Forum Discussion
2 year all-clear, 2 year all-fear.
I've just had my second year check-up scans. It's always going to be so stressful.
I've had a range of worrying new symptoms pop up over the last couple of months while on my Tamoxifen break, so I'm worried something was there and has now domino down my left arm lymph nodes.
Taking a look at my scans, my layman eyes don't see a disaster. There are areas in the ultra that look like masses although to my memory they don't seem to have the blood flow activity to indicate tumors, however on the mammogram they radiate the margins of my crash site (... that's what I call my scar tissue, haha). And as much as I'd like to think hey, it's just age, it's just calcification, there's nothing like it in my other breast to establish that.
I know, I know, the cardinal rule of check-up scans is not to look at them before your consultation but as if have scans of inside my body in my possession and not look? Ha!
I never shook the lethargy. My doctor told me that it's actually a normal thing for cancer survivors to be chronically tired. There are no solutions; work while tired, exercise while tired, eat while tired, struggle to sleep, wake up tired, repeat. And everything always hurts. It's just my normal now to need painkillers to get through the day. 2 years on and my radiotherapy pain still hasn't gone away - and it's not just that it's not gone away, it hasn't "settled" the way I was hoping. It might be that during healing I just got lucky and clumps of nerves got together to make particular movements painful. I hurt every day and I needed to complain about it. It's been so long of waking up with pain and no energy and I don't complain anywhere. Sorry BCNA. You get my worst side.
I've refrained from posting quite a lot and just kept to the activity threads because I feel that my particular forum needs are a form of clutter for those in active treatment. A follow-up/aftercare category/life after category would be nice?
I've had a range of worrying new symptoms pop up over the last couple of months while on my Tamoxifen break, so I'm worried something was there and has now domino down my left arm lymph nodes.
Taking a look at my scans, my layman eyes don't see a disaster. There are areas in the ultra that look like masses although to my memory they don't seem to have the blood flow activity to indicate tumors, however on the mammogram they radiate the margins of my crash site (... that's what I call my scar tissue, haha). And as much as I'd like to think hey, it's just age, it's just calcification, there's nothing like it in my other breast to establish that.
I know, I know, the cardinal rule of check-up scans is not to look at them before your consultation but as if have scans of inside my body in my possession and not look? Ha!
I never shook the lethargy. My doctor told me that it's actually a normal thing for cancer survivors to be chronically tired. There are no solutions; work while tired, exercise while tired, eat while tired, struggle to sleep, wake up tired, repeat. And everything always hurts. It's just my normal now to need painkillers to get through the day. 2 years on and my radiotherapy pain still hasn't gone away - and it's not just that it's not gone away, it hasn't "settled" the way I was hoping. It might be that during healing I just got lucky and clumps of nerves got together to make particular movements painful. I hurt every day and I needed to complain about it. It's been so long of waking up with pain and no energy and I don't complain anywhere. Sorry BCNA. You get my worst side.
I've refrained from posting quite a lot and just kept to the activity threads because I feel that my particular forum needs are a form of clutter for those in active treatment. A follow-up/aftercare category/life after category would be nice?
67 Replies
- @InkPetal I did take leave for awhile too with my Dad passing away, but I came back recently. All Ive ever wanted is to help others coming through because I never had the support through 2 diagnosis.
Im so proud and happy for you, such wonderful news, now you get back in there and do some wonderful things with this beautiful life you have. Get creative again ;) xxx - @melclarity You're leaving us? I know your honesty and research insights will be sorely missed. Thank you for sharing so much of yourself here and I hope your future is bright and beautiful. :heart:
- @InkPetal congratulations on you 2 year clear status ! May they always be clear . The struggle is real even if we look "normal" to me it's an intangible thing , I burst into tears at the drop of a hat . I'm not going back to my job as its too stressful & no opportunity to have a break during the day if i'm weary (all the time ) .
