What doesn't kill you makes you stranger. And strangely more able to cope.
I got laid off work yesterday, like many of the nation's bottom dwelling disposables. Guess what? It's OK. Two ding dong doosey run ins with BC may have left me scarred and misshapen, but bloody hell, it makes you tough. So. Unlike many who haven't stared down the barrel of an obviously loaded gun, we've learnt how it feels to be under threat. We know panicking doesn't help, even though it's a natural reaction. We are uniquely experienced in the art of getting people to stay the fuck away from us. We understand being poor and a bit bored isn't the end of the world. We know that for some it doesn't end well, but many survive. After a struggle. That the odds on that one can't be calculated or manipulated. I'm going to stay home and do bugger all for a few days. Then I'll contemplate the next six months. Hang in there, thrill seekers, this is going to be an interesting ride. MXX
Stress levels
I have worked ten hour days for the past ten days and have been on call for the other fourteen hours of the day. I was a bit concerned about having a meltdown stress attack. So firstly, a regular came in and was overwhelming me with his problems and loading them on me. I was okay but on edge. Then everything went splat. Online bookings doubled up and I couldn’t fit people in and in trying to fix it up I came across a massive mistake made by a previous manager which HAD to be fixed urgently. Five abusive customers and three days later I have nearly finished sorting it out. Prior to BC I would have struggled. Two months ago I would have had a meltdown. I did it! No meltdown but a huge sense of achievement. My emotional inability to cope has been the hardest for me to accept. I still have brittle fingernails, powdery toenails, psoriasis on my eyelids and cracked teeth. But the physical annoyances I can deal with, if necessary. To everyone who is struggling emotionally, you will pull through. Maybe when you least expect to, but it will happen. I may still have days where I struggle to cope, but everyone does. I may have meltdowns, but that is okay. Sending huge hugs to all of you wonderful beautiful souls. Your support and encouragement has helped me in so many ways. I only hope that I can support and encourage others as you have me. Thank you
Two months after finding the lump
Hi BCNA community, Today is exactly two months since 14 June 2018, the day I found the lump in my right breast that changed everything. I thought it was as good a reason as any to introduce myself and summarise my journey so far. It was cathartic for me to get this all out - but is longer than I intended ( so I fully understand if you skim or don't read it!). I am 41 and live with my partner and three cats, we don't have children. Discovery and family history Two months' ago, I put my hand on my right breast and felt a firm lump. My partner felt it too, to make sure I wasn't imaging things, as it seemed to have come from nowhere. I previously found a lump in 2016, which was a fibroadenoma. This lump felt different. I have a family history of breast cancer on my fathers' side. So I knew it was important to get it checked. After my GP examined it, she arranged an appointment the next day for a mammogram, ultrasound and biopsy. I knew then what she thought it was, although she tried to reassure me that it might be benign. Scans and biopsy First up was the mammogram, starting with my left breast, which while uncomfortable, went seamlessly. Next was the right breast. The lady seemed frustrated with me for not following directions properly, but it hurt so much I burst into tears. Up to that point, I had been almost numb about it all. She offered to get my partner from the waiting room, but I thought I might get more upset, so I sat in the change room until I regained my composure. Following an ultrasound, a doctor performed a core biopsy and two fine needle biopsies of other spots (since found to be fibroadenomas). The doctor told me that his job was to be thorough and prepare for the worst case scenario, and that I should try not to think about it until I got my results (which of course had the opposite effect). Diagnosis My GP told me in a factual and caring way that I had a 24 mm ER/PR positive tumour (the HER2 results were unclear), and while it would be a matter for the breast surgeon and oncologist to assist me to decide my treatment plan, I would likely need a lumpectomy or mastectomy, followed by chemo, radiation therapy and hormone treatment for 5/10 years. Everything she said has turned out to be pretty spot on. The most difficult part was next - telling my partner and parents. Further tests and surgery As the breast surgeon my GP referred me to in Canberra was away, I went to one in Sydney. The breast surgeon said my family history was strong, and referred me for an MRI. While the MRI was costly, it was important to determine what surgery I required as my breasts are dense and the mammogram and ultrasound were not that clear. (I had no idea my breasts were dense or this affected the reliability of the results when I had previous scans in 2016). The surgeon repeated that my pathology showed I would likely need chemo, radiation and HT. On July 27, I had a lumpectomy, which successfully removed the tumour, and a sentinel node biopsy, which was clear. The day of surgery was tough, because I had a migraine. Thankfully, I recovered and the surgery proceeded. My breast surgeon personally called my partner afterwards to let him know that it went well, which he really appreciated. All up, I have had six trips to Sydney, and my partner or parents have accompanied me each time, their support invaluable. Next stop -chemo Chemo starts next Friday, 24 August. I had my first appointment with the oncologist last week. Just before the appointment, further results came in that it was HER 2 positive ( a previous ISH test reported it was HER 2 negative). As a result, I will have 12 months of herception. I was also advised that the pathology showed the cancer was aggressive and fast growing. I had a choice between two types of chemo - four cycles of TC, or 6 cycles of FEC-D. While the FEC-D may reduce the likelihood of recurrence by slightly, it was also more toxic with additional side effects. I was given a couple of days to decide and read some material, and I have decided on TC. It was a difficult decision after only a short discussion with the oncologist, but now it is made, I want to proceed without regret. I have also now had a bone scan, CT scan and heart scan in preparation of chemo. Work? As for work, my GP suggested taking at least 6 months off, if not longer to focus on my treatment and recovery. My work is open to me either taking the leave or working part-time, if I can. I think perhaps I should go with my Doctor's recommendation due to the likely/possible side effects from chemo, other treatment as well as fatigue and the emotional impact of it all. I would be interested to hear from others about whether you could work during this time. Throughout this, my partner has been by my side and my parents cut short a long anticipated trip across Australia to provide support. I have still felt lonely and adrift at times, but it would be so much harder without love and support from close family and friends. Some people have been a bit disappointing, but that's how it goes. To end on a happy note, a month ago, we got a beautiful kitten from a pet rescue to join our other two cats and he has brought a lot of joy, laughter and cuddles.
