What books helped you? Opportunity to suggest and/or review books
Hi everyone, We are excited let you know about a new page on the BCNA website for book reviews. On this page, we will publish reviews of books that may be helpful to people affected by breast cancer. There are a number of book reviews up already, which you can have a look at here: https://www.bcna.org.au/news-events/book-reviews/. What books helped you? We would love for you to tell us what books helped you when you were diagnosed. You might like to write a review of the book for possible inclusion on the webpage. Reviews should be between 300 and 500 words. Your review might discuss things like: - Did you find it helpful? If so, how? - Is it best suited for particular people, circumstances or situations (e.g. women newly diagnosed, young women, women with metastatic breast cancer, men with breast cancer, partners or others supporting those with breast cancer? - How did you feel when you read it? What parts appeal to you? Alternatively, you might just like to tell us the name of the book and we can try to find someone to read it and write a review. How to submit a review or let us know what books helped To submit a review for possible inclusion on the page, please email your review to the Policy Team on policy@bcna.org.au. Please include your name and contact details in your email so that we can be in touch with you. If you would like to tell us the name of a book that you found helpful, please also email the Policy Team on policy@bcna.org.au.
Advocating for Exercise in Breast Cancer Groups
i just wanted to raise some awareness on an issue that has been bugging me and say something here. i have stopped participating in cancer groups because even though groups like this called "get active and keep well", the general fear and disapproval from other members is if someone starts exercising "more" than the generally accepted idea of what exercise is. anything more than that idea is frowned upon, and people have made me feel so angry and sad for sharing something that i am proud of and something that empowers me. with this group and other ones for breast cancer, after i share information about doing some exercise and training after my surgery and after chemo, i have had comments that really shot me down and basically either flat out said that i need "a reality check", or alluding to the fact that the best thing that i can do right now is rest, NOT exercise, and some had attacked me saying that i am putting myself up to put her down (!!). some saying "i wouldnt do that if i were you". well guess what... they are not me. and i am not them. most of these types of comments i have found came from people who have not had the same powerlifting training as me. or from people who did not have an athletic or regular exercise routine at all prior to diagnosis. and these comments have not only hurt me, but made me feel angry and frustrated with the very little emotional energy i already do not have. what i decide to do with my cancer experience is safe FOR ME. for example, women, let alone cancer survivors are fearful of anything to do with strength training. i will not go into the reasons for this and i will not go into the enormous benefits for strength training for women. but i'll give you an example. yesterday i went to the gym and felt great for it. amongst other things, i did 50kgs deadlift. now, if my best deadlift prior to diagnosis was 3 reps, 3 sets of 80kg deadlift prior to diagnosis, and i lifted 50kgs (3x2) nearly 2 months since recovering well from surgery with full range of motion, and 11 days after chemo, and assessing myself as i go, feeling fine and not really even puffed out, and not even sore the next 2 days, to me that means that it is safe for ME to do this. if i felt not ok before, during or after doing a 50kg deadlift 10 days after chemo i would stop. why would i stop doing something that is manageable? for me manageable means something different than the next person who has had recovered from breast cancer surgery and 11 days out of the first chemo session. i trained nearly for around 9 months prior to diagnosis. 