Life does not end with a stage IV diagnosis (really!)
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Hello, everyone. I'm new to this thread but unforunately not new to these boards or my DX. I am 3 1/2 years out now from my MBC dx in 2015. I applaud and admire all of you who have been battling this as well. It's definitely not easy but not a life sentence either.
I love to travel and take at least 3 international trips a year. I prefer solo travel because my hubby doesn't enjoy travel and I have just found that getting away for a week or so by myself is so lethargic! I recently started Halaven and for the first time since 2008 I have lost my hair. I'm dealing with it ok, better than I did 10 years ago. Funny what a difference time and age does to an attitude! I am wondering though, and have a question for those of you who may travel out of the country while "hair challenged"... I personally hate wearing wigs and usually wear ball caps or scarves at work or during leisure time. My thinking is that I'll do the same on my trip. Maybe I'll take my wig "just in case". I'm curious to know what the perception is like in Europe about this. Specifically, I'm flying into Germany and spending a week in Austria. Doing the whole Sound of Music tour and just taking it easy.
Thanks for reading! Lots of love
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Cheers to you, too, Karen, and more celebration in two weeks!
Lainey, I never had the opportunity to go out of the US when I lost my hair, so I don't know the perception, but I bet it will be just fine. Maybe take your wig as you say "just in case" and play it by ear, see how you feel, but you're prepared. For me it's always better to have something and not need than leave it behind and wish I'd brought it. I just wanted to chime to say your trip sounds fabulous and I hope you have a really fun time! Hugs.
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Lainey, I think you’ll find you can wear what you want in the countries you’ve mentioned. There are plenty of us out there! As Bliss says, pack your wig just in case....but that will really be about you feeling comfortable. As anywhere else, including Dallas I’m sure, people will stare and you may get the occasional comment.
Possibly different in Asia or the Middle East as the culture around women is different.....
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Bliss and Karen - thanks for the replies! I'm not sure if the wig is going or not. I have some really cute scarves and hats and I'll make a decision on the wig the day I leave. i attempted to put that "raccoon" back on my head this morning and just couldn't do it. This Texas heat makes it unbearable and it's only June! I have a bit of peach fuzz that is continuing to grow so who knows, maybe I'll have a bit more with the next 2 weeks! I am determined not to let my hair (head) determine what kind of trip I will have.
Btw, I absolutely LOVE Scotland. I have been several times and it's on my list to go back in 2020. It's the most beautiful country!
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Good for you Lainey. I still have my wig from round 1 BC - rarely wore it, for the same reasons. We called it Dougal (after a character from the British children’s programme the Magic Roundabout). So when we went anywhere the conversation usually included ‘ is Dougal coming?’ Also my neighbour and good friend thought I had a relative visiting when I wore it!
Recently saw another woman in a clinic wearing exactly the same wig....she didn’t look so great, so I think Dougal is now in retirement....just like I will be soon!
And yes we do do live in a beautiful country, thank you!
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Lainey and Karen,
When I was Dx'd with brain mets and had WBR, all my hair fell out, and most of it has NOT GROWN back in. I got three wigs, and only wore them for about a few months.
They just aren't my thing. I have some cute, wool cloche hats and wide-brimmed hats to help with the sun ((be sure to stay OUT of the sun when you're on Chemo)), and I found I had to wear a HAT on top of the wigs here in Calif. anyway.
So I said, "Who am I trying to kid? All my friends and former co-workers KNOW I have terminal, metastatic cancer, so what's the point?" I just wear a scarf, bandana or hat now and forget about it.
I don't care what people think anymore....sometimes, I don't even wear a hat/scarf. WE'RE HERE - WE'RE DYING, AND PEOPLE NEED TO KNOW THAT BECAUSE SOMEDAY IT'S GOING TO HAPPEN TO THEM. One out of eight women will get BC, and that's not counting ALL the other cancers out there: Colon, pancreatic, lymphoma, ovarian, lung, multiple myeloma, liver, etc.
I was considering taking a wig on my next vacation, just to have options, but I changed my mind. I've even stuck them in the closet because I don't need to be reminded anymore.