F**k cancer !!!! - @melclarity
Take care of you
Hugs x - @inkpetal what a wonderful heartfelt response! Hey won't be long and that mojo will be back for your studies et cetera You've come a long way!
Take care
Hugs xx - I think the next time I see my onc I'll ask her if there is discussion around telling patients about long term side effects of treatment & hormone therapy. Has it been studied? Would being told about the possibility of living with permanent pain/exhaustion when you're prescribed chemo/hormone therapy for 10 years actually change anyone's mind before they do chemo or take the pills? I'd say a small number, but the overwhelming majority would take the doctor's advice and go ahead with treatment.
I remember my first onc casually referring to "the bone pain" I'd be having when we talking about something else. I was startled and queried it. Now I wonder if it wasn't deliberate, that she was introducing it early to prepare me. Hmmm... - @InkPetal I totally understand what you said and I actually dont blame you...I think for me after 8 yrs and 2 diagnosis and 3yrs post chemo...I too am a little cynical about my treatment. They are not forthcoming about the effects at all from treatment or the AI. Everyone at work sees me and thinks I am 'normal' as physical able as they are. A new male ES was brought into my Foundation team, lasted 3 days!!! he had similar experience and skills as myself coming from Special Ed. He decided he didnt want to be in there...my upset it...NOBODY has a clue what I go through physically to get up each day, get ready and go to work to deal with challenging behaviours in children. I come home and have to lay down for 30mins to rest my body. When you slightly mention to the Oncologist any of it you are ignored and worst still anyone else doesnt get it either, because you should be over it!!! I will do my next 2 years seeing my Onc only due to recurrence but then think I'll give it all the flick. I live on panadol osteo to get through a day...and like you...am sick of just trying to get through a day let alone a year of full time work. People can fluff around the positivity all they like...Im a POSITIVE person...but really?? they have a long way to go.
Take care of you sweet, you got this and a long life to live! Do what you feel you need to but just live a beautiful life! I had a break from the Forum after my Dad and sole surviving parent passed away, after being back a little while I've decided to leave for a few reasons.
Be kind to you and here's to the Specialists getting real and honest with people. Hugs M x - Hooray! Here's to the next several dozen clear reports!
- You'll all be happy to know that I recieved my 2 year all-clear!And I still can't wait to get my stupid tits off, this stress roller-coaster and worrying one tiny ache means I'm doomed just isn't worth it to me. /hurrumph!/Sorry it's taken so long to get back, I wanted to respond to everyone.@Blossom1961 @Zoffiel @arpie I find it so funny that everyone looks! I thought I was such a sneaky badass like a kid stealing cookies. Yes, it would be so good if there were a report in there! It really does make such a difference to hear in this thread that people are having the same experiences and feelings as I am.@melclarity My gosh, the amount of stuff nobody bothers to tell you. All those "survivor" pictures of happy smiling beautiful people ... I just can't relate.And yes, exactly. I stopped seeing my oncologist. Apart from my only having work the only day they're available to see me, all that ever happened was their saying variants of "That's a shame" and "Poor thing" and shuffling me out of the building.Tamoxifen had given me lethargy and migraines, severe (physiotherapy requiring) back pain, joint swelling, weight gain, and it was just 'Poor thing, that's a shame'. Try managing the symptoms maybe? I just see my GP now because they seem to give a damn. After coming off Tamoxifen (in order to stop my clot risk anxiety when I went for my first big holiday since c) I then find that hey, while yeah the forgetfulness is left over from chemotherapy, the heavy brain fog was mostly that drug. And you're right, nobody sees, it's like we all carry around what they're calling invisible disability.@primek I feel you so much. Every ache and pain "well that'll be cancer again won't it." Because it apparent'y isn't a known thing, my GP told me that lethargy, chronic lethargy, chronic tiredness, are all common for years after chemo. I didn't even get a hopeful hey maybe it'll be gone by next year, I guess it's just a lasting b*ch.