2 year all-clear, 2 year all-fear.
InkPetal
Member Posts: 499 ✭
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?
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Comments
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Hi @InkPetal Do they really expect us not to look? Ha, how stupid if they really believe that. I look as soon as I get into the privacy of my car.
Please feel free to complain away. Honestly, we get it so let us support you please. Sometimes just knowing someone else understands and talks it through makes all the difference. Sending a huge hug your way2 -
Hi @InkPetal I am very sorry to hear about all the issues you are dealing with on a day to day basis that really highlight the ongoing relentless and for some women, the very troublesome long-term side effects of treatment. Sometimes referred to as managing survivorship,.i.e. the period after hospital-based treatment ends. I think a category for 'life after' is a great idea and we could certainly develop it. What would you and others like to call this category? Or is 'life after' what you would like it to be named. Thoughts?5
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Hi Bec.
We all look at the bloody things. I sneak peaks around peoples' shoulders, stomp behind counters and demand to see the screen and relentlessly shred any sealed envelopes I'm given and devour the contents in the car enroute to the next appointment. I'm not sure it's a good idea, but I want to seeing for myself. I've also got enough medical knowledge to be dangerous to either myself or those who want to fob me off.
The pain thing sucks. I hate it. I've lived a wide, wild and wicked life; collecting an impressive list of injuries on the way but I'm finding the relentless pain and fatigue since my last cancer treatment really discouraging. Discouraging. Isn't that a lady like way of saying it's doing my fucking head in.
Get back in here with us chook. Your sense of humour is always welcome and, as becoming more and more apparent, we don't all just get better.
Good luck in the next couple of days. Marg XX8 -
@InkPetal I agree with Marg, get back in here and talk. I completely agree, Im 3yrs post 2nd diagnosis and really?? my quality of life has diminished savagely!!! and you cannot talk to anyone about it, they don't get it or figure you're all clear you should be fine. The Oncs dont want to know about the 'after treatment and survivorship at all!!
After doing my head in and being ear bashed over keep your weight down eat well exercise blah blah...I researched Aromasin and it affects the Lipoprotein lipase, meaning its a steroid and you can NOT lose weight whilst on it. That'd be nice to know?? Cruel really lol. I asked to come off but its do so at your own risk lol. I too am in constant pain that never eases and have to work full time, no choice
people have no idea how hard it is for someone been down this road to resume a life...no clue. So share away...
When do you see the Specialist for the results?? Let us know how you go.
Hugs M x5 -
Some suggestions to get the ball rolling:
Survivorship Day By Day
After Active Treatment
So Now What?
And Then...
Life After Treatment
Treatment's Over, Now What?
What Happens Next
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Hi Bec @inkpetal lovely to see you here again! Been awhile since I noticed you on the forum. Hope you're managing better with your studies.
Yeah it's a s...tfest but be assured you don't have it all by yourself. We get it! I sure do!
Hope you're mulling over the post from @riki_bcna obviously happy for your suggestion with a little more input to become a reality
Take care1 -
"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."
This is so interesting @InkPetal, what your doctor told you about tiredness and cancer survivors. I have never heard that before.
You are describing me with that tiredness list. I know our energy levels drop as we get older but geeze, this is a whole other level and I'm too young to be this tired I reckon!
Ditto the pain. Every bag I use has a tray of Panadol Osteo tucked in it. My joint pain has now extended into my hips and elbows.
I remember reading last year @kezmusc's description of negotiating a couple of small steps after getting out of bed in the morning. I couldn't get how it could be so difficult. I get it now.
I'm persisting with Letrozole, I'm determined, but gosh it's hard. My quality of life is diminished and disappointing. It's impossible for people to understand, other than those who've been, or are there. Please join us more often. It's good to vent with those who get it. Big hug, K xox2 -
Yeah, we All peek, @InkPetal .... shame they don’t include the reports as well tho! All the best for your results.... once again the waiting sucks. The pain and inconvenience sucks .... it all sucks!
Vent away!!
The Health Professionals just don’t get it, do they? What this shitty disease does to us physically and mentally. I tell them to read Liz O’riordan’s blog ... a BC surgeon who got BC and recurrence, so has been thru the mill too.
http://liz.oriordan.co.uk/
@kmakm .... I like “So Now What ...”
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Oh I would be peeking too.
I'm always bloody tired. I'm so sick of being tired. I can do an 8 hour work day but need a nap when I'm home do I have enough energy for tea. I struggle with regular exercise during work week as I'm so bloody tired. And for me...it doesn't ever stop.
I'm so concerned about being tired I recently have had bloods to check I wasn't anemic...but no.
I've now got bilateral shoulder pain which is getting me down and despite ultrasounds etc. I still fear its bloody mets an not bursitis. This particularly worries me in the middle of the night when I can't sleep of course.
I'm struggling to keep weight off...which doesn't help with tirednes.
But on we go. Survivorship is bloody hard. I'm praying it's just depression or a slump which will pass eventually . I bloody hope so.
2 years for me in August last year since chemo endeded. 2 years last month tbat targeted therapy ended. But AI continues.2 -
I never imagined anyone didn't look at their results - of anything! It's about me, who else gets to see it is actually my call as much as anyone else's. I'm one of the lucky (annoying/irritating/ whatever) ones who didn't get tired or fatigued, during treatment or after. Like anyone, I can get tired, but it's caused by 12 hour days or bad sleep, and the latter preceded cancer by decades. I don't know if telling me beforehand about having an irregular heart beat or hobbit feet (that's what they feel like, they look quite OK) would have helped. I doubt it. I am just perpetually grateful I have missed (so far) the chronic pain option. Best wishes to you all.6
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Thank you everyone for sharing. I'm 2.5 years since finishing treatment and never thought I would be so tired post treatment. I also am grateful I don't have chronic pain that is not manageable with paracetamol. Hugs to all xx3
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Well hello beautiful....
I had this posted onto my facebook page by a friend this morning ....
https://www.refinery29.com/en-us/2017/10/176194/life-after-breast-cancer-survivor-story
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@Marianne_BCNA
@Giovanna_BCNALadies I am wondering the same thing we need somewhere not just the general discussion board for this 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? there are quite a few ladies who are refraining for saying how they are going after treatment....2