50kg deadlift would be a different story to a competitive powerlifter who can lift triple digits in kgs, and would be different again to someone who only did walking as exercise prior to diagnosis. why are other people not to be trusted to their own intuitions and experience in something they already know? do we need to tell someone how to live their life? not usually. so why tell someone how to go through their cancer journey? i have my surgeon and oncologist's approval and support for powerlifting before, during and after chemo, and i have the utter wonderful and strong support from the fitness community groups. why must i be told like an idiot that i am doing the wrong thing for my body? why tell me that i am not doing what i should be doing? with all the new realisations in the medical field that building stamina, strength and muscle can help to improve the lives of people with cancer even during treatment, and that these increases in fitness and muscle can trigger lots of previously unknown properties for the body to heal itself, generate more energy and stamina to better handle treatment, why is that exercise and strength training is so frowned upon by the standards of 30 years ago? maybe we do not have that much information on the subject but at least what we do know 100% for sure is that even if you don't have cancer, and you did no exercise, and no resistance training, that your body will function very very differently than someone who does regular cardiovascular as well as strength training. you add muscle bone and energy killing chemotherapy on top of someone who doesn't exercise for months at a time, and you get far greater levels fatigue, far greater loss of strength and more difficulty regaining strength after treatment (and guess what helps combat loss of bone density, muscle mass and loss of energy? -strength training). i know that before my diagnosis if i do not exercise for 2 weeks i loose strength and stamina, i feel more fatigued and my lupus will take over and i will be more prone to simply staying in bed. why do people like myself, other fitness pursuing women and athletes who had been diagnosed with breast cancer have to feel like we cannot be supported in a group like this and other groups that advocates exercise? i want to feel like people respect my decisions to do what i need and what i want with my life, especially because i feel ok and great after what i do in terms of exercise. and i want to say to other women here who do exercise/athletic pursues, PLEASE share what you do for exercise! because the community needs to know that if someone knows their body, got doctors approval, and does exercise that makes them feel great not just physically, but mentally and that empowers them, that they should be celebrated! that they should be allowed to say and share and be proud of what they did especially whist going through cancer! you need to share your experience until it is normalised in our society. i have been made to feel so angry and ashamed because i went back to the gym when i felt ok to, during MY cancer experience, and i do not want that for anyone else. i am excited to share this with you as a last note in a couple of links. thanks for those who read and are willing to understand. https://soundcloud.com/abcnsw/resistance-training-benefits-breast-cancer-survivors http://www.abc.net.au/catalyst/stories/4459555.htm <-- ABC catalyst documentary (chemo and exercise) http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0067579 <-- the exercise cancer killer cells research https://www.researchgate.net/profile/Julie_Gehl/publication/294870149_Voluntary_Running_Suppresses_Tumor_Growth_through_Epinephrine-_and_IL-6-Dependent_NK_Cell_Mobilization_and_Redistribution/links/56e954d408aecf036b315403.pdf <-- how killer cells work on tumors 2016 research
I'm not ok ... looking for book recommendations that will chase the blues away
The past few months have been particularly tough. While I remain BC free, my health has really declined in the past year. I spent 2 weeks in hospital in July then I left hospital early to be with my wonderful beautiful Dad who was dying of severe dementia. I am grateful I got to be with him for those last few weeks and hold his hand as he passed but it was an extremely difficult time. I took some time off to take care of my mum, organise the funeral and grieve but am now back in hospital with cellulitis to the face caused by a simple bee sting to the top of my head. This is the fourth time this year I have contracted cellulitis - twice before it lead to sepsis. It's my sixth hospital admission this year (and I don't even have BC anymore). I feel like I should receive frequent flyer points. So over the last few days, I have been feeling a bit down, and for the first time, a bit sorry for myself. I really need to read something uplifting. Any recommendations? Even if it isn't uplifting, maybe a real page turner, something I can't put down. Thanks in advance
Dark Humour is good for your health...
