My Husband, My Life, My Love, My Family, My Cancer

jensgotthis

Dear Candy, I’m so sorry your sister has passed. It was very touching to see how much you cared for her, my heart goes out to you.

When I read your post about wanting some fun, I wondered whether you might have interest in attending a BC retreat like Mary’s By the Sea or another. They offer a free get away and are taking special COVID precautions. I’d love to see you go on one in a few months. I’m sure friends here know of others.

jensgotthis

Rosie,

My tips are to buy travel insurance (both if you have to cancel and for medical extraction), disinfect the plane area and your hotel when you arrive, and pack as lightly as you can so you don’t have a million pound suitcase. It could also be worth paying to go through the priority line at the airport.

I also pack a mini pharmacy just in case I need pepto or anything and I also travel with a Z-Pack in case I need an antibiotic.

I love to travel and am grateful to have made some wonderful trips in recent years

Karenfizedbo15

Re travel insurance, although I managed to buy a policy previously with an MBC diagnosis, as soon as I had a DVT a year ago, a pleural a fusion and hospital stay in Jan this year I became uninsurable. No company will touch me now and because I have spread to bones too now even something like a fall in which a bone may be broken will be blamed on the MBC and not covered. Basically I’m only insured for lost luggage!

Micmel

Karen~I hope you get to go on your trip. I only go to local places. I need to have my own bed for sure. I hope you not only can go, but have a blast.

Hello Moving good to see you , Jen you too. so nice to see all of the support for our sweet Candy. .

Sunshine99

Rosie, my tip is that if you want to travel with a liquid med larger than the TSA approved size is to get a written prescription from your MO. Even if it is an OTC product (like mouth rinse), you should be able to travel with the larger size in your carry-on if you tell them it's a treatment for cancer and you have a prescription for it.

Ditto about the TSA pre-check. If you can get that, you can avoid the longer check-in lines, and getting Global Entry will save you time when you re-enter the USA.

One more thing is that if you're traveling in Coach and want a little extra room, is to pay a few dollars more for Economy Plus (or whatever they call it). You get priority boarding and a little extra leg room. Or, heck, go First Class!

moth

candy, I am so sorry about the loss of your sister Susan. May good memories fill your heart and bring you comfort.

Anonymous

Karen - the UK pre-existing conditions travel insurance market has more or less collapsed and there is only one provider offering insurance (All Clear I think, who are now charging insane prices). No one else is writing policies at the moment due to "business changes" which means they are probably recalculating due to Covid. Its a mess - best you can do is get the UKHIC card for Europe (if you can in Scotland?) and while it won't cover evac it will cover treatment even with pre-existing so at least you can get out of the UK!

RosieRed - Chicagoan recently travelled to Greece, so she may have some additional points, but I would suggest:

1) Budget in to pay extra to sit further up the plane - at least economy plus or premium economy. The extra leg room and ability to move in and out over time is priceless. Always check business class pricing, or "splitting the difference" of prem econ one way and business the other. For flights less than 4 hours it may not be a substantial difference over econ. Depending on where you are going, consider non-US airlines as they typically have better service/seating or upgrade options.

2) Flight socks for long haul to help prevent DVT - Comrad compression socks are worth checking out

3) Travel insurance - check your main health insurance provider as they may have an add on you can purchase separately. You probably wont be as bothered about lost luggage, but medical evac and medical treatment are the big ones (obviously!)

4) I carried my ibrance/letrozole in my handbag and it went through the scanner just fine, but I also carry my spiky therapy ball and exercise bands in my luggage as well - helpful to stretch stiff muscles or work out knots/kinks from too much walking. I also brought along Clarityn, tums, blister covers, band aids,and both advil and tylenol. Oh, and anti-D just in case. A lot of pharmacies in other countries are more than helpful if you have a minor complaint and can sort you out pronto if its something behind the counter.

5) more than before its important to travel super light/comfortably. We use packing cubes (cheap ones!) in special backpack suitcases ( https://www.standardluggage.com/collections/travel...) which limits what we can carry, but then pack a large duffle bag as well to fill with stuff to throw in the hold on the return. You can always buy what you need on the road or find a laundromat/service for laundry.

