Scared of bone mets and so tired of being worried
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I think our minds/bodies get into ruts and it's so hard to pull away. I think your mind/body got into a worrying rut, and that is why even though all the responses have been promising so far, your mind/body is still reacting like there's an imminent dangerous threat.
For me when I get into a mind/body rut, I have found a couple of things that - in different circumstances - have worked to help:
* drastic but positive change in circumstances that requires my intense focus and attention - moving to a new place permanently or temporarily, starting a challenging new project/trip I'm very excited about, etc. Basically maybe your brain is so used to this worrying, it won't stop until you give it something else to do that actually has a chance of competing. This is great when life circumstances align perfectly, but can be tricky or impossible to pull off given the demands of my mostly conventional adult life.
* extremely conscientious focus on the building blocks of mental health. My problem is that I can't pull this off unless I'm already part way there, but when I can, it can help. I have certain household routines, walking routines, socializing routines, sleeping routines, etc., and when I can commit to them with fidelity, it seems to help create space for my brain to feel safe again and turn itself around a bit
* change in medicine or new medicine. I have been treated on and off for depression/anxiety for a long time, and recently diagnosed ADHD in the mix. Sometimes I seem to really need the jump start in my neuro chemistry to get my brain out of its rut. It is absolutely not weak to seek psychiatric support for this hellish process you are going through. If there is something that can make your life easier, isn't it worth a try?
When I am dealing with intense rumination, I re-read the book "Loving What Is". It gives me exercises for sort of mini brain resets on worries, and it has made a huge difference in my quality of life. I first read it over 15 years ago. Since then, I have done more reading/learning, and I think it is basically an early and non-professional variation of what seems to be known as ACT - acceptance commitment therapy - today. I have since started reading some ACT books and I can see how they would be helpful in a similar way, but for me I don't have any (at least not yet) that I would personally recommend as strongly as "Loving What Is".
Anyway, this all sucks that you have to deal with it, and it sounds miserable, and sometimes life is miserable, and there's no way out but through. And I hear you that this is wearing on your every nerve and energy. And I also see that despite that, you actually ARE hanging in there and keeping going *through*, and I have hope that one way or another, your "out" is coming and you will be able be to get some mental/emotional resolution/easing. You are already being strong enough!
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Salamandra, I will answer you later, I just wanted to say thank you. That made me cry and I needed a good cry. On my way to buy pizza and maybe that is one small way to cut my worrying rut. Thank you.
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Salamandra- again, thank you. You are spot on when it comes to my brain being so used to worrying and going to the darkest of places. I've been there a lot, I'm going to try to do micro restarts.
I'm ordering the book right now, it seems that acceptance of what I cannot do anything about is the only way through. And there's no way out but through, I hear you
I am so humbled and thankful for everything you all have written. So much compassion here and it truly warms my heart and makes this a little easier
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Solarsister,
Hopefully you were able to enjoy your lunch. Did your doctor give you something to help with the anxiety?
I see my dr Tuesday I am still in pain from the fall I took. So hard not to go straight to is it cancer? I missed all week at work.
I hope June 12th comes quickly for you.
Find some things you enjoy to help pass the time.
I am in California. Puppy sitting today! She finally is taking a nap.
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Nutfarmer - puppy sitting! That sounds both adorable and exhausting. Glad you’re seeing your doctor soon. Of course the pain is from the fall, anything else would be a very strange coincidence. I hope your doc gives you some reassurance.
I forgot to ask my MO of anxiety relief pills. I called my primary doc and he said “try melatonin” (so I guess he has never been in my situation) or try an online psychologist. Itwasn’t possible to get a proper appointment today.
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Solarsister, I feel your angst. Truly. We have all had our share of the worry and waiting. Waiting is the worst. Earlier this year, I had some "red flag" issues show up on my routine labs and my onco ordered a bone marrow MRI. I was, predictably, TERRIFIED. I was convinced it would be cancer....otherwise, why would she be ordering the scan. Well, that is how my mind worked. I had to wait over a month for the scan. The MRI machine, as in my breast cancer biopsy, 15 years ago did, failed, right when they got mid-point to my femur. I was convinced that something was wrong. I got all clear results; even incidental findings inside the abdomen. It is easy to say and tell people not to worry, but the mind does what the mind does. I do yoga and meditate and was not able to harness those to help me.
Best of luck to you.
