Life does not end with a stage IV diagnosis (really!)
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Life does not end after a stage iv diagnosis. One might even phrase this as "living does not end with a stage iv diagnosis".
Yes, it's really a matter of semantics. Many of us, me included, are fortunate to have memorable times of travel and new experiences after being diagnosed. But that's not the whole of it. Life is complicated and we still have to deal with that part, too. I'm proud to say I've experienced a lot of personal growth in the last 9+ years:
My relationship with my husband, which I thought was good, changed to where I insisted more things go my way. Less self sacrifice on my part. It's been worth it to grapple with our issues and find better balance instead of pushing things under the rug.
Our finances were always good, but I spent time making them better, tied up some loose ends, found a good financial advisor. This is one thing I'm most proud of.
Over a period of several years, I left my Christian faith because I asked more from it and didn't get it. One surprising piece of the puzzle: while reading several true account stories of women who left the religious cult of the FDLS, my eyes were open to the male domination of Christianity and once seen, I could not unsee it.
I simplified my life in all areas, stopped doing more things I didn't want to do, decluttered my house, said no to what I felt obligated to do. I learned to spend less time with relatives I really didn't like. I will no longer be hosting my extended family for Thanksgiving and Christmas Eve and Phhew! Thank goodness! I learned to live more in the present, recognize my feelings of boredom and what stirs up my feelings of sadness and I still work on feeling less guilty about my life being about what I want and not scheduling it around everyone else.
It's not all been a straight line. I fall back in to old habits, so from time to time, I casually reassess how things are going and make adjustments. I'm more content with ordinary days and relaxing, simple activities but still like the occasional fun new experience. Over the holidays, my granddaughter strapped her Virtual Reality headset on to my head and oh my goodness!I was transported and enamored!
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DivineMsM
Great Ideas for the newly Diagnosed! I am finding myself already after just a couple months thinking of ways to simplify! We have a large home that is only used when my grown kids come home to visit and we are considering downsizing. The stress of taking care of the house and yard etc is a financial burden we really dont need right now. I am finding myself just saying no to things I would have done in the past out of duty or guilt. If I want to do it OK, if I don’t then I am trying to refuse. Example I always have a large christmas party and go way overboard on entertaining and cooking and stress out about it for weeks ahead, this year my family and I just went to a lovely restaurant and had a great dinner, no stress, no mess. I still have so much I want to see and do so it is great to hear of all the trips and vacations from the other Met sisters.
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Thank you for saying that travel is not the whole of it, Divine. The financial toxicity of cancer and DH's health problem make big vacations impossible for us, which is sad and feels unfair. However, I keep trying to not just survive but to live. Some examples of simple things but things that matter to me: I have made progress on creating a flower garden. I just made one more corner of my new (downsized) house beautiful and functional. I put on my chic wig and went to a dinner party and enjoyed talking with childhood neighbors. DH and I discovered a cool new walking trail with hidden beauties.
P.S. I had a chuckle at Philly's compliment on Anotherone's marvelous photo. As I recall, in the UK the garment she refers to is called “trousers". “Pants" means underwear.
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Divine,
Yes! When I started this thread I did mean for even the less “happy” aspects of life to be included because those things are very much a part of the “normal” life. No, I am not happy about deaths of friends, family, pets etc., or any of life’s other travails but that’s just life and I’m thrilled to be here to experience it
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Yes, this year was different for me too. I was dx’d with recurrence Now on ibrance/letrozole. While easier than IV chemo, it still has it’s downfalls. I knew for a year that DD wouldn’t be here for thanksgiving. Was in the Macy’s parade. Without her help, I wasn’t doing the dinner thing. So I went to crackerbarrel with gf, DH went elsewhere with his friends. Was great!! Missed DD, nothing else.
Christmas. Hmmmm. I don’t have enough energy to fool with my 4’ fake tree. DD said she’d help. She’s a teacher. 2 kids. When? With what spare time? Got a 5’ pop up tree. Was I happy with it? No. Did the dinner thing, took 2 days to recover. Next year, hello Publix.
So yes, some changes happened. And will continue to happen. I’m learning how to say no, I want, better.
Not pushing up daisies yet either life is good!
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HAHAHA Shetland! WHOOPSIE! That is hilarious! I am cracking up!
And yes - I did not mean to sound like life is all roses and daisies, if I did on my post. I think that I did appreciate having a moment to appreciate the accomplishments that I have made, even with a stage 4 MBC diagnosis. I sure thought I would be a goner months after my initial shock of being diagnosed de novo back in March 2017. I am actually amazed that I am about to come up upon the 3 year cancerversary on my 43 birthday this coming March. I am thrilled to have done so much in these past almost 3 years. I totally imagined that I would be sick as a dog lying in bed with bedpans and puke buckets high on morphine and taking my last breathes. Very grateful that I have had the time (and energy) to do as much as I have.
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You know, Philly, you make a good point. You are almost at a 3 year mark. I have to say I spent the earlier years after my diagnosis doing more energetic things and nudging myself out of my comfort zone to try new things, stretch my dollars a bit more without breaking the bank, get to some places I'd never been.
