Always in the back of your mind
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Exactly--it doesn't ever seem to end. My dermatologist removed a lump from my arm, this isn't a melanoma (this time, yay!) but I'm still waiting on the biopsy. Even though I know it's nothing, there's still that anxiety while I wait for the results. I HATE that.
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For me it's easiest to say "I was diagnosed with breast cancer early this year." If they want to know more, they can ask. That way, though, I can dodge all the have/had issues mentioned.
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It's a freakin' epidemic!!!!!! I may never be able to move beyond cancer!! My husband was just diagnosed with primary lung (small cell carcinoma) the meanest and nastiest cancer you can get! He so far has mets to his liver, adrenal glands. Think his pancreas was having a separate issue (pancreatitis) but MRI showed some spots around the edges. A nodule on one kidney indeterminate. Having a PET scan next week. Still waiting for head CT. Praying no brain mets yet!!! As we know chemo can't break thru the blood barrier there. He did have a head CT in July after a head injury and nothing seen then----so here's hoping no brain mets and he can get going on chemo in 2 weeks and knock this bitch down and buy him some more time.
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I feel all of you ladies to my core. This forum and other survivors have been my saving grace! After 11 months on Tamoxifen with no visible side effects, and feeling decent about that, I had abnormal bleeding (I'm premenopausal and had spotting in between periods) and had to stop taking it 2 weeks ago. As you probably know, one major SE is endometrial cancer. So 3 visits later - to GYN, ultrasound, then endometrial biopsy - I learned (THANKFULLY) that all is benign but over these past 2 weeks I (and hubby too) was RIGHT BACK there all over again. I didn't really think rationally that it was anything, but I NEVER expected the BC either. Went out and got myself a bottle of wine after getting the call saying that I had to go for a biopsy. I was so frustrated, after a year of doing everything "right" then this effing drug could give me a DIFFERENT kind of cancer? Like seriously - why the hell am I depriving myself?? And now I'm seriously wondering whether I should keep taking Tamoxifen or try and get on something else. I'm sure my onc will think I'm crazy given the lack of SE I've had thus far.
The anxiety is never ending and so, so hard to manage. It's there underlying everything even when I'm not consciously thinking about it. I'm trying to be MINDFUL and MEDITATE and that is a work in progress. Gratitude, holding my husband tight for as long as he'll let me, eating the goddamn sandwich and drinking the goddamn wine and enjoying the goddamn pudding - all of which I've been doing more of and feeling OK about it.
I've been seeing a reiki practitioner on a weekly basis for about the past 6 weeks. I was depressed and hubby said I should go to therapy, but I decided to do this instead and as LUCK would have it, my reiki guru turned out to be a 20 year BC survivor! She has been truly a GIFT... she was exactly what I needed, at exactly the right time. She is my therapist on many levels and I am so very grateful that she came into my life.
Gotta keep gratitude for the good things/people in our lives front of mind!
Round of chocolate martinis all around please!!
Hugs,
~Michelle0 -
Just FYI, ya'll - Last night I had a martini, a petite filet, AND pumpkin cheesecake! (Steak and cheesecake shared with hubby; martini all mine!) Cheers!
- Anne
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Beep7 I hope it turns out to be nothing for your daughter. I hate this for all our daughters!
Ctmbsikia, I am so sorry that you are dealing with all this. I have no words. Just a hug.
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Hi everyone you're all amazing on here so honest. I would just like a rant please. I'm active in a UK forum but don't feel I can moan on there as I've had so much support and some ladies sadly now have progression and I'm lucky in doing well three years on no recurrence.
But I'm really struggling. I'm just so sad and sad that I'm sad. I'm truly blessed lovely husband and family but this diagnosis hit me like a hammer in 2016 and I can't seem to move on. I had such a happy life and with no family history and pretty good health it came out of the blue .Large aggressive in nodes but thankfully no other spread I'm so very grateful but I miss my old life so so much I've worried for three years about recurrence and I try to smile and appreciate every day but it's so emotionally tiring.
