Fragility
I just wanted to share with you all that today is a sad day for my family. We have learnt that cousin, not too much older than I, has lost her battle. Primary was Breast cancer but in time her body rebelled; the duodenum was where it was detected. She is now at peace. Just a reminder how fragile we all are. Today is a reminder for me to take stock around me, be thankful that mine is under control and not to become distressed (scanxiety) over the constant tests. My next round is 30 June. Take care all xx
I’m Not Cancer but Cancer is a Part of Me
I have been living with cancer now for nearly 10 years. It would be stupid of me to say that cancer has not changed me over the years. My illness is terminal but treatable and I still have a very good quality of life. I now accept cancer as part of my being. It has certainly affected me physically and mentally. During my journey there have been 8 events that profoundly affected and changed me. Having said this, I do believe I have never lost myself. “Cancer” has challenged who I am but through it there has been a lot of self-discovery along the way. Some of it good some of it bad. My circumstance has not allowed me to forget “cancer". Living with cancer, you overcome one hurdle, feel good for a while, then it’s back again. Because of this, I have lost my personal sense of safety and health. This year my intention was to take some of that back by undertaking gym work under the supervision of an exercise physiologist, which I enjoyed. Then was faced with another hurdle. Through long term use of bone density drugs, my femur shafts become brittle and fractured. This resulted in having femoral rods inserted in each femur. Following my operations, I refractured twice so this “hurdle” has lasted since May! Easily my biggest test living with cancer. None of this is character building, it tests your resilience. Thankfully I am turning the corner. Ok you may say oh poor Karen, but you always meet someone worse off than you. My gym sessions were at a Rehab facility where you see people severely traumatised. I admire their courage and determination to gain some mobility. Because of cancer I now have bucket loads of self-discovery, teaching me to be more tolerant, slow down, be unselfish and compassionate. I am still working on “me” time. I think this is difficult for women. I have greater compassion for people facing illness and adversity, particularly those who do not have the same level of determination, positive attitude and fighting spirit which I seem to inherently have. There is one aspect of my behavior which I’m not proud of. My life goal has always been to be gracious and seek the high road, but at times my actions prove that I am not quite there. Truthfully, I work hard to ensure that I don’t look like a cancer patient or inflict my predicament on those around me. After all, it’s no one’s fault that I have metastatic breast cancer. At times I have made some pretty bad jokes about dying. I have often been flippant with my husband about my mortality not thinking how this affects him. I have jokingly talked about my mortality to my friends in a non-sensitive way. I now make a conscious effort to not do this. It upsets them. I read this quote somewhere and it resonates with me “You are not dying from cancer; you are living with it!” It’s so right, and I have embraced that sentiment. For many years I saw my career as being a big part of my identity. As my disease wasn’t going away, in the end I was treated differently which affected me emotionally and financially. What had been my normal lifestyle was turned up-side-down. Myself and my family had to adjust to this big change as I was the major income earner. This has and still does test our resilience. Technology is keeping us living well despite our underlying disease, yet we are finding we cannot work. I would like to see a flexible workforce for people who are living well with cancer who can work are encouraged to stay working in some capacity rather than eat away at their life savings and ultimately find themselves prematurely on a pension. Now I focus on my health and my mindset. I have been an excellent advocate for myself and have actively participated in the management of my treatment. I am a BCNA Consumer Representative and have enjoyed the assignments that have come my way. By nature, I am an optimistic person, I am very thankful for my blessings. I have two wonderful adult boys and a supportive husband, sister and extended family. I also have great mates that are a shining beacon. When you are faced with a terminal illness, its these relationships that are your focal point. Bricks and mortar and material things have become irrelevant which have been replaced by experiences shared with family and friends. I know it sounds clichéd, but I take nothing of granted and enjoy every day. You never know what curve balls life is going to throw at you, and it's how you deal with them that defines who you are. For now, I am living with cancer. It is my hope that we obliterate it, but I am not wasting time worrying about it. Anyone that has cancer knows that life goes on and it’s up to you to go with it. Karen Cowley Cancer Lifer for 10 years
Newly diagnosed - Just need some positivity and hope
Hi Everyone. This is my first post. I am trying to navigate this network, because I know I need help. I was diagnosed with metastatic breast cancer only 5 days ago. I have many tests coming up, and treatment options. But for now, I can't seem to find the strength. I just need to hear some positive stories, some good stories, some hopeful stories, so that I can muster enough determination to stop crying for one thing, and to get my anxiety level down. I have an amazing family, and they also need some hope. I am 56, and was originally diagnosed 13 years ago with early breast cancer, and was told "you are cured"???? I am sorry to sound so desperate, but I'm still in that place where my world feels like it's ending. Thank you for reading, and I send hugs to everyone.
