Post TNBC: cope and hope
Tasia
Member Posts: 126 ✭
Hello all,
It has been a good solid 12 months since I posted on this forum. Have jumped on a few occasions but didnʻt quite feel that I was ready to contribute anything meaningful.
An enormous warm hug to all the women with a TNBC diagnosis; I also am part of this camp. Diagnosed Aug 2020, had AC/Paclitaxel until Jan 2021 and the rest of that year was a medical health nightmare with a bilateral mastectomy (last minute alarm bell decision), radiotherapy, bilateral salpingo-oophorectomy and I tested positive to a rarer gene mutation.
I have had rehab to give my body and mind the support it needed, rounds of extra physio and I raised my hand for any other wellness activity, on offer. I acknowledged that my walking ability had changed and let that change guide me, I also took up qigong daily in whatever recrafted way, I could. I was just going with the flow of my body and its energy in that moment.
I ate healthy with or without appetite (that was a challenge), made fresh veg/fruit juices, drank litres of bottled water as my taste buds couldnʻt tolerate tap water amongst other things, rested and tried versions of sleep, journaled to keep my emotions in balance and my sanity, spoke to plants (that in itself sounds like I a batty escapee lol), reflected in the ʻreview mirrorʻ, couldnʻt stand the ʻpresent mirrorʻ and tried to find a good story, one of hope, change, acceptance, newness and inner strength in the ʻside mirrorsʻ that kept me going in smallish forward movements.
I worked through it all on the days that my body/mind gave me the green light indicator. Between the red and amber, yes, I shed a waterfall of tears for the loss...of self as I knew me, of hair, skin - texture colour, free mobility, independence, friendships (I discarding many of these), family pain, body image, confidence and the list goes on in length. There were other lesser losses and symptoms that the body, mind, soul and spirit struggled with - inch by inch, moment by moment, thought by thought...hope was showing up.
What we encounter once we have been handed membership of BC (and I was waving my fingers, stomping loudly and making noise - heck no! I donʻt want your bloody membership - well that fell on deaf ears) is traumatic. There is grief and loss, and it is scary ...we have no protective gear and significant pieces of our being were hurt (external and internal) and weeping - for self and others we love. The weeping tears help our wounds to heal, scars to form and fresh growth to reveal itself - what emerges in this chaos is a field of smiles - for life in every breath, every moment. I feel that the most precious take away learning is how much more awareness we have of self, others, our surroundings, life.
Cope by giving self permission to be selfish, to gift self with gentleness and kindness, gratitude to your body, mind and spirit. Respect it with wellness (I walk a fair bit, and without fail do my daily integration of qigong and tai chi - truly marvelous. Iʻd love to do more swimming) sprinkle it with the ʻhope effectʻ - feed it dreams, ideas, smiles, creativity, celebration or whatever words resonate with you.
My place of hope has been to gain enough courage and strength to gradually start to return to overseas travel in this new body, new me - and I am smiling as I write - I am going to Japan for a short trip to test me out :-)
Fear of some degree, will walk alongside us, like a shadow - this was our membership subscription. There are many hurdles that present in day to day life - some feel like old friends now, others strikingly new. Grief and loss will hold a permanent spot and as the fresh growth expands around us - it will feel less dominant.
I share this lovingly and with a sea of positive energy that ʻhope and wellnessʻ shine upon us all. Love and hugs xx
It has been a good solid 12 months since I posted on this forum. Have jumped on a few occasions but didnʻt quite feel that I was ready to contribute anything meaningful.
An enormous warm hug to all the women with a TNBC diagnosis; I also am part of this camp. Diagnosed Aug 2020, had AC/Paclitaxel until Jan 2021 and the rest of that year was a medical health nightmare with a bilateral mastectomy (last minute alarm bell decision), radiotherapy, bilateral salpingo-oophorectomy and I tested positive to a rarer gene mutation.
I have had rehab to give my body and mind the support it needed, rounds of extra physio and I raised my hand for any other wellness activity, on offer. I acknowledged that my walking ability had changed and let that change guide me, I also took up qigong daily in whatever recrafted way, I could. I was just going with the flow of my body and its energy in that moment.
I ate healthy with or without appetite (that was a challenge), made fresh veg/fruit juices, drank litres of bottled water as my taste buds couldnʻt tolerate tap water amongst other things, rested and tried versions of sleep, journaled to keep my emotions in balance and my sanity, spoke to plants (that in itself sounds like I a batty escapee lol), reflected in the ʻreview mirrorʻ, couldnʻt stand the ʻpresent mirrorʻ and tried to find a good story, one of hope, change, acceptance, newness and inner strength in the ʻside mirrorsʻ that kept me going in smallish forward movements.
I worked through it all on the days that my body/mind gave me the green light indicator. Between the red and amber, yes, I shed a waterfall of tears for the loss...of self as I knew me, of hair, skin - texture colour, free mobility, independence, friendships (I discarding many of these), family pain, body image, confidence and the list goes on in length. There were other lesser losses and symptoms that the body, mind, soul and spirit struggled with - inch by inch, moment by moment, thought by thought...hope was showing up.
