Life does not end with a stage IV diagnosis (really!)
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42,
See my post above to chloesmom. All the best
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I understand how you feel. My bone met was discovered just before my only child’s high school graduation last year. I was devastated and this thread really helped me - thanks again exbrnxgrl! I am still NEAD
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Hi there - I too was diagnosed last June with bone mets and like you I was terrified. It takes time to process and accept the new diagnosis. I thought I was out of the woods following the initial diagnosis in 2012. It was a very scary time for me too and as a mum with 3 children I was overwhelmed. I can say it probably took me 6 months to really get my head around it.I got lots of help. The day after my diagnosis I saw a physcho- therapist to help me manage the stress. That helped me no end. Now I feel that living with cancer comes the new normal. It blends into your new way of living. You get used to it and adapt. Some days are more normal than others. I have a lot less sad days and moments. I have a lot more hope today and a lot less fear than I did last June. Knowledge is key when you are open and ready for it. It all takes time so you need to very compassionate to yourself and take one day at a time. Let the tears fall. I did for a long time and now I feel so much better. I am a much stronger, resilient person mentally. I look at my kids with much more love and tenderness than fear. I have learned to live for the moment and I have found gratitude in every moment. It takes practise. But once you are over the initial hurdles there is a lot of living to be done. Some things I have learned - you need a good sense of humour ( it will come), do not compare yourself to anyone else, have compassion for yourself, ask for help and discover gratitude. best wishes to you. I never imagined I would be able to write such a reply 9 months ago - and one day you will have that strength to do so too.
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Hi there - I too was diagnosed last June with bone mets and like you I was terrified. It takes time to process and accept the new diagnosis. I thought I was out of the woods following the initial diagnosis in 2012. It was a very scary time for me too and as a mum with 3 children I was overwhelmed. I can say it probably took me 6 months to really get my head around it.I got lots of help. The day after my diagnosis I saw a physcho- therapist to help me manage the stress. That helped me no end. Now I feel that living with cancer comes the new normal. It blends into your new way of living. You get used to it and adapt. Some days are more normal than others. I have a lot less sad days and moments. I have a lot more hope today and a lot less fear than I did last June. Knowledge is key when you are open and ready for it. It all takes time so you need to very compassionate to yourself and take one day at a time. Let the tears fall. I did for a long time and now I feel so much better. I am a much stronger, resilient person mentally. I look at my kids with much more love and tenderness than fear. I have learned to live for the moment and I have found gratitude in every moment. It takes practise. But once you are over the initial hurdles there is a lot of living to be done. Some things I have learned - you need a good sense of humour ( it will come), do not compare yourself to anyone else, have compassion for yourself, ask for help and discover gratitude. best wishes to you. I never imagined I would be able to write such a reply 9 months ago - and one day you will have that strength to do so too.
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What Are DX details? I am still figuring out how to use this site!
Good news is I found out yesterday that mt bone mets is estrogen positive. Having my ovaries removed next week, so doctor is moving fast!
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I am already starting to feel stronger and am so happy I found this community.
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Chloesmom don’t forget to use the search engine! Just put in a word and choose a board and you’ll see conversations under many headings that may contain pertinent information for you. If you find one you want to follow add it to your favorite topics and you’ll see when someone add to the conversation.
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Chloesmom,
Click on Settings, scroll down to signature and enter your details there. Check out a few signature lines to see what type of info people include.
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Hi all. I haven't posted in a while - usually lurk, but wanted to say hello to old friends and to give newcomers some hope. I was originally diagnosed at age 41 (Stage 1) and then Stage 4 with mets to bones (everywhere!!!!!) and liver at age 44. I was terrified, as was everyone around me; my husband, friends, family, kids. It was terrible... 3 weeks in the hospital getting radiation, into a back brace that I wore 24/7, and onto 4 months of chemo. Horrible side effects - had two pleurodesis surgeries to drain fluid in lungs, etc - so two more weeks in the hospital. I think I sat in one chair for six months and didn't even walk to the mailbox. I weighed 100 pounds. (the ONLY positive from the whole ordeal was that for the first time in my life I had thin thighs.) Anyway - all this to say that the chemo and continued Herceptin has worked, and I have been NED for a long time - I think almost 5 years. I get scans once a year, Herceptin pretty regularly and Xgeva shots once a quarter. I have gone back to being very active - running, hiking, skiing, tennis, etc. I have watched both of my kids graduate from high school (that was my goal when diagnosed) and on to college, as well as two step-kids. I am grateful for each day, and I have learned to sort of compartmentalize my cancer and not let it invade my every day living. (this works for me most of the time) My diet has gotten about 500% better, but I do still drink occasionally and I have NOT given up sugar.
I have gone on some amazing family vacations and "girlfriend" trips and have more planned for this year. When I was first diagnosed I wouldn't plan anything more than 6 mo out and I worried the whole way up to whatever the trip was, and now I don't even think about it - I just book it. I work full time. I know I am very, very fortunate and that some day, the other shoe is going to drop but in the meantime, I live as fully as I can. There really can be hope! I love reading this thread and I am sorry that I don't contribute more!
XO
Andrea
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Thanks all for giving us hope
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42young, I’m much older than you are so my life cycle events are different than yours but, when I was dx’ed... My younger dd wasn’t married and I had no grandchildren. I now have three wonderful grandchildren (my avatar pic), both dd’s are responsible, kind adults and a great son in law. I know it seems impossible right now, but it’s quite likely that you’ll live with bc for quite a while, not die from it any time soon.
