So fed up of people who don't live with this day in day out putting time frames on this. I was in high spirits as usual before my phone call with nurse today. We were chatting about my position, positive vibes and headspace. I felt I was responding well to treatment feeling good overall, entered into a conversation about feeling like there could be new treatments for all of this if we hang on in there. Then she had to go and mention the 5yrs stage 4 thing!!!!! Aghhhh . So many people are smashing this time frame!
I am visualising smashing this too, with all of my will. No time frame should be given then we can live with just some kind of normal existence. I am not blinkered I understand my new normal and know what could happen but I choose a life worth living and that for me is getting on with it, and hoping that I can maybe live many more fruitful years.
So sorry for the rant I just needed to share with whomever reads this, you are the ones that know the truth in this roller-coaster ride and the strenght we have in us as warrior maidens to fight this battle. Well I'll shake the comments off once again and put my arms up in the air with a smile on my face as I ride out the next few rails.
Regards Ali
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Wishonastar1
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A town clerk officiated our daughter’s wedding. When they met with her a few weeks earlier, she asked our daughter if my husband would stay in the house after I’m gone!! Our daughter was flummoxed
I didn’t hear about this until recently. The wedding was lovely. But I would’ve suggested our daughter find a replacement.
The unthinking, selfish, rude Town Clerk infuriates me I’m sorry you encountered such inappropriate behavior
The lack of empathy of some people is absolutely crazy! So sorry that you and your family had to deal with this. These people can set the mental battle back weeks hey! May make myself a pack of stickers with a rude slogan about this and offer them one next time I encounter such people. We are the ones who excuse their rudeness and lack of empathy for ignorance and give them excuses eg 'Oh well they just don't know what to say'
Hello Wishonastar1; I was diagnosed with Stage 1 breast cancer in 10/2006. Jan 2015, diagnosed with Metastatic Bone Cancer. Oncologist said I had 3 to 4 years. It has now been 10 years and 4 months. I thank God every day for all those extra years. Don't get down about what ignorant people say - they are ignorant only because they don't know about it until they have it. Just release that frustration, take a deep breath and be happy with each day and expect many more!
I am right there with you! I call it a “forever” cancer if asked about treatments…so as long as I take treatments that work, I’ll be ok. And don’t get hung up on the statistics! There are three kinds of lies.
Lies
Damn Lies
And Statistics.
The numbers include so many patients who are diagnosed late, have other co-morbidities, don’t get the treatments because of money, advanced age , or choose to take alternative treatments that may not work for them. So go with the positive vibe. Yes, there are new treatments being dreamed up every day…Piqray, Truqap, fulvestrant, enhertu…all these are the newer drugs and some I don’t even know about. Keep on keeping on, as they say. Buy ya4n and crochet, sign up for yoga, eat cake…and take your meds . Don’t listen to Debby Downer. One day, our journey will end…but it’ll end for everyone else . Until then, please enjoy the life you have.
Dragonfly, I love this! Big love to you and warm hugs! "Forever" is right. I had finally got to the point where I was living life without numbers... '8 months in.' Thanks for the lift and reminder that statistics do not matter! I always try to shrug off these comments quite quickly. I'm sure I'll get better at this with time. Visualising a long journey ahead!😘
Sorry you've experienced this!! Unfortunately I think we all have had some run in with similar issues...I'm 4yrs in now from a de novo diagnosis at 50yrs old and I still have people doing a double take when they haven't seen me for some months as they're shocked to see me "still"alive...(Idiots!). Then there was the "friend" who upon learning of my situation (very early into the diagnosis) took it upon herself to give me a detailed description of her version of how my future would pan-out ..."progression...chemo...progression...death in a few years"???? She was not in anyway a medical practitioner...she was a librarian and a big hypochondriac herself and I've not spoken to her since.
The story I take encouragement from is one my oncologist told me....of a longterm MBC patient of hers who she has treated for more than 20 years. She had started her treatments long before the meds we now take were even available and she was still alive in her 80s and was now having health issues unrelated to cancer (Parkinsons) that would probably be her demise....(meaning she wasn't actually gonna die from cancer)....and that there were now so many new medications available to us that if the lady wasn't unfortunately having the complication of Parkingsons, she would now be taking also.
Live the life that makes you happy and try and limit your exposure to the multitude of idiots out there!!!
