Struggling with Negative Emotions
jconnolly4285
Member Posts: 2 ✭
Good morning, I am new to the forum so apologies if this subject has been discussed previously. I had a double mastectomy in March 2024. Breast Cancer is so prevalent in my family, but all other family members have only needed a lumpectomy, not a double mastectomy. I'm not belittling their experience, but I feel I don't have anyone I can talk to about what a double mastectomy does to your psyche.
Having said that I am conflicted as I am an extremely private person and wanted to keep my predicament to myself. However, my husband, mum and dad, SIL and work boss all told someone, who told someone, who told someone. I feel there was a total breach of my privacy and let down by them, even though they were all so supportive of me in many other ways.
For me, I feel the best way to deal with the emotions of a double mastectomy is to just suppress the feelings, keep telling myself that there is always someone worse off, and keep everything normal. However that is hard to do when you are confronted everyday with a scar from underarm to underarm across your chest, pain is always prevalent somewhere (lymph node removal pain, pins & needles on my back and upper chest, scar pain, internal pain) and now I know everyone knows.
OK, so I've thrown a lot out here, but I guess my questions are:
- I'm wondering if anyone else feels betrayed (justified or not) by the ones they love and trusted? How do I get past that?
- How do I stop feeling like those that have had a lumpectomy had it easier than me, when I know they all had their own difficult journeys?
I'm normally a positive, glass half full type of person, but I'm so emotionally confused at the moment and this is not the normal me. I usually live my life accepting that everyone's journey is individual to them, but at the moment I just feel like those who haven't gone through a double mastectomy just simply can't understand. And I know this isn't fair, I know it, but it's where my mind is at right now.
Any words of wisdom, tips, life experiences that you could share would be very appreciated, so I can get back to my positive self.
Regards
J
Having said that I am conflicted as I am an extremely private person and wanted to keep my predicament to myself. However, my husband, mum and dad, SIL and work boss all told someone, who told someone, who told someone. I feel there was a total breach of my privacy and let down by them, even though they were all so supportive of me in many other ways.
For me, I feel the best way to deal with the emotions of a double mastectomy is to just suppress the feelings, keep telling myself that there is always someone worse off, and keep everything normal. However that is hard to do when you are confronted everyday with a scar from underarm to underarm across your chest, pain is always prevalent somewhere (lymph node removal pain, pins & needles on my back and upper chest, scar pain, internal pain) and now I know everyone knows.
OK, so I've thrown a lot out here, but I guess my questions are:
- I'm wondering if anyone else feels betrayed (justified or not) by the ones they love and trusted? How do I get past that?
- How do I stop feeling like those that have had a lumpectomy had it easier than me, when I know they all had their own difficult journeys?
I'm normally a positive, glass half full type of person, but I'm so emotionally confused at the moment and this is not the normal me. I usually live my life accepting that everyone's journey is individual to them, but at the moment I just feel like those who haven't gone through a double mastectomy just simply can't understand. And I know this isn't fair, I know it, but it's where my mind is at right now.
Any words of wisdom, tips, life experiences that you could share would be very appreciated, so I can get back to my positive self.
Regards
J
Tagged:
5
Comments
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https://www.bcna.org.au/helpline/
Welcome to the forum
The link above is a starting point for you to talk to someone.
On day of diagnosis I was put with a Counsellor. She suggested a gatekeeper to fend off well meaning enquiries until I was ready to cope directly. My gatekeeper was my Hubby, he was with me when I was diagnosed.
For you suppressing your feelings may lead to anxiety and becoming an emotional wreck.
The BCNA website has lots of good information, resources such as Podcasts.
Take care
Best wishes
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I didn't mind people knowing about my cancer but I couldn't deal with some of their reactions and stupid suggestions. Consequently I made my two daughters my gatekeepers and refused to answer my phone. Hubby was having his own struggle with it so I encouraged him to only answer the phone to people who supported him. This means many family were cut off from us directly. By doing this I could recover from the hurt they caused me. I also have the benefit of a good friend that just listens and supports me even when I say stupid things.