I just need to let this out I feel so much fear sadness grief and anger and no-one to express it to. My husband is wonderful he does everything for me and it hurts him I'm so sad and he can't change it for me. I need to try harder thanks for listening .
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Manc —so sorry, and so glad you have this safe place to let it out. Talk to your primary doc about depression? I try to give each part of me enough space. Time to let my anxiety and fear out, and give it honest ‘outing.’ In safe place, (like this one), and with safe people (DH, sister, etc.)As well as try to live my life.
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Well, this thread really has helped. Thank you all. I am scheduled for my mammogram Monday November 11. My radiation treatment ended around mother's day 2017. I feel pretty good but right before I was diagnosed, I was feeling just fine so that isn't at all reassuring. The way it seemed to sneak up on me makes me feel that that's what it just might do again. I agree with the idea expressed here that often when talking to others about our ordeal, we are put in the position of reassuring them. God forbid we make a joke (though those awful jokes often got me through) I don't like the term "survivor" I appreciate the effort of support from others but honestly I hate the pink ribbons. The question over had, have, having is a great one. Sometimes I say HAD but am not quite satisfied with that. I suppose it depends on who I am talking to and how honest I feel I can be. Sometimes I just say I was treated for breast cancer in 2016 to 2017. Whatever the case, mammograms are frightening as hell! I have a very involved husband but I am afraid his PTSD seems almost worse than mine. I appreciate his concern but sometimes it enrages me. There is no way out of this. Sometimes when I read the stories of others that have so far had a harder time than me, I feel afraid of their story and guilty and ashamed of my own fear. The monster in the back seat is a great analogy. I think the one thing we might need to all do is just et him sit there. That doesn't mean we have to be preoccupied with him/her, just know the monster is there and try not to resist him/her. Thinking positive is fine as long as it doesn't mean blaming oneself when we don't. I have to admit here too that I drink my wine and while I eat healthy, I eat what I want sometimes without much thought. (I do avoid some of those smoked meats, though) I have done so all of my life and the cancer came. I could go on but just noticed battery low sign so thanks again all!
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I say I had a tumor. Interestingly, in thinking back, I have never called it my tumor but have either called it, "it" , or the tumor. Guess I have not wanted to identify or claim ownership!
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Manc, yes, sorrow. That lingers with me too. If you want to go all Buddhist you can chant "life is suffering", rule number one of Buddhism. For me I find "life is housework" to be more accurate but housework, suffering, same sort of thing. Either way, going forward reminds me of the massive gumboots I put on to do chores. They weigh a ton! Each step is taken in familiar surroundings, a landscape that looks the same, I am doing the same motions as before, but these bloody 10 pound gumboots make each step a struggle. That is what cancer is like for me, it has added a bitter burden, a weight of woe, that I seem to drag behind me with every step. Knowing we are mortal and slated for death is a burden. I think sorrow is a perfectly sane response to this knowledge. I try to ignore it, but flashes of it catch my eye, it is only just behind me, sitting there, like a stunned idiot. Not that far away. Hard to ignore.
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Glad to see this thread resonating with more people. Let me tell you all the feelings I was recently having have been legitimized in the last week. I was bitter realizing I should probably start embracing death. No one gets out alive even though I am fine and have a very good prognosis. Then, my hubby just gets diagnosed with lung cancer. It's serious. I asked my daughter and son to just let him have his feelings and we need to validate them because there is no right or wrong with how you react after receiving that news. We can't start hovering over him like a child, start doing every little thing for him, make plans and decisions FOR him. No, he's still alive and we need to support and help him when he needs our help. Otherwise, you can end up on the bad side of someone and that's not a healthy place to be. Especially if you live with that person!!
Through all of this last week, I can tell you my fears and feelings about cancer have remained unchanged. It scares the beejeebees out of me. I'm ready to face whatever comes. For both of us, as positively as I can. I threw the bitterness out the window for now.
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I hate that your husband has lung cancer, HATE it.