Diagnosed on 1 May 2017
I am 58 and have a lifetime habit of healthy living. Therefore,when I was first diagnosed with breast cancer in 2014, like everyone else I'm sure, I couldn't believe it. It never occurred to me I would get cancer. After I competed treatment I did everything I could think of to ensure I would be healthy and cancer free. Early this year I started to experience inexplicable back pain. I also didn't feel myself - hard to explain. After many visits to the doctor trying to figure out what was wrong, I ended up in Emergency at 4am with unbearable pain. I was diagnosed later that morning with metastatic breast cancer - Monday 1 May. Within a week I was receiving chemo and had my first radiotherapy treatment. I am blessed to have a highly skilled, caring and compassionate medical team that I have complete faith in. The resources on this site have been informative & helped me a lot, especially during the first few terrible weeks after I was diagnosed - I'm sure I took advantage of every scan and test available at North Coast Radiology during those weeks. The scans show I have extensive metastasis in my spine, hips and a few areas on my scull; and spots in my liver. The liver is already showing a lot of improvement. Fortunately my brain and other organs are clear. The scans of my spine and hips are VERY scary and the associated pain is no fun. Mindfulness meditation, eating healthily and exercise certainly help. I'd love any advice or suggestions you have in helping to live with bone pain. I read messages of hope and inspiration on this site during that first scary week. I can't find words to express how much those stories helped - I latched onto the hope and advice to live every day well and to set goals. Kitty's message that, "in a strange way, those of us with advanced disease are lucky – we know that the important thing is to enjoy today and to live as well as we can" is forefront in my mind. So ... thanks to Kitty, one week to the day after I was diagnosed I ordered my dream campervan (over the phone on my way to Lismore for more scanning). Since I was a child I have always wanted to own a two tone Kombi campervan (my god parents, who I adored, had one) My partner and I are had saved and planned to buy a modern version in a couple of years but we brought our plans forward. We do have a basic 20 years old campervan we love but is doesn't have aircon. Not so comfortable driving in summer since we moved north! Thank you all for being here. I look forward to 'meeting' at least some of you.
Immunotherapy trial
Just to keep you all updated who are not on our TNBC FB page. I am living with Mets to my bones and 3 weeks ago was diagnosed with liver mets. I am extremely fortunate that my oncologist is so onto it and I was enrolled in an immunotherapy trial the day I was diagnosed (that coincidently opened the following week). Monday of this week I found out I had been accepted and was in the double arm group. The two drugs are CPI-444 and Atezolizumab. Atezo is a fortnightly IV infusion and the CPI-444 (which I loving pet-named my Star Wars cure) is a twice daily tablet. Both drugs have different actions but in short are turning on my immune system to help fight the cancer cells. On Tuesday of this week they closed the Triple Negative Breasts Cancer arm as it was full so I got into this trial by the skin of my teeth. There have been a lot of uncanny coincidences regarding this trial and I am hoping they all mean I am being looked after and was just "meant" to be on it. It is ground breaking technology for those of us with Stage IV TNBC and so far (and if successful which pre-clinical trials have shown) will be the only targeted therapy for us. I feel so privileged and honoured to be a part of this and already feel like my body is different. I am more active, getting up at 5am instead of 8, less tired and have an achy hip (which is a good thing haha - cannot be more mets cos it was all dug out when they replaced my hip earlier this year). I am happy to keep everyone updated with the trial and how things are going, I have my first diagnostic scan in 3 months and the trial is for 2 years.
