Where do I fit in?

[PHBF64]

Hi all/anyone…
I have dropped by to just vent. There are times when only venting will do because if we don’t, then we simply crash and burn.

When BCN said they were willing to have a page just for men with breast cancer, I thought great, a place to talk and share the isolation that breast cancer brings with it in men.

We are a small band of brothers under 400 a year diagnosed each year. Yet even less of those men, come forward looking for peer support. Mainly because they don’t know it exists, and also the alienation they feel, drives them further underground or reluctant to talk.

I recently in June joined another club I didn’t really chose to join
Stage 4 Breast Cancer……

I thought maybe I could partake in groups more in touch with the anguish that diagnosis brings with it.
Sadly I feel even more marginalised than ever.

If I comment on a post, it’s because I have something to say, an opinion a version of my events.

I feel if I write a post, it’s hard for ladies to reply. Nobody wants to be seen as the person always responding to the lone bloke in a forum,
If I comment on a post I do so to offer mutual support to a fellow sufferer of a disease I too have.

I thought it was lonely in 2019 when first diagnosed ,it’s a darn site more lonely now.

If your reading this know I’m venting, it’s in my head so I need to say it….
Forums are based on people with commonality sharing views and opinions , offering peer support advice or suggestions…
Please please please don’t think because as a man I have nothing to say because believe me I have an awful lot to say……sad thing is no one seems to listen….because they certainly don’t reply…

Vent over

Tomorrows another day

D

[Tabby-Lou]

Hi, I am sorry you feel alone and struggle to find a place to fit in.
I personally find it a lonely journey sometimes and some days are certainly worse than others. This is the perfect place to vent and I hear you! It’s better out than in.
I just wanted to acknowledge your post and to let you know that your experiences, thoughts and opinions are just as appreciated as a fellow member of a club that none of us want to be in, and I am sure that I am not alone in thinking that

[sarahc_123]

It is so important that you say what you want/need to say. It must be so hard and I totally understand your loneliness in all this. I’ve just been out on a 4 hour drive on my own for that very reason. I feel unheard by my own family. No one understands what I’m going through. I imagine it is much harder for a man, especially as it’s well known that women talk more and share experiences with each other. I hope you can find some good support here and please, please keep on posting and commenting and venting! No one wants to be in this club and we are all in this together. xx

[The_Plumarade]

Hi my friend. Nothing wrong with venting , as you know , I like a good vent .
I am a bit disappointed that this Men’s forum is not used more . BCN have mentioned it in a lot of places as have a few of us blokes .

[jecs333]

D
So very sorry to hear how isolated you feel and there’s no need for you to explain why you’re angry and upset. What treatment have you had so far and how are you feeling now?
Sending a virtual hug
Jane x

[Cherry38]

Sending hugs.
I am so glad you vented lovely.
It can be a very lonely journey. How are you travelling with treatments.
I am on 4th line in 15 months, never ending, I have mestatic breast cancer. Had more palliative radiotherapy today, i call it spot maintenance .
I have my second IV chemotherapy on Friday. I am on doxorubicin pegylated liposomal.
I have done targeted therapy, oral chemotherapy and 2 clinical trials but kept getting progression so now on the IV chemo.
I had a new biopsy taken and my BC has changed to triple negative. So my biopsy has been sent to Sydney for research. I live about four hour from Sydney so might have to travel again for treatment
Here for you if you need to chat. Take care, keep strong

[Shi]

I’m sorry you’ve been made to feel like this on the forum, I’m sure no one has intended to make you feel this way do keep reaching out because all posts are important and one word can help someone and it may be someone who gets support from the forum but doesn’t join so please know you might be helping others without knowing and maybe guys around the world as the threads are open to the world, you could speak to bcn to see if they know of anything that could help you and also you might want to reach out to metupuk too Shi xx

[Yorkshire_Tyke]

Hi,

I think those of us in the stage 4 camp know how lonely you feel at times. Must be much harder for you in ways i cannot even fathom.

I was diagnosed stage 4 just over 1 year ago and know no-one personally who is in the same situation as me. There are no local in person groups and no soecialist secondary BCN where i live.

Even the someone like me forums are focussed on primary diagnosis.

I have used this forum to rant to at what seems a very unfair situation… i’m sure we all have!

I’ve tried to be supportive and posted what little information i can (based on limited experience) and will continue to do so.

But this diagnosis is very isolating and emotionally draining, a factor that is given little interest by the medical teams.

[PHBF64]

Taby Lou

Thank you, and I hear you too.

Yesterday was just one of those days, what made it worse was seeing posts on FB from my sons MIL, Christmas and New Year’s Eve pictures with all her Grandchildren ( 2 our ours as well though you would never know that)
Her words used were making memories with family….

I’ve never felt so upset in my life, since June last year when I told both my sons I had stage 4, they have visited two or three times, they never mention cancer, it’s like it never happened, and that’s begining to hurt.

