Where did my gratitude go? I swear I left it right here somewhere...
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Hello @Summer Prevails. I will now admit that up to 2 months ago I too wished that I was dead. Since June 2017 I felt that my life had been turned upside down and nothing was the same.
A much needed holiday that I had been planning for 18 months to New Zealand was cancelled because it came smack bang in the middle of treatment. There were 6 of us going. The other 4 went - my husband and I did not. The money for that holiday was used to fund our stays in Perth for treatment - none left now.
Lots of health problems resulting from surgery. But mostly I was suffering from the trauma of the whole BC deal. There was / is no counselling in the area where I live. I am now sort of ok. What did I find helpful. This forum site.
Just to read what other ladies wrote helped me to realise that what I thought, felt and experienced was normal. My fears were rational. My worries were real. My "life is over" feelings were being felt by others.
Life does go on - it is just not as it was. Just hang in there with us.
Anger is all part of this damned disease. I was angry at everyone and everything. Did not matter what. There were a lot of boab nuts chucked at old man boab when I needed to vent my anger and frustration at what life had thrown at me 6 months into retirement. Not exactly what I had planned. (Old Man Boab is safe - my aim is dreadful).
I have learnt a lot from this BC experience. The most important lesson - to be kinder to myself, to put myself first".
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@Annie C @Summer Prevails Sometimes I think my reaction is a bit childish, that it's a bit of a 'it's not fair' drumming my heels into the floor moment. Of course life is not fair, and when it comes to BC it's actually why not me... Especially when the stats are one in eight.
Life is full of disappointment, for most people I'd say. I am most certainly not where I thought I would be five years ago and unlike many things, it's as as result of several events very much outside my control. I know we're supposed to make lemonade out of lemons but f**k me, seeing the silver lining in killer brain tumours, dead sisters, mental illnesses (not my own), breast cancers and distressed & disturbed children is a bloody big ask.
It's going to take time for me to get over this. My own BC has sucked away the energy I was using to manifest my previous 'best foot forward' attitude. I hope I don't sink any lower than I currently am. It sounds like you've managed to turn things round @Annie C, with time and kindness to yourself and putting yourself first? How much time before you started to feel a bit better?
I was warned having breast cancer would change me. So far I'm hating what it's done. Sounds like you are too Summer P. Anger at how you're feeling shows me you care. All I can say is hang in there. Like me you'll just have to trust that like everyone says, eventually this feeling of pointlessness will pass. We'll hang in there together if it's any consolation. Kate xox
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@Summer Prevails I've felt that I don't see any point but I know, as with any depression, that it takes time and help to get through. And just because you're going through all of this bc shit doesn't mean that the everyday shit has disappeared. But it is common. In fact, I was talking to a group of women the other day about Super and income protection and one of the women is getting a payout because her Super covers trauma (as in PTSD type) and a breast cancer diagnosis and treatment comes under that.0
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Aaahhhh breast cancer the gift that keeps on giving. @kmakm @Summer Prevails @beccabecca @Annie C @dak2 @Sister.
It’s been two years now cancer free for me and I definately have felt like that for sure. And its probably no reassurance to any of you at the moment that it does get better with time I know. The sleep deprivation other adversity and stress that life so generously gives us and accepting the new normal is a bitch thats for sure.everyday life just feels like a chore, you get this numbness that you’ve never had, and some people around you expect you to just get on with life. Are you grateful to have gotten through treatment..... yes. Are you gresteful to be alive.... fuck yes. BUT....
I felt at the time when I was having trestment and probably until sbout a year after exactly like you guys it also took both my boobs and mojo and left me more mental than previously (I was always a bit nutty) I still have brain farts but they are more of a fluff now. You used to be able to hear my brain exploding from the moon.
