I arrived in Switzerland yesterday to see my son and wife. I can’t believe we made it! I am on cape since Xmas and the HFS is getting rough. I am on 5 pills day- 7 days on 7 off. But I made it here under my own steam- no wheelchair this time because I was on last day of the drug holiday. I’ve already eaten my weight in cheese fondue snd then chocolate for desert! But I am just so please to be here.. we took the smallest amount of carry on so that we can jump on and off trains.. it felt like the movie Planes Trains and automobiles because we took a bus to the airport in boston from our house… took the plane into Zurich and jumped onto a train for one hour over to Bern where our son picked us up… it seemed so quick compared to going to New Zealand! But I felt very nervous to set off since this cape is kicking my butt with HFS… without being able to walk much, I have kept fit for this trip by swimming laps and using my ebike… but still this is a lot for a 63 year old MBC with all that I have going on. But I thought to myself, “Self- (cuz that is what I call my self when we are alone)- it’s not going to get easier, so I best go see this new land that my son has moved to now while I still can!”
Then he and his lovely Chinese /Japanese wife Rina made us yummy new tiny potatoes dipped in fondue served with gerkin pickles…
Rick and I usually blob out and watch Tv at home together BUT when in Switzerland we discussed the book Ian is writing and then read poetry to each other… you know when in Rome as the day… so as the Roman’s do! So I read this poem from Mary Oliver one of my fav… and got choked up as it is about living your life to the fullest and is so beautiful. I will post below if you would like to read it.
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This grasshopper, I mean- the one who has flung herself out of the grass,
the one who is eating sugar out of my hand, who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is. I do know how to pay attention, how to fall down into the grass, how to kneel down in the grass, how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon? Tell me, what is it you plan to do
What an uplifting post! So happy you are enjoying the visit to Switzerland. And I loved the Mary Oliver poem—I am also a big fan of her lovely words! 💗💗🙏🏻🙏🏻
yay yay yay. I am so glad that you did this. I am a firm believer in mind over matter in this wretched MBC fight. I hope that while those of us who are still relatively healthy, can, we should live life to the fullest.
At the end of the day, women in our situation are living longer and longer, so will probably have more time to go out and just live
The last thing in the world I want is when my health really is declining to look back and think “UGG I should’ve done this or I should’ve done that.” (Not that I’ve finished my novel or even cleaned out my fridge…but hey)
I’m so pleased you got to see your son! And that you’re doing fairly well on Cape. It’s a good drug. After 18months I am moving on to Orserdu. And while I hate moving treatments, getting my hands and feet back is something I’m looking for a forward to. I hope yours don’t bother you too much while you’re away.
Quick hint: I found pure Shea butter is my new best friend. Its kinda thick, but I slather it on, and it seems to help more than any thing else. You can buy it at target very cheaply.
I’m off to Japan tomorrow! Tagging along on my husband’s business trip. We are bringing our daughter who just graduated from USC. To celebrate.
I lived in Japan after high school and used to work in Japanese television so it’s very special to be able to show it to her (although my Japanese is very rusty now)
Please post photos of beautiful Switzerland and have a lovely lovely time
Well wishing you a fabulous time away too! And congrats for your daughters graduation! Isn’t it exciting? My son is graduating from GW this weekend too
How fantastic! Isn't Bern beautiful? And doesn't HFS suck? I was almost relieved when cape stopped working for me and my hands and feet gradually returned to normal. Mm cheese and potatoes- such a Swiss meal! Have the best time x
So happy you made it. We lived in Europe for a long time and I’d love to go back, but I don’t think it’s going to happen. The littlest bit of turbulence any more sends me right over the edge. My anxiety was bad enough, but now with virtually no estrogen left, it’s even worse. We’ve enjoyed some wonderful cruises though and I am very content with those. Enjoy every minute!!!
How wonderful you are in Switzerland and enjoying everything. What a wonderful inspiration you are to all of us.
I’m waiting for a week now for a release from my oncologist to have a kyphoplasty done on my back. The pain Dr won’t do it unless I get a release for my eliquis. Someone is dropping the ball on that and I don’t know who. I wasn’t supposed to do anything about contacting drs, but know one is telling me anything, and I am very frustrated. I’ve called three days now and am getting know where. The pain Dr is on vacation this week, his office hadn’t helped, nor has my oncologist office. I missed the wedding in London last weekend, it looked like a beautiful wedding. The pictures attached are the family we lived next door and two of the bride and groom . The picture they are holding I stitched, and they loved it. I also sent money for their honeymoon.
Enjoy your time there as I know you will!
Well sorry it will only let me send one pix! They are moving to Dubai in August as he’s going to teach history at an international school. What a great opportunity for them!
oh Sharon I am so sorry that they are holding up the surgery while you are in pain. I have heard good things about that kind of surgery. I am so sorry you missed the wedding in London! But the embroidery you sent was so perfect adn really showed you cared. Csn you comment again which will allow for another picture? Her gown was so beautiful. My sister in laws mom is named Esperanza… similar!
My suggestion is does your cancer center have a cancer navigator.. sometimes called a nurse navigator? Bigger centers have them to help pts negotiate these tough stand offs when pts fall through the cracks… get someone to make noise for you!
They had to hire a bus to transport the guests from the wedding to reception as parking is very limited in Wimboldon! How very British!! Enjoy your day! Still no call from scheduling😡 someone is not doing their job! I’ve followed up three days now. I’m sure on Monday he’ll be mad as it was not scheduled, there’s not much more I can do.
please write a post about the experience. I saw an orthopaedic surgeon Re my back Mets but he won’t do it preventatively. But we all will want to learn from your experience. Good luck!
bravo for you. This is inspiring and encouraging. I’m so happy to hear that you’re still getting out there with all the challenges. I’m in Switzerland right now. It’s been a little difficult to get on and off trains but I have my husband to help.
