Why was I stronger DURING treatment than I am now?
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I wanted to mention one of my coping mechanisms I implemented when I was too sick to move last year - I spent hours on YouTube watching cat videos, pygmy goats, people falling off treadmills, etc. Anything that makes me laugh. It's sort of an antidepressant for me. I figure if it makes me smile and doesn't hurt anyone or myself, what's the harm? It's just for the really bad days, not like all day every dayfor months. Thought I'd share -
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Wintersocks, I hope the horrid tight feeling of the scars can be eased by massage to break up the scar tissue some. The massag therapist at my PT's office thought so.
Lily, you're right that it's darn near impossible to get away from cancer. I learned in a Christmas card that a childhood friend has had her lung cancer return, and is now stage IV. Also, just found out a coworker is going through treatment for stomach cancer. It's everywhere.
I also have a hard time hearing about animal cruelty. It makes me feel physically ill. Catlady, I'll join you on that farm! All my kitties have been rescues. I have 2 at the moment. You aren't at risk from the flooding in Missouri, are you?
Hugs all around, and may 2016 be an improvement for all of us.
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I live with 7 rescue animals....................and fight with myself regularly to not take more as I cannot afford those I have.......I always make sure I have food for them in store........
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2tabbies,
I think this horrid tight feeling has come on some time post Diep, following the urology op I had for the repeated urine infections, I had that op in early Dec. I am seeing the urologist Mon, I have a mammo Thurs (I think) and then the PS to discuss 2nd stage Diep Friday. It's such a horrid feeling like there is an elastic band being pulled from where my bladder starts to my (new) belly button. I will ask both what is causing this. I feel resigned. I just don't feel that 2016 is going to be much different from the last few years. it is so hard to live this way, but there is no choice I guess, just got to get on with it. I need to practice gratitude, but I seem to have mislaid the book that tells me how to!
Also I am starting a new job Jan 20th and that's stressing me out completely.
2tabs, so sorry to hear about your friend and colleague, cancer does seem to be omnipresent doesn't it. Lily, there has been a major tv campaign here by Macmillan and every time the TV goes on, the unrelenting grimness of cancer, catapults me back to cancerland as it is actual cancer patients, some still in tx being filmed .
I do hope everyone had a nice New Year, I went to bed early. I know how to party!
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yes i see those ads as watch UK TV on internet, get me every time........
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Purl - I love that you always speak the truth. I too am so grateful for life, but that is not ALL that I feel. Lots of times I just feel sore, and crabby. My underlying gratitude has overlying fatigue, impatience, grief, and pissed off-ness about having a big puffy arm, limited range of motion, and a sh*tload of scars. And I really love that everyone here understands.
Winter - Scar massage is really effective. I used bio oil twice a day and gave myself hard thumb-massage along the scar lines. Really helped to loosen up the tightness. At first I was being gentle but my PS encourage me to use a lot more muscle and showed me how to do it.
Catlady - I would love to join you on a farm for homeless and neglected animals. And I'm sure my DH (Jim) would help you hoard weiner dogs. He has a fantasy about living in a sprawling bungalow at the bottom of the hill with hundreds of daschunds, so when people come over the drive, all they see is a sea of weiners. But - that'll have to wait. Our giant cat and big basset hound keep us pretty busy for now.
I wish everyone a very happy 2016. The woman on this thread got me through a very difficult time, and for that I am forever thankful. I do not take this level of kind understanding for granted.
Janet
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Hi Janet,
Happy New Year to you! Is there a link you can send me to this 'hard thumb massage'? This feeling is driving me crazy. I will speak to PS about it on Friday. Thanks for that.
I too have a wide range of feelings, as you describe, it;s so hard to pull them all together as these feelings are often in conflict, opposing at times. Working one's way through them is energy sapping and just as we feel there is a handle on it, something new gets thrown in the ring. I think the sense of peace has gone forever, not that I ever really had that, but it is now the case ++ that life feels just so uncertain.
Love to all.
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Winter - I don't have a link. My PS showed me how to do it, and encouraged me to dig deep rather than massage gently, as I was tending to do. Basically I just jammed my thumb into my scar and started rubbing. But we're all different. Since you're seeing your surgeon on Friday - ask him what he recommends. I think the important thing is that you start breaking up the scar tissue. Eventually it will start feeling so tight. It's been two year for me and it still feels like I'm wearing a bet. But it's a vast improvement!
