My Husband, My Life, My Love, My Family, My Cancer
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Micmel your daughter and your dog are both beautiful!
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Wooh, as a uk resident, slightly concerned about the media coverage the coronavirus is receiving. Just listening to our own radio 4 news which makes this sound like Armageddon. To clarify we have had 36 cases in the whole of the uk. Scotland 1 and we have a population of 5 million. No deaths ( yet). Most people recover well, but we do need to be more careful for everything. The annual Flu virus here kills thousands in the uk every year!
Basically do the things we always do as immune compromised patients. Avoid crowds, leave or move if there are folk coughing and sneezing, wash hands plenty with proper soap and water ( sanitiser is pretty useless but better than nothing) and use anti bacterial wipes on areas which may have been recently touched by a snotty nosed person....hotel etc.
I just had a horrible cold a week or so ago and was panicking a wee bit. Felt crap, but my temp stayed in normal range and that was key. Advice here is not to go to docs or the ER but to phone nhs 111. In our case it would be phone your team!
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hello my friends,
I finally spoke with my MO.
I didn’t give him the heart to heart. Yet. But I will next time scanning happens.
But it turns out some new spots have shown up so I’m not stable 😞. I wish I was!
There’s a new spot on my SI joint and my spine is lighting up with metabolic activity. Meh 😕.
There is talk of treatment change. I’m not ready!!
I’m heading to Jamaica for about 2 weeks, in ten days! Nothing will happen until after I get back as far as talking more about the right way to go and move forward.
I’m tired!
Love you all and in Mel and Moths pockets with homemade chocolate chip cookies!!
Philly
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Philly I hate those spots. And really seems as if they should’ve told you that immediately. Scan communication results need an overall. Enjoy your vacation in spite of all. Lots of other treatments.
Tanya
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Philly, so sorry about not being stable. Hope you have a lovely vacation anyway.
Mara, that was in impressive bit of self honesty and actualization to know that no one owes you anything but that you owe it to yourself to make your own life good and lovely and beautiful. I read that and thought wow, this woman speaks the truth.Micmel, you daughter is absolutely gorgeous, gets it from her mama I think!
Hub was telling me that this Corona virus is affecting world trade, that stock markets are crashing, it's going to result in a drop in all sorts of values, oh dear, what on earth shall we do? I said, BUY! BUY NOW! Now is the time to invest in stocks we would not otherwise be able to afford. Wait from some favorites to hit the floor and then buy! I have faith that we are going to bounce back from this and when that ball goes up, I want to be on it!
Hi and hugs to everyone.0 -
Philly-What a gut punch-especially after the person told your dad that there would be no treatment change. Good thing you listened to your body and insisted on the Pet scan. Hope that your time in Jamaica will be a perfect blend of rest, healing and fun.
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Philly,
Let me join others is saying that I'm sorry that you didn't get the news that you thought you were getting. (And I have to say that it's a little bit disconcerting that the nurse (?) said that all was okay and there would be no treatment change.)
I did notice that you are taking Ibrance with letrozole. One thought I had was that perhaps you could try Ibrance with faslodex instead -- maybe something to run by your MO? That would preserve the Ibrance part of this, while still providing a slight treatment change as well.
In the meantime, hope you have a lovely vacation in Jamaica and get into a good head space to deal with this upon your return.
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Oh Philly, it sucks to read this news, especially after the original reassurance from the nurse. At least you can get out to a sunny vacation for a little bit and enjoy the beach and warm waters.
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Mel, Moth, and Jen,
Reporting for pocket duty. I’m bringing Toffee Bars. Really. No kidding. I made them for my dear nurses and others who take such good care of me during infusions. Today is another infusion day, so I am coming along just fine on Abraxane.
Philly, I hope you go on vacation and have a blast. Don’t let those results get you down.
Mel, your daughter really is adorable. And her pic with the dog is so cute.
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booboo, I will join you for pocket duty and bring along my chocolate peanut clusters. Melt a cup of choc chips, 1/2 cup peanut butter, mix together. Add 1/2 peanuts. Put on baking sheet and put in refrigerator for a few hours. Deliciously good without being too rich.