And I see you are in Sweden. Going there is on my bucket list. I love winter and snow so much, I'd even considered moving there, but my husband won't hear of it.
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Wallycat! I read through your posts and they give me hope. And oh, I have wanted to go to WA, Seattle and Vancouver ever since I was a teenager. It looks so damn beautiful. Of course I got my images from Twin Peaks and the grunge scene.
I thought about all of you and what you have written to me yesterday. I had a pretty good day. I went for a brisk walk after a thunderstorm, I enjoyed the smell of whet asphalt and the blooming bird-cherry trees. I listened to my favourite music on high volume. I got my endorphins working. I cried, I felt anger, I felt strong and my back wasn't painful. I did stretches and some very very gentle back exercises. My husband baked brownies and I did manage to eat some.
By the evening I had sciatica again. Both sides. My anxiety flew off the charts. I took paracetamol and the pain was entirely gone but I was very uneasy. This has been going on for too long. This is not nothing.
I woke up at 4 o'clock with pain on the bad side. Anxiety off the charts. I haven't had pain at night before. I found a position that didn't produce pain. Think I fell asleep again eventually but to day I feel horrible.
My biggest fear right now is that I don't think I can live with mets. Be there for my kids with mets. I am too afraid to die. I'm scared I won't be able to be strong like that. I'm afraid I will be paralysed from fear and depression.
My mom died from breast cancer when I was 23. Are my kids going to have to go through the same experience but at a much younger age? They are just about to start their own independent lives. My oldest is an aspiring basketball professional and he want's to go to the US for a year or more soon! Will he do that if I'm sick again?
I'm trying not to go there. There could be another reason my back is failing me right now. I'm 44 and beyond menopause, I'm in bad shape from sitting too much for a whole year and exercising too little AND too vigorously too suddenly. I have osteoporosis. I just can't breathe right now and I have to get through the day. This back pain is real.
I'm going to text my longe time psychologist and see if she can talk to me next week even though it's Sunday. She knows my story.
I'm so so sorry for being this dark.
Edit: I got and appointment with my psychologist tomorrow. Thank goddess!
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Worry always puts us in a dark place.
Just as an aside, my husband has metastatic prostate cancer, dx 2 years ago in June. We did not think he'd be here, two years later. His cancer was an incidental finding because he had shin pain (no, the cancer did not cause the pain). None of his bone-cancer/mets hurts. He is doing great. The treatment brought down his PSA from 10,000+ (no lab could measure higher after the 10,000) to in the 120s (still high, but not 10K!) and it has remained in his bones so far. He is active, alert, alive and doing, doing, doing things! When he sees me worry, he tells me it won't change any outcome (mine or his) and we should relish the days we have while we have them. He is my role model.
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Wallycat, thank you for telling me about your husband. I’m glad he’s thriving despite mets
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SolarSister, I'm so sorry for what you're going through! I relate to it so much. Two months ago, I found a breast lump, 10 years after my bout with DCIS. I actually felt sure it was nothing, but got it checked out since I had missed my annual exam the prior year due to COVID. Coincidentally I was also having worsening sciatica symptoms at the same time. Well, the ultrasound led to the biopsy which led to my 2nd cancer dx. And given my rapidly escalating horrible sciatica symptoms, everyone was concerned it was mets. I had intense scanxiety for about four weeks as I went through a battery of imaging studies - x-rays, PET/CT, MRIs. It was so hard to tame the dread, anxiety, and grief, and I can't say I found an approach that eliminated them. But I did read something on here along the way that did help: "don't rehearse a tragedy." Somehow that phrase did cut through the intense feelings I was having and helped me focus on the "now" a little more than the unknown future. In my case the sciatica turned out not to be mets at all: it was a severely slipped disc at L5/S1 brought on by too much zoom and sitting during COVID and not enough exercise.
Wishing you as much peace of mind as you can muster during this waiting period.
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Solarsister, I shared my story because you are imagining immediate death with a possible mets dx, and that is NOT the case. I hope things improve for you.
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Thank you so much both sunshinegal and Wallycat. I can’t believe what an ordeal you’ve been through sunshinegal but what a relief there wasn’t mets.
I need to hear both those stories because I can’t pretend that mets doesn’t happen and if they do, I have actually been really afraid that it would be the end of me, especially mentally. I’ve thought a lot about how lucky we are to have a big network of family and friends, my sons friends parents and I know that they would be there for us and for the boys. I know we would all be completely devastated to say the least, but we won’t be alone.
