Final Countdown 3 days to go for Mastectomy and Diep Flap reconstruction....YIKES!!!!!!
Hello My Fellow Courageous Beautiful Friends!!!! Well a few weeks ago I wasn't traveling very well, as we know too well that emotional roller coaster! I have since had an appointment with a Psychologist I saw 3 yrs ago and it was invaluable. It helped incredibly to try and put it all into perspective. She pointed out that our logical thinking comes from the frontal lobe but unfortunately my emotional body hasnt caught up to the logic of whats happening eventhough I know it has to happen because it makes sense. The other thing she pointed out is the attachment I have to my physicality and all my bits and pieces, of course am human this is what we are...but this is not the essence of who I am..I am so much more than that and the irony is when people see me they dont see my physicality they see the depths of the person I am. Somehow separating myself a little in that way has helped with letting go. The other thing was she said I was grieving, grieving the loss of my breast, grieving the struggle the past 6 years all very valid and is important. I feel I turned a corner. I finished work yesterday and the reality hit as I drove home in tears even at my age wishing my MUM was here to wipe them away...OH DEAR LOL So honestly?? I am incredibly nervous!!! and yeah scared of the whole thing, the pain of it, recovery...the end result...but am calm and trying to do one day at a time...just get to Monday and get to surgery thats all!!!! PHEW!!!
CHEK2... my genetic plot thickens?
Today I went to have genetic testing for the CHEK2 gene mutation. Simply put the CHEK2 gene regulates cell division. If it's mutated the cells go on dividing and, well, cancer. It's also linked to increased risk of prostate, kidney, colon, thyroid, lung, some brain cancers and osteosarcoma. With breast, it's indicative of an increased risk in the moderate range if no first or second degree relative has it, if both have, as in my case, it's an increase in risk of 44%. Well aren't I glad I've had a bilateral mastectomy... And interestingly it has a direct correlation on the effectiveness of some of the breast cancer chemotherapy drugs. If I do have the CHEK2 mutation, I had the right chemo. I checked. Can you imagine how I'd feel if the chemo I'd had was the wrong one?? Holy f**k... So my remaining sister is trying to decide what to do with her breasts. As the only woman in two generations not to have breast cancer, this is of course a major consideration. She found her way to a private clinic and had a genomic test and didn't have the CHEK2 mutation. My mother had the same test and did have it. It's quite a rare mutation. My deceased sister didn't do this test, so I'm the last piece in this jigsaw puzzle. If I do have it, my sister is somewhat more in the clear than if I didn't. The genetic counsellor today said that he'd be very surprised if I didn't have it. He's also fairly convinced that my deceased sister had it based on some previous health issues. It's a spit test. I had to fill a vial with saliva, and now it will wing its way to San Francisco. Faster and cheaper than doing it at Peter Mac (sad). I'll find out in early November. The geneticist said that it would have combined with other unknown genetic factors to cause my BC, something that accords with Peter Mac's assessment of a polygenic cause earlier this year. If I do have it I'm uninsurable (for life insurance), but that ship has sailed anyway. As my kids reach adulthood they'll have to think very carefully about how to proceed. Along with the CHEK2 test, he's testing a large number of other genes (61 in total). I thought about it when he asked me if I wanted to do the full panel. In the end I decided that if I'm in for a penny I may as well be in for the pound. If I can catch some other health drama early and/or head it off at the pass, I'd like to. Knowledge is power etc. If I do have it, well I suppose I'll have to have a good chat with my oncologist about how to screen, or not, what precautions I have to take etc. I don't suppose it'd qualify me for a subsidised MRI. That'd be too much to hope for... This (of course...) has been very stressful. It's probably contributed to my high anxiety week. As I was finishing the ExMed workout today my sister rang to change a complicated arrangement, it got mildly contentious and she hung up on me. Which I hate and, of course, burst into tears. FFS I'm a 52yo woman! Not some angst ridden teenager with pmt! I just can't cope with the slightest derailment at the moment. I simply don't recognise myself. I'm embarrassed writing it here yet again. I won't anymore. Just presume I'm weeping on a regular basis... And now I'm consoling my still wet eyed self with a café lunch and there's a revolting couple refusing to control their toddlers who are literally screaming, running around and banging on the windows. When my kids were that age if they behaved like that they were packed into the pram and taken home. I only had to do it once with each kid. They never did it again because I don't do empty threats. Hurrumph. I am grumpy as f**k.Bye bye boobs