When I concentrated on people with 'lesser' cancer and treatment, I would find the poor me would raise it's head so I made myself move past that and told myself I was happy it theirs was not worse. Who wants others to go through this? Then I had friends who had extensive cancer and if I concentrated on that, I panicked. So I needed to just focus on my own journey and hop on this forum when I needed some emotional support. I also access a psych who was so good that I only needed her once for my initial cancer and then twice more when I got my MBC diagnosis.2 -
Hi @jconnolly4285
I'm sorry that you are having some negative feelings, but I also think that is completely normal.
I completed neoadjuvant chemo prior to surgery, so whilst I am also generally a private person there is no getting around the visual marker of hair loss! As such, I encouraged my husband and children to talk to whoever they needed to about it for their own support.
But yes, I understand that you might not want to be known as the "cancer" person. I was told to think of my diagnosis as more like a chronic condition (such as diabetes etc) and that helped my way of thinking.
I chose a double mastectomy through the private system and am comfortable with my decision. I think about the surgery as a form of amputation, but of a part of your body with less function than something like a limb. A process of grieving for the loss of that body part is completely normal (even though it was trying to kill me
).
Often radiotherapy is required following lumpectomy and this can be avoided by having mastectomy, so the processes are different but not necessarily harder/easier.
My surgery was in May so my scars are still quite visual, but I am advised that they will fade in time and I can also get nipple tattooing etc, which will help to hide scarring.
Definitely let your team know about the pain. I would encourage you to focus on rehab with an accredited sport program or physio - over here in WA the Cancer Council offers free programs - exercise always makes me feel great. Also seek out specialist breast cancer counselling to to heal your mind (particularly if you are hesitant to talk to your husband) and keep posting on the forum.1 -
Sorry to see you here, @jconnolly4285 - I hope you are healing well from your surgery - sadly, it can take a while for the nerves & muscles to 'settle down' after surgery - if your pain & discomfort continues, definitely tell your BC Nurse and/or surgeon xx Some people get Tattoos to 'hide' the scarring & there are some fantastic ideas out there ....
I am so sorry to hear that you are feeling betrayed by some of your family & work place and can fully understand your emotions
It has really hurt you xx I hope that you can regain some trust with your family and boss .... and that they fully understand that anything they are told, is in confidence, not for repetition.
As @iserbrown mentioned, please contact our Helpline, on 1800 4500 258 (Mon-Fri, work hours) to talk thru what has happened .... as dwelling on it will only upset you further. Suppressing your feelings may only add to your distress.
I'd also suggest that you listen to Charlotte Tottman's What you Don't Know, until you Do .... She is a specialist BC Counsellor - who has had a double mastectomy, so knows what you've been thru. After her own diagnosis, she found that her experiences had changed her previous 'understanding' of what BC patients went thru ..... you can read her 'story' below in the PDF. And also listen to her podcasts here - they are very easy to follow and I think they may help you on this unexpected journey xx
Start with No 13 (the first episode of the first series ...)
Everyone's 'breast cancer journey' is different - and weirdly, those who have mastectomies may recover quicker than those who've had lumpectomies! Maybe just try & concentrate on your own recovery & not ponder your rellie's recoveries from BC ... there are so many levels of complexity with anyone's diagnosis ... we can never really compare 'ours' with 'theirs'.
Try not to get ahead of yourself, too - and deal with stuff 'as it happens' - don't try & work out what 'may' happen. Just try & Keep yourself busy now ... doing things you love doing, as this disease mucks with your brain more than your body - so keeping it busy doing other stuff should prevent it 'taking over'! ... For me, it was getting out in my kayak, fishing for bream & flatties as often as I could - out there it is just you & your thoughts ..... and my Ukulele Group! They keep me very busy!
Maybe, look at trying something new, to refocus your energies ....