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I've been trying to come up with words about your husband's diagnosis, ctmbsikia, but nothing is coming out right. I can't even imagine how you and your family are dealing with it on top of everything else. So horrifically unfair.
But on another note, I think that the sadness we are feeling for our lives before is actually a kind of grief. We're mourning our old lives because we aren't the same people anymore. And those people aren't coming back. Maybe we should try looking at it that way, throw a New Orleans style wake for our old selves with the parade, the brass band and the second line, then move on with the new. Can't hurt, right?
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He cried his eyes out he told me. Then, he said I lived my life, I lived it the way I wanted to (smoking and drinking) and this is what happens. Of course he still wants to live. I was glad he didn't play the blame game for too long. A few days maybe. I mean these so called carcinogenic substances are 100% legal. Lots of folks still buying them. Also, this cancer wasn't there in a low dose lung scan in August. It showed as pneumonia. August 2018 had a chest X ray (not that reliable) but was clear. The beast just shows up when it wants to, and in my opinion, no matter what you do, good clean living, or not so good.
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Ctmb, that is bloody awful news and you're right. Cancer is going to do what its' going to do. Children get it! I am so sorry for you both.
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Ctmb I am truly sorry your husband received this diagnosis. If it is possible, I hate lung cancer even more than breast cancer as I lost both my parents to the disease, 20 years apart from each other. God bless your family.
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So this isn't a steam room topic, but definitely a WTF topic.
Four years ago, I got the shingles vaccine—not the new and improved one that requires two doses but the one that was available in 2015. In less than a day, the injection site on my left arm had a big angry welt and it hurt. While the redness and pain diminished, the welt turned into a visible lump that bothered me. It didn't hurt/hurt, but it was annoying and I hated how it felt and looked.
In September when I saw my dermatologist for my biannual follow up for melanoma, he commented on it and offered to remove it. I said heck yes, so on October 24, he excised it and sent it off for biopsy. He was very confident it was a dermatofibroma, but as he said, it's always better to get that diagnosis confirmed by pathology.
Fortunately he did send it for analysis because it's not a dermatofibroma but an atypical leiomyoma and quite rare. In fact, Dr. Google had very few resources for me. I found some good information here (but you have to create a free account to read), and also here. But there's not a lot out there.
The pathology report also said more tissue needs to come out because what was taken doesn't have clean margins. So joy of joys, I get to have another chunk removed from my left arm. Which is my breast cancer arm.
And I cannot get the pathology report from them and I want it. I want to read the report for myself and see how subcutaneous this thing is likely to be.
PS this isn't a fibroid, and I never had fibroids in my uterus anyway.
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Edj that is bizarre and horrible! I am stupidly unclear about this. My 15 second google search of atypical leiomyoma says they are benign tumours. If it is benign, why the concern to go in and carve out even more? I apologize if I am being dumb as a post. Either way, this is shitty news.
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Yeah they're so rare outside the uterus that not much is out there. There's a malignant form of these (leiomyosarcoma) and what's even less clear is how you get from the leiomyoma to leiomyosarcoma. And because cancer is that back seat driver, and I've had two different cancers already, well I get clenched.
The nurse told me the pathologist was very clear that we need clear margins. So I really-o truly-o want to know more and that requires the pathology report.
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Geez ed. They'll test the tissue coming out this time as well? Let us know how that goes. Good luck. I can imagine this is a little scary for you when you're looking to learn about something that's rare and there's not much out there.
I was driving to work today and noticed the gas light is on. I went from car to house twice before I could get going this morning. In 20 minutes I'm meeting hubby at our primary Dr.s for a visit and getting flu shots. Then I have to pick up paperwork from MO's office. Our daughter is filing for FMLA. I guess better to have it in place before it's needed rather than waiting. She did this all on her own. I haven't eaten yet, just coffee so my stomach is making noise and I've been to the ladies room twice already. We had a PET scan scheduled for tomorrow but the machine broke and now have to go to another location (just under 1 hr. drive) next Friday. Chemo should start on Mon. the 18th -I hope so. I can't keep this pace up. I cancelled a follow up appt. he had with GI Dr. from hospital. What's he going do? I have stuff coming up in Dec. (DEXA and lung screening) AND have mammo/MRI orders that aren't schedule yet. I'm thinking I should just do those in Dec. as well as our out of pocket is definitely been met for the year. I see MO in Dec but maybe can schedule BS follow up in January. I can read my own results anyway. Trying not to be stressed and hoping my instincts are right. Just get all your shit done so when chemo works for hubby we can have a few weeks down time in January!