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Winter, I hope you can get some scar massage, and it helps. My tight scars are on my side and back from my LD flap reconstruction. I can reach them but not at an angle where I can give them a firm enough massage. I hope the massage therapist can do that. The scars on my foobs don't feel particularly tight. Or I can't tell that tightness from the tightness of the muscles over the implants.
This was posted on another forum. It pretty much says what I feel.
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Janet, Thank you. I will speak to the PS about this, tightness, I am not sure it is all Diep related, but may be from the gynae op too... Oh I am so fed up of trying to dx myself... Perhaps a physio session might help. My PS did say I was very long waisted, so perhaps pulling the 'closure' up/down was too tight. There I go again... I hope your dog is ok and you are enjoying getting out with him. I am not sure what kind of winters you mainly have in Canada.
2tabs, Oh that must be irritating not to be able to reach them. Do you have to pay to see a massage therapist? I think I might look into this, I proper get the poster, above, I actually do not know either what normal feels like. The 'not knowing' makes me feel helpless/hopeless at times. I actually don't ever now, give the honest answer to those that ask, I only reveal that here. You have had a lot of dx's (like Me) of other conditions, I think I am less resilient cos of that. Do you think you are too?
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Winter, yes, I have to pay for the massage therapist. Insurance doesn't cover it. It's $60 US an hour so I won't be able to afford to go often. People tell me I'm strong or resilient. I guess in some ways I am. On the days the depression hits I don't feel like it, but so far I've been able to keep putting one foot in front of the other.
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Catlady & Janet, I will join with the animal rescue. We only have one rescue, Hadley, because the husband is actually allergic. If he wasn't, we would rescue & foster.
Wintersocks & 2tabbies, sorry to hear your scars are so uncomfortable. That must make you crazy not to be able to reach. Erg. I hope the urology stuff gets better too. Having several issues at once is overwhelming. As for the resilience...I think other people expect it of us, and have an image of what it should be...but what if reality is maybe we are more resilient than any of them ever could or would be? I look at you dx history (both of you) & what I have recalled from reading past posts...you have been through a LOT. I challenge other people to go through your experiences & not have real feelings of hopelessness & depression sometimes. It makes it worse when there isn't a safe space to just be real sometimes & not be "tough."
I have had a couple of incidents in the last six months where after a bit more wine than I generally allow myself I will burst into tears when someone seems to genuinely want to know how I am doing. I hate it. I hate crying. My only excuse is that it is so seldom friends, even very good friends, want to handle the fact that some of all this is so hard and ugly to handle.
Even the husband, who has been really helpful & caring for the past 2 years, cannot look at my scars. He says they look too painful. My scars are long, but genuinely pretty flat and good. How does he think it makes me feel when he says that? That I know he avoids seeing me without my shirt? It is just one more exhausting thing. I know he loves me & I know he is still attracted to me...but it all makes me feel disconnected and tired. Even more so when I know I am lucky that I have him & don't have to try to explain all of this to someone new. I realise I am blessed to have him for more reasons than this.
Cheers to all of you ladies. Thank you for being here and being real. Here is to a happier, healthier and wealthier 2016 for us all.
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Winter I had a terrible amount of scar tissue from vertical hysterectomy, but worked on it with massage, acupuncture, ultrasound initially to weaken fibres, and rosehip oil........took 3 years but now área is tons better and i never feel it
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2tabbies, the acupuncture for neuropathy has been helping a lot.
I have had 5 sessions in the last 2 months & it has made a huge difference in my feet. In the morning, I can now get out of bed & walk downstairs without feeling stumbly and that my feet are so sore. It used to take me a half hour after getting up before I felt comfortable on the stairs. It isn't perfect, but is getting much better.
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Smart, My scars are more annoying than painful. Just tight so that every time I move, I'm reminded they're there. About bursting into tears, sometimes I wish I could. I have never cried about this. I rarely cry. Mostly if someone dies, and "someone" includes pets. My therapist thinks I probably should cry, but it's not that I'm trying not to. I just don't. My husband has been supportive too, but doesn't touch me. The lack of hormones has totally screwed me up for intimacy so I think he doesn't want to do anything that would make me think he was pushing for that. He's been very patient. Thanks for the info on acupuncture. My hands are more of an issue than my feet. Well, let me rephrase that. My feet hurt and get numb, but I don't know if it's neuropathy, plantar fasciitis, Reynaud's, or something else. I'll mention the neuropathy too my acupuncturist though.
