Survivorship: The Part We Don’t Talk About — But Should
I’m 11 years post my second breast cancer diagnosis, and I’m grateful every single day to still be here. I work five days a week, I show up, I contribute, and I keep moving forward. I’m proud of that. But I’ve also learned that survivorship is far more complex than anyone prepared me for. After Taxol, 5‑FU, and a DIEP flap, I now live with: permanent hair thinning, weight gain, early menopause, neuropathy, hand‑function issues, all‑over body cramping, heart failure, cataract, blocked tear ducts, damaged veins, and numbness from nerve damage. I’ve adapted. I’ve rebuilt not just physically but mentally/emotionally. I’ve learned to live in a body that’s different from the one I had before. But here’s the truth: we don’t talk about this part. Not with friends. Not with colleagues. Often not even with each other. We carry the long‑term effects quietly. We push through because that’s what survivors do. We’re grateful — deeply — but gratitude doesn’t erase the challenges. I’m sharing this to encourage honest conversations. Because survivorship is real work. Because so many of us are navigating long‑term effects in silence. Because speaking up helps others feel less alone. If any of this resonates with you, your experience is valid. We can be strong, grateful, and resilient — and still tell the truth about what survivorship really looks like.
Hi from mum2jj...16 years on.
Hi all, Firstly I don't get on to the main forum discussion much these days, between work and being a group leader of the Choosing Breast Reconstruction group. I've been meaning to pop on for days and share some good news and hope to those newly diagnosed. It was my birthday last week, and the day before it suddenly struck me. I was about to turn 63 and was not sure how I felt about it, and then it dawned on me. That very same day 16 years ago (day before my 47th birthday) was the day I first heard the words "you have breast cancer". It's amazing that I am now at the point that i don't think about it all the time, and I had almost slipped into feeling sorry for myself that I was getting "old". I very quickly changed perspective to gratitude! I now have 2 adult children who were primary schoolers at my first diagnosis. I did not think I would get there. I really have much to be grateful for. My breast cancer story was not always easy. I had a recurrance 18mths after first diagnosis. Yep got to do chemo twice and radiation. Along the way I have lost some beautiful friends and had others go through second diagnosis and mets. It really is a lottery. However I know how l have been lucky up until now and wanted to share a good news story for those recently diagnosed and those going through a recurrance. My heartfelt love to all those struggling and I hope my story can encourage those newly diagnosed. I vow never to whinge about my age again. much love Paula xx
Exchange Surgery and 4th Cancerversary 💗
Hello to everyone and Happy Easter 🐣🐇🪺. I’ve been a bit quiet on here, just focusing on life after breast cancer I guess, going back to work, trying to get healthier etc. Today I’m posting again because it’s my 4th cancersary 🎉, and I’m also 2 weeks post my third surgery since this whole ride started. This was the surgery I was most excited about though, because it was my recon surgery, i.e. bilateral exchange of expanders to implants (I’ll be posting a picture story soon in the private recon group for those interested). I had my expanders in for a record time, just shy of 4 years 🤦🏻♀️😄 (surgery kept being postponed for various reasons) so I might be able to enter the Guinness Book of Records 😅. The thing is, I’m absolutely terrified of surgery and pretty traumatised too, due to what happened after my DMX. It took a change of surgical teams 4 years ago and lots of counselling to be able to get to this state of being ready for it again. Thanks to all my hard work and my BRILLIANT specialist team, I got there, and I can’t even express how happy I am with the results 😃. My breasts now look like my original ones, albeit perkier 😏😁. They were an absolute mess from the 4 years of expanders, but my surgeon fixed my pockets perfectly and used implants that look very natural. The whole experience, despite stress from my previous trauma, was very easy and smooth sailing. I am beyond thankful and grateful to my team (Dr Eva Nagy ♥️ and Fred 💙) because without them this wouldn’t have been possible 🙏🏻🙌🏻🍀. It might seem like something so simple, but it is so important to healing as anyone going through this (all of you) will know and understand, because it means getting my body back to what it was (or to a new normal for those not choosing recon). Actually, better than what it was because I was going to the gym for a year prior, to prepare myself physically for this, and so I am stronger than I’ve been in a long time. Silver linings everywhere 😁. So now, every year on this day, I do something special for myself, as a thank you to ME for everything I’ve endured. One thing this cancer taught me is that I need to prioritise myself, because I was putting myself last before all this. Well, not anymore. It’s a work in progress for sure, but