Everyone do what they feel comfortable with,
L
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Hi Ladies! I haven't read all the posts on here but skimming through I have to say it's so nice to see all you ladies vacationing and thriving despite a "diagnosis" and how the majority of people view this for us. I was diagnosed with METS last November and I went to hell and back. I'm sure many can relate! Once I got back, I decided that I'm going to LIVE, that I can't let it steal the days I am given now. I have just entered the phase of looking things up on the internet...I decided to stay away from that for a long time because I wasn't ready but that might be different for someone else. I came across things in the beginning that I couldn't un-read and I just couldn't do it anymore. I also couldn't bear to come here until the last couple of days...I'm so proud of all you warriors and I know this is a place of great advice and comfort but I just wasn't ready. Cancer and doctors were taking up so much of my time that I couldn't give cancer anymore of me. Obviously, I need all my sisters to get through this with and now that things have calmed down, I hope to be more active in getting to know you all and sharing our journeys.
Wishing you all a great weekend!
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Well done Lita....I go out far more in scarves than my very expensive wig. I don't regard myself as dying though .... sometimes I wonder if I will get to ,70 but now that I am off Taxol I feel a lot stronger mentally and emotionally....
Fighting girl welcome!
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Almost a year to the day that I lost my 16 year old Pomeranian, my sweet chihuahua mix had to be put to sleep this morning. Her illness was sudden and swift so I am in a bit of shock. Sleep well my funny little Mary Lu.
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exbrnxgrl-- I truly believe you will see Mary Lu again -- across the Rainbow Bridge. So sorry for your loss.
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Just came across this. 15 years (!!!!) with triple negative MBC
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So sorry... always worse when it's unexpected....xx
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Karen - so sorry to hear about your dog... losing our furry friends is absolutely heartbreaking.
Welcome to Fighting Girl! My favorite song is "Fight Song" …. I can't even remember who sings it.... but sometimes I listen to it over and over when I am running or walking and it gives me so much energy.
I haven't checked in in a long time. On the subject of wigs, has anyone worn a "halo"? That's why I had when I lost my hair; like a wig with no top... just long hair coming down out of elastic around your head, and I wore a hat on top of that. I hated losing my hair, but LOVED my halo....I was never hot, and it really was super cute.... hard to tell it wasn't really hair.
Lainey - your trip sounds fabulous. Good for you for going alone … it sounds like you have done it before but I think that takes a lot of courage - cancer or no cancer! You'll have to post some pictures here when you are back.
Hope everyone has a good week!
XO
Andi
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Thank you for your words of condolence. I keep looking for my sweet LuLu and then have to remember that she's gone.
Andi, Ihate to sound overly picky, but my name is Caryn. It is pronounced the same way as Karen, but when I see the more conventional spelling, I assume it is not in reference to me. Not a criticism just a correction 😊
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Just boxed up and stored my wigs. Tired of looking at them on the bureau/chest of drawers since I don'wear them at all anymore. A scarf or simple sun hat is much more comfortable in the warmer weather.
L
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exbrngrl: sorry and sad to hear of loss of your beloved pet. What a darling little dog. They steal our hearts then break them. I still miss my cats that have passed from this world long ago. I occasionaly see a "shadow" passing by and (sounds crazy) but I feel it is Leila who was 22 when she crossed the Rainbow Bridge. She was the Empress in the house and I think she is still making sure things are right!
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Fightingirl: I totally get the being frightened by reading stuff about MBC. I did read stuff and you are so right about not being able to unread. The Forum is a good place to go to give you hope and courage. Please don't think in "days you have left" -- rather think YEARS.
Wig wearers -- I have a very nice wig but I am saving for occassions where I want to have hair. With summer, even though it's been quite cool here lately, I am happy with scarves. In winter, I'll wear cloches.
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exbrngrl I am so sorry for your loss
the grief of losing a doggy can be quite strong, I found it quite difficult when it happened to me. My heart goes out to you 0 -
exbrngrl, I'm so sorry. It's just not fair they don't get to stay with us for much longer.
Andi67, YES! I love that song too...it's Rachel Platten and I love it when I'm out on a walk too. Another good one for your playlist is Anita Cochran - Fight Like a Girl. If you haven't heard it, look it up on YouTube.
Have a great night all!