I joke around when I'm going through hard times, its just the person I am. I have a dark and quirky sense of humour that can leave some people perplexed, but for me, its an important way of coping. Scientific studies have shown the value of humour in hard times and I have given links to a few of them. If you feel like a laugh, have a look at the "A bit naughty - but funny!!! Show us your 'naughty ones'! Please note some posts may offend" page and the 'Friday Funnies' pages? https://www.curetoday.com/view/breast-cancer-isnt-funny-but-humor-can-heal https://blog.thebreastcancersite.greatergood.com/cs-dark-humor-therapy/ https://onlinelibrary.wiley.com/doi/10.1111/scs.12203 https://www.fredhutch.org/en/news/center-news/2015/08/cancer-humor-eases-stress.html
Not coping well
Hi, I’m new to this. I have been getting fairly regular mammograms ect for years now due to strong family history of breast cancer. I’m 45 and have always looked after myself physically very well. No one aside from me had any issues until they were in their 50’s or 60’s. Aside from my great grandmother no one has had a mastectomy. So after postponing my mammogram for a year due to Covid I decided I needed to get it done before starting a new job. About a week after re entering the workforce I was told there was a problem. It took 2 biopsies and about 6 weeks before they confirmed DCIS medium grade (still don’t know what that means) and I was advised of my options. The options all seemed pretty awful but a double mastectomy with reconstruction (implants as I was told I’m too thin for flaps), seemed like the safest option but I’m ashamed to say it was also very high on my priority list that I’d look ok after. What irony!!! I’ve had three operations in ten days due to complications. I’m left without implants and due to skin necrosis I’ve lost one nipple and about a third of the skin on both flaps. I’ve just seen a second surgeon for a second opinion and it appears this could and probably should have all been avoided (I believe she said “what’s this?” When she saw the mess I’ve been left with) I had to explain why my skin was so damaged. I can’t have any reconstruction until possibly mid next year maybe later as I’ll lose my job if I have any more time off. I know I should be grateful to be alive, ( the surgeon kept telling me I’d dodged a bullet) but I feel devastated, broken and completely unattractive. My relationship with my partner is at best under enormous strain. Can anyone tell me how they got through losing their breasts and feeling incomplete? I feel ashamed even whinging here about this as I know it could have been so much worse. And yet I’m not ok at all and having a very hard time seeing any light at the end of this.
Feeling challenged by clothes shopping?
I'd like to reach out to other women who find it hard to buy clothes because of changes to their bodies brought about by breast cancer. I'm almost 60 now and have lived with a mastectomy for over 20 years, with a handful of those years as a younger woman dressing around a reconstruction that I had removed back in 2006. I have felt quite frustrated over this entire period with how hard it has been to find clothes with high necklines that don't gape and that also disguise the imbalance I have in my breast shape and nipple outline. I've never regretted having the mastectomy - but have been really surprised at how down I would get with clothes shopping, for I consider myself to be a fairly strong and resilient person. Over a decade ago now I surveyed 423 affected Australian women about difficulties they experience - and realised some of us live with quite a significant and silent problem. About two years ago I approached the fashion industry to see what could be done for us generally, after struggling for months to find an outfit for my daughter's wedding. I met with some very supportive retailers and from there sourced a web developer to build a fashion site tailored to our needs. It includes a filter that enables browsing by selecting for a whole range of design features that women after breast cancer seem to look for but struggle to find - e.g. loose sleeves for lymphoedema management, high necklines and disguising patterns to name a few. The site is called Pink Collective Styling and it's listed within the BCNA Service Directory which is found under the Menu Tab "Understanding Breast Cancer", then selecting for "Find Services & Support Near You" and then "Physical Appearance Support". This has just been a subject that has got under my skin over the years because I feel it's an unnecessary burden to have layered on top of all the tough decisions that go with breast cancer and getting on with life. I am keen to hear from anyone who can recommend a fashion label or retailer that you've found offers a great range that 'works' for your needs so I can continue to grow the site and make it as broadly useful to the breast cancer community as possible. I'd also be very keen to hear where the site doesn't quite cover your particular needs if you too find clothes shopping a struggle. Julie
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
2 years and a third of a breast ago
This time two years ago, I was at my mum’s house in deep devastation, all cried out, shock manifesting in my body all over, listening to my cat purring, stunned and numbed and quietly sitting with the new knowledge that I had stage 3 breast cancer. Making a pact with myself to either fight the fucker and live or hurry up and die. Tonight I’m looking back at that girl and the tears are in my heart instead of in my eyes. Ah geez it never gets any less painful, it just nestles deeper into your memory and is more buffered. ❤️
Long messy ramble - fertility after BC - needed a vent (thanks & sorry!)