Medical Cannabis
I’ve recently met someone who had stage 4 metastisised breast cancer and given only a few months to live. She managed to use cannabis oil and the tumours have reduced and 18 months later she is alive and able to work again. I undetstand although medical cannabis is now legal there hasn’t been one prescription processed yet in Australia. Does anyone have any further information on this or know of anyone who has been successful in obtaining it please. Or any trials using cannabis. Apparently there is a huge crop growing in Lismore which is ironic being so close to Nimbin. I feel so frustrated Cannabis is illegal and it’s helped so many people, especially children having seizures. Yet the government will take children from the parents and treat them with pharmacy drugs whilst the cannabis has been stopping the seizures. I would be very willing to try cannabis in an effort to stop my breast cancer metastasising in lieu of waiting to see if it will. I know this is a “hot” topic but as a cancer patient feel we should have the right to talk openly about anything & everything we have heard/seen/tried. Looking forward to your comments. ❤️Mum recently diagnosed
Hey all, I've joined this forum in the hopes of connecting with others. My mum is 69, diagnosed with breast cancer 2 months ago and now has been diagnosed with metastatic BC in spine and possibly lungs (they arent 100% sure on the lungs) as the spots are so small. Shes started oral chemo and hormone therapy today and will see the oncologist again in 5 weeks. She seems to be handling it well so far but she's not feeling sick or anything yet so i guess time will tell. Im sure its going to be a long journey and I'll be here to support her every step of the way. I currently live with my mum so im glad Im here to be there for her. I just wanted to pop in and say hi.
the honeymoon is over.
Hi all, well its been a very quiet couple of weeks for me, I started on the navalbine after a washout period on xeloda and as you know I felt fantastic, however the reality is as the navalbine kicked in things changed, as they do!!, so at the time decided I needed a little break to get my head around things, metastatic cancer is something that you learn to live with, it doesnt happen in a few months more like a couple of years, but you can live with it,its just a matter of changing things around, you may not be able to do all the things you used to, but you can work around that,so her I am again, at seems we have a few new members, welcome ladies, to the forum no one wants to join, but we are a pretty relaxed bunch here and open to all questions and requests for information on anything, I am now 5 and a half years after my diagnosis, which was stage 4, mets to liver and bones straight up, not what I wanted to hear I can tell you and certainly not how I envisaged spending my retirement years, yet here I am, still here ,and about 7 chemos down the track! Its going to be a blistering hot week here in South Australia so it will take all I have to just keep cool, thank goodness for aircon!! My hands and feet are almost back to normal although I still do not have full dexterity of my hands, thanks to hand and foot syndrome but it is getting better,{thanks xeloda} Im not grumbling, no point, my chemo brain is a lot better so will see how my journey on navalbine goes, blood tests every week and then a monthly, back to see oncologist on Thursday and he is talking about increasing my dose, such is life!, still I am here, and making the most of every day, regardless, it might only be lazing around one day or going shopping but I am more clear headed and am looking at some form of short break for myself and partner, at the moment, anywhere thats about 15 degrees will do! So ladies thats it for me, for now, Accept responsibility for your life, Know that it is you who will get you through, where you want to go, no one else, Les Brown - Motiviational Speaker, wendy55
Cost of MRI
I just need to vent. My oncologist suggested I do an MRI to see why I am getting numbness in my arms & legs. I have also been suffering a lot more headaches. Well the MRI cost me $1000. How much do I get back from Medicare? You guessed it ZERO! What about private health insurance? ZERO.... Why isn't this test covered? I don't understand. I have metastatic breast cancer. So an MRI is the only way to definitively test the progress of my mets. Can anyone explain to me why this is not covered. BCNA is this on your radar?