It ripped out my soul, my heart and my life and destroyed our bank account, then chewed them up spat them out stomped on them and then threw it all into butt fuck nowhere. It put my headspace in places I never want to feel again or wish upon anyone else, vulnerable, and with little self esteem. @sister I remember visiting my work one day too and feeling that way about the girl that was “supposed to be filling in” just wanted to pull her hair and wipe that smile off her fuckin face. If I heard anyone say “oh you’re so brave, or gosh you look so good” or Let me know if you need anything (which you know they only say as a cliche) I just wanted to fucking stab them
It also did similar to my hubby who at the time of my diagnosis had just spent 6 months visiting his brother in hospital as a result of a fall from a quad bike, pissed , with no helmet on that left him with a traumatic brain injury. (Another story for another day)
I had triple neg so I don’t have to take post treatment meds that some get to take to prevent recurrence and although chemo was shitty and seriously I would of rather drunk roundup I felt somewhat protected by it then when I finished I thought what’s going to protect me now? And that’s maybe when I felt my worst So I get it. I’ve felt it and been through it too and come out the other side
BUT. As shitty as I felt, every day I felt that way I would make sure I did something I loved prior to getting crook. I never felt like it, it was a fucking chore, but on the days I didn’t do it I felt worse so I’d make myself get up, get out and walk my dogs, do some cooking, I loved cooking and still do so I would find something nice to cook and cook that even though I might not eat it, I got into gardening, never touched a garden in my life expect the pot plants under the pergola that I’d mostly kill, and that was so therapeutic I even made bamboo trellis’s for cucumbers and they looked awesome! So what the fuck is that about.!! Lol.
I’d go places that I loved too like the beach or the bush and feel the breeze on my face and close my eyes and listen to nature st it’s best. Or I’d wander around the markets picking produce to take home and cook with, went to Pilates yes that’s right Pilates never done that before..... even farted in the class when I was in positions I’ve never been in before too!!! Blamed it on some little old lady next to me who could wrap her legs around her head! . Anything that could make me focus on anything other than bc. @zoffiel ‘s thing is to build shit she’s really very clever. You should see her outdoor bath.@arpie I think the sound of a cat being strangled would sound better than me playing the uke lol. But I’m so pleased you love it. I love the sound of it. I heard someone playing somewhere over the rainbow at the markets once. It was beautiful.
Mentally for the past 12 months I’ve felt the best I ever have, I’m sleeping better, the hot flushes have gone, the neuropathy has pretty much disappeared, still get the osteo aches and pains, I got a new job back in March which is the best thing I ever did I’m still stressed with other stuff going on in life believe me but I’m getting through it, paddling away through the shit creek that bc has left me in but still paddling and no longer feel like I’m face down drowning in it. You guys on here have helped with that along with my awesome hubby and kids.
@kezmusc has nailed it in her last paragraph. “You don't have to be bouncing off the walls every day, don't be angry with yourself. There is no place for guilt in this It will get better though and you will find your own way back to you” and that’s exactly what happens.
You just have to be kind to yourself and be patient, and for fucks sake keep on paddling. Once I accepted the new normal it started to get easier from there. I now focus on the things I can do rather than the things I can’t. Take each day as it comes and if it doesn’t get done today it will get done tomorrow or the next day or next week. Shit that mattered before I got crook doesn’t matter so much anymore.
BUT it does get better. Make sure you get the help you need from a health professional if you need it like @kmakm. It doesn’t mean you’re all fucked up if you need to see someone or call the BCNA support line it just means you’re human, it’s normal and it’s ok. Biggest hug ever to you all. Margie xxx
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@onemargie
That is one awesome post - I really think it should be 'stickied' somewhere!
haha Trust me - It is the violin that sounds like a cat being strangled (if I am playing it!) LOL At least Ukes have 'frets' on them that show you where to put your fingers! With Violins, you sorta have to 'guess'!! That's why they 'slide into notes', I reckon - to cover up their mistakes!!
Others may call it 'being soulful, adding pathos!' We do 'Somewhere/Wonderful World' - the first time we 'nailed it' - it seriously gave me goose bumps!!
@Summer Prevails - as @kmakm and others have said, please call the BC Helpline or BCNA to have a chat - hopefully one will be open on a weekend. I hope that with counselling and time, that you will feel better about all this shit we are all going thru.
My heart bleeds for those of you doing it really tough just now - thank GOD we have BCNA on which to talk about our feelings - good or bad - and just get that wonderful support - and know there are ears out there listening and understanding.
If you are having family problems or other shit going on in your life - just remember - we are your 'family' - we are your also your friend.
