Hi rockstarchick, I think people get a bit miffed when I mention that adults deserve to have special days organised for them by charities as much as children do. I read on a previous post about how children can see their parents as indestructible, but children actually cope with their condition better than adults sometimes as they are less likely to see it as unfair or ask 'why me?' But this ridiculous concept of soldiering on with the stiff upper lip continues unchallenged as if it is the best thing to do for adults. Maybe if we did buck the trend there would be less stress and worry to meet expectations. Having Asperger's syndrome I am not afraid to speak my mind and say I can't cope I need help or I am just not gonna do it....
Try you might be surprised and they can help anything is worth a try I’m having final check up tomorrow 🤞as I need to go on letrozole feeling rather nervous tbh I don’t know why but my breast care nurse arranged it bless her as saw I needed it . We have to try everything and I think then if nothing seems to help we have to find a way to cope I’m sending big hugs to all you lovely ladies xx
I'm with you Delly and would prefer to see somebody face to face and chat etc.
There doesn't seem to be much in my area and have to travel for any help. I was thinking of going to one of those mobile vans Macmillan have. I went to the hospital near where Rockstarchic mentioned but don't live near there.
Rockstarchic - That's great you volunteering for BCC. I'm so with you on Breast Care nurses. Mine were a so lovely, always wonderfully helpful and supportive. Even these years later, I still have a huge warm "Thanks" for them in my heart. Bless 'em. Three cheers for the Rochdale and Oldham girls, and BCNs everywhere. I'm sure it'd have been a darn sight more difficult to get through without them.
Juliewulie - I was going to say, maybe your local MacM may be different, but you mentioned being in the same area as Rockstarchic, are you?
I also attended a large and well attended, breast support group, attached to the hospital, for a while after my first BC episode, 2006. I don't know if such groups still exist these days? So much is done "on-line" with anything now, as opposed to face to face, rather than direct contact. That isn't that I'm not appreciative of this Forum and such places. I truly am. Think they are great extra place in their way, for contact, support and advice, especially as you can reach anyone in the country, world. But maybe I'm old fashioned, in that I still prefer to be able to physically meet other fellow women in the flesh, who'd been through it in various different ways. found it invaluable to be able to talk with, laugh with, sob with, have a big hug with. Physical bonding, as well as mentally, that's isn't just through the ether.
I never attended "Moving On" courses, there weren't many such around then, But I would have. Not just for the helpful content of the course, but equally importantly for that physical meeting up with other fellow women.
Technology has its advantages, but I strongly feel its removing much of our all important human face to face physical contact. Doesn't surprise me that so many more kids are suffering with depression, adults too. Every where you go, kids and people generally, have their faces in their phones, or earplugs in, walking down the street, in hospital waiting rooms, heads in computers on trains, buses planes. They and we don't seem to interact, chat with our other humans the same as we used to any more.
Sorry I've gone on (nowt new there Delly!! ). Lots of love to everyone xxxxxxx
We could have had our operation at the same hospital and even have the same BC nurse??
I was thinking if contacting Macmillan as they're in my area soon but unsure now.
I live in miskin and have amazing friendship with BC nurses by me if ever worried or stressed she is always there to answer my questions . Macmillan offered me no support whatsoever . I am also a volunteer for BCC and do lots of fundraising which gives me that feeling of giving back . There has to be something which isn’t covered which could help all us ladies because although we move on something still makes us stand still xx
I do that too love to sing and my car isn’t retreat so I am with you on that . I work in a nursery and act a bit bonkers sometimes I get the children to run around the garden and yell and get rid of energy they don’t realize it’s a good release for me to . We all have to vent my other favorite thing is walking the dogs while listening to music . So I agree we all are polite but we do things to get rid of that frustration xx
Yeh Wonky - You let rip girl. I used to hate the Ffffflip word until BC. A good friend of mine said it's "good" for you to swear - what a wise woman. Sorry you've been having such a tough time with it all. How are you doing with Buster? Knitted Knockers get a lot of praise from people, should you need something more light weight.
Annie - Ha ha hee. I chuckled at your smashing jars, you mad woman.
Nettie - Annie has the perfect solution for any "bottling" up.
Keep kicking that BC butt girls, or chucking jars and bottles at it.