I’m now putting myself at the top of my list more and more often. My message, especially to all the newbies, is that it does get better. It gets a whole lot better. There will be a day and time when you won’t be thinking about cancer all day, every day - believe me! There will even be a day when you’ll forget you ever had it. You do get reminded again because it’s a bit of a ‘gift that keeps giving’ situation, but you find the strength again and keep moving on. It might not always seem like it and I definitely encourage venting and getting all the anger out, and asking for help when ever you need it!! However, there are lots of beautiful days as well ☺️. One more piece of advice: choose your medical team very carefully, because they will either break you or make you (speaking from experience). You are responsible for your life and wellbeing, but with the right medical team, you will have the support you need to do wonders. So, don’t rush this decision. Do research before choosing, and always seek a second or even third opinion if it doesn’t feel right. *Pictured are myself, the day after my surgery so please don’t judge me for looking so terrible, and my beautiful magician of a surgeon on the right 🌸. Lots of love and fantastic health to all 🧿🪷♥️, M XxxHope and cancerversary
It’s my 2 year cancerversary today 🎉. I’m in a really good place within myself, without comparison to how I felt right after my diagnosis, and even before it. I guess I hope I continue to work on myself, so I can be content with life as it is, with reduced stress, and cancer free 🤞🍀💟. I have mostly moved on, but choose to celebrate being healthy every year and my appreciation of life ♥️. M Xxx
I think, I hope I have learnt my lesson. NO is not a mean word
Its been quite some time since posting anything. I do get on and have a quick browse for inspiration. And insight into reminding that I’m not alone and that What’s happening etc someone else has something similar regarding my Life since BC, 4+ long years Back to my TITLE. I was doing alright saying no for a time but back to my old habits, someone asks and I say yes before realising what the impact on me will be. between work and my regular babysitter (grandkids) duties which I love doing. I have over committed myself again and have left myself so tired after the other requests I’ve said yes to, I waste one of my days off in bed after lunch and not able to get up till it’s time to get ready for work. As I’m having my 6 month Oncologist check up next week along with the usual tests before that. I said you are going to have to make other arrangements as I can’t fit it. Organise something else, quickly answered oh I’ll just go stay at ?! Place. Thats when I realised was being used by an 18 year old lazy brat that played on my generosity and sympathy. I’m determined to get my life back. Regular walks Get Back into my hobbies visiting my friends and family again back to healthy eating at regular times. Wish me luck getting it all to happen
I'm not impressed!
TL;DR - If you are a patient at public hospital in Brisbane, check your mammogram & ultrasound appointments. They may no longer be there. I had my second year mammogram and ultrasound today. It sounds so simple! I was diagnosed in late February 2018 by (private breast clinic) and referred immediately by my GP to a public hospital as they have a great reputation for dealing with breast cancer. And at the time, yes, they were fantastic. I was seen within about 2 weeks (on a Monday) and a week later I was admitted and have my lumpectomy on the next Monday. Wonderful! Public system at its finest! Nasty tumour ripped out, sentinel node biopsied. All good. I was assigned a breast care nurse (2 actually who job shared) and had follow ups with the surgeon and visited the Breast and Endocrine Clinic as required. Fantastic! Delays to appointment times but meh, it is what it is. No complaints. In March 2019 I had my first annual check up. Queried the technician about getting a 3D mammogram. Apparently the machine has the capability of doing this but no one was prepared to pay for the licence to activate it and turn it on. Had an ultrasound - technician noted a couple of cysts but nothing concerning. Had the follow up appointment for test results at the BE Clinic. Saw a random doctor who claimed to be some kind of breast specialist. I was also told I'd never see my surgeon again. She said the report was all clear. Yay! Great news! However, when I specifically asked about cysts, she said oh no, there aren't any. Hmmm suspicions raised. I asked about breast density. She couldn't give me a definitive answer. I asked what stage was my cancer (knowing it was Grade 3 but not stage). Oh, the response was, we don't use stages any more. Uh really??? Totally forgot at the time to ask for a copy of the report. When I followed up about a week later, breast care nurses said, not our problem. Email these people. So I dutifully emailed my request and heard nothing. And still heard nothing. Followed up 2 weeks later to be told they had never received the original request. <cough bulls*t> Eventually got the report and it was a drawing with some scribbles on it. Not exactly a professional