I also need to let myself think that it could be something other than mets and that when I get the results there could be relief. This is what I find most difficult to think/believe and when I do let hope in I almostfeel guilty somehow. I feel greedy! I know it’s not, so I’m going to let myself be in that eventuality too. It’s ok.
I had an hour with my psychologist today and she helped me breathe because I seem to have forgotten how to, and breathing helped me cry.
I took a walk in Stockholm city and it was beautiful, magnolia and lilac blooming and full of people and sooo many pandemic puppies. I met with my 82 year old father and we hugged. Hi’s lady friend gave me a couple of her sleeping pills. I think I will be able to get through these weeks.
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Awww your walk sounds amazing.
I hope the sleeping pills help you rest.
I am making a new dish in my instant pot tonight. Sounds like it is done. Hoping it turns out!!!
Hang in there. We are here for you!
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I've become even more worried now. Brief moments I think I'm out of pain and are able to think it might not be mets. My lower back pain has cleared up, but now I feel that there is an achy spot on the "bad" side of my pelvis, almost like a deep bruise. That is where it hurts in the morning still, and when I sit too long or take long walks. I've been too afraid to go to the gym and exercise. The pain is very localised to the left upper side of the pelvis now, and I guess I have to call this pain persistent because it doesn't really go away, only at night when I lay on my right side and before I get out of bed. I've narrowed it down to the sacroiliac joint, it really fits every description. And that is a very common area to get mets right?
I very much feel like I really really could have a metastasis in this area and maybe more. A very plausible explanation to what I am experiencing, and my mind goes to telling the kids, my husband, my dad, everyone around me. How it's going to crush their worlds. Heck I'm vacuuming this forum and the whole internet and I am almost obsessively reading reading reading. Thread after thread after thread. The achiness just doesn't go away
Just took ibuprofen to get my mind off it.0 -
SolarSister, I am not a doctor and obviously nobody can diagnose mets over the internet, but the pain sounds like it could very well be joint degeneration - it doesn't hurt at night, and it hurts most after periods of inactivity or after overuse.
I have bone mets all over my spine and pelvis, and I never had any pain from them prior to diagnosis nearly 3 1/2 years ago. They are currently all inactive by PET/CT, and still not painful, although now I get occasional back muscle spasms from all the pandemic sitting I've been doing.
I wouldn't normally be butting in with stories about living with mets in response to someone who's not yet been diagnosed, and I don't mean to imply that I think you will be diagnosed with mets, but you seemed to appreciate wallycat's story and learning that even the "worst case scenario" might not be as bad as your fears make it be. In the last three and a half years I have seen my daughter grow from a little kindergartener who wouldn't go to sleep on her own to a funny, independent, biking-all-over-the-neigborhood, going to a month-long sleepaway camp, almost fourth-grader. I started (and finished) law school while working at a law firm. My family act largely like they expect me to be around forever, and that's perfectly fine with me for the time being. I'm still (knock on wood) on my first line of treatment, taking two pills every day and a bone strengthening infusion every three months. Besides some fatigue and brain fog I feel pretty normal. If your cancer were to return and spread to your bones (which it very well may not), you would be in one of the most favorable prognosis categories - young, ER/PR positive, long time from original diagnosis, likely bone-only spread. There's no reason to think you wouldn't have many years of life left, with near-normal quality of life.
Best of luck with your scan!
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Solarsister,
I get it. I do. The worry is always in the back of our minds. Sometimes we just can't help it. If it IS mets, you'd be surprised how much you can get through. I was diagnosed at 30 when my baby was only 3. I had one teeny met. I was then NED for 2 years before a crazy recurrence. Like it went from nothing to a lot of something in 4 months. Of course I was devastated. I thought I was a unicorn that was going to be okay forever. But i've been doing it and responded well to chemo as far as my half way scan. I live relatively normally. I Am scared at times. I get triggered when I see other young women pass away. But i have to remember that they are not me and I am not them.
Anyhoo, I hopped on as i'm a kinesiologist . I *cannot diagnose over the internet and cannot provide 100% peace of mind* However, everything you describe sounds like piriformis syndrome or a slipped disc. Easy way to tell its a disc is to do extension of the back ( ie lay on your belly and do a cobra yoga pose). If it provides relief , that's a great sign.