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hi Caryn, I’m so sorry about your little Mary Lu. I just lost my sweet Pepper (Rat Terrier) 6/01...and I am truly devastated. I’m still crying
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Caryn, one of my dogs became ill when I came out of hospital in February. She was diagnosed with cancer and died in vet hospital as she did not do well after tumour removal....I feel guilty and haunted that I could not visit her......she was in there for two weeks.....and like your lulu, she and I had a special connection......hugs to you xx
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Caryn, so sorry to hear about the loss of your precious pup; it's so hard. It's been three years snce our precious dachshund took on a coyote and lost. I miss her and look for her still. Hugs to all of you who have lost loved pets. They truly are a part of the family.
Andi, interesting about the Halo. I had a wig mostly for work, but used scarves otherwise.
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Hello,
I am 52 years old and last July I found out that I have stage IV breast cancer. I am just completing a 6 course chemo treatment and it looks like I am heading into remission, praise the Lord. I took time off of my job to focus on my self and family. I am now deciding when to return to work or if I should. I have long term disability available to me for as long as medically needed. So I could just stay on disability. Financially I am able to do this but part of me feels like I am taking the easy road out and I would love to hear if other women have gone through this and give me their honest feedback. My husband is supportive of this decision. A little background of my career is that I work on a trading desk for a software provider so it is very fast paced and can be extremely stressful at times. Any thoughts or words of advise would be helpful.
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hi jjberky,
I think you and your family need to thoroughly explore the pluses and minuses of returning to work. I have just hit my 8 year mark, and have worked the entire time, save for 3 1/2 months after dx. But... I adore my job and view it as a calling, I am single so my income is very necessary however at age 63, almost, I am starting to think of retirement. Right now, I think I would be bored if I retired!
My point is that you simply need to evaluate the entire situation and do what’s best for you and your family. Take very good care of yourself.
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Jjberky I am just about to go off sick and then retire in 6 months or so. I am a health and wellbeing co-ordinator for a local authority education dept. ie a teacher who supports and teaches teachers and also does a whole whack of corporate stuff. I'm 54 and had always said I'd go at 55 when I began teaching.... that was PE for 30 years! I enjoy and am good at my job, I think, but this diagnosis and the mainly the drugs have knocked me over. However I am currently luckilyNED and have a lot more to give....just not on the treadmill (many more hours than contracted ) I've been on in the last few years. My time now! Finances are a thing and we will be tight but okay
Hope that helps....
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jjberky, I am also 52. I have been NED for almost 6 years - diagnosed 7 years ago and had 6 round of chemo and radiation - mets to bones and liver. I went back to work a few months after I was done with chemo and have worked ever since, except for a six month period when I stopped to care for my mother in law. I am a corporate recruiter for a large nationwide homebuilding company. I love my job, although it can also be very stressful. I think working helps me to focus on other things and to feel "normal"... and I like the fact that I am still contributing to our family income. I know I won't be able to do this forever (for one reason or another)… but I am hoping to keep it up until I am at least 55. My husband is completely supportive of whatever I choose to do, although I do like to spend money (!) so I think he appreciates the fact that I am still working. Of course, if things went south, he would be totally supportive of be quitting, too. Do what feels right, right now... knowing you can always make changes along the way.
I hope that was helpful!
XO
Andi
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Went to an Astros vs. Rockies ballgame last night, and unfortunately, the game didn't turn out like I wanted, but the fireworks after were fabulous! Happy 4th to all those who will celebrate!
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4th...??? EhhhWhat’s that?....
Joking Bliss, sounds like a good day!
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Well, I hope everyone who celebrates had a great July 4th. I had a great one planned, but but got quite sick and couldn’t even keep down liquids for over 48 hours. I was told to go to the ER, where I spent most of the day being rehydrated, given sodium since I was quite low. Had a pelvic/abdominal CT, bloodwork etc., which all turned out to be normal, hooray! By the time I was discharged, I felt much better, albeit weak and tired. Resting now and managing to keep down small bits of jello and sips of ginger ale. I also showered as soon as I got home which felt fabulous! Most importantly, I’d like to say how incredible my daughters are. One took a quick detour on her way to work to take me to the ER and stayed until her sister arrived. Younger dd stayed with me until discharge and made sure I had plenty of bland food on hand. I love my girls💕💕.
Resting in bed now and hope to be back to normal soon. BTW, they had a nurse who could access my port, so everything was easy, peasy.
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Feel better soon exbrnxgrl, we need your energy.... I find it a bitreassuring to know you’re not invincible and can crash like the rest of us from time to time and then bounce back.... I mean that in the best possible way! Your daughters are are clearly a credit to you!
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