Trying to Stay Positive my journey
"You look so well, lost weight" comments from people l may have not seen for a little while. Thank you l say with a beaming smile, they don't know, should I tell them or not, I don't.
l have stage 4 metastatic breast cancer incurable and aggressive l've been told, the little devils have been having a great road trip partying around my body setting up camp in several spots in my spine, hips skull, lungs, ribs, nodes.
This diagnosis came about totally unexpected after an unrelated ct scan for my nigglying cough. Thank you to my great GP for insisting as I wasn't going to have it only had a slight annoying cough nothing to be concerned about. Radiologist saw suspicious lung rang spots rang gp, gp rang me and within a week after bone scans biopsies etc l was sitting in the oncologist office "best we can do is try to control this" silly me asked the question as I was still thinking this is nothing to be concerned about, how long if I don't have treatment? "12months" so here I am on the treatment.
My life turned upside down and inside out in May 2018. I am now on letrozole and Kisquali (Ribociclib) and l am nervously awaiting my scans end of next week to see if this treatment is working. I am usually a happy positive person but seem to have fallen into a bit of a hole at the moment. I find it very hard at times with people telling me you look well, you're an inspiration, bla bla etc etc, when all l want to do is sit in the corner and cry. It's especially frustrating as l've already had bc in 2004, "it's only dcis" treat with radiation but the returned so left side mastectomy/reconstruction 2006, then recurrence right side 2012 "it's only dcis" again radiation and lumpectomy and l can get on with my life and nothing had shown up in my regular breast mammograms
BUT some little party going cancer cells escaped and have been waiting and now have had a great road trip around my body.
I find it really hard to talk to family and friends about how I am really feeling as I worry about how they are coping, so sharing my story here has already made be feel positive again, reading threads of what all the other wonderful ladies are going through is truly inspiring.
I'm trying hard to stay positive for my next appointment with my wonderful Oncologist on 1 Nov and that she will tell me there is no progression.
enough of my rambling thankyou for reading my story
Comments
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@Suzi14 im so sorry for what u r going through. Life can be so incredibly cruel! The forum is a great please for support day and night. There is always a shoulder to cry on or someone to have a laugh with.
Have u joined the metastatic group?
Sending u big hugs and all my positive vibes for your scans next week - I so hope your treatment is working. xoxo1 -
Gosh, @Suzi14 - what a massive upheaval in your life just now. Damn! That is also just SO bloody UNFAIR too!
Definitely join the Mets Group @Jess_BCNA @Danielle_BCNA
can you help with Suzi joining?
And throw up any questions/observations that you have in the regular forum as well ..... I am sure others will be able to help with any queries.
I have a few friends with Mets (not all from BC) - and so far, they are doing what they love doing and living as well as they can, going overseas & doing stuff with the family .... their meds are really helping them with longevity and quality of life. I am thinking your meds will keep you on track, too.
We have plenty of wonderful stories here, too ..... xxx
My heart goes out to you and your family as you & they come to terms with this .... hugs & kisses coming your way! xx
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Hi @Suzi14 sending you a private message0
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Oh Suzi I'm so sorry that this wretched disease has got its teeth into you. It bloody sucks. All I can say is that we have a number of folk here with mets who are doing well on the various meds that are available now.
Hang out here for a vent, a question, a muse and even a laugh. This forum serves many purposes not the least of which is taking a load off our friends and family. I don't think they realise how valuable it is!
If you're feeling positive, go with it. But if you're not, don't beat yourself up about it. I find the pressure to be 'the good patient' difficult, and psychologically it's better to feel all the feels.
You know the ropes in so many ways. The biggest hug luv. K xox1 -
Hi @Suzi14. Sorry to hear about your mets diagnosis. I have mets in the liver, spine, nodes etc.. It is hard to stay positive all the time. I have my good days & bad. But I live life to the fullest now & create memories with my kids. I also feel like I cant tell my family everything so I see a professional counsellor to get things off my chest. This forum also helps because there are lots of wonderful women here who get what you are going through. All the best for your appointment in a few weeks.2
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All of us fear that some of the cancer has escaped. So sad you finally felt less fearful of that only to find out it was sneakily hanging on all that time. So bloody unfair. But on you go girl. You've fought twice now and I know you truly will find the strength to carry on and keep the waters at bay. Kath x1
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I'm not quite sure what to say @suzi14 except that this disease is a bitch on wheels. I can fully understand your feeling of being in a hole and people telling you how well you look, while well-meant, doesn't help. I hope that you can get some of your positivity back and, of course, that your scan shows improvement with the mets.0
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Hi @Suzi14. Hope you are going OK.
I also have mets., diagnosed in July, 2017. They are in my bones from my skull to my pelvis and in my liver. I also had precancerous cells in my lungs.
This is a recurrence after 15 years.
I have had a mastectomy, I.V. chemo., Tamoxifen for five years, breast reconstruction, implants, nipple reconstruction (which I watched the doctor perform), tattooing, replacement of my implants, another nipple reconstruction, more tattooing and needling.
Two and a half weeks ago I started taking Palbociclib and Letrozole after I.V. chemo. and oral chemo. The only side effects so far are hot flushes (again, grrr..) from the Letrozole and the Palbociclib sometimes makes me feel faint or my heart races.
So, I work part-time, do aquarobics, yoga, walk, garden, do my housework and just get on with life.
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Not much you can do with the hand you have been dealt but accept it and make the most of life. I think meditation alone or in a group would help. Mind can help body and that stupid cancer needs to put a lid on it and let you function hopefully for many years. My old dad at 78 has had cancer for about 20 years. Its mostly in his bones including his skull but hey, he still walks and lives alone. He's a trouper and you can be too.
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primek said:All of us fear that some of the cancer has escaped. So sad you finally felt less fearful of that only to find out it was sneakily hanging on all that time. So bloody unfair. But on you go girl. You've fought twice now and I know you truly will find the strength to carry on and keep the waters at bay. Kath x0
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Thankyou to this wonderful group. I lve just reread all these comments from 2018 and has made me feel ppsitive again even if l am crying at the moment. So much has happened since then, moved to Vic to be closer to families, then covid. My BC mutated to triple neg, and riboclib no longer working. Now on chemo have had 16 rounds and told on NY eve that it is no longer working, ca markers jumped frpm 72 to 360 in 3 weeks. Where to from here, anxiously waiting results of scans next week, all l can do is make the same vow to myself as last new year and that is to still be here this time next year7
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I like those vows you make to yourself. I hope you’ve had that cry you mentioned you wanted to have in 2018. It’s hardly being an inspiration if you’re fighting for your life. I don’t think anyone wants to be that kind of inspiration. It’s a tough thing, I hope you haven’t neglected to do special things for yourself. Little treats that make you happy. Treat your soul and spirit, as well as your body.Let those tears roll. Then give yourself a pat on the back because you have been doing pretty well 💟.3
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Best wishes for your scan results! Sending positive vibes and a virtual hug ⚘1