Take care & all the best for your ongoing treatments xx
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Hello @jconnolly4285 just want to salute your courage in sharing your experience and thoughts. Although I haven’t felt let down in the way you have described, I remember feeling challenged by negative emotions that I felt when one or two people (who were otherwise very dear to me) behaved in ways that I felt fell short. I recognised that I was also at peak fatigue phase when that happened. It was helpful listening to Charlotte Trottman’s podcast. These two were helpful to me and may be helpful in your context.
Season 1 Episode 3 “Showing up and the letting down”
https://www.bcna.org.au/resource-hub/podcasts/what-you-dont-know-until-you-do/what-you-dont-know-until-you-do/season-1-episode-3-the-showing-up-and-the-letting-down-surprises-and-disappointments-in-relationships/And Season 2 Episode 8 “No is a sentence”
https://www.bcna.org.au/resource-hub/podcasts/what-you-dont-know-until-you-do-unlimited/what-you-dont-know-until-you-do-unlimited/season-2-episode-8-no-is-a-sentence-boundary-setting/
Do be kind to yourself your feelings are real and it’s incredibly brave of you to speak up.2 -
Hi @jconnolly4285
Really sorry to hear about your situation - I hope that things will only continue to get better and better for you from here on out. For what it's worth I thought I might give my perspective as the carer and partner of an equally private and incredibly amazing woman who's been diagnosed and is currently undergoing treatment, in the hope that it might offer you some food for thought. I won't comment on the mastectomy side of things - we're yet to cross that bridge - but when we found out about my wife's diagnosis I was absolutely shattered. She is the glue that holds our family together and my best friend in the whole world - as a husband and provider, my biggest mental hurdle in the beginning was the fact that no matter how strong or smart I am, I couldn't fix her. That probably broke me more than anything else and honestly the only thing that helped me cope and become a more helpful carer was actually reaching out to close friends and family for support and reassurance, albeit with my wife's knowledge and OK.
We are a pretty quiet and private family who don't generally socialise or even really know / talk to our neighbours. We prefer to stick to ourselves and don't really go out or do events etc, so our support circle is pretty small. I don't know the circumstances around your family and their reasons for disclosing your condition to others, but I do think it's worth maybe reaching out to those loved ones and maybe talking about and trying to understand their reasons for their talking about your condition to others. For some, like me, it may just have been a way for them to cope and seek support.
I guess what it boils down to is that you're the only one who can truly know what it's like to go through this journey, but those around you, especially those who love and care for you, are also experiencing this difficult season and will have their own way of coping with it all.
I hope that makes sense, and ultimately I could be completely wrong, but either way, I wish you the absolute best and all the healing and happy vibes I can muster. You'll be in my thoughts and prayers along with the many others enduring this difficult situation.
Take care!
George5 -
To everyone who have sent their thoughts, well wishes, support and shared their stories, I am truly thankful. Last week was a low point for me, but just getting it off my chest and having people understand my feelings has helped me so much.
George - thank you so very much for your partner perspective. Wow what a reality check it was for me. My husband is the typical male born in the 60s who is the alpha male, physically strong, very loyal and protective of his family, but underneath is emotionally needy (all the love intended with this last comment). I am the emotionally strong one and I guess I just expect everyone to be the same and just get along with things - No need to share feelings, it is what it is!! But your comments made me stand back and look past myself, and take stock of the fact that is what he needed. So a very genuine thank you.
Every one of you have given me a piece of advice that I am able to directly apply to this journey I find myself in - the podcasts are really beneficial hearing things from someone who has also lived this. I am a true crime podcast addict so these are on hold at the moment
I'm also not going to compare myself to others anymore as this is definitely not helpful or fair to those ladies.
Anyway, I can't pass on enough thank you's. Your generosity in sharing your words of wisdom has moved me forward and I am extremely grateful.
Regards, Jodie3 -
So glad to hear, sending you “hi 5s”!! 🌼🌸🌻0
