Bone Mets Thread
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Dune - we went nuts spending for a while... My thing was kitchen appliances. Beautiful red stand mixer, a grill, pasta maker, etc. Irony of this is that I really don't cook. My husband does 99% of the cooking. I used to be able to cook, but between being out of practice and my US recipes not working here, I really just don't cook much. But when I do - I have the right appliance for the job!
I also bought a new camera. I'd been limping along with my 12 year old digital camera which wasn't working right and giving me crap pictures. I decided that since photography is my primary hobby, I may as well invest in enjoying it and get some decent pics. Chose one my hubby can use for his hobby of astrophotography too, so not totally selfish on my part. I also bought a newer car. So yeah..gave up on saving to buy a house and started spending on stuff. But where we've really splashed out is on activities - trip to Kapiti Island, Cheetah Encounter (got to pet a cheetah!), trip to the South Island, steam train ride, etc. And while I'm pretty much over the kitchen appliance thing, we're looking at what activity we're going to give ourselves for Christmas.
Back in the day, I used to do stress relief shopping. My 1 ct each diamond earrings are testament that little bit of stress in the 80s. So that may be part of it for you Dune. I'm not usually a jewelry person either, but I do have some lovely pieces I bought during stress shopping sprees.
I must admit, it has been fun doing stuff and having nice appliances. That said, I need to get back to saving in the new year.
Hugs to all,
Terre
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Dear Tartie Pants
Please listen to me. Not having kids or a partner does NOT make your life any less valuable or important. Is there a Social Worker or counselor in your area that you can talk to? One that specializes in helping people facing serious illness?If you aren't sure, please ask our doctor. Most hospitals have resources that are available for free.
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Hello ladies,Hope you all had a good Thanksgiving.
Slgarcia05 - yes, the last time I saw the radio-onc in September, he told me I could have other rads (mets were stable at that time). We decided to keep the rads option in our back pocket and see how the post-op healing would be. I had 5 tx of rads to pubic bone and femur. I guess my maximum dose is not reached yet. I'm curious to see what your radio-onc will offer you.
Dune - After my dx, I wouldn't spend on anything, not even a winter coat that I no longer fitted in thanks to Femara and Tamoxifen lol. I didn't think I'd be still around a year later (with a pretty good QOL might I add). So yes I spend on rings, earrings, clothes (to fit my new size...), restaurants, planning a trip etc. I also treat myself to acupuncture regularly (I think you're a former acupuncturist) I always come out of there feeling relaxed with better energy and less pain.
Tartie Pants - you deserve the best for yourself. As Shutterburg said, try to get some help and please keep us posted.
Linda
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Thanks guys i will, I actually had a great therapist as part of my initial treatment team and I will be reaching out. I was triggered horribly yesterday. My mom is having a biopsy on Dec 12 to confirm what they suspect to be renal cancer and in a mind screwing twist of fate that will be 5 years to the day of my tests. She has already had melanoma which she beat then because of that and scans they did to watch they found an early stage of lymphoma which is slow moving and annoying.. Last year it got to the point where is was putting pressure on the kidneys so they did chemo.. Mild no steroids needed no hsir loss and it resolved that but then durning a follow up scan hello kidney. And yup different kind. Cant she collect hummels or something normal. This time around its atc for chemo and we all know that joy. So not only was i feeling my normal MBC guilt but daughter guilt as well. Im the one statistically that is supposed to go through multiple treatments not my mommy. Oh dr royal tou will be calle ASAP
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Hi tartiepants,
I am sorry that both you and your mom are going through cancer. There are many questions we all ask ourselves and lots of wondering about what the future holds. It is part of what bc brings. You mention worrying about your bc coming back at any moment, so I am thinking you are not stage IV and your dx line says DCIS. Since this is the stage IV forum, specifically bone mets, some of our concerns may be different than yours since our bc will never go away. Have you checked out the DCIS threads? Also, my apologies if you do have bone mets, as it was unclear in your post. Take care.
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Hi tartiepants,
Just re-reading your posts and responses so am a bit more unsure of your dx. Regardless, you been given some good advice. This is a tough road, for sure. Hopefully, we all find a way to deal with it.
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Wow. A lot has happened since I last checked in. Smiley47, thanks for the perspective on scans. I know whenever I have that "nervous because I don't have enough info" feeling, I can come here and someone has something helpful to say.
Tracey - glad your port placement went well.