The way you describe the onset and the pain, the pain referral, really sounds like it's muscular. You have to remember that when the glutes and low back are not in alignment, or are tight, ect, that the whole surrounding area is affected. it affects your sleep, the way you move ect. Compensation happens and makes the whole thing continue. It's a viscous circle and not an easy fix. It's the center of our body after all. It holds us up! It is not a quick and easy fix and where I work, I see a lot of people coming in for that problem for a decent amount of time. I have also seen physios and chiros refer their patients for more investigation because their pain and symptoms were worrisome to them. They can sometimes tell when things don't line up and are more than they appear. They are often right .
I think that your Oncologist giving you an MRI to be extra cautious is amazing. Where I live, it's not easy to come by ..
It'll be a nice baseline for any possible future scans.
As far as Osetopenia, exercise when you feel better, is a great way to keep the bones strong
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Thank you!!! Piggy and BAP, you took me off the ledge tonight. I know you rather not be, but you are my role models now. I admire your strength so much and somehow I know I will be able to be strong (and devastated too) and just deal with whatever comes my way. I know it intellectually. I’m so glad both of you are able to live life without pain, and thank you for showing me it’s not the end of the world.
I’ve known since I was diagnosed that I’m high risk for recurrence, and having made it 9,5 years out with no recurrence is something I could never dream of back then.
And BAP, thank you for taking the time to explain what you see regarding back pain from your professional perspective. Thank you all so much from the bottom of my heart. You are helping me right now more than anyone.
I talked to my boss today (she’s great) to whom I’ve told what I’m going through, and she asked if there is a community for me with people who knows exactly what I’m going through, and I told her about this place and how much it’s helped.
I can’t write here everyday for three weeks can I? At least I’m not going to google anything regarding mets anymore. It’s like some kind of disorder I have, gotta just stop. It’s not like it’s going to change the outcome.
All my love too you
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SolarSister if it helps yes post here daily!
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Glad I could help in some way. Obviously us only communicating on the internet, I can't say one way or another, but I suspect it's quite innocent, and I certainly will keep hoping it always stays that way for you
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BAP, the part that helps me most is knowing life with mets are not immediately the end of life. I know there’s a reason they want to make sure, the risk is there and it is what itvis
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Solarsister, I can imagine what you’re going through right now mentally, I am having back pain for 1 week and my brain took me to the darkest place... one advice, I put pepper bandage on my back and that helped me a lot... I live in Ecuador, hopefully you can find it where you live. I put it on my lower back for 2 days, it burned like hell, but surprisingly the pain is completely gone. Our lifestyles in the last 1 year has changed a lot.. we are spending a lot of time sitting in front of the computers ( thanks to pandemic) and our bodies are reacting now, it’s like they say enough... you are going to be just fine, no matter what results you get remember how strong you are and how far you have come... the good news for all of us is that how scientists are keep giving good news regarding cure for cancer and mostly breast cancer, Working on genes is so promising, soon they will cure it with our own genes, soon we all will celebrate it✨🙏🏻✨0
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B-A-P mentioned pirirformis syndrome--I shared that I've had it. What I didn't say was how much it hurts. At one point things were bad enough that it greatly affected my ability to walk (forget running, and I'm a runner). It just hurt so, so much. I'm very diligent about doing all the rehab exercises my physical therapist gave me (we now consider them pre-hab as they will help prevent it from coming back).
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Nas - Thank you for thinking of me. It really helps with heat - and ice. Tonight I’m going to take a nice hot bath.
edh3 - Wow, so far the pain in my butt hasn’t been that bad at all. What did it feel like? Mine feels like whenever I get up, especially from lying down, the muscles tighten and start to hurt. Ugh. When I walk around it feels better. I’m glad though that the lower back pain is gone. I did the cobra pose today that BAP talked about and it felt great. One week ago I was too afraid to do it.
I walk at least 10000 steps a day because I know it’s good for my osteoporosis. So far it doesn’t seem to make things worse as long as I don’t over do it. If this but pain just feels a little better I might hit the gym this weekend and just work on machines that don’t focus on the glutes. It always lifts my spirit being there.
❤️
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Hello ladies! This is looong. It's Sunday morning in Stockholm. Summer has finally arrived and it's a beautiful day. I can't hold myself from writing though, it just feels better to get things of my chest. This is so incredibly stressful.
I've managed to live through over a week since my MO ordered the MRI. Anxiety level right now: 8/10. Pain level: 2/10.