What we encounter once we have been handed membership of BC (and I was waving my fingers, stomping loudly and making noise - heck no! I donʻt want your bloody membership - well that fell on deaf ears) is traumatic. There is grief and loss, and it is scary ...we have no protective gear and significant pieces of our being were hurt (external and internal) and weeping - for self and others we love. The weeping tears help our wounds to heal, scars to form and fresh growth to reveal itself - what emerges in this chaos is a field of smiles - for life in every breath, every moment. I feel that the most precious take away learning is how much more awareness we have of self, others, our surroundings, life.
Cope by giving self permission to be selfish, to gift self with gentleness and kindness, gratitude to your body, mind and spirit. Respect it with wellness (I walk a fair bit, and without fail do my daily integration of qigong and tai chi - truly marvelous. Iʻd love to do more swimming) sprinkle it with the ʻhope effectʻ - feed it dreams, ideas, smiles, creativity, celebration or whatever words resonate with you.
My place of hope has been to gain enough courage and strength to gradually start to return to overseas travel in this new body, new me - and I am smiling as I write - I am going to Japan for a short trip to test me out :-)
Fear of some degree, will walk alongside us, like a shadow - this was our membership subscription. There are many hurdles that present in day to day life - some feel like old friends now, others strikingly new. Grief and loss will hold a permanent spot and as the fresh growth expands around us - it will feel less dominant.
I share this lovingly and with a sea of positive energy that ʻhope and wellnessʻ shine upon us all. Love and hugs xx
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Comments
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@wendy55 and @Julez1958 -
It warms my heart to read your messages and so very happy that my words held some meaning for you. Staying positive and using language that reflects positivity alone isnʻt enough (my thoughts of this experience)
I feel it is important that we have these ʻopen kitchen tableʻ conversations to take some of the emotional and mental heat off - to simply chat with each other; speak of the crap and of what widens our smiles.
To validate our distressing stories, our reality of life after breast cancer and see what we find and how to cultivate a path of hope, in moment to moment - a new and different of doing life.
Please know that you, anyone can reach out and PM me any time to have that ʻopen kitchen tableʻ chat :-)
Many thanks for your wonderful travel wishes - Iʻve booked my tickets, going in mid March ..and yep, I am excited and frightened of the whole newness of it all, at the same time.
I donʻt have a time machine so return to the past to swallow my previous me is not an option...so I have to stay ʻpresentʻ and when the hard days muscle their way in, I will need to face a cloud a day. The kinder days, Iʻll let the blue sky silky fabric and itʻs mate the smiling sun take me on a daily outing :-)
Those days, I will give thanks to my body, mind and spirit for its ongoing determined attempts to keep me going - that is the inner magical power we hold - the wellness of hope to heal.
Hugs, love xx
P.S. I wonder if I should start a post/thread ʻOpen Kitchen Table Gatheringʻ and invite us all to share to chip away at some of the lonely/alone silences (?) xx3 -
Hi @Tasia, loved your writing. I have a confessed travel junkie. I started travelling at 17 and have been very fortunate to see many places in many countries.
Japan is a great place to travel. I have been there twice. Once with my son when he was 18 snd learning the language. The second time I went was early 2020 just before covid lockdown of our border and before my breast cancer diagnosis.
It is easy to get around on the trains and tourist sites are well posted. The food is good too and cheap really. I really liked it there and probably will go there another time in the future as I have a very good friend who lives in Tokyo.
I am hoping to travel to Italy and Scotland this year with my husband. He had a cancer operation in one week. Cancer on his kidney and should recover well. I am a bit nervous about travelling again but we will do it. I think breast cancer can knock my confidence so my planning our Europe trip is part of my rebuild. It was a trip we were originally going to do for retirement but breast cancer and covid stopped it.
I hope you have a great holiday. Update us on the trip and post some photos if you like.
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What a wonderful post @Tasia ... you've not had an easy ride of it, but are resilient and sparkling!! GO GIRL!! Life, after BC, is what you make it.
Enjoy your trip to Japan - looking forward to pics already!
And yes, I think your 'Open Kitchen Table Gathering' would be a WONDERFUL topic!!! Xx
All the best for Hubby's surgery @cath ... and a good, speedy recovery xx I bet you can't wait to get travelling again xx
Take care ladies xxx. You are all SO SPECIAL xx0 -
That’s wonderful news @Tasia!! 😃. It’s so good you’re making that step back to independence and travelling. I’ve also always wanted to go to Japan as everyone who has been that I know has loved it. What an exciting time 😊.Your post is beautifully written as always. You have captured the experience in words. I wish hope and wellness upon us all too, as that’s where the beauty of life is ♥️.
I also think the open kitchen table post/thread idea is great. I think it would do a lot of us some good to contribute to a post like that 👌🏻.
Hoping we can catch up after your trip 🤞☺️.
M Xxx0 -
Good for you. I wish you well with you travel. And resuming some of your previous ambitions.0
