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 overid 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
Hi Moomy
your right about the Island, and turning inward into a bubble....I think I. Started to do that...possibly more to protect myself from further external angst....but in return it leaves isolation. You are are it is hard to break out of the bubble and I agree counselling will help....
just before my diagnosis 6 months ago I was seeing a counsellor for anxiety ( delayed grief of my mums death, and a Triple A diagnosis) She was brilliant, and once a week I felt I had an hour where I could be myself, without any fear of upsetting anyone with how I behaved or what I said....work two months ago said I could have more sessions, but as of yet it’s not been sanctioned.....
Support groups....I have found one here and I’m so glad I did....
Hi Violetsniff
find your secret “soft” talents and capitalise.......Viloletsniff that I will....
i too love dancing too, though these days, it’s more dad dancing..lol
but the minute I hear Northern Soul or early Mowtown, I have to dance it’s like the beat just drags you to tour feet.....my feet are tapping now .........
regards
Hi Daylightdancer666
i have worked in social care for over 26 years and like yourself worked with Adults with LD for 8 of those years.....I’m glad you have got a counsellor and believe me they don’t see anyone as daft, without people seeing them, they would have no job...
I have Propropanol for Anxiety, though I only use it when I’m at my wits end.....
anxiety can be very debilitating...I use a technique called EFT emotional, freedom technique also known as Tapping....it. Is easy to pick up but it gets better the more you practice....it’s like mindfulness but physical...
lots of demonstrations on you tube...
Hey d
How aee you doing since we last spoke? The councillor does help deeing her Thursday shes physcolggist not suee if much difference but hey yes i take lorazpam for anxiety if im getting shakey orneith in myself
Does that technique work il haver to look it up
Xxxxx
Villa82 can i just thank you, i've been where you are and am now cancer free but struggling so much with the who understands??
Unlike you i never feel lonely, because i love time on my own but i do often feel alone. People don't understand how i feel and now i'm cancer free i'm better right!!!!
During my treatment my daughters best friend fell out with her because she'd not been to see her, she'd seen her at home (visiting me because she lives away) but her friend was annoyed she hadn't made time to go visit her. The best one though is my twin sister and 2 nieces who asked me "Had i ever for one minute stopped to think about what they were going through" and told me how selfish i had been only thinking of myself. We don't speak much now.
I'm currently off work suffering with severe anxiety so i'm going to take a look at the EFT you've mentioned,
Take Care this place is amazing for support xx
TheScriptFan...
thank you for your reply, but can I say I’m sorry for the way you have been treated by some...
Firstly I too like my own company, and most who know me in the latter years of my life my say I’m a bit of a loner....that’s not necessarily through choice, it’s because I work in social care, I choose to in my own time avoid situations where I’m still in my work role....it’s a matter of survival and staying healthy....
when breast cancer came along I was not prepared for the loneliness and isolation it would bring with it....I am a man in a particularly female predominant zone... of Cancer-that of the Breast.
I feel lonely because I feel Male and female avoid the conversation of my illness....
I truly believe people don’t mean to avoid or ignore me...like many wise people on here have said...it’s hard to talk...or confront.....I get it..
doesn't make it any easier to understand or accept......
what you say about your daughters friend is in my world a typical response....it’s as if life continues without you in the equation..your daughters friend is implying that to her....why didn’t you visit me?......with no regard whatsoever that your daughter is utterly devastated and her mind is on you...and not her friend.........!!!!!!!!!! Sigh sigh sigh...
Then your twin sister and two nieces ,,,!,,,! OMG
I fully understand you ... and despair at how other people come to the conclusion that their feelings are more worthy than yours during this devastating period of life....these people are called a Mood Hoovers......the limelight is not on them, so let’s bring it back....
I can’t imagine the pain that causes you as a twin...it must be horrendous...I have a sibling who is similar.....but in truth....I have made a personal choice to completely ignore anything that person says....
You may well be clear of Cancer from a medical point of view.
..psychologically I already know it’s not likely to leave us.....so I’m not surprised your are struggling now with anxiety....and I seriously hope you check out EFT......practice practice practice....
i listen every day to music....reiki music....binaural music...relaxation music...
because we have to cope.....if we are to get through this...
i will literally try anything to make my life better...and if music fills my loneliness then so be it as well .
stay Strong ScriptFan you can do this you are strong
#You can be the King Kong banging on your chest
You could beat the world
You could beat the war
You could talk to God, go banging on his door
You can throw your hands up
You can beat the clock
You can move a mountain
You can break rocks
You can be a master
Don't wait for luck
Dedicate yourself and you can find yourself#
best wishes
Hi Daylightdancer666
I’m really glad the counsellor is working out for you Cazzy.
yes I believe EFT does work, it takes a bit of getting used to and lots of practice...but there are lots of links on you tube to get you started...
the main purpose of EFT is to focus on the moment not everything else around you.
a sort of physical mindfulness....
give it it a try...
Hey hey d
Yes nil look that up I cant atm because I'm at leisure centre atm waiting for dad he at gym then he taking me to the health centre where I'm getting my zoladex injection and need book my bloods for my next oncologist appointment. How are you with everything any news on treatment
I've heard of that thing when you have panic attack where you are supposed find something you can see feel smell etc
Take care xxxx
RHi Cazzy
Treatment is a bit hard work at the moment...new chemo is not playing nicely...the minuet I think I’ve cracked it and feel half ok....it creeps up and floors me again.....
The tinnitus is driving me barmy....
yes EFT can be used for panic attacks though another technique called Grounding is very good for panic attacks because as you described it’s actually about doing something physical in order to concentrate on that...and not the panic attack
but EFT is just as easy to learn....https://youtu.be/HbTTZlfvjkQ good link here explaining it.
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