My back has gotten so much better since I wrote here first. At the time I could not bend to wash my face or pick up dishes from the dishwasher. I can do that now without any pain. I can lay on my back in our sofa and it doesn't cause much pain getting up at all. A week ago I couldntget up from sitting without it being very painful. I have had pain in my left buttock and mild sciatica though.
However, the truth is Thursday evening I decided to take ibuprofen for a couple of days in case the sensations are due to inflammation. Why not give it a shot, I thought. I decided to only take 200 mg twice a day instead of 400 mg, I cut the pills in half, and it really really helped. Yesterday we went on a small trip to my mother in law, so I took 400 mg in the morning just to be sure I wouldn't have any pain at all. 8 hours after the first pill I felt like I had been cured of whatever's been bugging me. I took a walk and felt great. Sure, there are signals from my lower back that all is not entirely well, but nothing I would have thought of otherwise. I got home and did some stretches, the cobra pose and piriformis stretch, and man...my butt started hurting again. I took another 400 mg ibuprofen in the early evening and the pain completely subsided. Still I got caught in a Google frenzy and just googled mets for hours till I was convinced I do have mets. I know the ibuprofen is masking the pain. Had to take a 5 mg oxazepam (benzo) to calm down. I'm almost out and it's not even my prescription (got them from my dads lady friend).
I feel like every morning is like a nightmarish Ground Hog Day, you remember that movie? I wake up, feel incredibly sad and so so scared, I lay still and scan my body. I tell my husband to hold me and tell me everything will be alright. Today I woke up almost completely pain free. Getting up from bed has been hard before, but today it wasn't at all. It's just that it's alway “almost" and I want it to be completely over!
I haven't had the guts to go to the gym or do anything that could put a strain on my back.
Two weeks from now I will have had the MRI. Two weeks and I'm scared that I'll get a new pain, more pain or no difference. Not knowing where this is going is taking a huge toll on me. I'm still standing right at the edge of the abyss.
I'm trying really hard to focus on the positive - it hasn't become worse, the pain is actually dramatically better. It just scares me that I also haven't lived life normally and the stretches had my back/buttocks hurting again.
Just had to get this of my chest. Hugs to all of you
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You will be happy once you have the MRI.
The fact is that as we age, we will get more aches and pains, simply because parts start to wear out, tighten, and we either use some too much or not enough. I am glad you have had some improvement in your pain, which makes it sound more like an inflammation/irritation.
I do feel your morning angst. You describe it exactly as I felt waiting for my MRI. I half-joked with my husband saying "I'm going to the gallows" because I was convinced it would be bad news. Your husband sounds loving and caring and if he is like my DH, you will get through it. Mine said, "we'll deal with whatever the outcome is and take each day as it comes..." which really, is all any of us can do.
Best to you.
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Thank you so much again Wallycat, for being there and telling me things that make me feel better. It’s goodknowing that I’m not insane for being so scared, you felt it too. I’m not alone.
My DH is the best, I’m so glad I have him. He is not worried AT ALL which I actually appreciate. Wallycat, your husband seem to be the best too, that is the only thing I want to hear. My friend asked me if there was anything she could do to make all this easier on me, and I said what your DH told you. “Please just tell me you will be there for me whatever happens”.
I took an hour long (and very carful) walk today and felt totally fine. Some aches in the piriformis area when I got back, but with a little rest it feels better.
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Ibuprofen isn't a cure; it takes care of symptoms for a set period of time. I've had arthritis for years and I'd never expect ibuprofen or any pain medicine to cure. What they do is alleviate. I've taken them daily for YEARS because I can't get my body to move much without those pills.
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SolarSister - For years I had severe sciatica (L5/S1 disc herniation) and took several prescription meds to deal with the pain. It doesn't seem that you're at that level if ibuprofen is enough. It's better for your stomach to not split the pill. For anxiety I took Ativan, mainly at night and scan times.
It's good that you can go on long walks, but I recommend finding exercises for your core and back areas. It took a long time for me to find what works. Not all exercises helped. Postural alignment exercises worked for me. Eventually I was able to stop all my sciatica meds.
Don't forget to take deep breaths. When you wake, when your mind races, when you see flowers.
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Alice - I didn’t think or mean that ibuprofen cured me. I’m just grasping for hope here during a very stressful time, and and as I noticed that I wasn’t in pain after the effect of this painkiller I took in the morning had subsided, I felt relief for a moment
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