Triple Neg, diagnosed 4 wks ago, have had 2 cycles of AC chemo - I wonder what has happened?
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Hi @Shellshocked2018 - Your personal journeys rekindle hope and belief that this can be and will be ok, thank you xxxx
I see and feel the intensity of the waves and they scare me, the demands are greater with depleted energy. I try to refuel by doing what I feel my body needs of me and half my energy is used up looking for ‘me’ as I’m wandering around ‘lost’.
I believe and trust that if this shitfest has such a strong hold on stripping one’s life apart and our body, mind, soul, spirit can still while wounded, bandaged, pained, confused stand up to it - there are cavities of wellness and strength inside us which hold greater power for survival. I am clutching on...weakly at times but trust the natural bodies healing power. Maybe I sound whacky (?)
Can do this
Can do this....
Many, many thank yous xxxx
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Tasia , you Can do this, and YOU HAVE GOT this.
The power of the mind is unbelievable, meditation and mindfulness will get you through the bad days.Stay positive.
Sending hugs xx
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Dear Shellshocked2018 - your post has arrived at perfect timing, feeling deflated and dreading tomorrowʻs chemo. Just when I think, I have gotten on top of 1 or 2 symptoms another jumps out like an annoying jumping jack. I have a pain under my right arm pit and a tender (swollen maybe right side throat gland). The good news, the mouth ulcers and oral thrush have eased up and the face rash has taken a sicky and left me alone for awhile :-) xxx1
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Dear @Tasia,
I'm so sorry you are having such a rough time at the moment. Maybe this online event will help answer some of your questions and give you some hope to aid your recovery. I hope so. We all need support. Best wishes, xxx
Breast Cancer Trials Q&A Event from 6-7pm, 7 October 2020 (AEDT).
"We have a wonderful line-up of esteemed breast cancer researchers who will be speaking during the event and ready to take your questions.
This has been an incredibly tough year for both breast cancer patients and their treating teams. So this event aims to offer a safe and informative opportunity to hear about the latest in the following important topics:
Breast Cancer Trials: Research Update
Breast Cancer Myths
Mental Health and Breast Cancer
Breast Cancer Recurrence
To watch the Q&A, please click on the following link and enter your details:
https://webcast.gigtv.com.au/Mediasite/Play/38c05001e60a46b1b01ecb7d25b8727c1d
Should you require tech support, please contact: https://www.gigtv.com.au/support/"
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Hi @Tasia,
Sorry you need to be here but im sure the support you get will help. Ive just bought 3 packs of breast cancer buns from bakers delight to support it ! So important the connection thing.
Im in round 4 of ac and I wasn't prepared for the cumulative effect. Ive been in bed for 4 days and just today started to find energy. To me chemo is like the dementors from Harry potter. It sucks your physical goodness for a while. But I guess its the point. Kill those fast growing cells and regrow better ones. I still have 12 weeks of taxol and im bracing myself. I was grumpy as hell last chemo but I just had to drive through it. None of this is normal and I can't be normal.
Cry if you need to, rage. Whatever you need to get by. There is no right. Just surviving.4 -
You’re most welcome Tasia,
Happy for you to message me privately , happy to help you through this roller coaster ride.
Take one day at a time, be kind to yourself and go with the rolling waves.1 -
Thank you for the posts - everything from story sharing, experiences, suggestions, advice and overall support.
@Dory65 - I’m sorry to have missed that event, I believe I would have found it of value; yesterday was a crazed day!
@Michelle_R - sounds like we are on identical treatments and on similar time lines. It all sucks.. I’m sending lots of caring energy your way x
@Shellshocked2018_ - 🍃🌼🍃 you pop up just when I need that extra helping hand...many thanks.
My Update...
Had the Onc apt and the scheduled chemo AC 4th cycle yesterday. The previous night I started to notice my temp rising and the pain under my arm and throat gland worsening. Called the hospital, triage suggested usual advice. I made a health executive decision and waited for the morning Onc apt.
