What is this? BC was all behind me
Nadi
Member Posts: 619 ✭
I have been doing really well. I mean really, really well. Diagnosed Oct 2015, surgery chemo, radiation, 12 months Herceptin all over by Dec 2016. Finally got back to work full time more than a year ago. Full steam ahead. Hot flushes - damn annoying - ever present and fluctuate in number from week to week, but so much better than before. Doing a demanding job that I love working 50 hours plus a week which I also don't mind. 32 kgs weight loss post chemo maintained. Neuropathy and osteo arthritis pain from taxol being managed. Did big OS trip which was great. Had port removed. Wasn't thinking about BC at all. It was in the past. All over. All done. Finished. So long and thanks for all the fish. Really everything was great.
Then 5-6 weeks ago I started getting tired and didn't quite feel like myself. This has since turned into fatigue. Knock-me-down-wipe-me-out-have-to-sleep-right-this-very-minute type of fatigue just like back when I was doing chemo. Dragged myself around for weeks and then was sent home from work because I literally fell asleep at my desk. Totally not the new me. Had to go on reduced work hours which is hurting my pay packet.
Blood tests show my billirubin levels are high but I am not jaundiced. Blood pressure 160/120. Stomach bloated but not firm. Still my GP thinks that it could all be nothing serious as sometimes liver function tests show weird things, my blood pressure has been on the high side in the past, and my BC was node negative, so we'll test again in 2 weeks.
Then today the cancer psychiatrist mentioned that a lot of women similar to me who are forced into menopause by chemo often report a return of the same exhaustion they felt during treatment sometimes 2 or more years after treatment. Really??? I have never heard this. I mean I knew that the hot flushes can linger or come and go for a long time, I also heard that some women never quite return back to the way they were, but I don't think I have ever heard anyone mention their fatigue had returned after they have enjoyed a long period without it.
Just wondering if this sounds right? Have others experienced a return of fatigue so long after treatment finished and after doing well for a period of time? If so, is there something that made it better or go away? I so need to get my mojo back. Any advice is appreciated.
P.S. I am really careful about what I eat (good, sensible food, low-no sugar, minimal alcohol), am maintaining good gut health with diet and a probiotic, have reasonable activity given my arthritis, and tests show good iron, Vitamin D etc etc.
Then 5-6 weeks ago I started getting tired and didn't quite feel like myself. This has since turned into fatigue. Knock-me-down-wipe-me-out-have-to-sleep-right-this-very-minute type of fatigue just like back when I was doing chemo. Dragged myself around for weeks and then was sent home from work because I literally fell asleep at my desk. Totally not the new me. Had to go on reduced work hours which is hurting my pay packet.
Blood tests show my billirubin levels are high but I am not jaundiced. Blood pressure 160/120. Stomach bloated but not firm. Still my GP thinks that it could all be nothing serious as sometimes liver function tests show weird things, my blood pressure has been on the high side in the past, and my BC was node negative, so we'll test again in 2 weeks.
Then today the cancer psychiatrist mentioned that a lot of women similar to me who are forced into menopause by chemo often report a return of the same exhaustion they felt during treatment sometimes 2 or more years after treatment. Really??? I have never heard this. I mean I knew that the hot flushes can linger or come and go for a long time, I also heard that some women never quite return back to the way they were, but I don't think I have ever heard anyone mention their fatigue had returned after they have enjoyed a long period without it.
Just wondering if this sounds right? Have others experienced a return of fatigue so long after treatment finished and after doing well for a period of time? If so, is there something that made it better or go away? I so need to get my mojo back. Any advice is appreciated.
P.S. I am really careful about what I eat (good, sensible food, low-no sugar, minimal alcohol), am maintaining good gut health with diet and a probiotic, have reasonable activity given my arthritis, and tests show good iron, Vitamin D etc etc.
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Comments
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No advice, just best wishes from me. What a bugger for the fatigue to hit you like this. Hope you get it sorted very soon.0
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@Nadi
Hi! nice to have you back on the forum but not for the reasons you mention!
Fatigue was your "Achilles heel". 50 hours plus/week - do you think that is pushing yourself too much? Maybe your body is saying hey remember me the one that has just about recovered but not totally?
Fatigue still plagues me - just when I think I am kicking goals, wham she hits again!
Post mastectomy syndrome has hit me recently as well as and it is coming up 3 years! My surgeon said that sometimes it can hit at the 4 year mark!
Our bodies certainly have been through the wringer and every now and then they want to remind us to pace ourselves accordingly.
Have you been to an Exercise Physiologist? This could help with regaining your stamina - your weight loss is wonderful!
I hope all your medical tests come up with nothing more than rest is needed, blood pressure settles somewhere near the normal range and then you can pace yourself accordingly.
Take care
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Hi @jennyss thanks for your wishes.
Hey @iserbrown Hadn't heard of post mastectomy syndrome before. I have now googled it. What a bummer for you! I really hope you get relief and it never comes back again.
Reading your reply left me feeling "Duh, silly me" everything you say makes sense and I don't know why I didn't see it before. I guess it just comes down to that I had different expectations. Prior to cancer I always pushed myself which is why I had such a hard time accepting the fatigue and need to take a step back during treatment. Since going back to work full time I got used to people saying how well I look or how well I am doing and I guess that kind of stuck in my head as the way it should be and that didn't include fatigue anymore. But yes, you are so right, our bodies have been through the wringer, and with chemopause continue to go through the wringer. Of course bouts of ongoing fatigue are understandable. What a ninny I am.