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Hbfree...your post is spot on. I also have a lot more hope today than I did months ago. The cards we were dealt may not be what we had hoped for, but we can still play the game for awhile.
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Hello All, new to the community, but have been lurking for a while. Dx'd stage 4 in April 2018, 11 years after initial treatment and everything thrown at the cancer including surgery, chemo and 5 years tamoxifen. Devastated when recurrence with tumour on chest wall and Mets cells in pleura found. Same pathology, so was never really clear it seems. A few rogue cells is all it took.
Experiencing the highs and lows of this scary situation - As are you all! I'm in Scotland and well cared for by our NHS, although have private cover too which I used for last treatment. Might drop back into that later.
Still working full time in a full on job but getting great support ( which I expect after 30+ years service as a teacher and now at authority level). I see too many of you do not have that support. Appalling. Will retire soon though, I'm 54 and want to make the best of the time I have left however long that may be. My team says we keep going until we don't basically. No timescale or prognosis. Coping OK with the SE's but pretty tired!
Last scan in Dec (CT) showed NED after 6 months on Letrozole and Ibrance - only licenced here since Nov 2017. I'm incredibly grateful for all of your inspiring stories and hope.
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I so needed to see this today. I'm new here and this is my very first post. Thank you so much for sharing. Amy Joy
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Welcome Karen and Amy Joy,
It stinks to have mbc, but living with it is possible. This is not to diminish the suffering of so many, but to give hope as more treatments are coming down the pike and some of us far outlive outdated prognoses. Now, if we could only figure out why! My only real advice is to live as well as you can and don’t put your foot in the grave until you have to 😉
Some of you might know that I love fiber arts and knitting 🧶 . There is a big fiber arts conference in town and we have no school this week, so...went to an event this evening, previewed the market (yarn heaven!) and came home to finish my “homework” for a class tomorrow. I’ll take another class on Saturday and try not to spend toomuch on yarn and accessories.
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exbrnxgrl,
Knitting and crocheting is a great stress reliever! I take a project to all my appointments. I wish I had something nearby but the closest yarn shop is 1/2 hour away and not so convenient hours. I already have a ton of yarn but there’s always something new and a fiber arts festival or conference would be a blast! I’ve never taken a class but would love to! Congratulations on getting to dsomething so fulfilling!
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Fiber arts is a new one on me! Today I visited our 3 very good local charity shops and asked if they could let me know when they have old wool/ cashmere items donated with holes in them, which they can't sell on... they usually send straight to rag recycling. But I can upcycle them to have a new purpose and would pay more than they get for recycling. 2 out of the 3 said that was a great idea and took my details and 1 was a flat no.... nae vision in my view. Basically I'm looking for something productive to do when I stop work and would rather make things which can be used!
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Yes, wanderingneedle, knitting is a relaxing, yet productive way to pass the time. I had a weird knitting style, knit Continental, purled English style. It finally time to to go full Continenta, so I am going to really work on my Continental purling
Karen, yes fiber arts encompass knit, crochet, spinning, dyeing, weaving and almost anything to do with fiber (not just wool!). Good on you for upcycling . What have you made.
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I knit and purl Continental/European style, too. It goes much faster. You hold the yarn similar to crocheting, and you don't have to constantly look down at what you're doing, especially if it's a muffler or something easy.
L
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Lita,
I’m a fairly new knitter, having just learned 2 years ago at age 60, but I’vealways loved fiber arts (macrame, rug hooking, nålbinding ). I took a learn to knit class and was taught English style, but I watched some Continental knitters and knew I’d be more comfortable with that style. Between some arthritis and the effects of letrozole, i’m lucky to be able to knit at all, but I do think it keeps my hands/fingers limber.
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exbrnexgrl, just the basics so far! I’m building confidence.Even putting my old cashmere in the washing machine to ‘felt’ it was emotional ....most of it I’ve had for years and was just worn through. Hats and mits are good in Scotland with our weather!
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8 years ago, I was worried I wouldn't make it to see my daughters Bat Mitzvah. Not only did I make it, but today she was accepted to UCLA. #proudmama!
Beautiful Sunset
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ABeautifulSunset, Congratulations to you and your daughter. How exciting for her to look forward to UCLA. You deserve to be a proud mama! WOOHOO! May you continue to enjoy many more milestones
Hugs and prayers from, Lynne
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ABeautifulSunset, that is wonderful news, and you should be a proud mama! May you celebrate many, many more of these milestones!
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Beautiful sunset,
Mazel tov onall the simchas you’ve gotten to celebrate! Wishing you continuing happiness and nachas going forward.
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thank you all for your well wishes.
My goal now is to see her FINISH college. 4.5years..I hope to make it. And if I do, I'll just keep moving the goalpost.
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Beautiful Sunset - Congratulations to both of you! That is an amazing accomplishment! I wanted to live to see my boys graduate from high school, which I did.... so now I am shooting for college graduation too. The oldest is senior at CU in Boulder.... taking a tiny bit more time and hopefully graduating in December. I will be so happy and relieved - for me AND for him.
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Just to say those of you with young people in school/ college have a very strong motivation. More power to your elbow!
The rest of us find other things to keep us motivated. Mine is frankly not dying before I am bloody well ready!
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Karen,
I agree! I have been living with mbc for over 7 years but I am definitely not putting my foot in the grave yet.
My real name is pronounced just like yours but spelled Caryn.
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I am struggling with this at the moment especially as my husband died so recently,,.....I miss him and wonder what or how my life will be as I am on my own and no one from family has even phoned me to see how the first chemo went despite knowing what a big deal it was for me
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