I tumbled around with emotions, questions and doubts. I tried to keep a positive tone but felt and looked like total ’shitfest’.
I couldn’t have chemo - I had a fever. Had a series of tests which confirmed another infection and deep vein thrombosis in my right arm. I don’t mind weeping, having a meltdown or falling apart - it’s a human experience but what aches my heart and flattens my spirit is the constant something surfacing, lurking around waiting to make its grand entrance.
That was yesterday, took the new meds, licked my wounds and went to bed.
Today I woke up, walked to the supermarket (only 3 shoppers there at 7:15am), made myself a little chicken soup and started to get myself ready for my work phone session. Managed the day, somehow...physically I felt the ouchies, mentally I was powered up as best I could.
My place of vulnerability - I’m scared that if my mental reserve runs dry, how will I cope? How many beatings can a body, mind, soul, spirit bear? The ammunition chemo carries kills the bad guys - how bad is the damage for the good guys?
Sorry for for the long post...1 -
Hi @Tasia
Your mental reserve will never run dry. Yes it’s soul-destroying, this whole process, but you have it in you to not only survive but also thrive. Continue to do good things for yourself, such as that chicken soup, anything that makes your heart sing. That’s very important right now. The little pleasures, even if they are accompanied by pain. You know you’re going to get through this, you’re holistically strong enough, it will just take a bit of effort. And the crying and raging def helps. Falling apart, screaming, whatever, do it. Then put on some music and sing and dance. Have an out of body experience.Also, ask for a psychologist if you haven’t already. I’m not sure if I’ve already mentioned this, but I asked for one a few weeks back and she is a godsend. Dealing with my mental and emotional pain is def helping me immensely with the physical.Sending you lots of healing 🐞🦋🍀🌻0 -
Hi @Tasia,
So sorry you've been having such a horrible time. In the past, because I was physically strong and healthy, my mental strength was able to allow me to get back up again with each of life's beatings. BC diagnosis shock, treatment and drug side effects since diagnosis November 2019, have left me without that mental or physical resilience for now. So, I've started seeing a counsellor as well as trying to do the best I can re exercise and diet. I'm not winning yet, but I'm glad I finally asked for help. My GP gave me a Mental Health Plan which subsidises some of the cost of the counsellor. Always priding myself on my independence and self-sufficiency has resulted in the opposite of a support network and helpers around me. I still work full-time, care for my elderly parent and support my adult son...Soldiering on as if nothing has happened has not been good for me. What I'm getting at is - you need to rest, recover, ask for help. If it's possible to stop or reduce your work hours or take much needed sick leave, do it now!
I made a new discussion with the link to those recordings. It sounds like you have too much on your plate at the moment, so just watch them when you have time. Nothing very momentos in the discussions, but so good to know we live in a country with the people and resources who can and do make BC their focus, and who try to make a difference.
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So true @Dory65, you sound the same as me. Always so proudly independent, with a I-can-def-do-this-alone attitude. It took years to finally start seeing a psychologist for my panic attacks a couple years back. Admittedly, it also took a few tries to find a good psychologist, but I’m SO happy with the one I have now. She’s also free through the Kinghorn in Sydney. I’m kicking myself for not asking for one years back, and also thinking could I have avoided getting the cancer if I had. But useless to dwell on the past, so I focus on my psychological and emotions wellbeing now as much as my physical. Also realising I am just as strong as ever, but also human, and def need this help. Plus I need to rest more than before while I recover from surgery, radiation, hormone therapy etc. None of this makes me weak, it’s actually making me stronger and I feel sooooo much better and happier than I have in the last 10 years. I just hope it continues, and I hope we all recover from whatever shit phase we’re going through in this breast cancer spin cycle 🍀❤️P.S. You are definitely winning. It may not be very obvious now, but you are winning 👊🏻💪🏻😊2
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Hello @Dory65
I read your words and pause. Holding them like I would a fragile nest housing a wounded bird. There are many moments I feel like that wounded bird...and I imagine we each feel those moments as passengers. It is not us that is gripping the steering wheel. At times, I feel like I’m a hostage, dumped in the boot feeling the bumps, the heat, the fumes, the lot. Reaching deeply for what remains of our own inner strength, natural healing and familiarity of our breaths to maintain life. No longer is the discussion centred on the quality but of means to survive and flourish, nurture the new growth like buds.
