It's as thought it never happened (for everyone else at least!)

blingiton

Hello... long term lurker... first time poster. Edited: and oh god I have noticed a massive typo in the heading and I can't change it.. it's as THOUGH it never happened...great first post lol!

I am ..... struggling.

I was diagnosed around this time last year with Stage 1 IDC, small tumour, lots of DCIS, chemo not recommended, but unilateral mastectomy and am on AIs (monthly ovarian suppression injections + aromosin)

I am 45 with two young kids with a supportive husband. I am 'lucky' and also unlucky, of course.

I find myself falling apart at the moment. I have a whole heap of routine, but scary scans coming up that I can't stop thinking about... But that's not actually why I am posting today. I understand that I have to get used to uncertainty and 'scanxity' - however it is spelled! No one has any guarantees. It's just that those of us who have been diagnosed with BC and the like have had that fact shoved in our face! A week after I was diagnosed, a lovely young woman from my husband's work went out to lunch and never came back.. she was hit by a car and died instantly. Life is fragile and no-one has any certainly, really. I have always been a fairly melancholy person, so I think I can learn to live with this constant low-level (and sometimes high-level!) worry.

I feel though, like I am not being supported and it's making going through these difficult times more difficult. I briefly mentioned to a friend that I have some scans coming up and was a bit worried and she looked at me puzzled. I explained they were follow up scans to the BC I was diagnosed with last year and she said 'hope they go well' and then quickly changed the subject. From the puzzled look on her face, I feel like she had totally forgotten that I ever had BC (this is a good friend, not a passing acquaintance)

Before my first routine follow up visit to the breast surgeon a few months ago, I mentioned to another friend I was feeling nervous and she wished me well.... but then never took the time to asked me how it went afterwards. This is someone whom I am in text or FB contact almost daily.

Chatting with the inlaws... my FIL has recently had some minor surgery and was bemoaning the horrors of constipation post surgery.. it was a light-hearted conversation.. I laughed and said, oh, I so feel your pain, being blocked up was worse than the actually surgery I had last year... " He said, "What surgery? Do you mean when you had your c-sections?" ... It seems my FIL, who I am quite close to and have a good relationship with, seems to have just forgotten I had a mastectomy last year.

These are all people who I have supported through various health ailments or marriage breakdowns etc. I know these are all small encounters, but they are a handful of many similar conversations. It all adds up to feeling like what I went through and continue to go through to an extent, has been forgotten.

I don't actually bring up BC much - and was pretty private when it was all happening last year, so maybe people just figure I was okay and it's all over.

My husband is a rock star, my rock and I hate to drag him into my little pity party, but he also changes the subject if I mention anything BC related.

But then... I guess people can't win, because sometimes I get pissed when people DO mention it..

I was having a lovely champagne brunch with some close girlfriends (a very rare outing) and one of my friends started reflecting on why so many women our age are being diagnosed with BC and it "must be something in the diet or exposure to chemicals from fast food"... hello.. I was sitting right there and you are basically blaming getting cancer on my crappy diet... This time I was the one who changed the subject.

Can anyone relate? I don't really need any advice, I just feel better venting about this with people who might understand..

Thanks

ElaineTherese

Hi!

When did you start your Zoladex/Aromasin? I'm on the same, and it gave me some serious mood swings. My oncologist prescribed Celexa, and I've been on an even keel ever since.

Re: the lack of support -- sad to say, but many people aren't always supportive, even our loved ones. It's not that they mean to be thoughtless; it's just that they really DON'T know how we feel.

Also, many people are uncomfortable with talking about cancer. I actually talk about cancer more than most, I think.

((Hugs)) and best wishes for clean scans!

Hopeful82014

Blingiton -

A) You can send a PM to the moderators asking them to fix the subject line. That problem, at least, is easy to solve

As to not being supported - yes, I understand; you're not the only one to experience this, unfortunately. I, too, was pretty private about it (out of necessity) but still, friends and relatives do know. My friends do not ask and I don't want to be the one to bring it up. Oddly enough, my step-mother and my husband's friends are the ones who check in with me, in the nicest possible way. Some of my co-workers do, too - we had an outbreak of bc in our office over the past 4-5 years, so there's a lot more understanding and support than you'd expect. Otherwise - it's as though it never happened. Even my sister NEVER asks.

My spouse is great but in a quiet, behind-the-mask sort of way and he went through so much with me that I hesitate to tell him when I've got a case of the wobblies. Most of the time I rely on my counselor for support through those times.

I have a feeling this is much more common than you would expect. Human nature is frequently unfathomable. Do be gentle with yourself as you hit these anniversaries and the various scans. Try to build in something that nurtures your body and soul or at least distracts you agreeably for a few hours. Such things can really help release some of the tension you're carrying about all this. You might see if your hospital (or whatever) has a counselor you can meet with. Mine has been a real lifeline; I wish everyone of us could have someone like her in their corner.

C) Elaine Therese is right about the hormonal therapy - it can definitely have an unsettling effect, especially when you're new to it.

