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Safely Home From 7weeks in New Zealand

Bettybuckets profile image
33 Replies

I want to thank everyone for indulging me and allowing me to tell my story of getting back to Nz and travelling around with my old friends. I had the most magically time and everyday was a blast.

The last week was no exception. I see now that the slight dose reduction (I dropped to 2500 then 2000 Capecitabine every other day)allowed me to function very well with little or no feet redness or blistering.

Because of the dose reduction, we could go on short walks on the beach. And swimming in the sea felt marvelous. One of my fav things was that we rented a big gorgeous house with large open spaces inside and out and all was surrounded by tall lush green hibiscus bushes with pretty red flowers that created a complete privacy wall .

We could hear the waves crashing and were just one house away from the mile long white sand Onetsngi Beach . Until 18 months ago when we sold our house which was just up the hill , this was our beach, and our fav restaurant and cafe… all a short walk from where we were staying now.

I was in heaven soaking it all in. The weather was finally perfectly Summer with no fear of cyclones /storms which had been terrible and plagued us during feb.

One of my fav last days was when when my BFF’s Sarah and Ruth ( with hubby Greg) came over for a big healthy breakfast with Cindy Dan and rick and I. . We all chopped up fruit and put out nice muesli and had big crusty bread with peanut butter and jams.. and just talked about what our kids were up to and what we had been doing since we had last seen each other.

. We have been close friends Since the mid 90s when we worked together. Over the years when we didn’t always live in the same country,, we traveled back and forth to see each other for 50’s bdays, another time To keep in touch we had a ski holiday in whistler BC…most recently last October, Sarah came from nz to my house in usa for 3 whole weeks in the autumn to see me… and the fall colors. We even went to Washington DC since she had never been.

And once again these special women jumped through hoops ( meaning that it takes a lot of energy to gather on an island) and I really appreciated every moment we spent together still talking excitedly until the last moment when we walked them sadly to the bus to get to the ferry and had to say good bye.

And then it was the last day…. Like ever other time, Cindy and Dan had been the most wonderful travel mates. Cindy went for a final early swim with me and fittingly it was a bit rainy which made leaving the island easier. Cindy and Dan had decided to stay for 3 more weeks of summer fun…. but we had to go now since we had a time sensitive dog sitter at home AND most importantly being on a new med( Capecitabine) I needed to go home to scans and assessments. So we packed up and it was time for us to face the 18 hour flight to NYC.

But first… the ferry… and one last lunch at a fav cafe (Little Bird Vegan Cafe) in the city. Hard to choose which one when you have one last meal in a fabulous city with so many old favorites ..

And can you believe that they’re at the next table.. was the wife of Rick’s old boss from the 90’s?!!.. We greeted Anita happily at the coincidence of running into her hours from leaving.. but soon realized this was the most uncomfortable lunch ever! She told us off for not getting in touch with them.. she said they were very hurt and Continued to go up one side and down the other. It felt horrible being chastised for not having time to see everyone.. and the weeks of bad weather did mean many visits got canceled… but this friend we had simply not remembered to even try to see.

We apologized but it was the most awkward lunch ever as she was seated right next to us. Man that was tough! But we decided to make it right and so asked her for directions to their new house and left to go surprise Gene-Rick’s old boss with a short visit. OMG! So glad we did… he was delightful with no recriminations… of course we nearly missed our flight as Rick and Gene told old stories and caught up. It was such a delight.

The arduous journey back is always an “Ambien Blur “ meaning that I drug myself…as it takes over 24 hrs between waiting for flights and flying… but surprisingly not so bad when you have a valiant husband who moves seats so that I could mostly lie down flat across 3 seats and was very grateful to him.

Since returning home we found out that Rick’s dad just had a small stroke and immediately needed to come stay with us and then had an operation in boston… all is well now. Then at the same time, I went to visit my 89 Year old mum in her Apt and she tipped over backwards on me…although I tried unsuccessfully to catch her. BOOM! We both went down. After a few days we both appear fine.

Real life just highlights how magical those 7 weeks in paradise were. How lucky am I to have successfully made it over snd back with so many memories.