I walked for an hour on the treadmill this morning which was nice. Am getting ready to bus it to the mall to get more chocolate bars from walmart and a can of beans as I have an addiction for both chocolate and black beans with queso.
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Thinking of those having scans this week. I hope all turn out to be Good news.
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dreary here today. Took a nap well needed. I’m having scanxiety as we have all experienced one minute I feel ok the next I’m convinced I feel something new. This is enough to drive everyone crazy. Thursday starts the gamot Of tests. Blood work. Friday shot and scan Who hooo! Just what a woman wants in her week. It’s a mental torture. Is what it is. Yuck.
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Mel, may you get your scans over with and really hope they are stable. Wishing I could help more than saying I am thinking positive thoughts for you.
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Everyone being here does help It’s just the feelings we all get just waiting to get it over with. I just don’t like interruptions of my routine. I just like weeks without no doctors visits or bloodwork. The mind seems to forget it when you have been away from it for a while. Especially scanning.
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Ladies Who Scan this week - I can contribute some cake to the pocket duty. Mel - you are right, its such a disruption to the mental balance of living with MBC and knowing that the scan results could upset the broader balance. Maybe in the future when medicine is more advanced or, god forbid, there is a cure for us people will look back on these days and wonder how the hell we managed the mental and physical strain.
My BCN called yesterday to let me know scans showed 'clinical improvement'. Which I figured and will assume they mean measurable. After I hung up with her my critical insurance lady called to tell me they were paying out on my claim after finally getting through to my GP. So that was a nice 1-2 punch for once! Then dad emailed later in the day to tell me it looks as though my brother caught his issue early and Stanford are going to fix him up ok, and that he was motivated to go to the doctor about a suspicious lump due to my experience. While I'm glad its going to work out for him I feel awful for feeling jealous and wishing it could work out for me too.
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Hello Sondra~Yup full blown PTSD today. I hate it. I'm trying to cross stitch to keep My Mind off it, but my poor fingers can't take much more Tomorrow 830 bloodwork. Which will give me insight on my tumor markers. Which I like. But Friday 830. Scan And shot after! Can't have my coffee and have to drink raspberry hand lotion. But it's better than the plain they used to have I have heard of some great flavors out there now. Finally getting a clue there at least! Come on cure ! Glad an insurance problem Was resolved, we all know that isn't easy. I'm jealous of any breathing creature that doesn't have cancer. It's a terrible way to feel. Day in day out. But on we march. I'm not changing treatments so I hope I don't show any need Not losing my hair again It's longet than it was before I lost it the second time. Can't go through it again. Too traumatic some don't care and oh I wish I was them.
I hope everyone is okay today! Scans or not!
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I'm taking you all in my pockets and your treats too! I leave in 45 mins for my ct. It's an early AM appt and I feel awful in the mornings now. Don't know why, really, but I think it's still grief - like I wake up & then that first thought of oh shit I have stage 4 & then my body is just pain all over. It's been just a bit over 3 wks since my diagnosis & I'm not adjusted at.all. My mom is coming to take me to the appt as I don't feel safe driving. My mind is all over and then I get these out of the blue all body chills which knock me off my feet. What if that happened when I was driving? But I don't know if I like being dependent on rides like this.
Breathe Mel. I'm holding your hand.
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Moth,
Good luck with your scan today. Take your own advice -- breathe!!! I find that actually does help, especially during scans which scare the heck out of all of us.
Mel,
Good luck on your scan/blood work as well.
I have an MRI of my abdomen tomorrow. CT scan was stable (although tumor markers are rising) so I'm hopeful that the MRI tomorrow will be okay as well. If not, I meet with the interventional radiologist later in the day, so hopefully he will have some tricks up his sleeve.
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Moth, you are so newly diagnosed that it is not surprising there is exhaustion, panic and being overwhelmed. Scans are extra stressful at this time as are the initial appointments and not know what treatment will do for you. You are also on the AC part of the treatment I assume. The steroids required plus the fact this is a very strong chemo (Had it myself) affects sleep and also hinders your bodys natural healing. Your mind is also trying to process all this. For now I suggest focusing on one thing at a time that you are given to do. Do NOT think too far ahead, take one thing at a time until you are off steroids and getting some sleep. Keep moving when you find energy, that will build some reserve and eat whatever appeals to you, even if it is junk. So just get to the next test, next chemo etc. It would also be a good idea, when your mind is more rested and at ease, to have the difficult conversations about getting affairs in order. Mine were essentially done for me by lawyers. This is a good thing to do, not because you are immediately going anywhere, but because it takes a huge stressor off any caregivers you may have. This does NOT need to happen immediately. You will get more settled in time, takes a long time to get there, but most of our day to day does not have to have cancer and fear in the forefront. For now, one task at a time, do whatever makes you feel better and get professionals who can help you deal with the mental stress.