Hang in there and do come here if it helps. We understand. (Gentle hugs)

Shellsatthebeach

Cancer can be one of those uncomfortable topics for people. A lot of times people will mirror how you act and feel. I'm a private person, so people will respect that and don't really talk about it unless I bring it up. I do notice that others who are more comfortable talking about it often elicit a different response.

blingiton

Thank you, thank you, thank you ....ElaineTherse, Hopeful8201 and Shellsatthebeach.

I really appreciate your wise words and taking the time to reply. Just writing this down and speaking to people who know where I am coming from helps so very much.

It's funny the people you least expect have been so supportive.. my very stiff and formal (male) boss quite often asks how I am going and organised some very practical help and support when I was recovering from surgery (he organised for me to be paid very generous sick leave, even though it wasn't required under my contract)

It's also made me reflect on the times I have probably less than supportive of others.. I have been guilty of the 'If you need anything, don't hesitate to let me know' remark to people who are grieving or going through illness.. I know now, that it is always best to offer some practical help, rather than vague offers that put the onus on the person going through trauma to reach out.

rdeesides

I have to say I have probably been guilty pf not supporting friends going through rough spots in the past. I never want to bring up something unless they do for fear of intruding. Now that I have had BC I have learned how I can be a better friend.

Maybetell your close friends that you feel the need to talk to them about it. They will most likely be supportive, but just don't know how.

R

Optimist52

blingiton, this phenomenon that you describe is unfortunately far more common than many realise. There have been several threads on this site to do with the change in relationships after a BC diagnosis. I was certainly shocked and disappointed at the lack of support offered to me when first diagnosed at 40. With my second diagnosis 12 years later, I made sure to tell almost no one, only close family members. I've found it much easier to deal with frankly.

Worse than lack of support is having to deal with insensitive, uninformed and frankly stupid comments from others! It's as though some people aren't brought up to show caring towards others. Great that your boss is so supportive though.

ElaineTherese

Optimist 52 --

"Worse than lack of support is having to deal with insensitive, uninformed and frankly stupid comments from others!" Well, ain't that the truth. I spent my grandmother's wake in an itchy wig, listening to an old friend of my Mom's, who told me that she'd discovered the cure for breast cancer while watching the Home Shopping Network. Ugh!

MTwoman

I think, to make matters worse, is the overall sentiment that when we've finished our treatment(s), whatever they are, that we're "cured". That we are being, somehow, a bit histrionic to think that it could come back. (especially us, with our "lucky" in situ diagnoses) So as we get back to our new normal, they go back to their old normal (many of them). But our new normal now involves regular screening or medication that reminds us. Even after 14 years NED, I get scanxiety. In fact, I was 38 when I was diagnosed, so my risk on the unaffected side is just starting to go up. But after 14 years NO ONE brings it up. Ever. (ok, except my doctor) And honestly, that's fine with me. I come here and talk to others who get it. That at various times during the year I can still be bowled over by anxiety. But it does get better. Briefer. More responsive to reason.

JKL2017

Blingiton, I totally understand how you feel. I, too, have a wonderfully supportive husband but even he often acts as though I should be back to my old (pre-cancer) self by now. He is certain that I'm totally cured (of both my cancer & my mild lymphedema) & thinks that we should be celebrating that fact. I know he needs to believe that but sometimes I can't shake the fear of recurrence or the knowledge that LE is forever. (And I agree totally with ElaineTherese & Hopeful - AIs are probably contributing to the way we are both feeling.)

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Yesterday my DD (who is one of the most kind & empathetic people I know) was chiding me for complaining (I was not having the best day) & she told me "attitude is altitude" (her MIL's favorite expression). I told her I'd believe that if her MIL could say it after she had BC & LE. Sigh ... that was just mean. I don't want to be so cranky but sometimes I just don't feel as upbeat as people want me to be. And sometimes even the people who love us the most don't know what we need from them.

What Rdeecides wrote really resonated with me. Cancer is scary & talking about it is uncomfortable. Before my diagnosis, I probably failed people in the same way. All I can do is to try to be a better friend in the future.

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I know you said you aren't looking for advice but it's a mom/grandmother thing to give it anyway. Do whatever it takes to help yourself through the hard times. Whether it's medication, therapy or venting here - just do it! Exercise helps me a lot (& it's really beneficial!). And know that you're not alone - a lot of people understand & are here to listen whenever you need to be heard.

Good luck with your scans & exams. Pls let me know how it goes & how you're feeling.

JKL2017

And thanks, MTwoman. What you wrote really describes what I'm experiencing. And it's reassuring to know it will get better!

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MsMisha

Hi Blingiton -

I can absolutely relate to being upset when your friends/family don't talk about your diagnosis. Yet getting pissed when they do. Anytime anyone other than my fiancé mentions it, I tell them that I'm fine and downplay everything. But if my fiancé tries to downplay it and tell me that I'm going to be fine, I get mad at him. I finally realized that I really don't want my family to worry about me, which is part of the reason I automatically downplay everything and pretty much keep an upbeat "everything is fine" attitude around them.

But, I want to share every little fear and worry with my fiancé, and it irritates me when he tries to downplay any of it. I finally just told him (nicely) to knock it off