I linked up with counselling immediately hearing my diagnosis.
This field is familiar to me - personally and professionally.
Music and a new version of me dancing are vital therapeutic tools.
My now me misses my wild spirit - dancing freely from the rooftop, at bluesfest, concerts, country farms, in my pjs - wherever my heart has felt the rhythm - everything is modified and I have that conversation with myself...it’s ok. Trust my decisions...let’s just go with this. Do I believe it?
My work load has reduced to lean inconsistent hours. I have to maintain that to a) meet my financial obligations b) stimulate the brain city lights and passion for my work. I don’t have the strengthI to make it make a priority - I cannot manage that, just enough to keep my toes wet.
You are right - I have not able been to see the winning podium since this whole ordeal hijacked my life mid Aug 2020. The blood clots and more medication have made my lenses even blurrier.
For someone who barely took any medication - I’ve given permission to chemo, blood thinners, weeks of antibiotics blah blah. I’ve been prescribed Targin but haven’t used it (Onc won’t be happy).
i wonder sometimes if my body, mind, soul, spirit wellbeing is reacting to what it may consider my madness, betraying my overall bodies wellness...?
🍃🦋🍃💃🌱🌸🌱 x1 -
Dear @Tasia
Don’t dismiss taking the wheel. Most of us who have been through this know that being your own advocate is important. Listen to the specialists of course, they know about cancer. But we know who we are. The medications we never thought we would take may save our lives. Ultimately we make the decisions about what happens - and that may mean changing our minds, doing things we haven’t encompassed before, embracing, under the most unwelcome of circumstances, new opportunities. You haven’t chosen the ride, but you have some options about where it takes you. Best wishes.3 -
Hello @Tasia
I agree with @Afraser, that you need to take the steering wheel back. I was in depression for about two months post surgery cos I had also lost the steering wheel. With that I had lost myself, as you described my wild spirit and happiness. I was taking so much medication, and like you I don’t like taking anything that isn’t natural. However, I took the reigns back and things started changing. I said no to chemo, because there was a really small benefit from it, and I didn’t want to stuff up the rest of my body that is working so wonderfully well. My thinking was that I need my body as healthy as possible to be able to continue fighting anything else that might decide to invade any part of my body. And chemo would have jeopardised that. I still had radiation, and still take monthly injections for artificial menopause and Letrozole every day. I have told myself this is only temporary, until I sort my mental and emotional health again, which will then help me gain my physical back completely and maintain it. So I don’t plan to continue taking all this medication, especially if it affects my quality of life really badly. Only for now, as a way to help me until I’m strong enough to do it on my own. And I am getting stronger every day, by doing things my instinct is telling me are right, even if it means disagreeing with the specialists. After all, there is no guarantee for anything, from anyone, so I trust myself best for myself.I hope you find a way to take your own reigns back for your own self, and find that joy again by listening to your mind, body and spirit.You will thrive again 🌻0 -
Hello @Afraser and @FLClover
It is true, we seek advice and guidance from specialists in this field and place trust in their treatment decisions.
First enters the cancer, followed by the specialists and then the ʻtreatmentʻ. I feel I am co-authoring with all three, blindfolded - stumbling around, clenching onto my own authors pen.
I agree that instinct is a powerful and trustworthy source. The strength that speaks to us is from that fountain. Trust within - the light still flickers :-)
Havenʻt taken the Targin - onc said she wasnʻt surprised; my position was clear and made sense to me. Perhaps the only thing that has any sense-making meaning.
My warmest and caring thoughts to all x
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