Five days to go until I farewell my breasts. I am comfortable with my decision but nervous about the emotional impact of the outcome. How can you anticipate an amputation of this nature, physically or mentally? I'm not afraid of medical procedures or pain (eight and a half hours of labour with no painkillers pushing out a 9lb11oz baby...), but I am nervous of being under for 8 - 10 hours. My low blood pressure issues and collapse a few weeks ago are playing on my mind. My GP is being cautious and doing some heart tests and I'll be having a good chat with the anaesthetist. I'm comforted by the people who've gone before me and say they have no regrets. I know I'm doing the right thing, for me and my family. My lovely breast surgeon agrees. However I am sad. My breasts are actually a body part I liked. We've had some fun over the years; it's challenging to say goodbye to such a delightful erogenous zone. Nerves and apprehension have been rising as the operation's approached, but have been mostly under control. However last night, after a busy day of distraction, the moment I turned off my light I was swamped with anxiety that went on all night. I had a shocker. The valium I took at 3am didn't help (it was only a 2). I'm a member of the Choosing Breast Reconstruction Group but it's pretty quiet over there so @iserbrown suggested I post here too, so you all can keep me company through the next bump on this wretched rollercoaster. Black humour welcome!
TERRIFIED of Treatment
I’m not sure I can convey in writing how terrified I am I’m not sure there is a word to describe it the worry I feel is debilitating, I already suffer from anxiety and this is just exasperating it, i was diagnosed about a month ago and have had a Lumpectomy with good results margins were clear and lymph nodes were clear, my cancer is triple negative and they are still wanting me to have chemo and radiation. The plan is 12 weekly doses of chemo then about 15-20 treatments of radiation along with Herceptin every 3 weeks for a year. I am supposed to go to Hospital on Tuesday for Echocardiogram, Port Insertion and my first chemo. Everday for the last two weeks I have woken up at 6am in what I think is a panic attack I have tingles all over my body and shaking and I don’t want to get out of bed I’m at a point where I don’t think I’m going to be able to get myself to the hospital on Tuesday, and on top of all this I live in Melbourne so we have COVID to deal with which means no one can come to hospital with me I have to do this alone. I am terrified of having the port put in and the thought of it being in my body for so long is terrifying to me I am also completely terrified of the chemo and all the worry it will cause me between treatments having to monitor temperature etc etc will be so stressful for me. I have tried conveying this to various people (Doctors, Family, Psycologist) and all they say is you have to do this and take one step at a time, I feel like no one is really grasping how terrified I am and no one is helping me with the mental side of this, am I the only one that feels this way please HELP me as I don’t think I can mentally survive this and am seriously considering not going on Tuesday.
Feeling "blue" on tamoxifen
Hello there, has anyone else felt flat, down in the dumps after starting tamoxifen? I have been on the little white pill 20mg for 2 months now, and my anxiety levels are also quite high, but I do have upcoming scans and alot of worries still. Any pearls of wisdom for helping to overcome my flatness? I exercise daily, trying to eat as healthy as I can. In all honesty I do miss a little bit of alcohol to help me relax!! Thanks ladiesRise of the machines😩🤬🥴🤢
Is anyone else terrified of the scanners, the beam, the other thing that’s round? It’s been building for weeks. I can call it out right now. This is my first “phobia”. It’s not claustrophobia. Just looking at them terrifies me. And so does everything else - the powerlessness, it’s impersonal and cold, it’s poorly organised, the staff nothing special, not helpful and simply got a job to do, and seem completely unaware of how utterly horrible the machines look, how disempowered and vulnerable a persons may feel. I have endured this for all the presurgery scans of machines I don’t even know the name of. And then some staffer asks me to tell them what tests I’ve had. I don’t know! My wallet knows. I’ll ask my wallet. How bout I do that? WTF do you not have records of what is happening to me? Now the idea of my ugly fat self and my ugly fat disfigured boob popped out and exposed while lying on some fugly board attached to what looks like an instrument of death, in a fugly room while people stare at me, and doing it every day, yeah that’s more than I can do. I’ve read about shorter durations etc for radiation, but nobody has mentioned to me who gets this? Why not me? I am starting radiation therapy next week. Has anyone ever bailed on radiation? ie not complete it? Is there a way to make this less terrifying? I could give it a go but may quit. I don’t think I can do it. I wasnt scared or anxious when being told of the breast cancer diagnosis, or and wasn’t anything other than upbeat during the surgery. This machine scanner boobs out bullshit. Nup, nada, nope, That’s how I feel today.Home from Surgery