TAKE CARE xxxx and know that you are loved and valued xx2 -
I'm too guilty to die. The bloody mess is phenomenal. I've got a horrible feeling I'm developing some sort of hoarding disorder and I'll be found mummified in the caravan after being smothered by the spare bedding that has taken up residence in there. Or squashed like a cockroach under a pile of timber that might be useful. One day. Things will have to be sorted out before I shuffle off. What a job.5
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hahaha @Zoffiel - Oh dear, I am a bit of a hoarder too ..... coming from a childhood where I basically owned nothing (I was at boarding school from age 7-17) .... I really LOVE having 'things'! I even buy stuff, just so I HAVE it - I don't necessarily even USE it or wear it!!
But I am nowhere near as bad as those shown on TV!!
It worries my husband more than it does me! LOL He has just given away 2 of his racing bikes and about 20+ tyres & tubes (now that he has stopped competitive racing.) I can't see me doing that with my fishing rods & ukuleles!! I only have about 50 rods & 10 ukuleles!!
But I love my stuff - and know that I need to declutter BIG TIME as we DO want to downsize sooner or later ..... and that will take a couple of years on it's own, I reckon!
I'll do a 'Scarlet' thing (from 'Gone with the Wind') - Tomorrow, I'll think about that tomorrow!!
In the meantime - I'm going fishing!
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@onemargie
What a post. You have expressed it all so well. I will take the time to write out your post in my journal so that when I "slip" I can go back and reread it. An inspirational piece.
@kmakm my emotional recovery has taken a year. There is still the fear, still the teary moments and still the angry moments. However they are not as overwhelming. I still have those "f**k I had breast cancer" moments and not a day goes by where I do not think about BC.
There was a time when I refused to drive to Broome from Derby for a shopping / lunch outing with husband or friends because it brought back all the trauma of having to fly down to Perth for treatment. So many bad memories. A week ago I had to fly to Perth for my first 12 month scans. I breezed through the airport - and that's when I realised that I was getting better emotionally.
It was better when we flew back into Broome and started the 3 hour drive home. I began to relax getting closer to home. The red dirt, the boab trees, the blueness of the sky and the space around us I "felt" home and I realised how settled I am.
I too once read that psychological studies show that 50% of women with breast cancer have some ptsd but only about a quarter of those women seek help of some kind. That's a lot of hurting, confused and distressed women. I was lucky - my gp recognised my distressed state. She prescribed "happy pills". Normally I would have refused them, gone out and chucked another boab nut at old man boab tree. This time, even my lonely little fogged brain cell recognised that I needed some enhancing help. It took a while - over 10 months for me to realise "It is what it is" (my new mantra). I have done all I can.
It does take time. The experienced hands on this site who kept posting that things will get better were my comfort.
BCNA forum site is my sanity site.2 -
Don’t worry @Zoffiel. I’ll come and find you under your pile of timber, cockroaches and we will all go and grab a wine and go watch the sunset!! . And I hope my little post gives you all some encouragement. Please don’t give up. Life is definately worth it. Margie. Xxxx3
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@onemargie Incredible post. My mojo is definitely gone. I don't have the motivation to get it back at the moment. The thought of having to make myself do stuff to get it back is daunting. I don't know where to even start. Hopefully one day I'll wake up and the energy will be there. I loathe myself at the moment. Anything would be an improvement on this.0
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I stick to nature. It is designed to heal the soul. It brings me peace. Don't worry about what others think you should feel or should be doing. You look after you first according to what appeals to you. I also seem to have nurtured myself a jigsaw puzzle fetish. It has been going on since the treatment ended in April 2016. I have Netflix on as well and I like TV show series as they will just keep on playing one episode after another. I love kayaking which I only started a few months ago. Maybe you could write down a list of things that might appeal to you? Anything to get your mind scheming instead of mulling. 1
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Trying to convince hubby to head to the beach for a few days next week when the school hols start. I don't care if I feel like crap, I don't care if the bed is hard, I don't care if it rains, I don't care if the entire family descends - I just need some sea and sand and a change of scene.