document. So 2 days ago, I was mentally prepping for my exam this year and received a phone call from Qld XRay at 5 pm the day before my exam saying they are going to schedule my annual appointment. WTF? Apparently the public hospital have outsourced their mammograms and ultrasounds to Qld XRay and did this in November 2019 and obviously didn't tell anyone. Qld XRay also thought my appointment was 4 April and not 4 March. I told her, no no no, it's definitely 4 March and I'm holding the appointment letter in my hands right now. Of course, no availability on 4 March so I was rescheduled to 5 March. Not too bad, just one day delay. I can cope. But how furious I would have been if I'd turned up at the public hospital to find out it had been cancelled with no notice. Thank goodness I did get the phone call. So today I rock up to Qld XRay and I am very impressed that the first thing they do is give me a 3D mammogram. No mucking around with old 2D stuff. Excellent!! Ultrasound very thorough and I'm totally on board with the lovely staff. And the best thing is you have access to a Qld XRay online portal and can see your images within a few hours! No report thought until you've seen a doctor, then it becomes available. Anyway, they contacted the public hospital to get copies of last year's scans and results and hospital promptly tells them that they have no record of me. That there are no scans or results in their system. Are you #(*&ing kidding me? This after receiving a text message today reminding me of my follow up appointment at the hospital for next Monday. So Qld XRay has had to send off requests on my behalf to private breast Clinic and Breast Screen Qld (where I had a couple of scans done about 6-7 years ago) to try and source comparison scans. All of which is going to delay my report getting to my various doctors. So the public hospital - not good enough!!! Not happy at all. I don't know what's happened there over the last 1-2 years but something's not right internally. I shall be very interested to see what happens at my appointment at the BE Clinic next Monday. Sorry for this long and ranting post but I just had to vent. We rely on this stuff to go smoothly.
My Otis Retreat
Hubby and I arrived back from Thredbo on Sunday - after 9 days away - including 5 days in Creekside, the Otis Foundation retreat in Thredbo. We stayed in Sydney for the first night with my brother & SIL, then down the coast to Batemans Bay with another friend ....who has just taken delivery of a gorgeous miniature schnauzer! Talk about drop dead gorgeous! Creekside is wonderful! A massive 4 bedroom home with 3 bathrooms, large lounge & dining rooms & gorgeous outlook to the mountains ..... it wasn't as cold as I thought it might be (that may be changing this weekend tho, with the big cold snap passing thru!) I scored the master bedroom on my own (as hubby snores & I figured I may as well sleep 'well'!) One of the guest bathrooms - There was even a Sauna! (We didn't use it tho!) The river (and golf course) was just a short walk away & I flicked some fluff, to no effect! (I am a better salt water fisho than fresh!) One day was a tad wet, so the boys went for a swim instead I found this game in the Sallies - and it was the HIT of the trip! Everyone wanted to play it!! The 6 piece lengths bend at specific spots & can be positioned in any way they bend, on the board! You try & match the pics below. Some were VERY easy - but when up in the Senior & Wizard puzzles - VERY tricky! This was where the Thredbo disaster was - when the hill gave way & 2 or more Lodges cascaded down the hill, killing 16. :( A very sobering moment. Nothing will be built here, ever. Stuart Diver still lives in Thredbo with his daughter. He lost his 1st wife in the avalanche - and his 2nd wife to Breast Cancer. He is a spokesperson for Breast Cancer. A solitary fly fisho!! The trout were just behind those rocks in the front! LOL We saw some thumpers in this run - my brother & SIL spotting them!! We saw a heap of animals - deer, goats, gorgeous mountain birds ... it was just lovely getting out & communing with nature We had a glorious time down there - and plan on going back to investigate it further, probably using Jindabyne as the base - as it is more reliable with the weather (and has the lake so I can put my kayak in for a fish instead of being shore based only!) I did lots of walking too, which surprised me! Tho the weather didn't allow us to go up & do the Kosciusko walk (thank GOD!) as the mountain tops were closed in every day. We saw a family of 6 coming down in the chairlift in the pouring rain one day - it didn't look like fun to me!! It is just wonderful that families like the Humphries make their 'holiday homes' available to us - and reading some of the comments from previous recipients - it was all very moving. If you haven't looked into an Otis Retreat - I would urge you to. It can be for you alone, or you & your family and/or friends .... they have retreats available in most states (except Tassie and NT.) I understand there are not many in WA :( The only cost to you is 'getting there' and providing your own food and drinks. Everything else is catered for. Take care xx
