Emma there are plenty who don't know about me, I was fortunate to not need chemo so it was easier to hide, my boss and work colleagues and close family and friends know but many don't including some family, I've never mentioned a word on Facebook and forbid anyone else to, it's not about being embarrassed about it but more as Jill said about not wanting it to be the topic of conversation everywhere I went! im happy to talk about it but just not all the time! Xx
BottyBoo, I'm so sorry that you're being put under pressure at a time when you need the pressure taking away from you - not heaped on in spades! You're being more than reasonable by trying to see the situation from all sides, but, for me, the bottom line is that what you want should be what happens. Wish I had some great wisdom for you, but I don't. Hopefully one of our fellow ladies will have.
Will be thinking of you tomorrow x
You really are a lovely lot!! 🙂 :). Thank you for the replies!
I thought I was probably a little bit weird keeping it all mostly to myself and only sharing with a very small number of people, so pleased to read others are the same!
As Jill has brilliantly said I think keeping it close was to avoid long conversations, answering questions that I really didn't want to answer.
I've managed at work to just get away with telling my boss for now. I spend a lot of time out of the 'main' office anyway, so, so far thats been easy to carry off.
We/I have kept it fairly contained to very immediate family (mine is very small) my the team that I directly manage as I have bozzing backwards to the breast clinic for a bit and my manager. Once we had an idea of where we were going told the children so I am sure it will filter through the school soon but am not broadcast it at all x
Ooh, this is hard. Just saw this thread and thought that at the time I was diagnosed in October I couldn't see such a thread with this dilemma. I'm having chemo before surgery and radiotherapy and just finished 6 x FEC-T. Apart from my manager, director only immediate family know (10 people which is plenty by my standards). Our two young kids don't know. If we told them I know for a fact that all the school parents would know.
When I had my first treatment another patient in the hospital who was at the end of her 6 treatments spoke to me and hubby and she mentioned telling her friends was for her not a good idea as she was not able to have an ordinary conversation without people asking and they wanted too much personal details that she simply didn't want to share. So at this time none of my friends know though I don't have a big circle of friends. In the early days my sister in law would ask so much about blood counts and scans and she knew which scans to discuss as well! She's taken the hint that I only discuss when I want to.
I wear a lace front wig made of real hair everyday - it's held with a special adhesive on the front and I sleep with it on. It's brilliant. At first I wore the tell tale turbans when at home as I've been able to work at home but I knew it was a matter of time before someone thought "I wonder if". It's a personal choice I know but if I'm honest no-one can truly understand what I'm going through unless they've been through it and I find this forum provides the additional support I need.
Also, if it helps others who recently started I've tolerated both FEC and T quite well. I've had the main SEs such as tiredness, aches and pains with the Docetaxel and constipation throughout the treatments, and thrush, plus aching neck and throat. I have painted my nails dark from cycle 3 and to be honest I needed to because they were starting to discolour - it does help. Also the treatment really dries out the skin so at night I use facial oils and slather on Epaderm or Diprobase morning and night on hands and feet as skin was starting peel off.
This has been a really tricky thread to answer. When I was first diagnosed I told many of our close friends and my parents and dad-in-law (those people whom which we really could not hide it from). I also have family abroad and so after a chat with with one of my most pragmatic Aunts - she advised not telling everyone over there otherwise they'll be wailing and weeping (all very Mediterranean) and calling us every day to find out wtf is going on, we'll probably let them know after the treatment has ended.
I did share it with some of my close relatives here in the UK especially those who have been touched by BC (strangely enough only on my dad's side of the family) and all have been very supportive and all still here!!
The fly in the ointment is my husband's brother and his wife. We don't really have the best of relationships and in fact my sister/brother-in-law didn't even tell us that they were expecting their second child until baby arrived. The annoying thing is my dad-in-law wants to know 'what to say in case they ask' - my instinct says that I don't really want them to know - but I don't know. Any suggestions? Of course I'd love to tell them just to eff off but that might not go down well 😉
Sorry you had to have an extra breast biopsy but yes I've read on here that it's not that uncommon and it's best it is checked out.
The waiting for results to come through is THE worst - too much time for your imagination to go in to overdrive. (I've got a wait of five weeks going on right now).
