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LoisLois
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Joined 6 years ago
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Re: Music: what song you are listening to...invites and answers the question ‘how are you’
my go to song when I need to unleash - Ted Nugent "Stranglehold" or Jimmy Barnes "Working Class Man". at the moment - Pearl Jam's "Alive" has made its way back into my life (my adult kids groan!)25Views0likes0CommentsRe: Go Forth...and live your life!
Hello Lovely Ladies, THANK YOU SO MUCH for answering my question. In the past couple of weeks, I have done some serious research and as much as I hope and pray that the side effects are small, considering how the Lupus was in full flare up the entire time during the treatments, I do not think it is going to give me a break. On a positive note, I have just had the mammogram / ultrasound done yesterday - just in time to meet with the surgical team on Monday to discuss removal of the right breast. It had been discussed back in September, however due to all the problems i was experiencing it was delayed until now. I am hoping he says "Lois, its time to say goodbye!" I can assure you all, I have NO issues with that and to be honest, it will be a damn relief. Having a 22E boob hanging off your side causing lopsidedness and immense neck/back pain for the past year has not been pleasant. It has been pure frustration to say the least. I am ready - pure and simple. I am glad to know that I can ultimately stop it if I choose to but like you have said - I wont know if I dont give it a go. I meet up with the Medical Oncologist on the 15th March, so that will be an interesting conversation. As my kind of BC is in the doctors words "super nasty aggressive" - my initial survival rate was 10-15%. Initially, I was informed the radiation offered was to help out a bit. Not fully understanding at the time what she was implying until it clicked - I went into complete and utter shock. That number has now been hanging over my head along with the question which NOONE wants to answer - has anything changed with the chemo and radiation? The only thing the radiation oncologist told me before telling me to "Go forth and prosper" was all the scans are clear - so far. I came home from that appointment both jubilant and a big question mark posed over my mind....what happens next? How do you stop thinking about the one thing that has been a constant 24/7 companion? Does anyone ever get over the fear of recurrence? Anyway - a truly pure joyful moment in my life yesterday - my 2 year old grandson came and snuggled into my lap and called me "Nan - Nan" for the first time. Until that moment, Blake had persisted in calling me "Ma". Then reached over to his mother's very pregnant belly and said "Baby" - the first time he has said it. Both Eliza and I sat there in awe. On that note - have a fantastic weekend and to my dear friend @Locksley - I hope Charlotte's 21st is amazing! Big hugs and Love Lois. @arpie - did the doctor need to sign off on the magic oil script??? I am wondering if it will help with the extreme aches and pains caused by the LUPUS attacking my muscles and bones?3Views5likes0CommentsRe: I missed my hair and now it is back but what do i do with it?
I lost all my hair during the chemo. At one stage I had one eyebrow (oh so glamorous!) which I promptly shaved off and the odd bit of "fluff" that had grown on my head in sporadic places. Then the eyebrows grew back - oh my god, I looked like John Howard with mad regrowth! Managed to get that tamed into some sort of decent arch in place. Then they fell out again - along with my eyelashes! 12 weeks post chemo - my hair, eyebrows and eyelashes have returned. In fact my hair is growing so well, I have buzz cut it twice to tame it into submission. It is softer, slightly thicker than before and i have little beginnings of curls - my hair was once very thin and dead straight. It is extraordinary how our bodies fight back! I must admit, I did love being bald after years of growing my hair very long. it was refreshing to not have to deal with it. I do miss the ease and care of having no hair but also glad its back because NOONE looks at me with the "pity cancer look"...which is nice because I was concerned there for a while, my kids might actually kill people or smack them for staring! Keep smiling ladies - because you are all beautiful. big hugs Lois9Views2likes0CommentsGo Forth...and live your life!