I have a preop appointment with my PS tomorrow. Gearing up to have nipples build and some revision done. Unfortunately, it doesn't sound like he can make me look like I want. But at least I look ok in clothes. I have to keep reminding myself how much better it is now than before recon.
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I had to laugh at how many of us love rescue animals. I have 5 rescue dogs, 2 goats and 2 mini-donkeys. This is the least amount of animals my family has had ever. We raised 5 kids and had chickens, ducks, rabbits, lots and lots of cats, a lot of horses and always at least five dogs along with sheep, goats and donkeys.
We were down to just the dogs and goats and donkeys when I was diagnosed. I still had two horses at my barn but thankfully they were someone elses and they took care of them and in fact were able to take care of my animals for me too while I went through 6 surgeries, multiple infections and chemo.
I just wanted to pop in and share that for some reason I have been so depressed this late fall and winter. The "fear factor" of cancer returning just hit me super hard several months back. I even had some scans to just be sure and everything is okay as far as my bone scan and brain MRI. But, the insanity lingers. Right now I have a lot of heaviness in my chest and it almost hurts to breathe. I don't have a cold but also feel seriously insane calling my doctor about it. I feel like they will put me in an insane asylum if I keep thinking every little thing that worries me is cancer.
It is funny because I had a good spell, as I mentioned earlier so this retreat back into the dark spaces is hard. Winter in Vermont doesn't help.
I am now 3 1/2 years from my diagnosis, 3 years from the end of chemo and just over a full year from my last major surgery DIEP. I recovered and felt good this summer. Lost weight, had fun and my mind felt sharp again.
I think the dull brain is depression this time. I do think I have some degree of permanent chemo brain, or at least after three years it doesn't seem to have gone away, but, I do think this recent fog is due more to my depression.
Anyway, not much to report other than I love that there seems to be such a strong animal and rescue connection between many of us and just wanted to wish all of you well. I know all of you being here helps.
Take care,
Julie
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BB you must be my twin, I spend most of my time trying to help animals and then feel guilty my own do not get enough attention............I find some of the images too painful especially what goes on in abattoirs........
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2tabbies - we aren't at risk for flooding here thank goodness. I think it's more on the other side of the state. I feel bad for them and there's been so many deaths! We mostly get tornadoes here, but in my 45 years, I've yet to be hit by one! Thanks for asking though!
Janet M - a herd of dachshunds sounds hilarious! One thing I love about wiener dogs is that no one can look at them without laughing!
I've always had winter depression, but my mom bought me this lamp called Daylight and you use if for 20 minutes every morning and it makes up for the lack of sunshine in the winter. It mimics the brightness of the sun, but without the harmful UVA's or whatever it is that messes up the skin. It's helped me.
That flap surgery sounds like hell! If my implants don't work, I'm not sure I'd go for that. I have a lot of tightness from surgery and radiation, but I haven't been able to stretch because of the broken ribs. It's so frustrating that often I can't do the things that would help me because some other body part is messed up.
This post treatment crap is very depressing. I didn't expect it to be this bad. I hate that everyone is struggling, but it's nice to know I'm not alone. Somehow just knowing that something I'm dealing with is normal, whether physical or emotional, helps ease the pain and/or worry of it.
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Saw the urologist and he dismissed the tightness as having anything to do with the op. even though it is vertical. I have no infection although I feel like there is one. He said the lack of oestrogen is definitely a factor in persistent UTI's, He said no Vagifem (is there a worse word than that??)' and to return in 2 months.
Next appointment mammo.... I will get the results there and then. I had a poke around tonight and I am imagining all sorts. Sigh...
I do hope everyone is ok.
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Winter - over here they tell us to use a gel that is absorbed into the walls of the vagina to counteract lack of oestrogen. It is hormone free. I finally succumbed to using it and have to admit it has NO side effects except to remove the effect of constant internal sandpaper.......if you get what I mean. The (female) doctor told me in no uncertain terms that many women need this who do not need AI´s or have any dx of cáncer, its just menopause.....over here you can buy it in online farmacies or over the counter. I am ultra sensitive to all sorts including VAgifem that just irritated me but these gels are fine and do what they say, amazingly.........
I also have a constant tight pressure type feeling across pubic line.......but no infection although I feel my bladder is irritated at times........
Boy we have some open exchanges on here just to maintain our bits........
