Instagram Fam?!
Hi all :) I was just wondering if anyone else is sharing their Breast Cancer journey over on Instagram? I set up a page recently as I want to spread awareness about the realities of treatment & survivorship. I didn't quite have it in me as I went through the first part of my treatment (2 x surgeries, chemo & rads) to share as I went, but now i'm in the next phase (Ribociclib for 3 years + Zoladronic Acid 6 monthly + a bunch of other meds from side effects) I am starting to share more & recount my experiences. It's been lovely to connect with others as well. If anyone would like to follow you can find me at @breastcancerbanter
Recovery with other chronic illness/disease
I'm through treatment (surgery and radiation) and the stress of making the huge decision not to take AI’s (pure mucinous carcinoma) and. Y onco team is fine with that. But I suspect like many, breast cancer is not my only life or health issue. Five weeks after radiotherapy I’m so fatigued I’m having trouble doing much. I also have diabetes, severe kidney disease and heart failure, the latter managed by a device that restricts my heart rate range. Not whinging as these are things I have under fairly close to optimal control. And it is what it is. But I don’t know how to get past this fatigue. I'm exercising in small doses, increasing strength training (also in small doses) but my zest for life has disappeared. Is this normal? I usually paint, and crochet and garden and cook and read and play my guitar. Not sure where to turn to or whether to just wait it out in hope. I’m either under or overdoing it. Ideas?
Petrea King retreats?
I’m having difficulty coping with my “new normal” and a friend has recommended I attend a Petrea King Quest for Life 5 day retreat “Healing Your Life”. Just wondering if anyone here has attended one and how they found it? I need to find a way to stop the anger/rage about the changes this has made to my life or I am going to become a very bitter angry person.
Work/grief/sadness
Hi all, apologies if this has already been discussed but I couldn’t find anything elsewhere. I’m 46, had a right mastectomy (Diep flap) and left reduction in early December for stage 2 invasive lobular carcinoma. My recovery went really well, no pain whatsoever. I still have another procedure to alter the flap and then have nipple tattooing but have to wait until later in the year. Started on Tamoxifen in Jan. I went back to work at the start of March and since then have felt the wheels come off a bit. I went back on reduced hours but in a different role to what I usually do (but just as busy!) 3 weeks in I was feeling overwhelmed and crying at the drop of a hat. This role was only to cover someone else and when I asked for more time on reduced hours/duties I was given yet another new role which is totally unfamiliar to me. Consequently I ended up leaving work early this morning as I was in tears. I think because my recovery went so well I hadn’t properly processed everything that had happened before (diagnosis to surgery was pretty quick). And work seems to have triggered a huge reaction that I didn’t expect. It feels like the reality of all this has hit all at once and I’m on a huge emotional rollercoaster. I am seeing a counsellor and she’s been amazing. Plus I’ve started acupuncture. I’m so used to be busy and I used to love it but at the moment, I just don’t have the capacity for it. Has anyone else had a similar experience?Insulting and Judgmental Comments
Something I was not prepared for post breast reconstruction, are the judgmental comments the scar on my belly is attracting. I have been undergoing abdominal ultrasounds to try and figure out the problems I am having with my period. The ultrasound people keep referring to the scar on my belly as a "tummy tuck". I've even been asked "why have you had a tummy tuck?" I have a lot of scars on my body. I am proud of every one of them. They are proof of all the crap I have been through with Hodgkin's lymphoma and breast cancer. None of these scars attract the same judgment and comments as the one on my belly. I have not had a tummy tuck! I had a bilateral skin sparing mastectomy and DIEP flap reconstruction! I was in surgery for 9 hours! I was in hospital for 7 days! I was off work for 10 weeks! I chose to undergo this surgery to remove breast cancer and reduce the risk of recurrence and death!!!!!! I was so SCARED going into that surgery!! This was no FUCKING tummy tuck!!!!!!!!!!!!!!!!!!!!!!!
Questions to ask 'Post Surgery' of yourself - to your Specialists - Tick Sheets - Self assessment
I know that after my own surgery, I didn't always quite know what questions to ask of my surgeon and 'the team' that we all see regularly for the first 5 years following our treatment - so I set about looking for 'tick sheets' that would help me, as these appointments approached! I came across some really interesting files. They are all 'multi paged' so I've put a 'sample page' from each document to give you an idea of what is in it. The first booklet is available at most Cancer Clinics and was put out by the Cancer Council - 'Living Well After Cancer'. It is a good one to give to friends & relatives to read as well - to give them an idea of the longterm affects of cancer even after successful treatment - as they often think that once you've had your surgery, chemo, rads & tabs - that you are now 'well'. We all know that that is NOT necessarily the case! :( It really is a lifetime sentence. This booklet covers a lot of areas that concern us all - and may be able to help answer questions in many situations that we face. (sample page) The 2nd one is: "Questions to ask 'post cancer' " - a 'tick sheet' - these questions could be spread across the whole team - your surgeon, Onc and Rad Onc as well as GP. Tick the ones that are relevant to you in the lead up to your individual appointments. (sample page) The next is "Self Care Specific Symptoms" - this sheet could also be for any of your team - with the 2nd section relating more to mental health issues that may impact you. (sample sheet) And finally - a Survivorship Care Plan - virtually a ''Self Assessment Yearly Checkup'' sheet .... which has more specific symptoms that you may be concerned about and also has pages for noting yearly checkups required re Dexa, Mammograms, Colonoscopy, MRI etc - almost a 'diary' to keep re future appointments. (sample Pages) Write down the dates you've had them, and when the next one is. Add any other exams that are not already there You can use any or all of these documents to track how you feel you are progressing - date them & further down the track, you can compare them to see how you are travelling. Take care & I hope these sheets help in tracking your health - both mental and physical. xxx
Tamoxifen after Hysterectomy
Hi All, haven’t been on for a while but haven’t forgotten what a great source of support and advice you all are. I’m 3 years and 3 months out of treatment. - LS mastectomy and tamoxifen. I am due to have mitral valve replacement within the next few months but I’m unfortunately having to undergo a hysterectomy beforehand due to heavy periods (warfarin will not be my friend otherwise) I’m wondering if I’ll still need to take tamoxifen after my hysterectomy? ( I know I need to come off it prior to both surgeries) and … long term …. What are alternatives to HRT to prevent memory loss/ osteoporosis/ turning into a seething beeyatch? anyhoo. Lots of loves to all of you. Many thanks in advance for any enlightening comments you can give me ❤️❤️❤️ xxx
Just feel like running away
Does anyone else just feel like running away. It's almost 2 months since I finished radiation, and getting close to 12 months since my diagnosis. I see my Breast Surgeon next week. I am grateful, and I have come through surgery, chemo etc, ok compared to others, so I think I should just be "getting on with it", I've returned to work, but finding it very difficult due to sleep problems, concentration and just anxiety. I'm trying everything, antidepressants, counselling, Yoga. Since I started HT I feel like I just cry all day. I just want to run away.... does it get any easier? I have family support, but still feel alone. I'm sure this is "normal" feelings, but somedays it just feels too hard. Just feeling scared and alone at the moment, I'm sure it will eventually get a little easier (at least I hope it will).
Post TNBC: cope and hope
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
