Are you a breast cancer survivor who happens to be childless?
I have been a member of this online network since 2014, just after my diagnosis. At a recent breast cancer seminar at a city near where I live, something hit me like it hasn't in all this time, the subject of survivors who happen to be childless. I thought to myself, "Noone talks about this. Why?" This has led me to do my research, as you do, I found this demographic of women are at higher risk of breast and ovarian cancer. It is explained this way, you are at a lower risk of diagnosis if you have children. Interesting I thought, Nuns are at a higher risk of breast cancer and ovarian, not that I am a Nun but an interesting statistic that gets me thinking. Which brings me to why I am posting. I am putting it out there in a courageous way to see if there is another like me. Courageous because for 30 years after my extensive efforts to go forth and multiply I walked away childless. The one thing I learned was to keep it to yourself as I found there were lots of people willing to give you their advice, just like they do with breast cancer 'cures', an emotive issue is best kept to yourself for your own emotional survival. I am running a personal survey just to see if there are other women within this network who are in the same boat as me. Does anyone else feel a little left out when sitting in a seminar and not to be included in the discussions? I tell ya, there is a real sense of alienation, but culturally we are told to, 'just get over it', which is fine and life for me has been fulfilling in spite of it all. My GP doesn't know of another single patient like me which isn't very encouraging in finding my tribe, my mother always said I am different when all you want to do is be like everyone else. So please step forward if you are like me or if you know someone who has a similar story. I feel it is a subject that needs discussion and inclusion because in society we, the childless women are 1 in 5, by choice or by circumstance. Cheers Janet
Home from holiday
mixed emotions coming home. Whistler Canada was like a fairytale land. The cold agreed with me the lymphodema stayed under control and the swelling on the flight was no more than a hot day here at home I was certainly glad I didn’t have to suffer that lot. Left Sydney on a 45 degree day and arrived in. Whistler to a low of -3 to about 2 most days. The Wedding was spectacular seeing them marry where they met at the stone circle in a sprinkling of snow. And after the ceremony they snow boarded down the mountain in their wedding gear. If only I could afford to go back. I would spend every summer there. LA was different and Disney fun but was a bit disappointed the best parts were closed for maintenance. At least while I was away it was like the last few years hadn’t happened but now I’m back and nothing has changed. Same struggles. Oh well reality bites and I will soldier on. Next is to get some real hours back at work. If there are any available
Screaming inside
I need to vent. I want to scream, slam doors, hit something Two days ago my daughter visited & told me she has been diagnosed with advanced breast cancer. She was strong, composed, not emotional as she talked about it being treatable, not curable, talked about updating her will. I think I am still in shock. We have since spoken on the phone, particularly about how & when she will tell her two children. We are taking her tomorrow to her first chemo appointment & I need to remain calm, as that is what is necessary. When I told her in 2011 of my diagnosis of early breast cancer, we were calm & positive together, though she did blink away tears. I always felt throughout my journey that things are more difficult for the carer than the patient - now I am experiencing that role & I can't stop the tears. My dear husband is quiet as he always is, but I know he is shattered. Now that he has gone to bed I can let tears flow & write this. We are angry - why didn't she have regular mammograms after my diagnosis? Why did no-one pick it up earlier? I feel guilty - is it genetic - my mother, myself - even though both diagnosed later in life? Guilty too because I just want to hold her while we both sob – but that won’t help her. Fortunately she has a best friend, one who supported her through her marriage breakup; there are also other friends, but my help will be needed too & I must be strong when I feel like collapsing in a heap. Any advice, suggestions on how best to support her & the kids would be welcome.
I've Had A Week
In the last seven days: - I had a Covid19 test - negative - I finally got the guts up to raise body image and sex with a doctor during a telehealth consult with a doctor at a menopause after cancer clinic. Not a single doctor has ever raised this subect with me. - I had a check up with my breast surgeon. Back again in six months instead of 12 because the right foob is lumpy. - My son came to me in a panic about finding a lump on his testicles, I took him to the doctor, and then back again for the ultrasound results. A cyst, thankfully not a tumour. When I was telling him to calm down he said "I know Mum but it's US". - My youngest got her first period. And all this during Stage 4 Lockdown. I am exhausted. I feel like I'm always on high alert. Stop the world, I want to get off... K xox
Lego! Feel like a kid again
Well, I’m 5 months in to my BC journey & am going to be off for at least another 5-6 more months (2 surgeries & 2 x rounds of AC chemo down, 14 rounds of chemo left, then radiation, then hormone therapy). I kept stocking up my spotlight online cart, but then I thought with my track record of not completing much craft, I turned my idea to Lego. I bought the kit of ‘The Office’ & I think this is something I’ll actually finish! The kids are sad because I told them they could only play with it if they were in character 😂 I’ve let them build the characters & help pass me pieces, but the structure is all mine. I’ve done Michael & Pam’s work areas. I’m trying to pace myself though. We’ve got to treat ourselves right, this is a crap thing to live through. Any other Lego kits anyone has completed or can recommend?
