Triple Neg, diagnosed 4 wks ago, have had 2 cycles of AC chemo - I wonder what has happened?
Tasia
Member Posts: 126 ✭
Hello, I am not sure how to introduce myself, as this self, is new to me. I feel I havenʻt had time to prepare or make sense of who I am when I look at self. An experience, I have walked into or more precisely, I am on a treadmill of some sort and someone has yanked it up and I canʻt keep up. Emotions running havoc. I am very grateful for support services such as this and give thanks to the community of people who reach out to help each other. For those who read this, thank you.
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Comments
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Most people feel as you, life feels like it's spinning out of control, decisions are being made fast and you fear if it the right one. It's normal to worry, it's normal to feel overwhelmed and it's very normal to not be able to sleep.
Many of us have been there and we are here as life slowly goes back to a normal pace where we again feel the shock of what happened and try to make sense of it all.
We are here to support and answer any questions you have. Have a look around the sight there are many resources on here and support groups also. X
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Thank you primek for your reply and kind words. So much gets flagged and you need to be on alert for things that may go wrong (the port became infected and now there is a possibility I have a UTI), language/words, emergencies.
The scariest of all so far has been the introduction of ʻchemo brain/fogʻ. That out of body experience, the realisation that change has come and I donʻt know what to do with it. I am trying to regulate the overwhelming emotional ride not by fighting the cancer but by working with it and saving my energy to work with the parts of my body, mind and soul that have some healthy functionality left in them. Seeking the how can I help self rise, heal and overcome this tsunami... x4 -
These early days are awful, aren’t they. Your formerly healthy body seems to have been ripped away and you are tossed in the storm. This will get easier in time. AC is yuk and no part of treatment is fun, but it’s all doable and then suddenly you will be out the other side. Hang in there and just take one day at a time xx5
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Isn't it interesting, the way we can step outside ourselves when everything suddenly turns to crap? The cancer train is actually designed for passengers who have no idea where they are going; you get on it, almost by accident, and before you know what has happened, you are miles away from yourself.
You've had a wretched thing happen, it takes a while to process this stuff. I think we all have a default factory setting when it comes to dealing with disasters of any description--some put their battle undies on, some call in all the reinforcements they can, others crawl under the bed and suck their thumbs. All perfectly reasonable responses.
Try to concentrate on the immediate problems if you are finding it too hard to look ahead. It's all so exhausting--hang in there. MXX5 -
ddon and Zoffiel, thank you - being understood makes such a difference. When I work with clients, I always speak about ‘permission to self and self care mechanisms, being kind to self and hold self with gentleness’. I find in a whirlwind of emotions, that go to place a little harder to get to. Perhaps it’s because I have no idea how I landed in that place to start of with. Did I detour and didn’t notice?
I plea with my body to help me bring to life the parts that are not unwell, free of medicines..wanting to work with it, help it heal.
My eldest daughter added a little baby girl to our family last week and while the tiny little person was a sparkling star, sprinkling love and hope, I was also deeply saddened that the tears we shed were part joy and part harsh reality. I was changed and not how I wanted her to meet me...we shared love despite it though.
I ended up in emergency last night with blood in my urine. Appears I have a side effect to Cyclophosphamide and am bleeding internally. The port is still infected. Morning discussions with oncologist as cycle 3 is due this coming week.
Today invites, between tears a focused approach...this is a temporary situation. It may have hijacked my life but does not define it permanently. Hurdles one can do without but I can seek ways to manage them, not let them stand in my way (even when I feel like total crap).
Do I even make sense?
Thank you to you all xx2 -
You make a lot of sense @Tasia!
Now is the time for (temporarily) letting go of planning and analysis and dealing with one day at a time. Many of us have suddenly found ourselves in hospital, with no warning, for something unexpected. And no, none of it defines us. The main thing as @Zoffiel often says, is just to keep
putting one foot in front of another. Who knows how this all happened? Most of us don’t, but keeping love and faith with your body is important in accepting what has happened and reclaiming your own control. Little by little, the unknown becomes more known and the world stops tilting quite so alarmingly. Bear in mind that unexpected changes are not all bad. They are disconcerting and unwelcome, but may have hidden qualities that take take time to discover. Best wishes.3 -
Hello @ Tasia. no-one wants to find ourselves here, but welcome to the forum. The ladies here have so much knowledge, support, love and friendship to share. I just take it one day at a time myself too. Sending hugs xxx
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@Tasia , you don't. Give yourself licence to do nothing every once in a while. If you feel absolutely horrible, it is OK to pull whatever mental, or occasionally chemical, trick it takes to shut down for a day or two. Even that process is interesting in itself.- how do you do that on the really off days? x
It sounds like you are being given dose dense chemo, which is extremely hard work. It wasn't possible a few years ago because the side effects couldn't be managed, but there is every indication it's worth the punishing regime . It works better and doesn't take as long, but it's hard going. Mxx1 -
My really off days are a long time ago - amazingly it does happen! I used to write (still do but the main topics have changed) and putting the bad days on paper helped. Even if you think you are being childish, or weak, or petty (and you’re not, just being human) it helped me to let it out, but not in anyone’s hearing! Helped again later to remind me of how much had changed. It’s the old ‘every journey’ stuff - one step seems pointless and aimless at the beginning but then you look behind and see how far you’ve come. No-one in their right mind wants this stuff, but if it happens, it is possible to make something out of it, with some luck and effort.0
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Days off or 'off days' - both legitimate in their own way and what and how you do or don't do is your choice. The comments made by others are 'GOLD!' - take what's right for you. Give yourself a chance and use this forum to adjust to accept the changes this brings. Stay connected! xxxxx Beryl.C
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@Afraser - I use journals to write down much of what I experience and how I coped or didn’t. Sometimes in first person, others in third. Sometimes I’m the author and protagonist.. soldiering on and others the vulnerable character - stuck in the midst of a dense fog. It’s been a month since my diagnosis and when I look through the review mirror, my eyes see lots of backward movements and days fuelled with emotion, confusion, wonder, uncertainty, foreignness and grief/loss...for whom I’ve left behind. Harder days than easier ones and I have only started. I feel somewhere down the track, I will be able to see the leaps between the stumbles - now I feel it’s all too raw and tough x0