Thank you all for reading along. I loved all your comments and encouragement. I will once again pick out a few more pics and place in the comments below. Thanks so very much! ♥️

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Bettybuckets
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33 Replies
Bettybuckets profile image
Bettybuckets

One of my BFFs, Cindy and I have known each other since grad school she and hubby Dan were in our wedding… our girls are also BFFs- we both spent our careers in pharma and now she is one of my biggest supporters. In mid April we will attend a MBC retreat at John Hopkins together.

Morning of last swim
13plus profile image
13plus in reply toBettybuckets

Can you share the info about the retreat? I’m intrigued! I really loved reading all about your holiday journey , probably because I could relate so well to your idea of heaven :) And you’re a great writer too!

Bettybuckets profile image
Bettybuckets in reply to13plus

oh thank you and happy to share about the retreat… I am really nervous to go because I have a very up beat persona and have rarely shed a tear or very few about my sisuation… have tried hard to pushback down being scared and just decided to do that later when things were more dire… and even when I got the news that things had spread into my liver… I shook it off and just told myself- well Beth ( as that is what I call myself) how has this changed anything for you… we now know it was in your liver so I just accepted it and moved on rather than deciding that it was really terrible news I decided to look forward to how a new medication might make me feel better.. which Capecitabine has mostly done (except for the feet of course) but my bloating and fatigue are all better.

That being said, spread to the liver and all over into the retroperitoneal area is not good. So I googled MBC retreats while iwas in nz and probably while I was in CYCLONE LOCKDOWN which was what all the bad weather felt like…. I communicated with the lovely folks at John Hopkins and made out an application to the retreat. The thing that stood out to me was that they said that in order to go you needed to be well enough to travel to Maryland.. and bring a sister or caregiver… so I knew this might get intense regarding facilitated sharing of our feelings…especially since I didn’t live in that world of thinking much and definitely not talking much about such things. So I am going now while I am well enough to go but I am afraid.

Still, my best friend Cindy is invited to go with me for support. (Cindy and her hubby Dan came to nz with us) I would have loved to take my daughter31 years but I am not brave enough for her to see that side of things.

The amazing nurses and caregivers have provided a safe place to share all these feelings and are bringing together a small group of 14 MBC women and I am very grateful to go. April 14-16th near to Baltimore… I will go search for the emails and contact info etc and post next.

Cindy and I on our last night in nz
Bettybuckets profile image
Bettybuckets in reply toBettybuckets

this is what I found when I googled: kit

Retreats are now available specifically for patients like you who are dealing with stage IV (metastatic) breast cancer. Johns Hopkins University, where I work, has been offering these retreats for more than a decade.We hold 2 retreats every year—one for couples, in which the patients bring their spouse or partner; the other is for women who are not in a relationship, and they bring their female caregiver—usually this person is their sister, daughter, or mom.These retreats last 3 days and 2 nights, and they are free for anyone to attend. We don’t limit our retreats to only patients who are being treated at Johns Hopkins. Half of those who are attending a retreat travel from nearby locations, or even from across the country, to be there. The attendees just need to provide their transportation to get there and back.As a result of creating a program planning guide specifically designed to help our other breast cancer centers to replicate these programs, today other retreats that are offered by other centers are taking place across the country. Some are just 1-day programs, and others may last 2 days.In addition, some centers that are ready to do the full program replication have embarked on providing our 3-day programs.Why Attend?So what happens at these events? The content of each retreat can vary, depending on where it is held and who is conducting it, but one of the most important things about a retreat is the opportunity to spend time and network with others who are in the same situation as yourself.Spouses want to talk behind closed doors with other spouses. Patients, too, want to talk just with fellow warriors who are dealing with the same disease.How far along the cancer progression each patient is varies, of course, as do prognostic factors of the tumor itself, and the treatments that patients are receiving, but everyone has the same underlying issues and concerns.A Different ExperienceWhen such a retreat is done well, it is held at a place away from where you have received any of your treatments. It is a peaceful place, a quiet space. It has private rooms for sleeping, and no television, no radio, and no distractions. It also has focused time for respite.Many lessons get learned during the retreat, some actually from one another. At various points in time, you and other attendees will have some “aha” moments, which are wonderful.Portions of the program are also specifically designed to enable you and your loved one to escape breast cancer for at least a 2-hour stretch and literally not have it enter your head. (I won’t spoil the surprise of how that is accomplished, though.)Cutting-Edge InformationAt most of these retreats, a researcher or a medical oncologist attends for an hour or so to discuss what is happening in the form of cutting-edge research, what new clinical trials are opening that you may be a candidate for, and how to access them, as well as time to literally get your personal questions answered about your medical situation.There is dedicated time to discuss what worries you the most, what you are hoping for, what brings you the greatest joy, and how to gain some control over your life at a time when you feel everything is so uncertain.Get InspiredSo ask your breast center treatment team if they offer retreats of this type. If they don’t, but they want to, connect them with me at shockli@jhmi.edu, so I can help them to obtain a copy of the program planning guide I mentioned above.The feedback we have received from patients in the past decade has been heartfelt and profound. When I created these retreats more than a decade ago, I had no idea of the kind of real impact they would have on the lives of those who attend them.Our retreats are held at Bon Secours Spiritual Center, outside of Baltimore, and far away from any infusion centers or doctors‘ offices—the place offers 360 acres of serenity, and it is worth traveling for to have such an experience.