So I turn to support groups on line, and often leave feeling more isolated ……

Thanks for caring ( it matters)

Take care of YOU

D

[PHBF64]

Sarah-123

Thank you for your reply, yes I fully understand the family dynamic, it’s very upsetting to say the least.

My Father in law died late September last year. My wife cared for him months prior to this. Now he’s passed her mum requires support.
99% of the time I tell my wife todo what she’s doing……and I support her….occasionally I get upset, not that she’s devoting all her time elsewhere… more because she returns home angry or upset about her mum or siblings, and indirectly I cop for her stressed moods.

Where in truth it takes me all my time to deal with my life and moods.

Thank you for responding, it matters……

Taking long drives helps,but have a destination so you benifit for the time out.

Take care of You

D

[PHBF64]

The-Plumrade

Venting my friend is the safest way to de-stress…….or I’m sure we would go Bang!!!

It is frustrating that our man page isn’t utilised but we’ve said before men are a little bit more closed when it comes to talking health or emotions.

All we do is carry on doing what we do in telling men it’s okay to talk.

We are much more further along with normalising Breast Cancer in men, but we are still light years away from Inclusion……

That sadly is just a fact, but we must keep talking in the hope our stories will allow the next generation of males whom will contract breast cancer, to be more open.

Take care of YOU

D

[PHBF64]

Hello Jecs333

In 2019 had Mastectomy, and Axillary clearance 26nodes. Chemo, radiotherapy, followed but cut short and delayed due to Covid.
Three lots of Hormone therapy’s all stopped, the last one Extamastene caused an Abdominal Aortic Aneurysm to grow very quickly, so stopped and emergency surgery to place a graft over AAA. 2021

2022 after eventually getting a genetics test I found I had brca2 so opted to remove left breast whilst the right mastectomy scar was being repaired .
Then this year in June diagnosed with Breast cancer spread into both lungs.
Initially surgery was going to be the course of action, then oncologist said no….try targeted first.

So I started on Letrozole,Zolodex injections monthly, and 600mg daily Ribociclib for 3 weeks, 1 week off.

Early December I was struggling with breathing, and getting out of breathe
Testing done at the Christie cancer hospital, inflammation to left lung most likely caused by Ribociclib…
So steroids last three weeks, anti biotics, anti viral and anti fungal meds.

CT scan yesterday, bloods today, Back to see Oncologist on Friday.

I’m concerned the breathlessness has returned as I’ve now stopped the steroids, so envisage a decrease in dosage of the Ribociclib….
Plus I’ve got to decide if I want targeted Radiotherapy or Surgery, as treatments to go alongside these new meds.

My head is battered to be honest, but I just try and get on with it all….at times I feel I’m on my own, and maybe yesterday was just one of those days , Avery long day.

Thank you for responding it matters

Take care of YOU

D

[sarahc_123]

Goodness, you have so much going on… Hard with the family too and hurtful re your sons. Stage 4 must be difficult to deal with. I have found my diagnosis all consuming from August. I can be a bit of a pessimist so it’s been tough, even though the outlook is hopeful, I think the fear will always be there. I wish you well on your journey and treatment Take care of you too.

[PHBF64]

Hello Chery38

Thank you so much for your reply. I live in the UK, although at times I get dizzy with travel ( I don’t drive so it’s all public transport) my care is spread out out between 3 sometimes 4 hospitals all about 7 to 10 miles from my home.

Now compare that to your travelling, mine is insignificant, and I can only imagine the additional stress caused by long distance travelling that you have to endure.

I think targeted radiotherapy is likely to be my next avenue on this cancer journey, due to several operations and much scar tissue issues over last few years lung surgery in both lungs isn’t appealing to me at the moment……more so when I’m told it would start off as keyhole, but may become open surgery, and they wouldn’t know until they start, which way it would go……

At least targeted radiotherapy sounds less invasive, and I’ve been assured it will be nothing like the Radiotherapy I had for right breast cancer in 2019……I’m still having physio on that side nearly 5 years on…

Thanks again for reaching out it truly matters

Stay well on your current treatmeant and Take care of YOU

D

[JoanneN]

Hi @PHBF64

I have replied to your posts in the past but my situation is very different from yours now and I don’t have any common experience or insight to share .

I think it’s true that men don’t talk about these things in the way women do .When I’m able to I go to a local BC support group and last time there was just one lovely gent there but if I see him or any other men there I will certainly let them know that there is a place for them here. He was there because he did need to talk / vent. He was struggling with brain fog and did not know if this was the start of developing a cognitive impairment or if it was related to his endocrine therapy . The way he described it was familiar to every woman in the room and we were all able to reassure him that it was almost definitely related to his medication .