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Thanks for the posts, all of your posts. I have read them with tears rolling down my cheeks. One thing that stands out is 'finding your way back to you'. I have absolutely no idea who or where I am emotionally. Trying to renavigate a world that is so changed for me. I see through very different eyes. I am coming up to my 12 month scans etc. Terrified, anxious, lonely, panicked. I finished chemo in January, Rad in March. Daughters 21st was the same time so no party or any extra celebrations as my treatment took centre stage. Eyelashes and eyebrows fell out during chemo and then a few months back they came back and now they have dropped out/thinned out again-is this normal?I am back at work, short grey/silver hair when it used to brown and past my shoulders. There is nothing private about this disease and treatment. Colleagues are nice, but of course, don't understand. The horror stories at times still occur (people trying to relate tell you of the awful thing that happened to their relative) or I hear 'well now you have to get to five years'. One lady I work with can barely look at me. I either terrify her or she she feels such pity that it is too painful for her. I used to love where I worked. Part of me still does but now, post BC I think I want to leave. All my family has been affected. I look at all my relationships differently and experience days of being down, angry, hurt, scared and alone. Its so isolating and everybody who knows me knows what I have been through of course and the constant reminder is how different I look. Friends are ...... I don't even know what that means to have friends.Now my considerations turn to 'should I have a hysterectomy plus ovaries & Fallopian tubes out', should I have bilateral mastectomies?', should I push for MRI & CT as I never had either.I have been trying to participate in life and feel so guilty when I say in bed like today just trying to understand my thoughts and the feelings of sadness and vulnerability. Feel like I should be being actively grateful and doing things to show how amazingly grateful I am. I have all these thoughts now related to the different body I now have. Everything is heavy. Joints all ache-worse now in winter. I used to 'bam do this' 'bam do that'. Now its a planned bam with not much bam at all. One thing at a time. Every twinge now I am terrified its back. It is like I don't know my body and I guess I don't because everything is so changed. My memory is absolutely shocking and sometimes I forget words. I can see the thing in my mind that I want to say but I don't remember what its called-is this normal? How long does it take to feel 'normal' what ever that is.
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Hi there @SamJgS ...I can identify with all of the above. There's nothing quite so shocking as your own body betraying you by going feral. It is true that the person you were before no longer exists, you are a new you now...physically and emotionally. Before this shitfest. I had long brown hair with silver at the temples which I sat on. I had grown it since I was 11 years old. I sat on my hair at my wedding, 39 years ago, and still did so for all the years between. I used to joke that as I was known either as Dave's wife. Katie and Jesse's mother or The Lady With The Long Hair, that if I divorced my hubby, then killed my kids and then cut my hair, nobody would know who the hell I was. Well the family is intact, but the hair didn't. Bald as a billiard ball. Now it has regrown a bit. an explosion of silver grey curls, and my new name is Albert, (as in Einstein). I now have to walk with a granny walker because of severe neuropathy and lack of balance. I have no tits (used to be a 18D. My brain has turned to porridge and items are now called the thingies. The clicky thingy (remote control) the cutty thingies (scissors), the pully outy thingy (tweezers) and so on. I have had episodes of sheer rage, terror, sadness and frustration, but fuck me, I'm still here. I was diagnosed when my grandson was 14 months old, and also at one point during chemo, thought what's the point? I'm just kicking the can down the road...I'm going to fucking die anyway...so why prolong the agony? Better for me to cark it now, before Little Man really knows me, rather than for him to only remember me as some old, sick and dying woman in a few years time. Then a central part of the old me resurfaced and shouted FUCK NO....fight like the scrapper you are...never give in... and so I have. Yesterday was my Little Man's 3rd birthday party, and granny was there, celebrating with him. I intend to watch him blow out many more candles in the future. Each of us is different, yet we are all the same. All of us here, female, male, young, middle and older, single or with families, parents or not, rich and poor...we all get it and we are all standing together. We have each other's backs, and we have yours. Much love and (((hugs))).
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@SamJgS please contact me love. We only live about 20 minutes apart. I’m honestly happy to catch up. I wish everyone from this post could all get together. It would be awesome. I’ve sent you my number again. @sister definitely get to the beach it’s still beautiful down the bay or Brighton in the winter. So blissful. Thinking of you all today am going to make brownies now.....yum. its my post bc medication. Margie xx
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