Go Forth...and live your life!
Hi Everyone, It has been a LONG time since I have been back online. The past few months have been one hell of a road trip indeed. The months away have been spent, trying to get through numerous rounds of chemotherapy, each one systematically throwing endless side effects that eventually took their toll on my health. I spent a fair bit of the time crawling my way from bed to bathroom with months of diarrhea and having a good cry session at how "crap" my life had become (pun intended). I had several trips to the hospital with chest pains that had the doctors pretty concerned, only to realise my body was rejecting the chemo but I persevered till the end. I THINK the doctors thought telling me "Wow, we didnt think you would survive?" was somehow reassuring - ah that would be a negative! Thinking I would get hopefully some sort of break between chemo and radiation was delusional. 3 weeks after finishing chemo, I was laying on my back, topless getting zapped for 6 long weeks. My skin handled the radiation exceptionally well, until 8 days after the last dose, I woke to horrendous pain, the loss of the use of my left arm and covered in about 400 blisters from mid torso to my neck and around my side. I discovered I was highly allergic to the flamazine cream, which created huge open ulcerated sections and I looked like I had been baking myself in a 3000 degree oven. Thankfully, all is healed and I am back to looking "normal". The energy levels are still low, the metallic taste is gone, I can no longer look at a Pork Chop without throwing up and ice blocks are still my favourite go to food! I still need the odd afternoon nap, however one good thing has occurred - I have lost over 11 kilos and feel happier. I must admit, the visit to the Oncologist to begin the next step in life - "what tablet shall I swallow each day?" brought some very interesting information that had previously been unspoken by the medical team. It is amazing when a new doctor takes over from the old one and inadvertently informs you some facts that had been kept VERY quiet, in fact I think the C.I.A. would have been impressed by the secrecy....it has made me wonder whether the rather blase comment of "Go forth and live your life" uttered by the Radiation Oncologist was a standard routine comment, so they can sign you off the books? When the word "IS" is uttered and not "was" when talking about my BC, made my eyebrows raise. Anyway, while I wrap my head around the sheer fact that I have surprised my medical team by actually surviving - no, I am not joking! They seemed to take great joy in telling me that over and over. I am trying to get my life back into some sort of actual semblance of activities that dont evolve around the word "Cancer". Slightly hysterical in actuality considering that has been the number one bloody owner occupier of my life for the past 12 months! By the way - Letrozole (Femara) seems to be the chosen tablet for the next 7 years of my life. I have been researching the side effects and I seriously hope and pray, my body along with its constant companion LUPUS, doesn't resort to throwing every single one of them at me! I am to be honest, dreading it. If you have managed to get this far......I have a question - has ANYONE REFUSED to take the medication and if so, how has it affected you?? I am asking merely to give myself various options so when i see the Oncologist - I go armed with information and not merely accepting their word as gospel. I have learnt over this past year, as much as I wanted to hide my head - I cant and couldn't. I needed to know what I was up against and also in some cases have serious discussions as to alternatives with the Medical team.... just so i could survive. So for the next few months, while I do the routine scans, tests, bone density, teeth check and wait to see the Oncologist again - I am looking forward to welcoming my third grandchild into the world (our first grand-daughter), see my beloved friend get married to the Love of her life and spend time swimming before the cold once again hits us. Life is sweet....hectic but sweet. I can now enjoy simply being LOIS once again.... Big hugs and thank you for reading this! LoisFriday Update From The Roller Coaster!