It took all of these things and a long time for me to come to terms with my own disease and stage IV dx. I have been here 5 years with this disease and life for the most part is good and looking up overall. I was told to immediately get affairs in order back in 2016 and my brain has held up pretty well too. I will say scan anxiety will likely always be there as we all want stable or NED, but day to day life can be almost normal.
Mel, will always be in your pocket with whatever you need me to bring, Food, Riesling wine, whatever. Sorry this is so hard. Sorry is such a weak thing to say, I can empathize with the scan anxiety. I don't feel it for CT scans (neck down) as I have been NED there for 5 years almost. Always feel that way for brain MRI because I have had such heavy duty treatment already. That is the one that I have to walk away the stress and throw myself into hobbies or TV.
Not much on tap for me today. Already done walking and chores. Going to go buy some proper walking shoes for the outdoors. Hoping to find similar shoes to the ones I use on my treadmill. Need something to hold ankle more in place as ankles tend to bend to the outside. That's about it. Not busy and already have plenty of chocolate and beans (my two favourite foods). May try other beans in the mix too, who knows. They are cheap and nutritious. Also really nice with queso, tortilla chips and extra cheese thrown in as well. So yummy. Addicted to both of these. I am finding I eat less actual meat. I will not actually totally stop meat, but don't mind having less. The beans also seem to have helped bloodwork as nobody is complaining that I am a little anemic. That is good. I also am not choosing the processed foods as often. Though I like them, the things I enjoy now are cheap AND nutritious, a big win for fixed income.
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Moth, jumping in your pocket this morning for your CT scan. Bringing gooey butter cake, fresh out of the oven.
I relate to your description of mornings. I wake up and as I get out of bed, my left shoulder hurts, reminding me that yes, still this morning I have mets in my bones... they still hurt. What a way to start the day.
Hoping scan results help your team get you on the trial you have written about. Thinking of you today. Hugs
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Micmeo- in your pocket, too, for your blood work and scans. Hope all is stable. Where are you with Ibrance? 40+ cycle, right? Keep going. You are such an inspiration to those of us on I/L.
I have my first blood work after my first cycle of Ibrance tomorrow do I understand the “nervousness” aspect. Hope my ANC won’t prevent starting cycle 2 next week.
Hugs to you as you get thru this week
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next week I prepare to start round 42. I don’t want to stop taking it or change treatments. I feel okay. But I’ve been more Active and my body knows it. My hip has been giving me heck for about two weeks now. Which is right around the time I started heisting my dog up the stairs 5 times a day or more if needed. I hope it’s muscular!!! Scary shit
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Moth, BevJen, Micmel and others who are undergoing scans and tests, riding along with you and praying for news that is not devastating.
I think Sondra just coined a new club name, Ladies Who Scan. Maybe we all need t-shirts that say in bold letters LADIES WHO SCAN and then below that in small letters and brackets (buy the wee motorhome!)
Hope everyone has a decent day. Hugs.
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I came by to this room full of beautiful Ladies to bring some good luck on your tests and scans. I am told I bring good luck to people around me. I am not sure if this works virtually
Lots of hugs!
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Hello all.
Mel, moth, Bev- In your pockets for scans and tests.
Philly- Good Grief !!! I thought the nurse said all stable. GGGRRRR. I am thinking you should try Ibrance/Faslodex like BevJen said. Enjoy the trip if you can. Hugs.