And tho I did learn to say no a bit more and began simplifying soon after learning I had mbc, it probably wasn't until maybe year 4 or 5 that I started really challenging some of my personal beliefs, gaining more courage to step out of a different kind of comfort zone, perhaps that of “other people's expectations of me", bending some rules and being more truly me. I still feel I have a ways to go, but it's a start.
So I think many factors go in to each individual's approach to living with mbc. Age at time of diagnosis, treatments and side effects, family, work, finances, and even the length of years we find ourselves in this place. And I hear ya about the, “who knew I’d even be around this long” thinking. We had no way to know.
You have every right to be proud of all you've done since your diagnosis, and although I'm terribly sad you are so young to be dealing with this, as a woman in my early sixties, it's nice being around your younger energy.
Shetland, I love how you've found ways to enhance your life, with a flower garden, creating an interior space you love, fixing yourself up and chatting with friends, discovering a new trail. They are all lovely activities and very meaningful.
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I am not one for false positivity or forced positivity and certainly, I do not consider people suffering from the all-too-real effects of this disease and its treatment to be 'negative'. But it IS nice to have a place to share or celebrate the happy moments and the "normal" times. This thread and other posts from all the strong beautiful women on this forum definitely kept my spirits up in the beginning and gave me enough hope not to doom myself before my time. I clung to (and still cling to) one of the lines in Caryn's original post above "Don't let the disease steal your life one moment sooner than it has to." I am also never afraid to say, truthfully, that this diagnosis sucks, the treatment choices put us between a rock and hard place, etc etc.
Now with that out of the way - here is something else I am celebrating today! I had my onc appt and infusion today and my blood pressure in the doctor's office was 117 over 77 - I haven't had a reading like that in the doctor's office since I was maybe 29 or 30! Medicated or not!
So hurray for my new cardiologist and his choice of meds for me. And hooray for me for losing another three pounds and for choosing this cardiologist!
Insert confetti throwing emoticon here. :-D
PS - I absolutely love seeing the photos posted here! Anotherone, that would make an adorable greeting card. Maybe someday I will break out of my privacy cocoon and share a photo or two. Not today, though. ; )
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olma,
This disease does indeed suck, and I don’t use that word lightly! But it was, and still is, amazing to me how life goes on. We have to approach it differently than pre-bc but I encourage all to look at what is still possible and keep that foot out of the grade as long as you can
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thank you for compliments , ladies. Nice to get them:)
Yes olma , one day you will feel like it:) I have deleted my photo - my privacy relaxation lasted for about 12 hours but that is how it was planned.
Absolutely , travel is just one particular narrow part of life. Break ups , arguments , reconciliations , talks , dishes ooked , books read , pets cuddled , sex had , finances arranged , courses done , jobs changed, conflicts resolved, board games played, food eaten, gardens weeded, ideas had -it all is.
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If you look at my posts in this thread, I post about somewhere I've traveled to most often. I'm single with no kids and embraced my "living" list with a passion. Now that list included lots of travel but also some things like making sure I've spent time with friends that are away, etc. My situation was so weird when diagnosed (being told after BMX that I was stage 1 with no lymph node involvement but highly chemo recommended to finding out through a pre-chemo Pet that I had liver tumors throughout every lobe with one being the size of a lime). I really didn't think I'd make it to the 18 month mark let alone be here with just a vague, very small undefined area of cancer in the liver that is barely lighting up more than the rest of the organ 7 1/2 years out.
It hasn't always been easy, and I've been going through treatments faster in the last 3-4 years. I'm incredibly grateful for a team that understands my needs. One of which is that I really need to work to supply my insurance. I'm a music teacher, and when diagnosed I was adjuncting teaching online classes for a couple of colleges and teaching 1 or 2 classes on-campus at another college. 5 years ago, I became full-time at the on campus college, and I am still teaching online for 3 other colleges in the area. In the fall, I will get to turn in my portfolio to potentially qualify for tenure. Something, I never would have expected years ago. The online teaching is a true blessing to me, and though I work the equivalent of what would be 2-3 full-time jobs class wise, I can do it from anywhere and for as long as my fingers and brain can handle it. I absolutely love what I do every day. I was even able to perform a full recital on clarinet this fall - which was perfect timing right as I started gemzar as I don't know that I could do it now.
I've gone so much longer than I originally expected that I joke that I need to restart my seeing friends all over list again. As I type this, I'm enjoying the 7th year of a girls weekend with some of my closest friends from college which has been so nice each year. I have done some things like making arrangements so that my family won't be burdened with that. I've fixed things in my house so that if I ever had to make other arrangements or family had to sell/ rent, they would be able to do so without having to fix it up. I'm happy that I've been able to do some of those things to make things easier for others eventually. I also keep a blog that lets family/friends know what is going on and hopefully provides some education about mbc as a whole.
So, I may post mostly travel, but know that like all of us there are the ups, downs, learning curves, and regular living going on. It is never easy or all one thing.