Jojo and SLgarcia, so sorry you are experiencing pain. I hope things get better for you both soon.
jobur, I too ate (and drank) too much yesterday and I have a hangover today. And I am spending way more than I used to. It was when the scarey statistics hit me that I started to just buy without thinking it through the way I used to. Things I've splurged on:
cancer books, cookbooks, winter coat, boots, active wear, suitcase, lipsticks, haircut (pixie) which needs a trim every four weeks, acupuncture, massage, saunas, vitamin supplements, restaurants, new phone, and I'm flying to San Francisco next week, so in addition to the plane ticket, there will be travel expenses.
I reason that I won't need money for retirement, and I don't have children or a spouse to spend on. Eventually, I believe I will come out of this spending mood, and be careful with money again, like I was before dx.
(I do like those necklaces, you linked to. If you get the cedar tree, it will only be half as expensive as the tree of life. You save!)
tartiepants, your post made me so sad. I sometimes feel guilt for not being more sick than I am, but I don't let it stop me from taking care of myself. Please be good to yourself right now, you are worth it. And your mum will want you to be healthy. You need your strength for her, and for your friends and all the people who care for you.
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ninetwelve,
10 lashes with a wet noodle (as my mom used to say)! Neither you nor anyone should ever feel guilty about not being "more sick". We do not choose the course of our disease, so can't choose to be more sick or less sick. My heart goes out to those who struggle with difficult symptoms and se's, but guilt over not feeling worse won't make anyone better. Stage IV runs the gamut from excellent QOL to dreadful suffering and everything in between. Over time, we may all be at different places on this spectrum. I urge those who are feeling well to enjoy every minute of it and send good thoughts and prayers to those who struggle.
Getting off my soapbox now, but as you can see this is an issue that rouses my emotions. No competition over who has or hasn't suffered enough!
Caryn
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tartie_pants, it really does seem unfair that your Mom has had so much going on, and I totally get how the testing and fear she's going through could absolutely retrigger all those PTSD reactions from your own dx. And I agree about talking to someone, and I'm glad to know you're not only open to that, but alreay have someone you want to reach out to. Does your Mom as well?
And I too am confused by your MBC guilt comment -- guilt that you do or don't have mets?
In addition to the threads Caryn suggested, there's also a forum here for caregivers, some of whom are probably in very similar situations to yours. They might be able to understand and speak to aspects of what you're going through in addition to the support here.
Big (((hugs))) to you, and prayers that perhaps your Mom won't have renal carcinoma afterall, or might be able to do a much less toxic chemo for it if she does. Deanna
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oh no its metastatic when i say come back i mean come out of NED i had an avacado size tumor to the right breast a golf ball lymph node mets to the sternum femeral neck 3 lower vertebrae and right ovary which wasnt discovered until my elective oferectomy so yes i know i always have it but unlike others all it has meant to me is daily femara monthly now quarterly xgeva and biannual PETS. Which is part of my issue as well i feel like i am in this middle world not cancer free like another stage but its not anything more than someone with a chronic illness either. Sorry for being whiney or ungrateful i dont mean to come off that way. Ive just been holding so much in for so long. I did reach out to my old therapist even though i will be out of state to help with my mom he will be doing phone sessions with me.
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Hi
I came on here looking for help/support for my friend who has just been dx with bone mets......she's in denial & won't post on here..........but no response at all!
Thanks.............
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Hi, happygran. So sorry about your friend. I went back and read your post from two days ago. I didn't see a question, but I feel for you. It's so hard to watch suffering in someone you care about. Was there something specific you wanted to know?
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happygran, I remember responding to one of your earlier posts a few days ago, as did several others. I see you posted again more recently, but it seemed to be a repeat of the same question, and rather pertinent to tx in the UK, with which I have absolutely no experience. Did you see our earlier comments??? As I recall, her surgeon choices were limited, but she was going to consult with one. It seems that's where you left off with us... Any further news? How else can we help you? (((Hugs))) Deanna
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I forgot to say, when talking about "survivor guilt" or "not sick enough guilt" that I don't think it's a rational thing. I don't choose to feel it, and I don't believe I deserve to feel it. It's just there, and I talk myself out of it when it comes up. I acknowledge that it's there and try to move on from it. I know what Caryn is saying is that we don't need to feel bad about our relative health. (Thanks, Caryn - I am working on accepting my good as well as my bad news. Some things take time to learn.)
tartie, I'm glad you're getting therapy from someone you know and trust. And I don't believe you are whiney or ungrateful. But even if you are, it's okay to have your feelings. Whatever they are, this board is here to support you through them!
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"I came on here looking for help/support for my friend who has just been dx with bone mets......she's in denial & won't post on here..........but no response at all!"