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Lily, thanks for this and I will look into what you sent. We sound to have similar issues and that horrid tight feeling too. I have a friend on Herceptin and she too reports these symptoms. I have something from the chemist for cystitis she said that might help...
Yes, we do have some exchanges, and the info shared is really useful.
Well we are into 2016 now and it is to be hoped a better year for those of us who are still struggling, I had a massive panic about recurrence last night at 3 in the morning. It's a very lonely disease to have or not have depending on your NED perspective.
Off to talk to my youngest son's tutor today as he tells me he is not returning to college.....sigh just another problem to cope with.
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So glad I am not alone either, it is amazing how "after the fact" you can have more anxiety, depression possibly. I know I am a different person and I am almost two years out. On one hand I am so so so grateful to be where I am but I guess you just wait for the shoe to drop sometimes if you are not careful, every ache you wonder, bump, etc.
There is a wonderful mindset that the worst part is the chemo or radiation or surgery or diagnosis but what most of our dear not-ever-having-cancer friends don't realize is that there are so many variables with cancer and they are still learning so much about it- not always "oh you are cured" like so many say....
I am in the middle of my doctorate at age 58 and when I started it sounded like my bucket list and such but I have days I wonder, is this stupid... it is like if you are not careful you forget to enjoy the opportunities you have been given....and we need to dig in and do that but yes, it can be challenging at times...
Please know I am not being Debbie Downer or looking at my life negatively, I am dang blessed to be where I am but no matter what your stage or place in life I do think emotional ups and downs are normal for some people..... You are not crazy.
Edited to say Wintersocks hope it goes ok with the tutor situation.
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Julie, yes, the "fear factor." I get that. My lower back started hurting yesterday for some reason, and the first thing I thought was "Cancer!" This sucks so bad, and NED is such a joke when they aren't even doing anything to look for evidence of disease. The closest I get to that is being asked how I feel. I feel like crap, that's how I feel!
Bosum, none of the things you mentioned (exercise, meditation, yoga, drug and talk therapy) seem to help my stress either. I'm still trying. I have an appointment with my therapist today as a matter of fact. Frankly, I think talk therapy is a joke other than it gives me somebody to vent to so I don't feel like I'm dumping on friends, etc. I've often wondered if chronic stress has been a factor in my cancers.
Catlady, the flap procedure I had (latissimus dorsi flap) hasn't been bad as far as physical symptoms. I have tightness from scars on my back, but that's about it as far as discomfort. I'm going to have a massage therapist work on those. That's supposed to help. I'm not thrilled with how I look. The pointed oval of skin from my back right in the middle of my left foob isn't attractive. The color doesn't match because my chest skin is darkened, apparently permanently, by radiation. But I'm told I really had no other choice except to stay flat. I look ok in clothes, and I'm grateful for that. I'm having the next surgery in this process next week. Nipple construction and some fat grafting to shape things up. To be honest, I was hoping to look a bit more like my original self than I do, and I find that depressing. I didn't expect perfection by any stretch, but the shape I've got doesn't look normal to me. The PS thinks my foobs look fabulous so maybe I just don't know what "normal" is or how bad my results could have been. I'm just so tired of feeling on the verge of tears half the time. If that makes me a Debbie Downer, so be it. I have to pretend everything is fine at work and with the rest of the world. I figure this is one place that I don't have to do that.
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For those of you struggling with PTSD stuff the most effective thing I have found is Havening...........look it up for your área, has been proven scientifically.....but its not a cure, its a way to cope and reduce the level of stress
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I recently broke out of a depression I've been in since August. I feel a little better but still have the fear. I also have found that I am unable to really deal with any type of stress. But I am trying to move forward and trying to be positive. Today is my birthday. Though getting older isn't easy, I am incredibly thankful that I get to have this day. I will be grateful for every one I have from now on and will never take this day for granted. I thank you all for being there, listening and giving your time and support!
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♥ Happy Birthday to you MeToo14!!!!
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HAppy Birthday xx
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MeToo, happy birthday! I hope you get to dance under a mirror ball and have cake or whatever your heart desires!
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Thank you everyone for the birthday wishes!!! I am enjoying the day.
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Happy Birthday MeToo. I recently had my birthday and even though I turned 57 I too find that aging is a gift. Even though I have been in a deep depression the past few months I know that likely this too will pass. It was great to read you feel you are on the "other side" of your depression.
Thank you so much for sharing and reminding me that where I am today is not where I will be always....
Much love,
Julie
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