Anonymous

Candy, I wanted to reach out and say I am so very sorry for the loss of your sister and everything you've been having to go through. You are loved in these forums and we will surround you with whatever support you need.

moth

runor, we has to make the go/no go call last week and decided to cancel and stay close to my MO. Fire out in Penticton yesterday just kind of confirmed it was better. I'm disappointed but getting over it.

movingsoccermom, wow what a rough time you've had! I hope the abraxane works quickly for you.

I'm just home from seeing my MO. Starting the steroid taper tomorrow. Chemo is on this Thursday assuming my labs are fine. We think it was some sort of inflammatory process, maybe triggered by allergies? I *felt* like my lung had collapsed or I had an effusion but there was nothing there on the cxr so just gunky lung.

I'm trying to get some things done but the steroids are making me very unfocused and scatterbrained...

Chicagoan

RosieRed-I don't have much to add to Sondra's advice. For the first time ever, I just took a carry-on bag for a 2 week trip. I used to really over pack. I did just fine with the carryon bag and then all my medications were right with me. I had to carry my bag at many points and was so glad it was small and light.

I am very frugal so I got just a cheap seat. Thankfully, they overbooked my first flight or I would have been in a middle seat for 10 hours. I did make a point of getting up several times in the flight and stretching so that I didn't get too stiff. Everyone was doing it so I didn't feel like I was being a bother.

Hope you find a nice place to go. I just saw the EU might not be allowing US visitors. Totally fair since we aren't allowing them.

candy-678

Thank you all for the well wishes and the condolences for my sister's passing. Graveside service on Wednesday. Small family.

Should be hearing this week about starting Lynparza. It is going thru the insurance approval part. I have been off Ibrance and Letrozole--- washout period. Do not feel any different. Same aches, fatigue, nausea, etc. But maybe not enough time to get out of system. And the grief/stress is playing a part.

No rest for the weary. Now on to my health issues.

RosieRed

Thank you all for the travel tips. I really do hope we can get away. I miss palm trees and ocean. I was spoiled when I was younger because I’m the oops of the family, so when my parents were in their 60s, I was in my early 20s. They bought a few places in Florida and that was my very easy, relaxing vacation. I only had to pay for airfare and my parents fussed over me. Now that they both have passed, I don’t have a place to go and just relax and watch the palm trees sway. My last vacation was in 2019 when we booked a cruise to Key West and the Bahamas. COVID took away travel in 2020 and January 2021 is when I got diagnosed with MBC.

mara51506

Candy, glad you will be able to focus on yourself more. I am not surprised you still are washed out, as you said the grief and stress with your sister's passing will of course impact your energy. I am still thinking of you on all fronts now.

Micmel

Hello Ladies. I’m thinking about you guys and all we are going through to live another day. I hope you know how important you are all to me. I figured time. Moves so fast I have to tell people how I feel about them. You’re like a little family. (Big little family )

Mae~ American Horror Story started again!

illimae

Micmel, I know! I watched the first two episodes yesterday and I like it so far. Nice to see familiar faces.

Our houseguest, moved into his new apartment this weekend, so tomorrow was take some mattresses to the city dump. I did a walkthrough and all that’s left really is some furniture to toss, some to sell and everyday items to pack. I’ve got scans on 9/27 but we could be ready to sell soon and out after that. Yay!

Lee64

Hi All, after spending 8 days in the hospital with pneumonia earlier this month, I am ending the month with pretty good news. Had labs today as well as a CT scan. Got results late this afternoon: blood work is good except sodium is 4 points lower than normal but the scan showed STABLE. My ONC called tonight and said everything looked good but he is referring me to Chest Clinic because he is concerned about a nodule in left lung due to low sodium. He wants to make sure if it is breast cancer or lung cancer. Sort of rained on my parade but I guess just another hoop to jump through. Has anyone else had low sodium and was it given this much attention? By the way, my sodium has been low since 2010 when I was first diagnosed with Stage II breast cancer. Any thoughts would be appreciated.

Moth, sorry you had to cancel your plans; how disappointing.

