Life does not end with a stage IV diagnosis (really!)
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SeeQ - thank you! I feel like it might be crazy to have MBC and plan a trip like this (so many unknowns, right?) but ....I really want to attend these games and this trip. We will see - can always sell the tickets if I am not doing well or on a treatment that won't allow me to travel that far.....someone posted on one of these threads..."no one knows how my story will end" or "don't write my ending, yet" ....which is true!
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April,
No, it is not crazy to be making travel plans! I have been living with mbc for almost ten years. What a dull existence I would have had if I hadn’t made plans. So plan away my friend and enjoy life today as sell.
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Aprilgirl and exbronxgirl, I agree. The alternative is to mull around, missing out on spectacular (or even just really fun) opportunities, because you might be sick then.
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aprilgirl: I so agree with the above. Plan it!! Even people without MBC can get plans derailed. Hey - it's a reason to keep on truckin'. Last summer I was planning to go to Scotland/England (Glastonbury in particular) for my 70th birthday. The B&B where I stayed with my DH in 1990 was still in operation, almost under the foot of the Tor. I was going to go alone as a sort of "period of self-reflection" Yeah - well that went sideways with the pandemic. The Tor and the Well will always be there and I can always self-reflect........later.......
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Aprilgirl - Yes! Make the plans! I think planning gives our minds the expectation that we are going to stay healthy, and I think the power of our mind is underappreciated. I love France, and can't wait for the pandemic to diminish so we can try to travel there again. My DH and I both have our full round of covid shots, so we are ready!
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Thanks for sharing everyone, yes, I, too, must continue to plan things!
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Yes! Make plans whenever you can.,
Last year for my grandsons 4th birthday we could only do a drive by car parade. He will be turning 5 on Sunday and we are having a family party with both sides present. It will only be 12 adults, all vaccinated and my grandchildren but it’s our first normal social gathering in over a year
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Thanks for this. Needed to hear this today❤
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My latest camping trip involved a scooter.
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SandiBeach - this looks great, bet you had lots of fun!
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Sandi,
You look wonderful! The smile on your face says it all
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Sandi, you must be very limber to ride that thing; I’m pretty sure I’d wipe out if I got on one of those! You look great!
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DivineMrsM, I actually fell the first time. Got a little cocky, went too fast, couldn't stop, jumped off and fell hard on nonasphalt surface..grass. No helmet. So stupid as the bruises hurt.
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Glad it was a minor accident! My 9 year old granddaughter tried to teach me how to ride a scooter 🛴 but I have always been and still am, a klutz. I did give it my best
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Sandi: you look terrific. I fondly remember roller skates - the kind you needed a key to adjust. I fell a lot then and the key on a string around my neck inevitably hit my mouth. I am surprised I never chipped a tooth. Now - I don't think I would do anything that would likely involve a spill, not even with knee and elbow pads and a helmet. I also don't want to bruise my dignity. Ha ha. You are to be commended. I am so glad to see your face. I don't think you have posted pictures before.
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Ha. I have posted my photo before, got nervous about recognition and deleted it.
I guess I don"t care anymore!
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On Friday evening my older dd, granddaughter and I went for mani/pedis. It was good to patronize our favorite nail salon and happy to see that their business seemed to be doing well after what must have been a difficult year for them. As the nail tech was cutting my finger nails she said, “ You have very strong nails. This means you have good health!”. I nodded but smiled to myself as the irony of saying this to someone with mbc didn’t escape me.
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HI y'all,
I was recently diagnosed with bone mets. I'm not in any pain, though the meds make me very brain tired. If I try to use my brain, read something and try to remember what I read and "work at it", I get even more tired. Or, try to remember what happened in a previous episode in a tv show.
What do y'all do for work? I imagine some of you went back to work after diagnosis. I'm trying to figure out what to do with myself. It would be good if I can do some work, so I can help my family save up some money. I don't feel great when I'm not doing "something".
Thanks
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Hi NewDay,
Well, I am retiring in about a month but except for 3 1/2 month leave I I have taught first grade for almost since my stage IV dx. I am probably the exception as many are simply not able to work. After some summer travel I’m planning on getting a dog. Six months after retirement, I can start subbing and I will. That’s how I figured I’d keep busy. Take care.
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What do you currently do for work, and are there options in your field you could move into that require less working memory and are maybe more functional? How long have you been on your current drug combo? Sometimes it can take a while for everything to settle down, both from the drugs and the impact of diagnosis, so don't beat yourself up too badly as it could iron itself out in time.
I am still working the same job I had when diagnosed (desk based, a lot of thinking and getting people to agree to a plan and then putting that plan in place) and I remember having some brain fog too at the start. I take a lot of notes and stay organized and if something slips through the cracks I don't worry about it because I usually have to spend half of a meeting reminding people what we just talked about at the prior meeting. Everyone is so bombarded these days with information and technology and trying to multitask that NO ONE has a long term memory anymore it seems
If in a few months you still don't think you can/want to do your current job then you may want to consider working with a therapist who can help you identify where your current strengths are, and what sorts of jobs would play into those capabilities and are available in your area. Off the top of my head I would think a job that is process or policy driven,and operated to a specific set of outlined procedures that are written down, could work well. Have you spoken with your care team about your concerns?
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HAPPY MOTHERS DAY 💐💐💐 I hope all moms had a great day and that we all had a chance to honor our own mothers as well.
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Firstky, Happy Mothers Day. I’m new to this whole Stage IV - I’m still working right now but realize that may change. My work is pretty flexible - I’m Head of Marketing at a health care company - working from home adds more flexibility than before but I don’t know as I get more into this new diagnosis - how this may change.