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These posts are very uplifting. It is so nice to see people doing what they love. I had a very stressful job and my dream prior to mbc was to retire and travel. I decided to retire early and start on that dream. We have been on several trips and planning a month long trip along highway 1 along the west coast for this summer. One thing mbc has taught me is to live life to the fullest and do what makes me happy. I am no longer taking care of others but taking care of myself.
I post on several of the other threads and I have so much respect for everyone. It's not easy going through treatments and some women have a lot of pain. These boards are great for talking with others who understand.
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Travel is something I feel that I have not done enough of and want to do more of while I still can. Being more spontaneous and adventurous and being more “present” for the people I love...also goals.
Love to all xo
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I love this thread and find it very uplifting! Still finding my balance in this new reality. Still feel pretty good so that is surreal (to know that I have a chronic and often terminal condition, yet really feel pretty good?). Like Divine Mrs M said, I have found myself being more vocal about what I want and have nicely told my husband and kids that pretty much, 2020 vacation plans and family activities will be more about what I want. I have put my personal needs on the back burner for some time, not because my family is difficult but because, like all families the kids activites and schedules seem to take over and have more immediate deadlines. 2020 is the year of me. Looking forward to planning some trips, no more waiting for a better time.
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Way to go April girl....I too have thoughts and plans for when I am feeling ok enough to go on holiday.
BUT one big issue for me is travel insurance. I live in Spain even though I am British.....and British companies won't insure me...... and it's too risky to travel without it...
Can anyone recommend any travel insurance companies please?
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Hi lily,
This site may be of help:
I have been able to obtain travel insurance many times since my dx. Hope this helps.
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Lily55 and exbrnxgrl - really good idea! I hadn't thought about trip insurance (DUH!). Hawaii trip is so close and I feel ok but I am planning a trip to Europe in late August/Sept and it would be prudent for me to get insurance. Thanks!
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Happy 2020, I am happy I have found this treat. I just came back from skiing vacation in Austria. I am good skiier but this year I have tryed alpine ski walking up hill and then ski (I dont know the correct name in english, you dont use ski lift...it is a real walk 😀...while on kisqali 😀). For my back I bought some protection, I have met in T10 hopefuly gone by now, have petct this upcoming friday. I traveled so much since first dg as well as recurrence and we are building a farm.
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Maaaki - wow ! I'm so impressed with your skiing and the walking up hill, skiing down. What a gorgous place to ski. Wonderful to hear that you have been traveling a lot and building a farm since dx.
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Lily, did you try Insurancewith.com?
I’ve used them a few times and can’t see why you being in Spain should be an issue
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Anotherone, I was perusing recent postings and didn't find the photo everyone was talking about, so I was very confused. Thanks for the deletion explanation.
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sorry for that
Shall send it to you by PM.
Xx
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Thank you for the information.
Insurewith won't cover Spanish residents...sadly
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Ocht Lily that is just pants! There MUST be a way for you to be insured! Did you query Insurancewith? It can be a case it being a bit of a pain in the backside to get an actual response, but you probably already know that!
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Hi yes thank you I did query them......
Brexit is also creating problems for British residents here.....
X
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Lily -That’s a Nightmare! Common sense should prevail eventually, but that’s no good to you. As for Brexit, Scotland did not vote for it, nor did I or my husband, and the Scottish government have just rejected the legislation proposed by Westminster, for all the good it did. We are are too small a country it seems.I am not an SNP voter ( they have the majority in the devolved parliament) but I do very much object to our entire nation being ignored!
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Well here is a decidedly non-positive post. Almost two weeks ago, I totaled my car. It was a very low speed crash, too slow for airbags to deploy. I was banged up and bruised, both of my knees are turning hideous shades of green and yellow but nothing serious. While still in the midst of sorting this all out (saying goodbye to my 13 year old work horse was hard), I slammed my classroom door on the middle finger of my left hand. The pain was so intense that I became dizzy and nauseous but held it together as my class had just come in from recess. Since our 4th grade buddies were due any moment, I held on long enough for them to arrive and I demonstrated the project they’d be working on with my first graders. I told my colleague, their teacher, what had happened so she kept watch over both classes as I fled to the health office. It is incredibly bruised from fingertip to first knuckle. The bruises are black and almost look like soot. The nail bed is almost all black and the nail feels like it may be lifting. I don’t think bc will get me. I’ll just fall apart piece by piece 😂
* It is somewhat amusing to show people my injured finger. It looks like I’m flipping them off 😉
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oh Exbrnxgirl, that sounds awful! Bruised and banged up then more bruised and banged up. I hope some healing is going on. And I know the things you must sometimes do to stay strong when a lot of young eyes are looking at you! (I’m a retired teacher.). I bet a lot of your coworkers are asking to see your bruised finger, lol
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Ouch!!!! Feel and look better soon😍😍
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Thanks all 😊 The smashed finger feels very tender. Nothing from the car accident hurts anymore but the bruises are all sorts of ugly colors. The bruise left by the seat belt is a putrid shade of yellow.
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