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.

@tasia I'd like to say this shitty disease has a merciful side. I really would. If it does, I haven't seen it.Dialogue around cancer tends towards the brave, the battling, the epiphany where people turn their lives around and reinvent themselves. Even those who perish have done so for The Greater Good. I'm going to call rubbish on that.It's a gritty brutal dehumanising shitfest for the majority of us. Deep!y unglamorous.After two bouts of BC, a decade apart, I can't laugh without worrying I'll wet myself. I laugh anyway. I was hugely amused by stories about folk stockpiling bog rolls. Anyone who's done chemo knows you may need none for weeks, and then you will need rolls and rolls. I've done the broke and nearly homeless thing--work myself to death or expire in not so gentile poverty?You could not makes !of of this stuff we go through up, it ridiculous.. And the ridiculous is what keeps me going. This disease does many things, but I like to think it hasn't changed my character--though it has given me more licence to express it on occassions. Keep plodding. MXX

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... x

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.

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.

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 xx

Triple Neg, diagnosed 4 wks ago, have had 2 cycles of AC chemo - I wonder what has happened?

Tasia
Member
5 years ago
@Beryl C. - I feel like I don’t have a choice, that gets taken away when you hear the words “I’m sorry you have very high grade breast cancer”. I am working on finding what’s right for me - I honestly don’t know x
Tasia
Member
5 years ago
@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 x
Tasia
Member
5 years ago
@Zoffiel - yes, I was told aggressive BC needs aggressive treatment to slow down staging and shrink it. The plan is 5 months chemo, then surgery, followed by more treatment x
Beryl_C_
Member
5 years ago
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
Afraser
Member
5 years ago
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.
Zoffiel
Member
5 years ago

- how do you do that on the really off days? x

@@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.
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. Mxx
Tasia
Member
5 years ago
@Locksley - knowledge, support, love and friendship is exactly what I feel I need and hope that I can reciprocate. Sending hugs back xx
Tasia
Member
5 years ago
@Afraser - I like the idea of unlearning and relearning, the mind of openness. It frightens me that I notice how the chemo has impacted my brain city lights. I totally agree about forward movements - how do you do that on the really off days? x
Locksley
Member
5 years ago
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
Afraser
Member
5 years ago
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.