Happygran,
I know others have responded to your earlier posts. Please remember, that like your friend, we are women who are actively dealing with stage IV bc. We post here voluntarily as we ourselves deal with surgery, treatments, side effects, pain etc., usually balancing this against the usual demands of life. I am not lecturing or chiding but just hoping you can understand why you may not get the response you seek as quickly as you may want it. Additionally, there is a caregivers and friends forum you might want to check out. Who knows, you may find someone in a similar position. Wishing the best for you and your friend.
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Hello everyone,
Tartie_pants I'm so sorry to hear of all you're going through. I would agree with NineTwelve in saying you're not being whiney or ungrateful, those are your feelings and you are entitled to them. I hope you can find some comfort here and all the best for you and your Mom.
Happygran, I hope your friend is getting all the appropriate treatment she needs. As far as doing a biopsy of the mets mine were never biopsied either. My ooncologist said they get a lot of false positives and there are some risks depending on the area. I hope this helps and wish your friend the very best.
A belated Happy Thanksgiving to all! I hope you all enjoyed a happy and peaceful holiday. I personally enjoy feeling like a stuffed turkey when all is said and done
I lost a friend to cancer on Tuesday, it was her birthday. Still feeling quite emotional over it. She was 56 and had a very rare skin cancer called Merkel Cell Carcinoma. She was so positive in light of such a grim diagnosis and smiled right to the end. She has given me strength and courage to face my illness.
Hugs to all,
Annie
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Annie - so sorry for your loss.
Tartie - sorry you're having such a rough time; my heart goes out to you.
Happygran - I've replied to your posts at least twice here and once in another discussion thread. I may not have responded to your latest one, but as Caryn says, we are dealing with our own issues. I've been working about 70 hours a week for the last couple of months, dealing with some new pain, chronically tired, so at least in my mind, it's amazing I post anything at all. Don't mean to be bitchy, but ....you have gotten responses - you may need to just scroll back a few pages. Sorry if you don't feel supported enough, but we are her voluntarily and are doing our best to support one another while still carrying on with our lives and dealing with this crap disease.
NineTwelve - I totally hear you on the survivor guilt/not sick enough thing. I think part of it comes from people telling me I don't look sick - almost like they don't believe me. And also from reading posts from others going through so much more than I am, especially the younger women (like in their 30s) with small kids who are dealing with this diagnosis, chemo, etc. But I do try to remember that everything happens for a reason and there must be a reason that I'm not facing those challenges.
Jojo and SLgarcia, hope they get your pain sorted soon. Tracey - glad the port placement went well.
Well, we don't have Thanksgiving here in NZ, so no Black Friday shopping for us. Which is probably good given my recent spending habits. Been checking out patio furniture given that the house we're in now has four decks/patios. And a sun room.
Wishing everyone a good weekend!
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I'm sorry, I do realise that you're dealing with your own problems......and for that I'm sorry....... but here's a newbie who's totally lost!
I'm just so worried about my friend (well, she's a relative)..........I think she was given a 'raw deal'......she was treated for arthritis for 18 months (is this normal or should her doctor have referred her for tests knowing her history, should she have a biopsy or is it safe to assume it's the same).........now they're saying that her hip could break at any moment and she needs to be treated by only one of 3 people in the UK..............she's had a whirlwind of tests/scans this past week.........of course, it's worrying in case of spread......but she's still in denial........doesn't understand what's happened to her bones, and why her calcium levels are high!
I was dx over 6 years ago but was googling all the time.........she just took the medication, thought she was over it (like flu) and got on with her life...........I wonder some times, who had the right attitude!
I'm sorry if I caused some upset...........I'm just concerned.....................
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Annie - So sorry for your loss. My condolences to you and your friend's family.Linda
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Chrissyb, thank u for clarifying what an osseous reaction is. Google didn't tell me much.
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LindaE54, I wonder if I already reached my rads limit. I had 13 rounds so I wouldn't think so. But I was never told it was a future option. If I end up talking to my rad doc I will let u know what he says
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Annie: I'm very sorry for the loss of your friend. It's never easy, and my heart breaks for all you must be feeling. I had never heard of Merle cell until my brother in law was diagnosed with it last year. He was so fortunate to dance with NED for 9 months, before a progression was found this October. His doctors referred him to the specialists in Seattle this week and he was able to get in a study starting next week. This cancer has such a grim prognosis, and we are praying he responds well to the unusual study they have planned. He will be infused every two weeks with something to strengthen his immune system to see if they can "teach" his immune system to fight off the cancer without additional chemo. Interesting prospect that has been getting good results, so maybe this will eventually parlay into a gentler treatment for BC as well.