Hi, I'm home now (yesterday) and it's over. On the morning of my mastectomy surgery (Monday 18 May) I was feeling quite anxious but trying to remain positive at the same time. The staff were lovely but I found not as friendly as my first lot of treatment for wide local excision with nodes removal or perhaps it was me with more major surgery to have and super aware of everything around me! In recovery I had quite a bit of pain they had trouble getting me to a pain free point. Then taken back to a room to stay overnight. I was advised to peek at my scar as soon as possible and not to avoid looking as I would feel worse if I delayed looking. I could see a line of stitches when I looked down through my gown and thought well that's it! Snoozed in and out a bit with some pain relief. But didn't sleep much through the night. Doctors and Nurses saw me on Tuesday morning and asked how I felt and said they would perhaps look at sending me home on Wednesday and I could stay Tuesday night and sort out the pain relief issues. Nurse said to have a shower and see if this made me feel better. Well being a bigger girl getting dressed and undressed in front of a stranger is something I have struggled with. I married my first boyfriend! Young female Nurse was lovely and said she would help me. Being an independent person and sometimes stubborn I said I would try myself. Managed to get undressed - not easy I tell you. Someone needs to invent Velcro undies so I don't have to bend down to remove undies. I managed to fling them off around the room avoiding looking at myself. I turned the water on. Put my heavy drain tube bottles on the floor. Turned the water on and looked in the mirror. Well the sobs came loud and hard. The running water didn't drown them out as I had hoped. I knew I had to let it all out so I could deal with it and move on. Lovely nurse called out. Are you crying. I said nooooo. Sobbed louder. She said it's OK if you are, are you crying and I said yesssss. She said do you want a hand. God no, because now I was a hideous deformed beast! Stayed in the shower a long time and was ready to attack anyone who said it's time to get out. Someone else would like some hot water! Took a long time drying myself and put my brain back into gear with well - bad boob gone, want to live. It will heal. The hardest thing now was how do I get my legs through my undies! Wrapped myself in a towel and asked the nurse for some help. She was lovely. Wishing I had packed a lipstick because I wanted a bit of colour of my face. Nurse said I would feel better after breakfast. Had a few bites of breakfast and then threw it all up. Waste of a good shower. Got cleaned up again and had black tea and savoy biscuits
Docetaxel Side Effects FEC-D
Hi there, I have just finished 3 rounds of FEC and having my first of 3 rounds of DOCETAXEL on Monday. I am really scared of the side effects, especially the potential of having a reaction. I would love (with great apprehension) to hear your experience if you had this treatment. Ive been told by the oncologist to wear black or dark nail polish during the next 3 treatments without removing it, to protect my nails. My chemo is for Triple Negative breast cancer. Thank you in advance xxStruggling with my mood
Saw my oncologist yesterday for the pre-chemo check-up. She started discussing Tamoxifen & Anastrozole with me. I've read up on them before and, while I know some people have no troubles with them, others have a lot. So until I start taking them, I will have dread. Seven years the onc reckons. It's challenging to contemplate seven years of suffering. It's my last chemo on Tuesday. People keep expecting me to be happy but I don't feel happy at all. I am as flat as a tack, sad, and cannot contemplate the future with any pleasure. It all seems so futile. And in between those two phases of treatment is a bi-lateral mastectomy and reconstruction. Daunting. Being slammed into hard menopause sucks. I don't sleep well. Will I ever again? I'm doing everything I can to maximise my chances of life. I presume one day I'll feel better about it, but for now I feel like I'm just going through the motions. I can't get my shoulders down from up round my ears I'm that tense. I'm trying to stay in the moment, but failing, and positivity is completely beyond me. I'm just so tired. I don't want to see anybody, there's hardly anything I want to do. I've got friends coming over today but right now I just wish they weren't. Is it OK to duck out mid-afternoon for a rest? Cried myself to sleep last night. I'm aware that most of us have bouts of self-pity, but this feels different. An absence of good spirits. One day at a time is not working for me at the moment. Sorry for the whinge. Just needed to get it out. Where better than here and all you lovely women.