Good luck for the 2nd - hopefully you'll post again before then though. 🙂
Thank you, Seren. I agree that if chemo were to become part of the equation, then that would altar the decision not to share what's happened/happening.
Just got home from having the (ultrasound Microbubbles) sentinel node biopsy. Also had to have an additional breast biopsy as the MRI last week flagged up another suspect area. I was disappointed but felt a little prepared for this, as I'd read so many posts about this being a possibility after an MRI.
Results on the 2nd March. It's going to be a long week til then x
Thanks so much to everyone that replied! 🙂
It seems I'm not alone in keeping fairly quiet about the BC.
I don't know anyone that has been through Breast Cancer, so I don't have anyone to talk to in my real, away from the forum, life.
If I do have to have Chemo then I will be forced to tell more people.
I loved reading all your stories - thank you for sharing. I'm going to go with the "Yes I'm fine" route at the family lunch, I think!
Welcome to the forum Cathy - great first post! 🙂
Factor in that my mum, because of the Alzheimer's, often wanders into my bedroom when I'm staying there having forgotten I'm there I've had to wear a sleep cap as well in case she catches me bald whilst asleep. At least I can see the funny side I guess. xx
I've been pretty open with close friends and colleagues. Once I knew I was having chemo and likely to lose my hair I decided I would rather be out in the open about it than have to face people at random and it possibly be embarrassing for them and me. I've been doing some part-time work in the last few weeks and have been into the office a few times. Some people knew I was leaving to have surgery but nothing more than that but when I've been into the office post-chemo in my turban it's obvious. I have preferred to be straight up with people and say what's been going on rather than ignore it but mostly because I think it makes them feel better and more confident in approaching me. I've certainly apprecaited the colleagues who have come up to me and said they are glad to see me rather than those who have stayed away perhaps because they are embarrassed and don't know what to say. Strangely I've found it's mostly been the younger colleagues who have been the best at handling it and most sensitive.
Same goes for a few of my neighbours. I had my first lot of surgery two weeks before an annual street party I usually help to organize and so a few of them got to know because I could not be as involved this time (luckily I was well enough to enjoy the party itself). I have been truly touched by how kind my neighbours have been in offering help, lifts to hospital, running errands etc. I live in London which doesn't always have a great reputation for neighbourliness but that's not been the case in my experience. Despite the cr@p that is BC, my faith in human nature has been restored in many ways.
The only person I've not been able to tell is my mum as she has Alzheimer's and I think it would upset her too much - that's been tough, both emotionally and from a logistical point of view in hiding the hair loss from her. Especially wearing a wig/hat when visiting her and coping with the chemo hot flushes - my mum has her central heating on more or less 24/7 so that's been a bit of a challenge!
Good luck everyone.
I think you're right, Bottyboo, about needing the support of people who have been or are going through the same thing. I really hope though that going through this experience will help me be more understanding and therefore a better support to others in the future. (A silver lining to all of this.) I'll hopefully know what to say, and more importantly, what NOT to say.
Well I think I might be the other end othe scale! (well not quite)
When I was diagnosed I had my husband with me and the next people to know were my kids who live away from home (aged 21 and 24) and my mum. Closely followed by close friends who knew I was going to find out my results and the secretary of the school I work at who also knew I was getting my results.
That evening my husband rang his mum and sisters (who passed on the news to their families) and I messaged close friends who I knew would want to know (as I would have wanted to know if they were going through it too so I could offer my support).
The next day I went into school to see the head teacher (who is amazingly supportive anyway) to let her know what I knew and when I was likely to be off and for how long. Then I went into the staffroomas it was coming up for lunchtime and basically said - well its not good news! The thing is, we're a close knit staff (about 30 of us) but we are really supportive of each other as working in a school can be really tough. So it's not unusual for someone to have an emotional breakdown and the rest of us standing strong beside them and building them up again. So it was natural (if not a bit scary) for me to let those of them in there at the time know, and then the news to filter down.
I live in a small town, although I wasn't born here, I've been here 23 years and news filters out, but I don't mind. I know 3 other ladies going through the same here at the moment, we're about 3 weeks apart from each other and although we're not friends with each other, we have mutual friends, so we know how each of us is doing. I can also name 5 others who live locally whohave gone through treatment and have reached various landmarks - over 10 years for the lady who works in our local Boots, and over 5 years for 2 others. Because I find this comforting and positive to know and see other ladies living locally getting through this and carrying on with their lives, I hope that is 5, 10 and more, there will be someone who will know about me and take comfort that there I am, doing my shopping in Tesco like normal!!