The gift that keeps giving 😞
http://liz.oriordan.co.uk/CancerBlog/moving-on/?post=one-door-closes I just received this blog post in my email What Liz has to say is all so true and so devastating. I've been navigating loss of job & identity since before my BC diagnosis nearly 4 years ago, but bc continued to take. I developed lymphoedema very soon after surgery, going into my first sleeve at the 6 week mark. At the time I was working in a clinical nursing capacity. I continued in that job for around 6 months, during which time my very supportive workplace tried to find as much non clinical work for me as possible. In the end, as I was only working 2 days a week, but needed more days financially, I decided to look for alternatives. I was very lucky in the last 2 & 1/2 years to have found 2 non clinical nursing roles, that I've thoroughly enjoyed. Like Liz, if I'd been working in the cancer sphere, I don't think that I could have coped with that emotionally. Just shows how cancer doesnt discriminate. I'll be thinking of Liz, & wishing her all the best as she moves in to this next phase
What do you do (or did)?
I've found that I'm thoroughly intrigued by the work that people on this forum do (or did). I read that people are wondering about continuing to work or not, have retired or are looking for work and sometimes they say what that work is but often not. As for me, I'm a librarian by profession and, due to the logistics of having school-aged kids and living too far from anywhere, I'm working as a school support officer in the library at the secondary school that two of my kids go to. Currently on leave without pay but can't wait to go back. I love that my manager gives me my head to do the fun library stuff such as selecting material and reader guidance, and helping students organise activities, and I love working with that age group.
What the heck is going on with this BC thing????????
Ok, so I know the figures are 1 in 8 or 1 in 7 depending on which article you read but honestly. When I was diagnosed I knew one of my friends sister had had breast cancer and my family history 3 generations ago. That was it. I would see the bookings come through at work averaging one or two breast surgeries a week and sometimes there would be a few weeks with none at all. Now. WOW! 4 - 6 a week with the majority being 45-55yrs and a definite rise in under 40's. One of my friends mother in law diagnosed last year and now her mother last week. my daughters friends mother, a close work collegue a couple of months ago, a collegues sister a week after that, a collegues daughter around the same time. One of the senior medical consultants. A client drops a horse off to me and has to run or she'll be late for radiation! Bugger me. I get in to work today and ask where so and so is. "Oh, haven't you heard" She's been diagnosed last week and is off for bilat mx and ax clearance. All of these people I know in my little circle diagnosed within the last 12 months. Seriously what the heck is going on?
Welcome
Welcome - Thank you for joining this online group! My name is Michelle and I’m a Program Coordinator at BCNA. My main focus is to drive a new Work and Breast Cancer program. This program aims to increase the capacity of both employees and employers to support employment following a diagnosis of breast cancer. In 2016 BCNA conducted research to identify gaps in information and support in the workplace for both employees and employers following a diagnosis of breast cancer. This program will deliver a range of support initiatives to fill these gaps and will include resources, an advisory (information and referral) telephone service and peer to peer discussions within BCNA’s online network. How can you help with this program? We’re wanting to start discussions within the online network around work and breast cancer. To do this we want to hear your experiences – good or challenging! We want to build a list of key challenges, inform discussions and build a network of online champions on the topic of work and breast cancer. If you feel comfortable – we would love for you share your experience of breast cancer and work with us? Did you have challenges relating to your employment? Did you have a very supportive employer? Were you self-employed? Do you have tips for others going through this now? I look forward to hearing from you and reading your experience in the comments below. You can also contact me on mwhittingham@bcna.org.au or 1800 500 258. Michelle
Just diagnosed with Invasive Mucinous Carcinoma
I was diagnosed yesterday with invasive mucinous carcinoma. I'm booked in for a lumpectomy and removal of sentinel lymph nodes on the 20th February and the regular CT scans and bone scan on 1st Feb. Surgeon has said that due to my age (45) oncologist may likely recommend chemo, radiation or hormone therapy depending on receptors found. I honestly feel like I just enrolled in a new unit at uni with all this new knowledge that I am researching and learning. I haven't found many forums that talk about this type of cancer, less common. Would love to hear from others with same diagnosis. So many thoughts to navigate. I toggle between doing ok and coping and then next minute I'm a mess. I'm sure this is normal. I have such dreaded thoughts about my future and ideas of planning a will and leaving all the passwords for my kids but then I collect myself and try to be positive and strong. I find myself just staring vacantly while my thoughts are racing and my family don't really know what to say, honestly neither do I sometimes and so I say nothing. Looking forward to connecting here and leaning on the support of amazing strong women and getting a well needed laugh occaissionally xx.
One down!!
Well I had my first chemo yesterday and can't believe how well it went. I have had hardly any side effects so far and those I have had have been very mild. I even went to work today. Just hope it continues to go this well. Thanks to the advice and support of all you wonderful ladies I think I was well prepared for yesterday, although the nerves did kick in when I first arrived. The nurses there are wonderful and made me feel comfortable very quickly. So that's one down, five to go and as a lovely new friend said to me the other night...I can do it :) Cath xx
