A new day .. Aug 11 2020
NelSky
Member Posts: 31 ✭
Hi all even my discussion title makes me breath deeply. I’m 42 and was diagnosed on Aug 11th. I’m half way through my radiotherapy and just found out I’ll be undergoing chemo too. I got my head somewhat around my treatment plan but feel like I’ve been smashed again with another sledgehammer and honestly I’m just frightened and already tired by it all. I did the expensive test to check my tumour and it came back chemo would be beneficial. So I’m doing it a bit backward radio then chemo. I cry a lot, my thought jump around between hope and overwhelm wondering if this is my life and is it the start of over or if I’ll ever be well again and I am so emotional about it. I’m sad for me and my 15 year old son and I’m just scared. Also just started zoladex to put me into menopause. So much happening in my body right now. This is my first post, power to all my beautiful sisters XX
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Hi @NelSky - welcome to the club that no-one really wants to join! Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you. Nothing is off limits. We have ‘private groups’ for some more personal discussions .... so feel free to join any of them, if they suit you.
You've been thru a lot already & now knowing that you need chemo as well, it would be a bit of an emotional sledgehammer - so I fully understand your distress. Do you have friends or family to lean on at this time? I was lucky - my brother & his wife helped me big time as I live in a small coastal town but had to go to Sydney for my surgery & ongoing appointments, so stayed with them & they attended my appointments too.
We all know the absolute turmoil that comes with the bc diagnosis - Your whole world is turned upside down in a millisecond, as you navigate unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this .... and sadly, it may take a year or two for your life to settle down.
It is totally 100% ok to skip between anger, denial, sadness - but if your find the sadness/anxiety is overwhelming you, please seek professional help! Your GP or breast care nurse may be able to refer you to someone nearby ... or your local Breast Cancer Centre May have help there .... where you are more likely to find a bc specific psychologist. Just talking about it openly and sharing it with a professional should be able to give you coping mechanisms ...
Where abouts do you live? You can add your State & Town/City in your Profile - then others in the area may be able to add info relative to your area that you may not be aware of. For example, rural patients can claim petrol and accomodation expenses from the Gov by filling in some forms.
You will make new friends and may lose some old ones, as most just do not understand what you are going thru. Many of us here have found wonderful friends within the group and have even met up with them in ‘real life’ before this Covid thing! Grrr In July last year, I met up with "Annie C" in Darwin for a week of fun .... and we are planning another one next year (if Covid allows us!)
Personally I found that it mucked with my brain BIGTIME, more than anything else! And sometimes that is very hard to control, as it has a mind of its own! I have found that keeping BUSY doing things is the secret .... get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before. If you are able to get back into some sort of work routine - it would help as well, even if only part time. Plus it is good for your self esteem too.
Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!).
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
If you are into arts & crafts, we have a 'Creative Corner'
https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
and if into your garden, a Gardening post as well!!
https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078
And we now have a Fishing post, as that is one of my passions!
https://onlinenetwork.bcna.org.au/discussion/19494/fishing-brag-pics
Try not to use Dr Google as there is just so much conflicting information out there, and every BC case is 'unique' and it will only scare the pants off you!
All the best with the rest of your Rads & your ongoing appointments .... take care xx
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Thanks I defiantly don’t use Dr Google that’s just doesn’t help anyone !! I have a wonderful sister , brother in law , mum and family and friends. I’m still working remotely as im In Melbs !! Lockdown central. I talking with the bc nurses and psych soon.I still laugh and yoga and am setting up my studio to paint. You made sense thanks for replying I’m learning a new balancing, breathing deeply and riding the waves and yes didn’t really want to join this club but he I’m here !! It’s still new and I’m still settling as much as I can still feeling raw I guess. X4
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It hurts on every level - it’s so hard to wrap your head around this new reality. We understand the fear and sadness for our children and the wondering if our life is soon to be over or if we will get back to normal again. One day at a time. Chemo is an awful thought - there’s no denying that - but as others will tell you it’s all doable and it is so helpful down the track to know you did all you could to have a healthy future. Focus on keeping healthy and getting through each step one at a time xx3
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That is terrific that you have wonderful family for support @NelSky ... and great that you are maintaining your yoga & art - and riding the waves - I am jealous! These things all require concentration & will take your mind off your current issues - I run a ukulele group & also fish a lot from my kayak, so I made sure I did this as often as I could & it really helped me.