But, despite all of these people knowing, the only people who know about my really crappy days, my emotional rock bottom days and the finer points of chemotherapy (!!!) are my husband, my mum and you amazing ladies on here. The others know it's tough, I'm overwhelmed with offers of supports, flowers, cake and actually had 'meals on wheels' one night when my husband was away, but there are some things I want to keep to myself.
Now whether I'd be the same if I worked elsewhere or lived in a big town, I don't know!! Plus we are all different personalilty wise and I think it's important for us to deal with it all in a way we feel most comfortable 🙂
When I was diagnosed - two years ago now - I first of all told a friend who had had the same experience but 10 years previously. She was very matter of fact, sympathetic but not all over the place (she's not like that anyway). It certainly helped me to view it as a 'blip' to be overcome. Her on going support was practical advice, re comfy bra, resting when needing to, etc. By the time I told my family - just a brother and his daughters - I was quite composed and realistic. I guess I was fortunate in that they showed concern but not overly so and it helped that none of them live locally to me.
Other local friends were so helpful during the radiotherapy period by popping in with pies, casseroles, etc to save me having to cook after an 80 mile round trip to the hospital.
Two years on it is all a bit of a blur as though it had happened to someone else. I wish you all well as you face whatever is ahead and can only advise that you use this forum to the hilt - it, and the mainly, ladies on it, are worth their weight in gold.
Your question has come at a good time for me. I'm a relative newcomer to the BCC forum and have found it the most valuable support as your and everyone's' posts have given me so much information about the reality of this medical condition.
I come from a small family, as does my husband, and geographically we're not close. Partly because of this, and I have to admit to being the proverbial swan (all calm to the outside, and anxious inside), I've told my mum and dad, brother and line manager at work (as I had to explain why I needed time off work). This is going to sound mean, but my line manager is driving me mad with the repeated platitudes (I smile and appreciate she's meaning well).
Another reason for not telling many others is that at first I was diagnosed with Pleomorphic LCIS which meant a WLE and I thought that would be it treatment-wise, so I didn't want to worry anyone. (Or do I really mean that I was in denial a little bit?!) They then found small dots of invasive cells in the removed tissue, so I've just had an MRI, SNB due tomorrow, then sentinel node surgery and radiotherapy.
I told my children about having the WLE ('it's just the removal of dodgy cells') but haven't wanted to worry them with the latest stage. They're 16, 12 and 8.
Sorry for rambling on. Can you tell this is my first post? 🙂
I'm not sure if it's just me but I've only told an extremely small number of people that I was diagnosed with BC. My diagnosis was back in December.
Husband, son, three very close friends and my boss at work - husband's boss knows too. I don't have brothers/sisters or parents.
All our family, there are a lot of them, are all on my husband's side - we are close to a few but they all live in different parts of the country. Apart from a few get-togethers each year, we communicate mostly by phone. None of them know - when we talk, I say, I'm fine ... that old description, that nearly always means the complete opposite.
I don't want to tell anyone, unless they need to know but I don't really know what I'm afraid of exactly - maybe that they will treat me differently (they would, of course). That they won't understand (they wouldn't). I also hate talking about it, to the people I have told.
I STILL feel in many ways that none of this is real - actually happening to me. Bizarre, I know. Probably, because I've only (ONLY!) had an MX, no reconstruction and am taking some hormone therapy. Currently in a 5 week limbo land waiting on results of Oncotype-DX test to see if I would benefit from Chemo or not.
I'm sure Chemo would make it totally real and I'm terrified of Chemo.
My husband thinks I'm dealing with all this very well (the early days were awful but I kept it to myself). I'm not dealing with it though, I mostly block it out - as if it's not happening. Weirdly being quite successful at that, for now.
Interested to know what others have done re telling people. We are due to meet some family in a few weeks (before my test results) - part of me thinks I won't go but I'm a pretty good actress so I could get through it I'm sure.
I'd love to know what others have done. 🙂