As for the spending spree....count me in! I'm not one for buying "things" but I am all about experiences! When I got the bad news a few weeks ago I told my husband I want to take a big trip this coming year while I am still feeling completely healthy. We were leaning towards a week in South Africa, but I think we decided to stay stateside so we can afford to take our kids along with us. They are 22 and 18, so traveling with 4 adults puts flying overseas out of reach financially. So DH and I are going on a short cruise in January, taking the kids on a 10 day California trip in May and then DH and I are taking a week long cruise from Puerto Rico in October to celebrate our 25th wedding anniversary. I'm going to live while I'm living!!
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Annie,
My condolences on the loss of your friend. Loss is never easy, especially when we ourselves are walking similar paths.
Happygran,
If your relative had previously been dx'ed with bc, I think arthritic like pain should have merited a scan or closer look, but I'm not a doctor. Right now, that's water under the bridge and can't be undone. I hope she gets appropriate tx going forward, but, IMO, she has got to move past denial because she can't be a passive participant in her own tx.
DianneNC,
(And dunesleeper) I have not shopped for myself, a lot, though I did expand my vintage mesh handbag collection. They are beautiful and I decided I wanted more beauty in my life. Often, if I do buy things, I get rid of something else because I'm becoming clutter averse. I do buy lots of things for my sweet granddaughter and treat my daughters to things more often. Travel, that is my love. I have been all over (former Peace Corp volunteer, ex-Pan Am flight attendant), but there's still much to see. I love cruises. I spent two weeks cruising in New Zealand and Australia last year as well as a 7 day California Coastal. I have an Alaska cruise planned for this coming June. I'm still working and earning a public school teachers salary, so cruising is an excellent value and a great wayfor me to travel.
Tartie,
Ah,,sorry that you do have mets. I really was hoping you had dcis, still. Yes, we all live with that uncertainty. I am in my 4th year of NED. Although I don't dwell on it, it does feel like the clock is ticking down to the time when I have progression. Staying busy has really helped me.
Take care everyone,
Caryn
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I know what you mean dunsleeper, I am not just out of treatment in fact I'm Stage IV and recently came into some money and me and daughter have been going shopping almost every single day! Last night during our Thanks giving meal I silently became nostalgic remembering the times when my daughter was little and I did not have enough money for food let alone toys, now I can provide a little more for my her and my grandson. I feel like regardless of how much time I have left on this earth I can at least leave them something to remember me by.
Aurora
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I have a question about tumor makers. My onc never ran them as part of my regular follow up during the blissful time I thought I was "done" with cancer. He deemed them too unreliable.
Now that I have a recurrence, he ordered the markers along with loads of other blood work, and my number came back at 22! Guess, he was right about the unreliability factor, but 22 seems low when a biopsy clearly indicates metastatic cancer.
Any input from others regarding markers, or should I just disregard this particular test??
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Dianne,
For many, tumor markers are unreliable. Doctors are not in agreement over their value for this reason and some doctors never use them at all (including mine). On the other hand, they are a valuable barometer for some. What does your mo have to say?
Caryn
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Dianne,My breast tumour markers were within normal range at dx (21 and now 11). My onc says that it is an indication of response to tx but is only 1 part of the equation and is not 100% reliable. It is just one tool along with other quarterly exams.
Linda
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That sounds reasonable. So as I said, while some mo's don't do tumor markers at all, sounds like your imo is using it as one of several tools.
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my gosh I don't know who said what now. First, Annie, I am terribly sorry for your loss. That is so much to deal with and I hope you will be surrounded by people to help you through this. Terre, why don't US recipes work down under? Is it true water flushes down the drain in a different direction? LOL. Dee, Caryn, and others, thanks for your replies about my spending. I never had good jewelry, and I grow tired of the cheap stuff turning a dark color in response to my skin. So I bought a few small things. No jewels, just gold and white gold. Low to mid grade. I think I'm getting the cedar tree next month. I passed up a LOT of stuff today during the Black Friday sales. I nearly bought a handbag, but if I can't get rid of something I'm not buying something new. My size is all over the place, so only thrift stores for me
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I never owned a lot of jewelry, but most of what I own is gold. I do have fun costume jewelry pieces and like those too, especially for trendier pieces. I inherited all of my moms and my grandmothers jewelry last year. It felt weird, but my sister is deceased and my Dad wanted me to have it. I asked my SIL, who is wonderful, if she wanted some things and gave her a few pieces. I do wear some of it but really enjoy the sentimental value. I guess my own daughters will have it allone day. Since we can't take it with us, as they say, may as well enjoy!
Caryn
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