I did make exercise class yesterday. I need them, they make me feel good even when you're sore, you know it's a good sore.
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Well I got the path report. I'm not freaking out but I'm sure not blase about this:
The tumor stains strongly with desmin and SMA. The tumor shows an increase in the number of nuclei and extends into the subcutaneous fat with focal deep margin involvement which are are features of concern and are unusual for typical banal leiomyomas. Complete re-excision of this lesion is recommended for further examination.
Basically I have something quite rare (one study cited just six examples in the literature, again because of the location) AND this thing has features of concern and are unusual for this already rare thing.
My cells need to calm the f*ck down.
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Edj, AGH! I'd be flipping my shit. Get that thing OUT of there, as I am sure you are planning and so is your doc, from the sounds of things. We all want to be special, but NOT like this! I am sorry for the stress and worry and hoping they deal with this pronto.
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Edj...Good Grief...Ditto what Runor said !!!
Had insomnia last night ..and read this whole thread ...it's my new favourite ! I can relate to everyone's posts ! I was 5 years out this last August and still always on this site ..coz it's ALWAYS in the back of my mind !!! ☹️
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Thank you for sharing. I feel the same way. Every pain or weird sensation is now seen through the lens of cancer. I was stage IIIC and went through treatment 2017-18. NEDS May 2018 and since then all I think about is recurrence. I don't know how to shut it off.
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Oh Edj sorry to hear you have been thrown this curve ball, I hope all the panic will end up being for nothing, and will be totally benign.
Manc... I'm glad you are able to let out your feelings here, I understand as much as one can who only was diagnosed a year ago, but I also miss my old life.
Runor you must be a writer, you word things so beautifully, like poetry... I'm feeling those boots you're wearing!
ctmbsikia, I'm very sorry to hear of your husband's diagnosis. There seem to be so many people getting lung cancer these days, or maybe it's just by chance, two of my friends have got lung cancer within the last year.
As for me, I have my first yearly mammogram and ultrasound in a couple of days time, since I was diagnosed last November. Shaking in my 'boots', literally and metaphorically.0 -
Worry ..in your pocket for your yearly scans ! Hoping everything goes well !!!..It's a nerve -racking time for all of us !
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I really don't think I will come out of this unscathed. I am strong but this morning I want to do like the old song says, "Gonna find me, a hole in the wall, I'm gonna crawl inside and die" My stress level is going off the charts. Even if I reached out to talk to someone about it, just when will I do it? There's no time. I don't want to make for time for one more thing. I have enough to do and being a former caregiver to both my mother and mother in-law I realize how important it is to take care of yourself too.
Hubby's sister has called again. I guess I should answer her today. No use having a brother and sister not speaking to one another. Life's too short. I won't say too much. Will just let her know I truly feel her brother will see and speak to her again someday. Hopefully sooner rather than later, but it is whatever he wants. Who knows we may need her help? A saga to be continued. My boundaries are still up though. She can be a real whack job.
Thanks you lovely ladies for letting me get this out so I can now go and conquer the day!
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ctmbslkla, so glad you have this outlet during this time of stress and overload. Please continue to remember to take care of yourself; you know full well this is not a "here today, gone tomorrow" situation but one which may become more manageable over time. We're here for you--scream as loudly as you want!
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Had an MRI on left shoulder yesterday, see the sports med doc Friday for results. Wasn't really worried until after the test and now have to wait several days. Trying to keep busy, hoping that my instinct is correct that my shoulder issues are really just a continuation of a lifelong battle with tendons and joints.
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