@iserbrown Hello! Yes, as I was saying it's just - I feel like a kind of impostor. Like I should be "over it" by now, but it keeps flogging me. Studies haven't been going well, I'm not confident going into this year, but I'm going to try my best, it's all I can do. Thank you so much for remembering x@kmakm My GP is a skin cancer specialist, and have their paws in cancer research all the time, I don't know if it's new stuff or just something they learned in their studies but they were adamant it's just a fact of survivorship, that would have been nice to have literally any one of my attending team tell me even on the day of my last treatment. And yes that's absolutely my life now too, if someone needs a Panodol I reliably have a few on hand. Thank you for sharing about your mother being 33 years cancer free that is amazing and the kind of thing we all need to hear.When that lethargy really hits though it's like my legs weigh 10 extra kilos a piece and I just have to drag myself around it's so bizarre having your body just decide it's had enough for the day and going on strike like that. I only had a 3 hour shift yesterday and got backache so bad I almost had to get on the floor. Just from 3 hours of standing. Rubbish! I was on Letrozole for my IVF management, it was NOT a fun drug, it was like Tamoxifen then add nausea. I'm proud of you for sticking it out.@Afraser It actually makes me feel really good to know there are survivors out there who don't have this s*t going on for them, and that's important too because it means everyone in treatment can have the hope of coming out the other side just like that. Thank you for adding your experience with it, it's important to see how differently people's bodies respond to it all.@Cherryripe @Sister It's like a permanent fog. Every day is waking up wishing I could go back to sleep! I've honestly only had one single day that I've woken up and been 'awake' since treatment and I remember it vividly because I'd forgotten what it felt like.@pammiesyd That's awesome! I wish mine did that. Yes! I feel like my days would work better if I had a schedule that allowed a 3 hour nap after meals, hahaha!@Brenda5 One of my problems might be that I've lost all mine. It's just the way life is always going to be and it makes me miserable. Thank you so much for telling is about your sister in law, that's such excellent news to hear.@Patti_J @SoldierCrab @Afraser That was one of the topics that came up in a training session, it's a very sensitive thing to be in and around a group of people dealing with mets circumstances. We were told that if we were to invite someone with mets into a social support group of newly diagnosed people that we ask the group how they feel about it, the reasoning being that some people (you know how chaotic everything is in those first few months) just aren't equipped psychologically to deal with the very real prospect it may be a lifelong thing and lose hope for recovery. They don't mean anything by it, it's just a protection for that fragile state and why it's SO IMPORTANT to have mets support groups around.@Silba It's rough isn't it! Starting tamoxifen is the WORST SH*T. My first chemo session was better!? such severe pain, feeling like I had a permanent cold, so tired it was like dragging weights on my feet to walk I just couldn't stand it and that lasted a month... and now I've been on a break, felt much better, told them how much better I've been feeling and got a lecture about how important it is with such hugely hormone positive baddies potentially lurking that I must go back on them. And feel all of that again. I'm the biggest Grinch about the whole idea. That stuff is a nightmare. Good news is that it settles. It still sucks, but it settles.@Michele B I feel like it's 80% the Tamoxifen. I've been off it for two months and feel tired. Just tired. Not "It hurts and it's heavy and I'd rather stay here and cry that even try to get out of bed". The good news is, I know that will go away when I'm done! Congratulations on 4 years!!! Awesome!!@Blondy OMG WOW way to give yourself a heart attack! Lesson learned hahaha!
- Last august I had my first mam and ultrasound a year since the killer ones. Jumped in the car and pulked out the reports. To cut a long story short I reread the ultrasound report from the year before and had a ginormous freakout. I finally got to my gp that evening ( l was ready for the whitecoats by now) . He patiently read the report and asked when I had the scan done I said today. He showed me the date . I feltvlike id been given my life back. Now I'm going again on wednesday for 6 monthly do. I swear I wont look, I also tell lies, but I will look at the date.