I found it was mainly at night that my mind went haywire - but it DOES settle down eventually! Definitely Try Slow Deep Breathing when you get upset .... it can help calm the heart beat & just regulate things again xx
Try not to overthink everything - difficult tho it is. Just take one day at a time, try & get out & do things with your son, so he doesn't miss out - he will be very worried for your welfare as well!! There are organisations that have programs for teenagers who's parents are undergoing treatment .... I'll try & find some details - he may benefit from this! xx
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Hi @NelSky
Welcome to the club no-one wants to join. The ladies before have lots of wise words. CANTEEN is an organization that can help your son with any questions etc he may have. I am having chemotherapy weekly and I just put one foot in front of the other, It's all I can manage at the moment. Your yoga and painting sounds wonderful. Wishing you all the best.3 -
Thanks for all your words sisters it brings joyful tears to my little emotional soul... can I ask do you get TC CHEMO ? and what’s it like ??0
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Here's a link to the BCNA website - a section dedicated to Chemo - in case you haven't seen it!
https://www.bcna.org.au/understanding-breast-cancer/treatment/chemotherapy/
Take care1 -
Hi Nelsky
I had 4 sessions of AC chemo every 3 weeks and now I am having Taxol chemo every week for 12 weeks. I have a port so I just sit in the chair and the drug goes through the port. I think everyone has different side effects. I feel tired afterwards. I try to drink as much water as I can afterwards to flush the chemo out of my system. I have fatigue which is more than tired for a few days. Some nausea and upset bottom for a few days. I think the first one is always the hardest because we dont know what to expect. Sending you hugs xxx1 -
Hi @NelSky,
just hang in there
. Yes, being diagnosed, then the flurry of active treatment really messes with your head and sleep seems a distant memory. Also, seeing so many different doctors for different aspects of treatment... I wondered who was in charge? Who's coordinating all of this? Until I realised I am! Make sure you keep all of your notes, questions, test results etc. in a folder and take it with you to all of your appointments. Make sure you understand your own pathology. Take someone with you or record your appointments with your phone. Great that you are already in touch with the BC nurses and psych. Others may not agree, but for me, learning as much as I can about this crappy disease helps stop my imagination from running riot, and eases my anxiety and fear. I have a beautiful son too. I feel for you and him.
This might help. I posted this as a new discussion. The Breast Cancer Trials Q&A event - Breast Cancer 2020: The Medicine, The Myths and The Mind.3 -
Fantastic @Dory65! I agree. You are the one who is in charge. And knowing as much as you can about the cancer you have and treatments/surgery necessary is vital. I read a comment like this early on in
my diagnosis, just after my mastectomies. Until then, I hadn’t looked at a single test result, report or images. I was scared to even know anything about the types of cancers and which one I had. After reading the comment, I thought it would be too confusing anyway, to understand all the results, reports etc, cos they’re so full of unfamiliar information. I could barely think straight. But then I thought what the heck, whatever it was is already out, so I started looking at every report I had and all the screenings I had done, as well as correspondence between doctors. I also changed surgeons, and I read the post operative pathology report that I had to get for my second surgeon from my first. I actually understood quite a bit, and learnt that the cancer I had was the least aggressive, and it was stage one. This was also mainly thanks to my superwoman second surgeon, who took the time to explain EVERYTHING to me very patiently, and reassured me there were plenty of treatment and surgery options available. She helped me get my power back. So now, every time I have an appointment with a specialist, I understand what they are talking about and have a say in all the decisions. I feel like their equal. I can’t emphasise how important this is. After seeing her, and getting really well informed, I blossomed. I had radiation after that, and actually enjoyed it. Now when I go to appointments, I’m happy, instead of trembling with fear after a sleepless night. So as patients of this terrible disease, it’s best to have a very supportive and wonderful medical team behind us, and have as much information as possible. This definitely stops the mind from creating its own untrue and exaggerated scary information and scenarios about it, which in turn lessens the anxiety enormously, and makes it a much more bearable experience.So good luck to all the newbies (and oldies 😁) and I hope you all have the courage to beat this b***ard for good 👊🏻🍀❤️4 -
Hi there
After my diagnosis I nicknamed myself“Melbourne” - 4 seasons in one day.
Happy, teary, hysterical and stoic.
After my mastectomy I added a 5th season - grief.
It’s perfectly normal to feel a whole range of emotions which can include anger and shock.Also to feel anxious
( I thought the term “ scanxiety “ was spot on!)
i was originally offered breast conserving surgery but after the MRI it turned out my lobular cancer was 5.5 cm so a mastectomy was the preferred way to go.
i am having a staged reconstruction with a tissue expander.
i don’t have to have chemo but will start radiotherapy in a couple of weeks then letrazole.
Am understandably apprehensive about side effects of both but the big thing that keeps me going is the relief that it’s not stage 4.
And it will get better.You have come to the right place there is a lot of information and support on this website including this online network.1 -
@Ecup2020 hello and yes my last oncologist appointment she commented on my range of emotions within a 5 minute span but hey .. you just told me I’m doing chemo and the plan was no chemo ..well let’s re-word that I am choosing chemo, short course based con the endopredict test, more prevention as I had a grade 2, 2.2 tumour, nodules clear I’m 42 pre memo. I’m more grateful at the minute. Grateful I found it , that it was just one and that it hadn’t spread & nodules were clear. I’m grateful it was one op. But overwhelmed and frightened about chemo, my hair which is massive and trivial at the same time in my mind. And early menopause which I’m ok with out of all of this. Change and healthy, hopeful horizons in the midst of all this big shit going on. Life will never be the same as I breathe deeply into the thought I have both fear and hope. To quote another amazing woman on here “ I will not only survive I will thrive”.. And ride the rollercoaster not so fun bus. XX it is a great community here strong and supportive 💕1