Lotsa lurrrrv to everyone x x x x
Hi Wonky! Thanks for your reply. I am not angry all the time I was just explaining my coping strategies for it which I have to say help me a great deal so I would definitely say that it is therapy of sorts 😃 I won't pretend things are easy however, I have Asperger's syndrome so I can sometimes be a bit outspoken on some issues as I have a strong sense of justice and fairness in everything. I found it a struggle meeting the expectations that I should just carry on the same as before my diagnosis as if it was some adversity which was now over. Unfortunately the fact is that BB is NEVER over! I live in South Wales where there was very little after treatment support. My boss refused to let me go on the Moving Forward course as it was on 4 Mondays which was our most business critical day! There was a local group once month run by a very nice lady which I attended for about a year until she had a stroke and could no longer do it. After that it became what I call a 'sewing circle' of 4 ladies who were all very cliquey and excluded me from any of the social events by making excuses. Ironically however they would always tap me up if they were fundraising 😠 There are no Macmillan facilities in my area I think it is more Tenovus which only run a choir as far as I know, other support only seems to be for children. One good thing to happen recently is that a Maggie's Centre has opened in Velindre so if I really needed support I am sure bI could find it there. Sending hugs x
Hi Oldspice, is it safe to come in? Lol. X. I'm sorry you feel so angry. But we are all different and 'better out than in', I say!
I posted separately about MacMillan Move More, it's really worth a try; I'm blown away with what it has to offer, which doesn't (even to a cynic like me) just consist of some exercise classes, it seems there is all sorts to choose from and most importantly not a wiff of platitude. I honestly think if I said I wanted to let rip on a punch bag, they'd sort it so I could. Safely. Give it some thought, maybe? The lovely guy who is my 'personal trainer' ( fear not for him, I'm not a cougar) seems so clued in on how I feel about what happened to me, I really think that out of everything on offer, this is the one that works for me. I'm chuffed to bits as it has dawned on me that winter will affect my mood and I can't take comfort from a duvet forever.
Interesting article in The Times today. (Page 5) headed "Ribbons make breast cancer too pink and fluffy". I appreciate many get a lot out of the pink thing, so no offence. Fascinated to learn it was devised by a cosmetics giant, but I digress. Moderator on here may not be too pleased I reference the article, as Breast Cancer Now refused to comment, to The Times. There is also a side piece by Jessica Pryce Jones, which I think is excellent.
Best wishes. Wonky X
Hi Old Spice here. I have enjoyed reading this thread and empathise greatly with the sentiments aired by you all. My way of letting off steam is to say or shout out loud the things or people who I hate at that moment - works wonders I can tell you but wish I also had a punchball I could swing at too😠😂 My recurrent rant is the British obsession with the stiff upper lip put up or shut up attitude. I have mentioned on other sites mainly Mission Remission on Facebook that like children adults need some TLC and time out after their treatment ends and beyond (such as a charity or organisation which arranges outings or proper feel good activities to lift the spirits) Unfortunately I only get met with radio silence which speaks volumes as if to say how dare you - get your big girl pants on and just carry on as normal, we're British i.e. polite and proper! So I guess a few token exercise classes and make up sessions is all we can hope for....
Look Good Feel Better.
Well that is the mantra. Personally there is no mascara in existence which can compensate for what I have been through. And it all seems like more platitudes, lip-service and a waste of my energy-reserves. But I am eternally grateful for being enlisted and being given lots of beauty products, the vast majority of which I will be passing on to others.
Wonky is in a very negative mood, sorry ladies.
Hi Flint. Great post, great name. Love it and the more laughs we can generate on here ( in my opinion). X
Well, not sure what would be a suitable sound track for meeting your prosthesis for the first time, but here it is, sitting next to me on the sofa, in it's very smart box. It's weight is quite a shock, brings home how much had to be removed to get the margin. (And I had a lumpectomy, not a mastectomy, so my heart goes out to ladies who have a bigger, heavier prosethesis). But as a new member of the household and someone I shall be very close to, yet only needs a warm soapy wash and putting in it's special bed every night, I shall no doubt grow to love it. And the added bonus of no vets bills Still undecided on a name.
Keep singing ladies.
Hi Girls, it makes a lot of sense that being alone in a car with the stereo cranked up is 'good therapy'. We are 'in control and in a safe 'bubble'. Drive carefully my lovelies. I'm thinking music is a big release; crank the sounds up and dance with the hoover. I just post as this twaddle that I spout comes into my head, but you know what, maybe disco therapy for BC girls is an idea?
So, back from counselling tonight, seems to be making a difference, though not sure how. Have 'meet' with local 'cancer-focussed'exercise group leader lined up. My I'm a busy bee!
No sign of prosthesis but not getting hopes up after realising BC Nurse was not overly switched-on. Shall raid the old sock drawer if needs be. They promote exercise classes but don't equip you with the thing you need to make you look 'normal'. Oops sorry I'm getting grumpy but I'm supposed to be 'proper and polite'. Sooooo, biggest singalongs for me:
Elton : guess that's what they call the blues, cos I love the riff 'rolling like thunder' .