Well once again I havent stopped by here for a while. I have been feeling too sad and needed to get my thoughts sorted out a bit better before trying to write it out. (this website is very cathartic) In December I decided to be proactive with the idea of starting a family since I had been given permission to stop taking Tamoxifen (Yay!). I excitedly went and had a blood test to see what my ovarian reserve was like after chemo/zoladex/radio. Unfortunately the results were so low we were told that we would have to do IVF as soon as possible at a cost of over 12k (which we dont have) but the specialist wanted me to have another blood test in Feb 3 days into my period to see if my AMH results improved at all. I had the original AMH test very soon after finishing tamoxifen and my Dr thought it may have influenced the results. My result in December was: 2 At my age (37) it should have been between 17 and twenty something (27?). This news was just heart breaking. I know that IVF doesnt work for everyone and is a crazy emotional rollercoaster that costs money we just dont have. I started looking into accessing my Super which apparently you can do for IVF and there is some company that helps with the from at a cost of $200 Anyway. Waiting for Feb to have the blood test was a long wait so we decided to just give it a go naturally in the mean time. I started taking the right vitamins and ditched the condoms. I had been feeling a bit weird and started to wonder if we had managed to beat the odds so off I went to buy some home pregnancy tests. They were positive! Straight to the GP the next day to confirm with a blood test and yup. I was pregnant. We just couldn't believe our luck! Being pregnant after BC treatment automatically deems you 'high risk' so I tried desperately not to get too excited but it was just impossible not too. When you can feel your body changing there is no way you can not think about it and all my blood tests were coming in with good numbers so things were going well. Being high risk means you get sent for ultrasounds much sooner than normal so we had four all up. At the 3rd we got to see a little squiggle with a heart beat and by ultrasound 4 its little heart had stopped. I think it was called a missed miscarriage. Its when the baby stops growing but your body doesn't realise. I was still getting all the symptoms of being pregnant but it wasn't ment to be. The standard next step is to wait 2 weeks to see if your body passes it all naturally, if not you need to go in for a procedure. It was the hardest 2 weeks ever. I couldn't go to work as I was convinced the final part of the miscarriage would start while at work and it takes me an hour to get home on the train - there was no way I was going to spend and hour on the train bleeding and bawling my eyes out! I ended up needing to have the procedure which went well. By that point I was just happy to get closure on that front. So it has been two weeks since the procedure and I now have my annual boob ultrasound and mammogram next coming up next week. While I was pregnant my 'normal' boob was crazy tender where as my operated on boob was just occasionally feeling weird. Since my hormones have been coming back to normal I have had a whole bunch of pimples and my operated on boob has been feeling weird more frequently under my scar. I am so emotionally spent that I am now stressing more than normal about the upcoming check up. I was only pregnant for 2 months but my cancer was hormone positive. I have read stats that pregnancy doesnt cause cancer but as I said, I am emotionally wrecked at the moment, the combo of hormones and not sleeping doesnt help! I havent had time to fully process the miscarriage yet. I know it sounds dramatic but I am scared that this was our one and only chance. I have always been a very positive person and after going through BC I thought everything else would be a breeze. I couldnt have been more wrong. It has taken me awhile to figure out why I am not handling this as well (hahaha) as I did BC but I realised that my escapes during treatment were facebook, tv & movies. It seems at the moment every facebook post is another friends pregnant belly, pics of adorable babies and people posting about how amazing it is to be a parent. TV and movies are just as bad! While I was pregnant I was researching baby stuff online and now all my pop up ads are baby related. There just seems to be no escape! Logically I know that we can try again and IVF might be an option money permitting. I also know that if we cant have children it isnt the end of the world - I mean. I beat BC! I should be happy right?! I guess I am just grieving. Looking forward to progressing to the angry phase instead of sad. There is no real point to this ramble. I was just hoping that having a little vent would help. I thought things would be easier since treatment finished but I guess the roller-coaster ride continues.