While I sit here at the top of my Roller Coaster, with my ear phones belting out Hot Chocolate's "You Sexy Thing", I thought I would update the week that was.... I have even handed over the Remote Control to the Hubby....He has been watching some monotonous toned show about some equally monotonously boring hypothetical evolution of The Mayan. (Are you asleep yet from reading that?) Imagine me prior to the headphones, being held hostage because my computer is in the lounge room!!!!! L..M.A.O. Poor Man, he has had a seriously rough week and finally let out all his worry and stress after me quietly asking him too - so I gave him the remote control. I know, I am a good wife but he is bloody Amazing!! Monday, I woke up to TWO things: 1. A brand new song in my head. 2. Pathology / Scan Day 1. Seriously, a new damn song! If I didn't know myself so well,.....I might have the inclination to believe, Lois needed some meds or intervention! L.M.A.O. Even, I had to take a moment to elevate the relevance of this latest song - simply because the title has so many connotations! I got woken to The Gorgeous tones of Barry, Robin and Maurice Gibbs singing "STAYING ALIVE". Minus the luscious image of a very gorgeous young John Travolta Strutting down the streets of New York. (Disappointment). So, while the Gibb Men belted out the song, i laid there, thinking about the title, the lyrics. I believe in fighting for my life, my family, my beliefs, my moral code and have always advocated for the underdog through situations in my life - I am going to "Stay Alive" and walk the streets of my life journey, head held high and give it all my determination, strength and courage. Staying Alive, Staying Alive...yeah! 2. The Bone Scan / Pathology meeting. the Bone Scan was easy - get injected, come back a couple of hours later, lay down, pretend you are on a beach for an hour, get up and leave. I was in agony with my arms being placed behind my head but least this radiologist tried helping me ease the pain with pillows. 1 pm: I met with the Surgeon and Breast Care Nurse. Got belted into my seat and prepared for being blasted out into a momentary flash of "wow I can cope with that view, before hurtling off at warp speed into diabolical, death defying angles.....of my roller Coaster. First words I got greeted with: Wow, we did not expect "Brian" to be so H.U.G.E.! or get 4 Positive nodes!" You and Me both! the C.T. full body scan showed I was clear of any metastases to the organs - YOU know the relief that brings! - the bone scan imagery "looked all clear" but within an hour of leaving the appointment, I was being told I was having a P.E.T. Scan done Thursday, because it was "ambiguous." Polite term for: Oh Geez, I seriously can't make my mind up and I am feeling slightly overwhelmed with having to make a decision - right now! As my kids would say: YOU HAD ONE JOB!!! lol. The appointment got even better:- Any thought of "escaping" with a lumpectomy and a zap of radiation went out the door. Instead, I have been upgraded to the Penthouse Suite - Mastectomy of the left breast, complete removal of nodes, chemotherapy and radiation. Discussions about: time frames, surgery, Oncology teams, hospital appointments and mastectomy bras, scars, healing, chemotherapy (that was an eye opener!) and what seemed like a brain overload of info - all within an hour. However, one discussion brought up a slight bit of "Doctor - I could cheerfully smack you over the head".....being left with one size 22DD boob hanging off my chest wall and why the hell I cant just get both removed NOW! yes, yes, I know the cancer is the primary occupant to be evicted but seriously, the absurdity of the "look", "weight born on one side' and yes, I will admit - that one boob being a constant reminder. I left there feeling relieved, frustrated and feeling like I could have sunk at least 8 very stiff, dry Martinis with super ease!!!!!!! Another few days sitting at the top of the roller Coaster, while I wait for the results to the P.E.T. scan and surgery date for the mastectomy. So, as I sign off.....I leave you with a Song title "Better Together" by Jack Johnson! My Life is always better spent together with my man and family. Big Hugs, Lois (who has also been making Chicken Noodle Soup, while listening to music in the kitchen!)
My brain finally gave me a break for Easter
Hi all, So I am 17 months on from Dday and 8 months on from chemo and rads. Breast cancer thoughts swim around my head daily, sometimes constantly, sometimes only a few times a day. But it's always there, lurking in the background, interrupting my life and disrupting my thoughts at the most inopportune moments. It gets worse the longer I take tamoxifen. I am normally pretty good at packing shitty horrible things in a box in my head called "Keep the hell out of here". This seems to be a little harder and taking a little longer than normal for me though. However, I am very please to say I just had the most awesome Easter long weekend. We had an extended family holiday planned, and with my new "Say yes to every invitation" motto off we went to Yamba. I baled off the Tamoxifen in preparation two weeks ago. Naughty. What a beautiful place. We went out on the boat, fished, swam in the rock pools, drank (probably way too much). I have not laughed so much in so long. It wasn't until we were driving home that I realized the "B/C bitch had stayed out of the way for a while.. Woohoo. Now, how to keep it gone??????? More holidays me thinks.Nature
Recently @Summerhill38 had posted a photo of her new babies that had hatched. The last couple of nights we've been wandering the garden and came across Scarlet Honeyeater - apparently it is unusual to have these in our part of Victoria. "...Normally from Queensland, the scarlet honeyeater regularly heads south in spring but rarely strays further than Mallacoota, on Victoria's eastern tip..." Hubby managed to capture a couple of good photos of the male bird - enjoying our lemon bottlebrush