Hi Everyone, It has been a LONG time since I have been back online. The past few months have been one hell of a road trip indeed. The months away have been spent, trying to get through numerous rounds of chemotherapy, each one systematically throwing endless side effects that eventually took their toll on my health. I spent a fair bit of the time crawling my way from bed to bathroom with months of diarrhea and having a good cry session at how "crap" my life had become (pun intended). I had several trips to the hospital with chest pains that had the doctors pretty concerned, only to realise my body was rejecting the chemo but I persevered till the end. I THINK the doctors thought telling me "Wow, we didnt think you would survive?" was somehow reassuring - ah that would be a negative! Thinking I would get hopefully some sort of break between chemo and radiation was delusional. 3 weeks after finishing chemo, I was laying on my back, topless getting zapped for 6 long weeks. My skin handled the radiation exceptionally well, until 8 days after the last dose, I woke to horrendous pain, the loss of the use of my left arm and covered in about 400 blisters from mid torso to my neck and around my side. I discovered I was highly allergic to the flamazine cream, which created huge open ulcerated sections and I looked like I had been baking myself in a 3000 degree oven. Thankfully, all is healed and I am back to looking "normal". The energy levels are still low, the metallic taste is gone, I can no longer look at a Pork Chop without throwing up and ice blocks are still my favourite go to food! I still need the odd afternoon nap, however one good thing has occurred - I have lost over 11 kilos and feel happier. I must admit, the visit to the Oncologist to begin the next step in life - "what tablet shall I swallow each day?" brought some very interesting information that had previously been unspoken by the medical team. It is amazing when a new doctor takes over from the old one and inadvertently informs you some facts that had been kept VERY quiet, in fact I think the C.I.A. would have been impressed by the secrecy....it has made me wonder whether the rather blase comment of "Go forth and live your life" uttered by the Radiation Oncologist was a standard routine comment, so they can sign you off the books? When the word "IS" is uttered and not "was" when talking about my BC, made my eyebrows raise. Anyway, while I wrap my head around the sheer fact that I have surprised my medical team by actually surviving - no, I am not joking! They seemed to take great joy in telling me that over and over. I am trying to get my life back into some sort of actual semblance of activities that dont evolve around the word "Cancer". Slightly hysterical in actuality considering that has been the number one bloody owner occupier of my life for the past 12 months! By the way - Letrozole (Femara) seems to be the chosen tablet for the next 7 years of my life. I have been researching the side effects and I seriously hope and pray, my body along with its constant companion LUPUS, doesn't resort to throwing every single one of them at me! I am to be honest, dreading it. If you have managed to get this far......I have a question - has ANYONE REFUSED to take the medication and if so, how has it affected you?? I am asking merely to give myself various options so when i see the Oncologist - I go armed with information and not merely accepting their word as gospel. I have learnt over this past year, as much as I wanted to hide my head - I cant and couldn't. I needed to know what I was up against and also in some cases have serious discussions as to alternatives with the Medical team.... just so i could survive. So for the next few months, while I do the routine scans, tests, bone density, teeth check and wait to see the Oncologist again - I am looking forward to welcoming my third grandchild into the world (our first grand-daughter), see my beloved friend get married to the Love of her life and spend time swimming before the cold once again hits us. Life is sweet....hectic but sweet. I can now enjoy simply being LOIS once again.... Big hugs and thank you for reading this! LoisRe: Breast care support nurses/ McGrath breast nurses - Do they follow through?
I was diagnosed in February with Stage 3. From my first appointment with the Surgical Team, my BCN has been there. She has been a tremendous support via phone, email and personal contact. Every single meeting she is present whether it is the chemo Oncologist, Chemo Sessions, Surgical, Wound Clinic. As I also have Lupus, I am her first patient to do so - I asked her to check with any other BCN to see if they had patients who could advise me to any repercussions they might have experience. She told me there is only if I remember rightly just over 110+ BCN throughout Australia and unfortunately non had any with Lupus but it gave me an insight to how far stretched these women are. I can only advocate for my wonderful Nurse Sharon - who seriously has been a blessing. Maybe WE need to advocate for them with a petition to the Government to fund more Nurses through ALL of Australia whether rural, regional or city....Maybe WE should stand up for these hard working Nurses and show our solidarity!!! Lois.34Views0likes0CommentsRe: Chemo and food
I had to start on the paclitaxel treatment - which I did 7 weeks before I had to stop. I am due to begin the AC treatment shortly. I found I could not handle any spicy food which I LOVED! Coffee, beef and pork tasted like soap. I CRAVED sweet things which I dont normally eat!! SALT and tartare sauce became my best mates! Hot chips were hit and miss, however mashed potatoes and gravy were delicious and at one stage the only thing I could eat. Salads and pickles were delicious! However the mere smell of cooking meat had me throwing up! Water with plenty of ice helped and milk got a weird taste. I craved fish - crumbed not battered. But any other seafood had no taste or tasted like rubber. You may like to note down what you can and can't eat as a helpful tip until you settle into the treatment? GOOD LUCK.20Views0likes0CommentsRe: Newly diagnosed
@Louise64 - please do not ever feel embarrassed nor think your diagnosis is any less of a life changing event that others. YOU are undergoing a huge challenge. Noone ever sits in this forum and thinks "oh wow, she got off lightly!" every single one of us, understand the huge toll it takes on our emotions, life, job prospects, daily events, and most important who we are as a human being. YOU are BRAVE. As to the mutliple decisions that need to be made on what seems a minute by minute basis - a good thing to do is take a diary or record information on your phone - if possible take someone with you to all your appointments. Take one day at a time - it will all fall into place as needed. Time does seem to drag especially while waiting for surgery! I sincerely wish you a fast and easy recovery for the surgery and hopefully you will have someone to help care for you - I highly recommend this!!! Big Hugs and remember - YOU ARE BRAVE!!!!!!!!! Lois4Views2likes0Comments
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Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.