Brian Adams - pretty much everything he has ever done.
Rod Stewart- Mandolin Wind.
Keep it rolling girls! Wonks. X
Ha! I once knew a choirmaster whose mantra was ‘every note is a valid note’ so don’t knock your singing talents ladies! Maybe we should get together and form a group : Wonky and the Bad Ass BC Ninja-ettes 🎤 🎵
Wonky - really pleased to read that you don’t need a bone scan, but sorry you were put through the worry. You did really well not to let rip at the caller. 😡
Kazglass - I am like you, loud music in the car or at home (preferably when I have the house to myself) helps frustration. I can’t put the roof down on my car so no risk of scaring people at traffic lights - although they can probably still hear through the closed windows 🤣
I have a good way of getting rid of my frustration put the roof down on my car, rock music on radio and sing very badly at the top of my voice just have to rember to stop singing at traffic lights as I migh scare people. So if anyone sees a green mini, with rock music on full volume just cover your ears as the singing will be very out of tune
Is there any wonder we become little potty mouths 😳
(apologies to those who don’t for this generalisation)...
Had a call from hospital today to say I don't , afterall , need a bone scan. I was "proper and polite". The caller made no attempt to apologise for her colleague putting me through this additional and unnecessary worry, so I stand by my original post!
Going back to the original post, I scream and shout blue murder in the car and when I am travelling on my own! No one can hear me and I can let off a lot of steam. By the time I arrive at my destination I have usually composed myself, I had some counselling and learned some grounding and coping techniques which do help also. We can’t keep it bottled up, that just causes us more stress - so let it out!!!
If you 'drill back', you can see this particular post attracted 166 'Views' and to date 8 responses, which include me a 2nd/ 3rd time around. To my mind, there are women out there who have very valid comments and experiences, but just don't, or won't post their thoughts., depriving others of their all important insight.
I think it’s great that you started this post - you’ve got some great replies. What a great place just to be able to offload and also see some humorous replies - rather than a post on a particular topic.
But I’m curious - I can’t see how many people have read comments, I used to be able to until the website was updated a while ago. Where do you see how many people have read them?
I guess often people use the site for information, but don’t either want or need to add anything.
Hugs to all the ninjas reading this! Xx
Ladies, this post and the original one, may seem provocative, but the core purpose is the more open dialogue the better. If you ever run down the list of postings, you may have noticed that some get hundreds of 'reads', yet very few responses. That may be because the topic is irrelevant to you, or it may be because you are 'too proper and polite' to post a reply. I am not advocating bad language or disrespect to anyone ( I do advocate humour) however the impact of diagnosis, treatment and what follows could be far better understood by this charity, if more people gave their thoughts, rather than using this site in a purely voyeuristic way.
The proof of the pudding awaits me x
And a flipper right back at ya Wonky! (Or however the young ‘uns of today say it 🤷♀️👵🏻)
I think it’s unbelievable sometimes the strength we ALL have to find sometimes ... and somehow do!
Ladies you have cheered me up! Kaggy your Mum sounds like the 'da bad ass mama' and made of stronger stuff than me. To be honest I'm not actually sure what a 'ninja turtle' is but I raise a flipper in salute to her and all ladies on here who see the point I am trying to make. Wonky x
Got to be those ninja girls or we’d never make it! 🤯. Where else would you find perfectly sane people actually holding their arms out so toxins can be injected in, and then, upon command, lay perfectly still whilst being bombarded with lasers! We’re all walking bleeding miracles. Being treated with anything less than respect and admiration is a big no no in my book. 👍😇
My mum who is 81 had a very large sarcoma removed 2 years ago and although suffers from side effects of the op has defied the odds rather. Previous to that I never heard her swear. However she now says S**T regularly 🤭and says anyone with cancer is allowed to! So if mum says it’s allowed then I figure we are all allowed. She would love being called a bad ass ninja cancer fighter - after I explain the phrase to her! 😁
Wowza. Maybe we should create a ninja army of bad-ass-bc- girls! Seriously though lovely Anniej, moderators would give us short shrift if we went OTT. But, to test the waters (following another day of disbelief) ..
what the f, diddy f happened to me six months ago. Love your reply; so candid and honest. Hug x
On here, Wonky, that’s the place to do it! Just come on here and have a bloody good rant, girl. 🤣 I used a journal to write my swear words down. It’s amazing how many f**k’s fit on a page !!! 😱 You know all those bottles and jam jars you are supposed to recycle ? Quite satisfying when you just smash them.....oh dear! X
The days when you feel like swearing, screaming or throwing something.....
but nowhere to do it......