Hello everyone
Im a new member to this forum. last July I was diagnosed with Invasive Ductal Carcinoma.
I had a full mastectomy in September followed by full axillary clearance in October. Chemotherapy started early December , I’m on EC-P ...3 sessions three weeks apart, then early Feb it will be weekly for 9 weeks.. the Radiotherapy, then Tamoxifen and another hormone drug both for 5 to 10 years..
i have just finished the third of 3 double whammy chemos, and all though I got infects in session one and two...with a spell in hospital for both, my side effects have been minimal. The 3rd session last week was more unforgiving, sinus issues acid reflux, constipation, stomach pain, headaches, scar pain armpit pain.......but the side effect no one mentioned was LONELINESS......
in the 6 months I have had this disease...two people have visited me. Once, and twice....
if I don’t ring people no one rings me, if I don’t visit people no one visits me...my company have contacted me twice in last 10 weeks that I’ve been off during chemo...one to tell me I’ve been over
id again, and the other one was a generic letter saying I had failed to attend a scheduled training day, a repeat of this could lead to disciplinary procedures.... I was more angry that a human person in HR could not input into a computer that I was off work sick....
the loneliness sort of crept in from day one really, the surgeon telling me I had breast cancer, then for the next ten minuets directed all the information to my Wife, as though I wasn’t even in the room...I lost the plot and said ...It’s Me who has Cancer not my wife.........
Then the days weeks and months that followed were littered with, people I know avoiding me, and office full of people who knew, but said nothing, friends not calling, family ring to start then the gaps in between get longer...6 months on no sibling has visited me......
The worst is when you visibly see people avoid you, I watched a person I have known for thirty years cross the street to avoid a conversation.
Then there are situations in hospital, or at events.....when people say “ Breast Cancer, but your a man” “men don’t get breast cancer do they “,......
so then your not only struggling in a very pink world ( and rightly so) but your a liar, or a some kind of weirdo to be avoided at all costs.
Now I am happily married for 30 years have grown up sons and have grand kids......but I can’t tell them my inner fears, the things that keep me awake all night...I can’t explain the pain, the mind numbing confusion I feel or the inner abandonment this shitty illness leaves you with, why.? Because I don’t want to add to their own pain and anxiety.
We have a sister in law with inoperable lung cancer, ( diagnosed three Weeks after me) and a friend of the family with terminal pancreatic cancer......we are surround by Cancer....so it’s no wonder I don’t talk about mine....
so then the loneliness really takes hold......I rang the hotline here today, who suggested this forum so I have done just that...
i had once tried another on line support group, but was told because I was a man , it may not be appropriate, because the ladies of the group needed to feel able to discus ladies issues without concern a man was in the group.....
that reaction was not a standard reaction but I was unlucky to have tried that one first....it knocked my confidence and highlighted I was in a very tiny minority.....
so if anyone out there has tips to beat this loneliness I’m all ears.......
im just glad I could put this thought out there, instead of storing it all up in my already cluttered head.
many thanks
Hello FroggyinFrance.
You have summed it up completely, plus you have the added loneliness of logistics, as do i in a sort of way.My family live all over the UK and one sibling lives in Spain....distance can add to loneliness...
I too have two grown up sons, who at the beginning of my journey 6 months ago were distraught and concerned....but a month later they just carried on with their life...and I get it........
doesn't mean I like it.......they call by to see me and my wife maybe once a week, they ring her regularly....Now if when they say “How you feeling Dad “ and I reply not that great today...their response is....” Stay Positive stop worrying Proceeded by we have just booked a holiday, or we are having anew kitchen fitted...blah blah blah....
me and there mum have spent all our savings over last month just to cope with limited finances...
plus it’s not just the kids...my siblings on the phone talk about extensions, holidays, new cars.....oblivious that they are living and somewhat gloating over their lives, whilst literally ignoring my life and plight...