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How do you know if you are making the most of every day, when I was diagnosed the first time 7 years ago, when treatment was over I went back to work part-time one of the good things that happened because of cancer was going from full to part time work but other than that life went on as normal I did not have any amazing revelations about life or anything like that. Now that I have MBC I think I should do more or do something but what? I am still working part-time and once I got over the shock it just feels like life as normal.
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sunní days,
It’s simple. Do what makes you happy! If working makes you happy, then continue. No need to create a bucket list just because you think you should at stage IV. I am about to retire but I have worked full time with MBC for almost 10 years. Of course I did things I wanted to do on my vacations but since I felt “normal” I just carried on that way. It’s a very personal decision and it’s important to not look at what others have chosen but to look within yourself and choose what you want. Take care
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sunnidays: a very insensitive person on hearing about my DX said "So what is on your bucket list?" To which I replied, "Staying alive"
I was already retired so I didn't have to make decisions about working or not working. I was never one to have a "20 Movies To See Before You Die" "10 Places To Go Before You Die" list. Why make one now? If there was no pandemic would I be hopping on planes and going places? Yeah. Maybe. Maybe not. Don't be thinking you need to do something, or being having revelations. Live your life the way you have wanted to live your life, perhaps with some caveats. Be kind to yourself is all I can say.
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Sunnidays and Firstky, I am sorry you have been dx at stage IV. I think all of us are blindsighted by a stage IV dx, and what it will do to our lives as we know it. I received great advice in 11/2019 by a lot of stage IV women who encouraged me to take a deep breath and see how treatment went before making huge changes. I am self employed but make a great living and love my job. I started treatment (Ibrance and faslodex) and to be honest, felt pretty good and continue to feel pretty good. I do have some fatigue and some joint pain if I garden too much but overall, have continued to live my life the way it was prior to stage IV. I do have a bucket list of places and things I would like to do in the near future. Covid delayed a lot of those plans! Spending time with my family is the top of my priority. I have booked a fabulous trip to France in 2023. Back when I was dx stage IV I would have been afraid to make plans 2 years in advance. If I change treatment and feel lousy, I will revisit my work and retirement. It does feel like I live a bit scan to scan, which in my case is still quarterly. Like Elderberry said, be kind to yourself!
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sunnidays, I have quite different thoughts from most on this thread.
My MBC is aggressive & fast & while i hope to be an outlier, odds are not in my favour. It's left me adrift. I have to find new ways to live & I struggle with making plans even 6 months in advance. I too wonder if I'm making enough of each day but some days I'm too sick to do much at all & that's just the reality. Yeah, my life didn't end at dx, but almost everything *about* my life did end at dx. I literally quit school the day I got diagnosed, and the next day instead of walking to the ward where I was supposed to be doing a clinical rotation, I walked into radiology for additional scans. MBC ended so many things for me and I'm still so furious & despondent.
My advice, 14 months into this stupid mbc life, is to think about what's important, consider things might end very quickly & suddenly, & prioritize, prioritize, prioritize.
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Agree with Moth.
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Sunnidays: I mostly completed my Advanced Planning Guide. I even printed out the Medical Assistance in Dying form for when the time comes. I wrote down that I don't want a "Celebration of Life" where people I haven't seen or had contact with in years show up. No clergy!! I'd like my sisters (both by blood and by long friendships) show up and have a martini in remembrance. I have a list of hospices that are quite lovely. I wrote down the contact number of a place that puts cremated remains in a mulberry paper casket so it is bio-degradable. I thought it might be nice for aforementioned sisters to go out in a boat to the spot where it is legal to it and toss the paper casket overboard into the Pacific. I wrote down boat charters who actually specialize in water burials. So with a Will and Final Wishes in a folder I just move on. I started a "21 Dolls Project" before my DX, and I'd like to have that finished. Like all us MBCers, I live from scan to scan, treatments every three weeks. I want to be alive when the pandemic ends and I can visit people, and have people visit me.
You haven't listed whether you are HER2+, HER2-, TNBC etc. That and treatments etc. should help in what you feel you should be doing. What is the treatment plan?
Intellectually we all know we are going to die, cancer or no cancer. Most of us just don't know what will carry us off. The older we get the louder the flapping of Time's Winged Chariot. This might sound weird but at my age it is oddly okay to know what will likely kill me. I just don't want it painful or ugly. I know I don't want to be in "God's Waiting Room" slumped over in wheelchair, no idea of who or where I am, in some long term care hell hole, so maybe going earlier than expected is okay, too.
Like moth stated "Decide what is important" --- go from there.
Hugs
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Sunnidays, You asked, "How do you know if you are making the most of every day.... Now that I have MBC I think I should do more or do something but what? I am still working part-time and once I got over the shock it just feels like life as normal."
I ask myself this, too. Mostly it is about whether DH and I are making the most of the time we have left together. I have a partial answer, and it is not so much about what to do but about mindset. My life looks a lot like a normal life but with less work and more medical appointments. But, I believe more than the average person who is not facing mortality square in the face, I am mindful of the little things that make a big difference. I look for all the little moments of happiness I can find in the day. I start my day outside and I notice what flower has just bloomed, what amusing thing the birds are doing, and how lovely my scented plants smell. With the people I interact with on a cancer center day, I have a friendly chat if there is time. I let little annoyances go in favor of a harmonious relationship with my DH. I get my favorite tea and fresh fruit often. In other words, I look for the good in each moment or day. I feel this has made me fairly happy in spite of the deep sadness of knowing I will probably leave way too soon.
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