Rosie, hope something works out so you can have a nice get-away.

emac877

Candy - I know this is late. I just wanted to express how heartbroken I am for you. I have not been able to check in but have kept you in prayer and you have been on my mind. Your strength and selflessness in this is amazing. I am glad that you get to focus on your health issues now and I will be thinking of you on Wednesday.

Not sure who all is in the Ida aftermath but I hope you are safe.

I could use some pocket duty tomorrow. I have had some increased pain in my right leg (the one with the rod) and X-Rays are suspicious for a hairline fracture in the right femoral neck. I have a CT chest abdomen pelvis scheduled tomorrow morning and a bone scan pending. I am hurting quite a bit but still ambulatory on it.

illimae

Emac, we got you! I’ll bring mini candy bars (Heath) and Skittles to pocket duty. I wish you excellent luck tomorrow.

moth

emac, sorry you're in pain. reporting for scan duty. Fingers & toes crossed

Kittykat9876

Reporting for pocket duty for Emac, and everyone in Ida's parh please be safe. Good news Mae, you'll be settled in your cabin before you know it. Lee, I hoe they get to the source of that lung met às soon as possible. Rosie, I hope you get to lie on a beach somewhere.

RosieRed

In your pocket, emac, with Nestle Crunch bars.

GoldensRBest

emac - here for pocket duty. I have nothing good to bring so I’ll eat some of Mae’s Heath bars so you not too tempted😉😉😉

candy-678

Lee- Woohoo for stable scans. Sorry you are having continued problems with your sodium levels. Keep us informed.

emac- Pocket duty for your scans. Wow, maybe a fracture. I hope not.

Well, now they think something may be brewing with my thyroid. I have had a thyroid nodule since 2015. 2 biopsies in 2015 and 2016 benign. PET in 2019 said SUV 3.8. We didn't really think much about it. Now, this PET says SUV 7.8 and "suspicious for malignancy". MO wants me to see an endocrinologist.

My Lynparza is being delivered Friday. So starting it this weekend.

Still limping on hip issue-- fluid on joint and bad cartilage issues.

I hate all this. I just want to be healthy.

KBL

Emac, here for pocket duty.

Candy, I’m so sorry things are so rough for you. I am thinking of you and hoping like hell your thyroid issue is benign. Sending hugs.

Tanya_Djamila

Emac pocket duty.

Candy just want you to be healthy too.

Waving hello to Boo.

Hope everyone is ok.

Tany

illimae

Lets all send good vibes for philly too. She posted about having just been diagnosed with lepto brain mets. I don’t recommend googling it, it’s terrifying and outdated.

booboo1

Emac,

As someone who had the same surgery, I am praying that you do not have any fractures on that leg! What would they do if there is a fracture? Remove the rod? Oh my dear sister, I’m praying hard for you. Please let us know how things go.

Waving back at my sister Tanya! Mel, hope you are doing ok today.

We had a new air conditioning (and heating) system installed yesterday, so we had no air from 9am-9pm. It got pretty hot in here. I had a taste of what those poor folks in LA are going through. Does anyone else think it’s weird that Hurricane Ida hit on the anniversary of Katrina?

Sunshine99

Good morning everyone. Thinking of all of you today and hoping for a good or better day for each of us. I'll be the one bringing Peanut M&Ms. Let me know if you have a peanut allergy and I'll just bring the regular M&Ms.

I'm out in the desert near Palm Springs, CA. Can hear thunder. Am hoping for a good old fashioned thunder/lightning/rain storm. We get very excited about rain in Southern California. Crazy that we have drought and wild fires while others are having hurricanes and flooding. Stay safe, everyone.

Carol

illimae

Sunshine, DH was living in 29 Palms (taking care of his mom) when I met him. The desert is a vast and beautiful place to be, enjoy.

mara51506

Pocket duty and wishes for less pain for Emac, still thinking of Candy as well.

Just sitting here still sweating from one of my really long walks, had a burger lunch as well. Finding I cannot eat as much even though it is only a kid size meal. Oh well, it still tasted good. I will admit, I almost got myself lost as I wanted to stay in the neighbourhood more. I usually go up a busy road but no trees or many dogs to see. Will have to figure out which way works better for me next time. I also used a UV umbrella and though I find it a pain to carry around, I feel a bit cooler when I use it.