Hope this was helpful… here is one of the angels who helped me!

. Lillie D Shockney, RN., BS., MAS, HON- ONN-CG University Distinguished Service Professor of Breast CancerProfessor of Surgery , Johns Hopkins University School of Medicine Co-Developer, Work Stride- Managing Cancer at Work Johns Hopkins Healthcare Solutions JohnsHopkinsSolutions.comCo-Founder, Academy of Oncology Nurse & Patient Navigators (AONN+)Co-Founder, Association of Chronic & Complex Care Nurse Navigators (ACCCNN)vimeo.com/user36879102/brea... 

LDR1 profile image
LDR1 in reply toBettybuckets

this sounds amazing! Can you share the title of the retreat and/or the weblink to the info page? Thanks!

Bettybuckets profile image
Bettybuckets in reply toLDR1

happy to but what is the info page?

LDR1 profile image
LDR1 in reply toBettybuckets

I meant the web page where info about these retreats can be found - maybe it’s this one? conquer-magazine.com/issues...

Bettybuckets profile image
Bettybuckets in reply toLDR1

Yes that may be.. I just googled MBC retreat and dug in…I connected with the ladies running the Hopkins retreat and then I posted the email above and info above… but iv don’t think there was a specific brochure that I can across. Sorry!

I will be sure to write about this one and if I find a flyer.

Bettybuckets profile image
Bettybuckets

on one of our last nights on waiheke island… Cindy and I went to the farmers market and bought thrift store clothes to dress up for that night… we felt beautiful after wearing the same 3 outfits for weeks.

In front of the hibiscus hedge
13plus profile image
13plus in reply toBettybuckets

You all did well with your shopping!

Bettybuckets profile image
Bettybuckets

I am forever grateful for Rick who makes all things in my life better and I really don’t know how to thank enough for putting up with me.

My wonderful hubby Rick
Claireperth profile image
Claireperth

A great journey and a great storyteller! 😊

BluHydrangea profile image
BluHydrangea

So happy you shared your trip with us! Glad you are home safely!

Pbsoup profile image
Pbsoup

Glad you had such a wonderful time! It’s so good to be with old friends. Thanks too for keeping us up to date!

Cowgirl1951 profile image
Cowgirl1951

I am glad you had a wonderful visit. I enjoy reading your posts. I am sure you could write novels.

Bettybuckets profile image
Bettybuckets in reply toCowgirl1951

so kind of you to say! I am not very organized for long story telling… but I do wish I had written a diary as my daughter wants more fine details of my life and they are all gone from my memory now. But that is why I like to take a lot of pictures…

Sharon0122 profile image
Sharon0122

congratulations and glad you are able to travel and have great friends!

mariootsi profile image
mariootsi

So happy to hear about your adventures! Relieved you are home safely. Sorry to hear about your father in law and mom. Glad they are doing better.