good luck with the counselling I’m sure you will get great comfort venting to a professional listening ear...
the pink world I entered was very daunting early on...but I have shouted out Blue get it too, loudly ...not to override the pink world, or muscle in on a female dominated fraternity...I want to be acknowledged like everyone else a breast cancer sufferer. ...who just happens to be a bloke....but if I can help raise awareness that blue do get it too ..Fantastic
dont go there with MAN FLU.......it’s crippling....... LOL
Hello Villa82,
Like the others on here, I would like to welcome you to the forum/group none of us want to be in. It's a short reply from me as I am 'trying' to go to bed early (you will notice by the time you have .... if you actually do finish reading my post I tend to waffle - sorry in advance.
I would like to say only the other day I replied to a post where I said to the poster.... be prepared to have plenty of surprises with how people react to you.... my own... a lifetime friend suddenly has disappeared!! it seems at first family's ask but don't really care, they 'just want to know' so it looks like they are interested (maybe I am wrong ). People you think will be there for you 'won't be' and the very people you think won't be there for you, will more than likely surprise you.
I chose not to tell many people about my situation, half I think for denial the other half was I didn't want to become and be know for 'that' first and me second, I didn't want to be the 'poor you person' plus my main reason I didn't want me dear mum to know and the less that know the less chance it had at getting back to my mum.
One thing I will say is men or woman - I honestly think when you hear 'that' word it doesn't matter, who or what we are, religion, colour, sex, anything .... hearing those words effects us mentally all the same .... to me the mental part is just as bad, it could even be worse - so forget what sex you are it really doesn't matter in here - you feel free to talk about everything and anytime and you will see we all do to, the only thing is that sometimes the thread/post might refer to 'ladies' thats us been nice to each other... ladies indeed hahaha - if you do read ladies hahaha we have used it loosely arrrrgh... sorry - no, seriously you are part of us now, part of this group, forum, thread ... like it or not. Maybe the only thing is 'you might need to keep it secret to how clever some of the others are on here', I'm joking.
We are all different here and I am going to say something different to the others (maybe because of the way I handled my situation), I was going to say 'I wouldn't bother with the reaching out to people', you have enough going on, you concentrate on you, keep talking to your family in a way that you are comfortable with and for any of the rubbish stuff, worries or concerns etc, post on here or chat with any of the guys if it makes you feel more comfortable, but like I have said the emotional, worried, lonely side to this is something that I really don't think anyone understands until you have actually heard those words. I think this is why this group works, we all actually get it and what we don't get hahaha Dreamthief always helps us with. With everyone together in this group the information here is fantastic.
Remember too you are just starting on this roller-coaster of a ride, you will get through his and soon you will be part of Hotel California - you will be far done that path offering help and easing others minds as they step aboard (told you I waffle).
If you find problems sleeping look out for the 'AWAKE' thread a lot drop in and out of there any time of the night and day.
There are also two separate monthly threads for anyone starting Chemo or Radiotherapy - you might want to drop in and out of there for tips and advise.
All threads are here with you to join in and ask any questions or concerns, if you like walking, we have even started a walking thread to try to boost ourselves to getting out and actually walking.
Most of all please don't feel lonely, you have now gained a group of nutters as friends.... commonly known as 'Fruit Loops'.
I am stopping waffling now, hope you haven't fallen asleep reading this - offering hugs and a big welcome - never feel alone again'...
Oww and because this will of all happened so quick, you will have so many different feelings, all are nature - you may go from laughing to crying in a matter of seconds and back again. There may even come a point where you will start to grieve for the person you was, all this is okay, just keep it in mind you will get through this, you will be a better person the other side of this and you will see who you really need in your life and how you don't ..... don't feel sad for any of it, it is what it is and you are blessed that you will know see people for how they truly are. (I'm waffling again).
Right, I am going - keep posting and remember, 'we are virtually real' we really are, so you never need to feel lonely again.
Nighty Night xx
