the thought of going back to it when my treatment is done. But not doing so upsets me more than the thought of losing my breasts.
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
Searching for anyone diagnosed with BC in the early to mid 1980s
In 1984 two day before my 29 th birthday, i had my right breast and glands under my right arm removed. I'm searching for anyone who was also diagnosed with breast cancer in the reply to mid 1980s, to compare notes about how they did cope and any effects physical or psychological they carry today.
Phone Contact with Eastern Health Breast and Cancer Centre
Just wondering if anyone else has had difficulty contacting the Eastern Health Breast and Cancer Centre by phone? Maybe it's just me but every time I call I get transferred to an answer machine, either for appointments OR to speak to a Breast Care Nurse and am told someone will call back. And they usually do, however, I cannot always get to their call, maybe I miss it due to driving or some other reason, so it flicks to a voicemail that asks me to ring the same number again - the number that transfers me to the answer machine! Forgive me for sounding frustrated but I am usually needing to speak to a person when I call - I don't want to leave a message to be called back. It's usually taken me all my energy to sit down with my diary or my question, I may even be distressed and needing some reassurance about something from the Breast Care Nurse and so an answer machine just does not cut it! I am not complaining about the staff on the desk, or any of the staff that operate out of this clinic - to be honest, I have never met more caring and helpful hospital staff - it's about the system. I really want to give my feedback but I want it to go to the correct person and I am thinking this would be an administrator? Who organises how the phones are answered? It can't be a case of understaffing - there are usually three or four receptionists on the desk! I also found out that even the Day Oncology nurses cannot phone an internal number to this clinic and have to resort to walking round there to speak to someone. This I find unacceptable. It is a beautiful clinic and the staff are lovely but the system of dealing with patients on the phone falls down dreadfully. Before I give my feedback, I would like to know if there are any other breast cancer patients who have faced a similar experience.
Dealing with cancer while dealing with my own
Hi everyone. 5 years ago today I had surgety for DCIS. 4 years and 9 month later I was diagnosed with early BC. Surgery, radiation, ovaries removed, Arimidex. The whole program. I feel physically fine but the emotional side is a different matter. I have great support and my husband is my rock. Here comes the kicker. Just before my diagnosis in November a close friend of ours went into hospital for cancer related back surgery. His wife has been my support person last time. One week later my father in law was diagnosed with lung cancer. Fast forward to now and our dear friend has passed away and my father in law is recieving palliative care with days to live. I am trying so hard to keep it together. My 2 biggest supporters are suffering and I feel I should be helping them. My wonderful husband has lost a friend, is losing his dad and is trying to help me. How much more can he take? How can I ease his pain?
Blessed breast!
I am sitting here feeling like a breast cancer fraud. No pain, very little fuss, and it looks like no chemo. Whaaaat? I hear you say, but it's true. I have a blessed breast! I had a tiny little cancer, 9.6mm. It was HER2 negative, oestrogen positive. So I'll have to have radio therapy, in about 6 weeks, and some hormone therapy. But no chemo. My journey has been particularly unremarkable. ACT Breastscreen picked up cancer during a regular screening. I went in for further tests including a biopsy. Got the diagnosis the Friday before Christmas and thought "Oh well, it will be what it will be. There's so much advancement with this stuff now that I'm sure it will be OK." Didn't tell anyone, cause... well... you just wouldn't at that time of the year. Saw the surgeon (personality of a brick) in January and spoke to the breast care nurses (can't say enough about how wonderful they are!). Promptly forgot about it again and went on a cruise. Sailed (pun intended) through the op at the end of Feb - in at 3.30pm, out at 5.30pm and last pain meds at the same time on the ward, and haven't needed any since - home the next day. Had a bit of a fright with the swelling, but it turns out it's to be expected from removing even two lymph glands. Gosh it must be bad when more get removed!! A lovely doctor at Oncology showed me how to massage the fluid back to the remaining lymph glands. My advice is to just take it one day at a time. Organise what you need - don't worry about what you can't control. Fingers crossed I don't go bananas with the hormone therapy and undo all of this bragging :smile: Love to you all, and may your breasts be blessed. xxx soooz PS - My daughter suffers from endometriosis, and I can't help but compare breast cancer with endometriosis for education, research, and support. Endometriosis sufferers are really struggling.