LibraryGeek profile image
LibraryGeek

It all sounds fabulous- so glad you went. Like you, I am blessed with a wonderful, supportive husband who keeps me going. Bless you both x

Pachira profile image
Pachira

I’m so glad your trip turned out so well. It seems a long time ago that you were debating whether you could make it but your spirit shone through. Thank you for allowing us to live vicariously for those 7 weeks. Chris xx

hdhonda profile image
hdhonda

What a trip!!! It was wonderful to be able to go with you in our daydreams and hopefully one day in reality. It was a fun trip for all. Please keep sharing, it is so enjoyable for all. Blessings, Hannah

Bettybuckets profile image
Bettybuckets in reply tohdhonda

thanks Hannah I think I would like to keep writing to you all… very therapeutic for me

Totheriver profile image
Totheriver

So happy for you that you had such a great trip 💕

Bettybuckets profile image
Bettybuckets in reply toTotheriver

my BFF still there… having 3 more weeks in paradise and they. Send me daily pics and stories. I like it almost as much as being there.

SMPG profile image
SMPG

You look great. I hope your trip did its magic on you internally too. Keep up your good spirits!

jersey-jazz profile image
jersey-jazz

Dear Bb---Thank you so much for sharing your life so generously with the rest of us MBCers. We are so happy for you with your uplifting success story.

Now, back to the MBC business: What other drugs are you taking with the Capecitabine?

Bettybuckets profile image
Bettybuckets in reply tojersey-jazz

Hi JJ- sure! cape is third line for me…technically 2nd line.. Ibrance and faslodex first… my markers were ski high but with lobular they couldn’t find the spread hiding for a year… but onc switched me to Verzenio hoping to get more mileage from the CDK 4-6 class… Xmas 2022… they finally found spread in liver and all around… and saw back to other scans that it was actually there 1 year ago… so switched to capecitabine… still on xgeva 4x year… I take a calcium/ vit D chew when I remember. For Pain- celebrex 200mg/ daily and a few tylenol each day… but never more than 2 in morning 2 at night because of liver involvement. I take ambien to sleep( bad habit!) I think that is it.

I have been swimming laps in place of walking and ride my ebike when it is close to 60F+.

I have prescriptions for an opioids but avoiding fearful of constipation. I was last scanned in December.- it was finally an abdominal CT and showed the spread… so we decided not to rush to get a scan as I want to give cape a chance to work… and don’t want to have IV chemo if not working. So will prob not get a scan until June. My onc knows that I want to go see my son living in Switzerland in May if I still feel well. So I told him I didn’t want to have any bad news prior to going to Europe and the best way to ensure that is to wait on scans. But if I feel really unwell that may change. He promises me that there are IV chemo options that would be once a month or so snd I can not be bothered to much by getting into Boston for testament. I honestly don’t think about it. Hoping to get more used to cape side effects on my feet and just keep going. That’s me. I’m going to a MBC retreat in April and I think that will make me face mortality more than I have been.. I assume it will be really good info so I will prob share what I learn.

RLN-overcomer profile image
RLN-overcomer

Thank you for putting a smile on my face, the entire time I read your post. Yesssss I am still smiling, can you see me😀. I love being able to live vicariously through you ladies who are going on wonderful inspiring vacations.😇

Bettybuckets profile image
Bettybuckets in reply toRLN-overcomer

so kind of you.. I am so grateful to be feeling well on cape… yes feet are a bother … but I don’t feel N&V and I am not fatigued so it is good that I have this time snd don’t know when that will go sideways.. so look for me writing again in May when I take a quick trip to see my son Ian who moved to Switzerland with his wife.

Highlites-63 profile image
Highlites-63

what an amazing journey and what amazing friends you have! That story made me so happy. Thank you for sharing. Made my day.

Bettybuckets profile image
Bettybuckets in reply toHighlites-63

hi Highlites- my friends stayed on my island for 3 weeks more than us snd left yesterday. I so enjoyed their daily pics/ calls and video to show us where they hiked and went to dinner or out for coffee. It was almost as good as being there. We came back 3 weeks too soon worried about my health and scans but I have been fine… and boston has been freezing.

Highlites-63 profile image
Highlites-63 in reply toBettybuckets

it sounds like you’re living your best life. I’m happy for you. Kind of makes me want to go on a trip. I am planning one I want to go on the Camino de Santiago, just about eight days with my daughter and son-in-law that’s my goal. You have inspired me so much sometimes I worry about things that I can’t control. Thank you for your energy.

Bettybuckets profile image
Bettybuckets in reply toHighlites-63

I’m thankful for my energy too…. Won’t last forever. I have a friend right now on the El Camino. Please write to us all about what that is like when you go!

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