We are more than statistics!!
The stats are usually connected to specific medications and have been released by the pharma companies that produce them.....they often say things like "improve/ extend life expectancy by 6mnths"....etc....but that's because the trials at that time were only one or two years long and there were no figures beyond that. There are many here still on their first line of CDK 4/6 meds after more than 5yrs....and there are so many more med options available now ...and new ones in research too!.
Love this Zoe, I am 53 and diagnosed last year also De Novo. Love the community here, thanks for lifting my spirits gorgeous warrior queens. We can do this!😍
Sorry to read your experience but I think it’s unfortunate that majority of people don’t understand anything about our cancers. They hear stage 4 and they have us dead and buried. We are individuals trying to navigate this disease the best we can and such comments can truly set you back mentally.
The nurse practitioner in the NHS clinic when I first started Kisqali told me in a very matter of fact way that next time she saw me she would expect my fitness to have depleted by a third and I’d also be experiencing horrendous side effects. I was rocked by her words but something inside me was like I don’t think so! I was determined to show that nurse otherwise! I’ve been very fortunate not to have any side affects after 14 months nothing but hair thinning.
My GP surgery called me the next day to go through my end of life plan! Had I thought which hospice I’d like to attend and had I completed my will and put my affairs in order. I actually laughed in utter disbelief at the nurse in the call. I had just finished a double Pilates and Yoga session I was getting changed to go for a swim.
It’s all about education isn’t it. I’ve no time for anyone who shows any negativity. I love this quote "I think we can tune into the fact that we're temporary and not make it morbid necessarily and use it as the spark plugs to get on with the business of living”.
Thanks for thr positivity. Not that I would wish ill of anyone - but yes, any one of these people could 'go' before any one of us. They don't know their fate either. I remember standing in the school playground chatting to one of the dads who had just been diagnosed with cancer. I was asking if the family needed anything, meals, help with pick ups drop offs etc. This was about 5 months before my diagnosis. All the while I had it in my body too.
I also ignore the negitivatrons, but just wish they had the compassion to try to put themselves into the shoes of others before make comment. Wishing you amazing times ahead and to see all the things you hoped and dreamed for. ❤️❤️❤️
Just a bit of encouragement with the hair thinning...not sure if we're on same meds...I'm on letrozole, ibrance and Zoladex....was originally on kisqali for first few months of treatments. I had a lot of hair thinning and I think it was mostly due to the hormone shift (blocking all estrogen).
It has improved now and is back to normal. After about 2 yrs I saw a huge difference. Texture is also improved as it went very brittle as well as thin in the beginning.
I did cut it shorter...from waist length to a jawline layered bob (thank you Tony&Guy) and I think that also helped to strengthen it.
I am not a statistic! Unless I ask, I don't want to know the textbook statistic, it is dehumanizing. Many women are long thrives and as long as I feel well, I will keep going.You are right, there's new treatments in development, clinical trials and most importantly hope
Well said..and yes it's about mindset and our own personal journey..how we choose what path we take going forward is always going to be hard..but it is what we make of it without the statistical time frames that can be put on it.everyones journey is different and personal to them and those around them..a roller coaster for sure but let's make the ride a good one even though we have down days ..this group is amazing..bless you all
I know exactly how you feel! I was given 5 years to live and it’s been 4 years for me! My last pet scan showed some bones are still healing and some stayed the same.
At the last visit as I sat in my oncologist’s office crying my eyes out due to fact that I felt like a zombie on my 100 mg Ibrance and wanted to reduce to 75 mg, she finally approved that but had the nerve to tell me that I would soon come to the point where I would see progression anyway! Like WTF? Really? I’m just not a milk carton with an expiry date!
Since my diagnosis, I have rented stunning luxury villas all over the world and I will them with fabulous ladies with (mostly) stage 4 ladies!
I’m loving my dream and I’m happier than I was before this stage 4 diagnosis! It gave me freedom and a second chance at life!!
Just came back from Merida, Mexico and Costa Rica and up next is Mount Shasta, CA, Lisbon & Madeira for 3 weeks in Portugal, end of October Curacao and next Feb La Paz, Mexico!! Who’s laughing now? 😂 🤣
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Started on piqray & fulvestrant yesterday
TMs up so went for a PET/CT on April 1st
Anyone heard of Piqray?
A community of HOPE 