It was brave of him to come to a group knowing that almost everyone else would be of the opposite sex and it’s brave of you and the other male members on here to join a forum where the membership is primarily female and to be raising awareness of breast cancer in men.

So I’m sorry that you’re feeling isolated but hope that the replies you have received here help a little.

Joanne x

[PHBF64]

Hello Shi

Thank you so much for your reply.

Yesterday I was ranting about all kinds of Forums I’m on many, I had a pretty off day, and life in general was not being that kind.
Sadly it is true that as a male interacting on a predominantly female health topic on any site anywhere, will by default not get as many replies or responses as other female respondents may…

And that’s both Natural and understandable, most of the time I accept that and move on……just occasionally it hits a nerve and i vent……I’ve even done it on male health forums ….
So just to be clear, nobody on here caused yesterday’s vent.

Facebook sadly contributed to my implosion yesterday…

Many thanks again

Take care of YOU

D

[PHBF64]

Yorkshire-Tyke

Oh thank you so much for responding, you’ve just nailed it on the head.

Yesterday I went to physio at 1 hospital then 5 hours later a CT scan at another, I saw a post on Facebook from my Sons mother in law flaunting photos of all her grandchildren two of which are ours, Christmas Eve all in pjs, and New Year’s Eve big family buffet, and fireworks…her headline was making memories with family…

I’ve seen my son and grand children 3 or 4 times tops since he was told I now have stage 4……where are my memories,?...

On New Year’s Eve my wife distraught by these photos went to bed at 7pm ….so I’m alone with New Year’s Eve, feeling upset and very angry….

I then read on various online groups ladies describing isolation and feeling hopeless,….i was a Samaritan in the past …so I offered support on all thee posts but ……the nature of forums can be at times neagatively crushing…

It’s easy for same sex respondents to offer support, and ladies rallying round other ladies is both common and splendid to see.

Men responding to ladies can be receptive and acknowledged in the manner to which the response was intended. Or it can be ignored or overlooked. Why? No idea

Women responding to male posts, sometimes can be limited.
Some care not to be seen as interacting with lone male members, that was told to me by a lady three years ago in a private message… she said she wanted to respond publicly but didn’t want other people conclude she was playing up to the one man in their group…

GOD give me strenthgh I replied to her……I have the same illness as all others , I have had most if not all treatments as others, and have emotional and physically been as battered as all the females in the group.
I explained I interact solely to seek support fro humans with breast cancer……
Sadly. 3 years on ……it’s the same…only having Stage 4 highlighted it even more so……

I’m still a breast cancer person only now there’s no cure……surely I’ll by accepted. ???..…

You couldn’t bloody write it Yorkshire-Tyke. …Draining is the word that fits it alll…….literraly life suckingly draining…….

All I wanted was to fit somewhere…anywhere….

But as I’ve said tomorrows another day

But thanks for your reply it really matters
Take care of YOU

D

[PHBF64]

Sarah-123

Never think of yourself as Pessermist, what you too, are experiencing is the overwhelming knowledge that even though stage 4 is treatable sadly it is not cureable, That prognosis is terrifying however you dress it up, being pessimistic is often confused with being just Unsure and unhappy with situations. All natural I might add. Unfortunately we can believe we are pessermists because we believe shit always happens to us……

I often feel that way, but then I often think I’m lucky to be here today, and God willing tomorrow….

Though you don’t feel it your more of an optimist than you know, most empathic people are, and you showed empathy to me…

Good luck on your journey too…

Take care of YOU

D

[Tabby-Lou]

Hi, I can understand why you would feel upset by that. I have had a funny relationship with Facebook over the past few years and deactivated it for a very long time!
I went back on after I was diagnosed in June, purely to join a local support group. I found myself becoming increasingly upset by other people’s/friends posts of a seemingly perfect and worry free life (although who knows what goes on in reality)! I came off again pretty quickly as it was affecting my mental health and I was becoming increasingly resentful. Now I feel a lot more at peace with myself and don’t think I will ever go back on there!
I am sorry to hear about your sons, that must be hard for you. Keep venting whenever you need it, I’ve done it myself a couple of times now……mostly in the early hours when it gets too much and you just need to get those thoughts down somewhere and out of your head! We are here and we will listen. All the best with your upcoming appointments

[PHBF64]

Hello Joanne

Thank you for your reply, and yes we have exchanged words before, as I’ve said in many of the replies above yesterday was just a Black hole of a day. I’m so heartened to hear about the gent that attended your group to be both welcomed and reassured by you all that Brain Fog is real, and a contributory to cancer treatments …I’ve still got it nearly five years on….ive forgotten my own surname once ( I can laugh about that now, but not on the day it happened)

I attend a mens group at my local Maggies, and that outlet is great…we don’t always talk cancer, but can do if it’s required……
I just wish more men would attend….but you can lead a horse to water….so to speak

Once again many thanks for responding

Take care of you

D