How great is that! I took the train right from the airport to Bern…it was easy and not far luckily.. we will take the train by oursleves up spend a few days up in Grindelwald… And the last few days on a houseboat In Zurich. Might you be nearby?
hi I was in Zurich for a few days before going to lake como for a week. Loved both places. Getting on and off trains is challenging for me. I need to buy the lightest weight carry on luggage and pack very little. I actually had a small carry on these past 2 weeks but it was difficult for me
hi Sha- I bought small osprey carry on and Barely brought any clothes! One thing sweater and heading by train up to Mts in Grindelwald.. I think for sitting on he train for few hours will be hardest part. But enjoying family so much!
hi Teresa- yes please read the poem which is at the top of this post… I put it in the very first comment… the last few lines made me choke up while reading out loud to my son. Well worth a read… and words to live by!
oh yes HFS stands for Hand Foot Syndrome… caused by Capecitabine ( xeloda) which causes puffy hot blistery dry very sore finger tips. This is the metabolite of the drug concentrating in the palms and soles of the feet. Cape is a newer oral formulation of an old IV chemo called 5/FU which we all may have been givenwith the red devil adriamycin back when we got adjuvant chemo whn first diagnosed… after 4-5 months on Capecitabine many pts develop HFS and might have to have a dose reduction to be able to tolerate… in this trip my oncologist is letting me cut back to 4 pills per day from 5 pills… I haven’t noticed a big improvement in HFS but psychologically I feel like I am giving myself a break. And I rest more when we stop for coffee and choc mouse cake like we did today.
many thanks for the explanation. Sounds horrible to have that level /type of side effect. I still have long term tingling in my fingers toes- a relic of the chemo - and was originally scheduled for 5FU after the weekly paclitaxal but the mets showed up beforehand!! And hopefully the ‘nice’ palbociclib (cycle 20) will continue to work its magic for many more cycles whilst accepting it’s going to stop working at some point. We live the dreams whilst we can as you are showing so wonderfully.
I'm so glad you have had this chance to visit your son and his wife. I have never been to Switzerland, but I'm sure it is lovely there. I'm sorry you are struggling with HFS. Do they know why this medication causes this side effect? Are there some effective things to help with that? I hope you can find something that will bring you relief. Cheese fondue and chocolate sound yummy. The poem is beautiful, thanks for sharing. Stay strong Beth. You inspire me. Sending you hugs and prayers.
always happy to hear from you… yes they know it is from an enzyme that concentrates in the feet and hands.. and from my old drug rep days when were taught a lot but I forget most about these drugs- but I think that in women who had more HFS with the older version of this drug… they did better than the women who sailed thru without HFS… so it makes me feel better to think that the sore hands and feet might be an unofficial marker for the women who are likely to do better on cape than the folks who have to move on more quickly to another drug. Ok here is I another picture of capital city.
Ok, that makes sense, but I am still sorry you are experiencing this. If it means you are doing better with the cancer, then I guess that is a decent trade off. I know several people on here have recommended lotions that help with this condition. I hope you find something that works. Cool picture, enjoy your trip. Sending hugs.
I am so happy that you made the trip to Switzerland to see your son and daughter in law. Switzerland is such a fantastically gorgeous country. You are indeed living your wild and precious life to the fullest. You inspire me to do the same!
that is such a nice thing to say! My son lives at the end of a little lane high in a hill with corn fields all around but only about a foot high.. there is a beautiful Swiss style wooden barn that I must get a picture and post… I wish I could post a video of the vista with the mountains in the distance.
Your post made me so happy! We need to live, love and enjoy this wonderful gift of life for as long as we can. To be honest the best medicine is not what the doctor gives, it’s a hug from a child, a wonderful trip or just plain enjoying nature! Have fun! Safe travels!
The trip, the pictures, the poem.....all are just great! Like I have said you are an inspiration. I am so impressed and encouraged by your zest for living, especially with everything you have going on. Enjoy this special time with your son and take in all the Switzerland has to offer. Keep the pics coming!!! Safe travels 😊
I've only been through Switzerland on Eurail, years ago, but the views of the mountains have stayed in my thoughts and I still regard it as one of my two best travel days ever! So amazing! I hope you get to see some of that, too. I'm on Xeloda, too, and have hand foot stuff. I already had some neuropathy in arms, legs, hands and feet. The palliative care NP prescribed Triamcinolonre Acetonide 0.5 ointment and it has helped heal most of the skin splits but one on my index finger just won't heal! I've found Orthofoot shoes to be the most comfortable but they are not cheap! I can't find any "dress" shoes that work anymore, sniffle, sniffle, weep, weep! Some body here suggested urea cream for the hand-foot soreness. I bought some on line and it is really thick and hard for me to get used to, but it seems to be helping my feet. I also got some white cotton gloves on line. They were inexpensive, under $10 for 10 pairs. They help protect my fingers .... I have one on my left hand right now and I'll stop correcting typos for a couple of luines here so you can see that, LOLk! I have a walker that's a huge help but am needing it less and less around thre house. But this h-f thing is one of the worrst sidre effecvts I've had in the 19 + years I've had MBC. I sure have a ggreater understandin g of just how important our hands and feet are! Oh, another thing I bought that's helped alot is a button hook.
Enjoy the time with your son! And take alot of chocolatre home with you!
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Goodbye to Ibrance . Gutted but not surprised. 
One year on Xeloda update
interesting Xeloda trial