I have spent the morning on the phone with my insurance company. Sigh... I am stable for now, thank God. But I am always looking to the future, for when progression happens. I have said before that I receive my care at my local onc (rural area and community hospital). I found out that the closest large cancer facility 2 hours away opened a satellite location 1 hour from my home. Woohoo. Or so I thought. My insurance company says of the 5 MO's on staff at the satellite location, none are contracted with my insurance. I did verify that the MO at the facility 2 hours away (that I saw when first diagnosed) DOES take my insurance. So if I want to move to the larger, NCI designated, cancer center I have to travel to the site 2 hours away not the one 1 hour away. Kind of bummed. We don't offer clinical trials at home, but this cancer facility does. And they are NCI designated, mine is not. Insurance companies rule our healthcare.
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Yikes! We all seem to be in the middle of scans and not great news right now. Hang on in there Ladies.
Me too. What was supposed to be a few days away in the fresh air of the Lake District walking the hills before bloods/ scan etc next week is still that ...apart from breaking a molar tooth on day 1 - no pain thank goodness but needs fixed ...dentist at the ready when I get home. Plus a flair up of tendonitis in my foot day 2 - very painful and been popping brufen and icing the foot ongoing. We walked a good 10 miles day 1 and felt fine apart from foot. 5 easy walking shopping miles today though, spent no money either...result! Think we’re at the stage where we actually have all the Stuff and nothing appeals!
I’m Bloody well climbing the wee hill we planned tomorrow ....it’s a favourite and don’t want to give in just yet! Intensive foot care and the local chemist catering for walkers with physio tape should see me through.
Lily, lovely pic which goes well with breathing!
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Karen, you are my walking inspiration doing 10 miles wow and that wee hill. I bought myself a twin pair of running shoes to the ones I wear on the treadmill. Very comfortable. I plan to attempt a 10 km or 6.2 mile walk to go get chocolate at Walmart. tomorrow. I enjoy the challenge I am putting before me. Slow and steady with rest breaks will be the order of the day. If I can do that, I will be proud of myself. Today still had a couple hours of walking and I was working with 4 hours sleep from going to bed to late. Need to keep pushing myself.
Still in everybody's pocket for scans. Candy, i am sorry to hear that you can't go to the place for care that you wish too.
Philly, I am also so sorry that the nurse indicated stable results and now you are dealing with some progression. Very disappointed to hear this for you
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thank you my friends for your love and thoughts! Yes it was odd that the nurse (and NP!) told me what they said about not chasing treatments hence leading one to think I was still stable. I think I knew somewhere inside that they weren’t telling me the whole story, and that’s why I was so upset that my MO hadn’t called me. Funny how when things are wonky, we can sniff it out but can’t quite put our fingers on it!
I am drinking a glass of red wine over here and I did get to the gym today and had lunch with my beautiful massage therapist at a yummy Indian restaurant that I love.
I had an offer to go out and meet some friends this evening but honestly I think I’m a bit like a soggy licking it’s wounds and paws after being tackled in the mud. Laying low here (for me, I’m usually such an extrovert!). I can feel the toll this is taking on my energy. Listening to my body and resting and being a hermit. Tomorrow is a work day and am pretty much working all the way through next Monday. So enjoying this respite while I have it!
Moth how did it go today?
I apologize for being a little spaced out. I usually do so well reading and retaining what people are posting but I am in my head right now.
Love
Phill
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sitting right next to you. philly in my own head. So I can relate. I am here. But of course its nerve racking. Having you all helps Wonderful ladies
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I'm home from the scan and feeling fine. One advantage of being there so early is that it was empty and quiet. The nurse who put in my IV was also very good and he listened when I explained the specific problem with my veins and he got a beautiful start. (I've had 2 failed starts in the past two weeks; my veins look deceptively good, nice and juicy, so they fool people).
mara - thanks for your note. I'm not doing any treatment yet (& that's adding to the anxiety - are we making things worse by waiting for this trial to open?). I'll find out on the 16th if I got accepted into the clinical trial. The scans today were for the trial as they need them to be within 4 weeks of enrollment and the ones with which I got diagnosed were just over that so they redid everything: head, chest, abdomen & pelvis. So much radiation
If I'm accepted, then treatment will start on the 19th. I think if I don't get accepted, our plan B treatment probably starts then anyway. Next week it's appointments every day I think - heart echo, lab work, albumin transfusion, MO appointment etc. I'll also be trying to get to the metastatic support group next week. Hard to think about anything else than cancer right now as it's in my calendar pretty much every day. 0