God it is so good to have a network where you can come and get a good reality check from people who truly understand. Your words and wisdom make complete sense. I should have read my earlier whingefests.
Thanks again
Nadine
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You're welcome! That's what we are here for to vent and we don't judge just help
Be proud of how far you have come. Sending you a virtual hug xo1 -
I remember l was like a steam train from diagnosis in 2012 and then one day at work l cracked it and resigned it was 2 years post diagnosis.l took 6 months of and never realised how exhausted l actualy was.l was so busy try to be normal l was actualy detrimental to myself. I temember my onco said even radiation is still in you 4 years later.but if you are still worried just tell the dr.peace of mind is always good2
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"Whingefest" - love it!3
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Make sure its not something diddly with your heart. I have SVT and a wierd uneven heart beat that drops a beat or two every minute or so. My doctor says at this stage we keep it regular with pills or I might need a pacemaker. I have never had heart troubles in my life and actually have low blood pressure but it sure attracts fatigue out of nowhere. I am shortly up for review on my Tamoxifen and we may change it to an AI pending whatever oncology thinks about this heart thing.
I was diagnosed in October 2015 too. So far NED.
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Hi Nadi,if your bilirubin levels are up then perhaps ask your gp if you need a liver ultrasound.I’ve only got to sneeze and my gp jumps.My liver ultrasound showed a fatty liver. Could high bilirubin be affecting you and making you tired?0
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How high is high? Sometimes the results can just be outside of normal but if course with our history we fear the worse. It could also be some gallstones.
My fatigue comes and goes but it is definetely linked to my sleep quality and water consumption. Both have a huge impact. I niw find sometimes I just need a week of nanna naps then I slowly start increasing my physicsl acitivity.
Hopefully all is well with your tests. I'd love to spout the "don't worry" but we all get that...that is simply not possible. I just wish you a speedy recovery and clear tests. X
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Well just couldn't get myself out of bed today so took the whole day off to just sleep. Felt normal again for a few hours in the afternoon. I've only worked 10 hours in a week. The sick leave I have built up this year is running out. Seeing Rads Onc at 9 am for 3 month check up if I can manage to drag myself to the cancer centre. Have booked my first ever session with acupuncturist to see if that helps. Honestly, I would stand in a bucket of monkey pee if I thought it would make me feel better. Have spent the last hour lying here with moderate tummy pains that are finally easing off. It's as if I have had a HUGE night out with excessive drinking, so I think something must be going on. My son is taking MTX for his severe eczema. He is immune compromised and has caught a bug so maybe I caught something off him. We're keeping an eye on his temp, if it goes up we'll be straight off to the ER. Might ask for the two check ups for the price of one deal while I'm there.
hey @Brenda5 I had a heart check a few months back with the whole 24 hr halter monitor and all was good. @adean
I totally understand the whole 'trying to be normal bit'.
@TonyaM the doc didn't comment about the high billirubin being a cause for my tiredness. She did say if I was not better in a week she wants me to have a CT scan as a precaution. I've had 11 CTs in 2 years. Not keen to have another one, so might ask for liver ultrasound first as you suggest. The last one of those I had showed fatty liver - that was before I lost 32 kgs so maybe it it a little better now.
hey Kath @primek Nanna naps at the moment are pretty much all I'm doing. Don't know how high the level was, Doc just said high. My brother has had gallstones are they hereditary? I honestly don't think this is anything like liver cancer. Just wish whatever it is to bugger off again, so life returns to normal.
Thanks ladies1 -
While gallstones cause severe tummy pain and back pain (up as far as the shoulder), I've not heard of them causing fatigue. But it is conceivable that you've just hit a wall and your body has said enough! Get it checked out and then you'll know what you're dealing with. Good luck.0
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My son is now trying Brylecreem for his excema. It seems to help. He put is on his head, forehead and torso.
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@Nadi got you in my thoughts today! Hopefully you've made it to the 3 month check up. Something is bugging you and hopefully it is a bug! It would seem when we are unwell it hits our weak point and maybe that is an explanation for fatigue on top of a bug - but as someone said on here recently, we are not Doctors, so please don't let it go for too long so that you can get to the root cause and hopefully start to improve.
Take care and hope you have energy to post again later to update us! Hugs x
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@Nadi you’ve had such great advice from the crew so far. I’m 2 years today since diagnosis hot flushes stopped July last year but the fatigue still lingers. I can go weeks and feel great then have a fatigue crash and burn moment. Keep us posted how you go with everything love. Don’t blame you for not wanting to have more scans either. Big hug. Margie. Xxx0
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@iserbrown, @onemargie, @Brenda5, @sister, @primek , @TonyaM, @jennyss
Thanks again for all your great advice and support. Mystery solved, kind of. It seems that my extreme fatigue was probably due to low Vitamin B. Doc put me on special Vit B capsules 5 days ago and I am feeling back to my old self. I never knew that low Vit B could affect people in that way. Still no further information on why my Billirubin was high, but it is back into the normal range now at the high end and my stomach has reduced in size so we are going to just watch it for a while.
Feeling so relived I have some energy back as yesterday my wonderful, beautiful father who has severe dementia had a stroke and I needed energy and my wits about me to make some hard choices about whether we intervene or not. Some hard days ahead. Guess this is really what 'life is all about'.
You ladies are amazing, thanks again for keeping me in check.
Nadine2
