Who have you told?

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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.  :)

 

Seren xx

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Hello Seren,

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? :slight_smile:

Cathy x

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I’m so with you. I have answered so many people with “I’m fine thank you how are you?” Then not said anything else. I had one friend who left work to start her own business as a childminder last summer. We have met a few times but she was known at work to be a bit of a drama queen. Eventually I had to cancel three times over the last few weeks so I told her. She immediately phoned me but my phone was on silent. When I listened to her message she was crying!!! So I ended up looking after her. Inside I was seething which I feel very uncharitable about.
Tomorrow I’m back at work after half term and I don’t want people to know. I don’t want them to treat me any differently to before, selfishly I don’t want to keep hearing how I’m strong and must stay positive. I don’t want people who are just colleagues giving me hugs and saying how sorry they are before they dash outside for a fag during break time. I do know there will be a lot of comments made by the ‘have Friday or Monday off every other week’ brigade cos I’m rarely off. I’ve heard them lay into other people behind their backs. But it is my battle and my body. When I phoned my mother in law and told her the biopsy showed it was cancer she said I’d have to ring back later as she was cooking dinner!!
My family are in Leicester and I only see the non immediate ones once or twice a year. Me and my mum decided we’d only tell them if it became necessary. We haven’t even told my 95 year old grandma who only moved into a home last June as she is quite deaf which would mean shouting as she refuses to wear her hearing aid.
Plus I’m all out of telling!! I’m not coping but like you am a good actress. Maybe if I convince everyone I’m coping I will I dunno xx

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Hi Cathy so sorry you’re here too. I’m also very new and finding my feet. I first posted last Tuesday but seems ages ago now. Best decision I ever made to come on here. I’ve officially divorced Auntie Google as I’ve learnt that breast cancer is so individual and the best information is from others who understand. It’s a minefield of emotions hasn’t it? Love and hugs xx

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Hi ladies,well done for making your first post Cathy!!!Interesting topic “who to tell”,been the subject of many discussions on here .Having go to know pretty well quite a lot of ladies going through the same thing ,I have concluded that there is no "right or wrong " when it comes to who you tell and when you tell,it is a very personal thing and you need to do what feels right FOR YOU.Some people sing it from the roof tops ,others I know have kept to a one or 2 people.I am a very private person and I hates the idea of people knowing my very personal business so in the end I told a handful of close friends , 2 work collegues and my brother .The vast majority of people who know me (including some close family) do not know I have been through this.I found telling people very very hard and very upsetting ,I also found that some people reactions were quite disappointing and yes "the platitudes " “you are a strong person”,"stay positive " make you want to throw up !!!I am glad in retrospect that I kept it this way as it meant most people around me just treated me normally ,which amongst the madness was rather nice!!!I didn’t have to have chemo so I could be a lot more anonymous,saying that one lady I used to speak to on here managed to get away with telling her very elderly Mum that she had alopecia.It is a very personal choice.Good luck with whatever you decide.Jill.

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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.

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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 :slight_smile:

xxx

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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.

Cathy x

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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! :smileyhappy:

 

Good luck everyone.

 

Ruth xx

 

 

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Oh my goodness Ruth I can imagine the heating scenario not comfortable at all! Especially with a wig on and head going sweaty. Knowing my luck I’d end up looking like that guy we all knew as a kid who had his wig on cockeyed!!

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Good luck with work Bottyboo,I found it very tough getting through the 3 weeks at work before I had my op,I was falling apart on the inside ,but couldn’t have coped with the feelings of others as well as my own.Was glad to go off sick and be able to just deal with the cancer.

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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

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Hello Ladies,

 

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 :wink:

 

Ali xx

 

 

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Oops,that wasn’t very helpful !!!Ali,I really resented the fact that I had to tell people I really didn’t want to share my private business with.(eg managers at work).Very hard to ask people to keep "secrets " for you though and I’m always a bit paranoid people will find out in a way I can’t control .Jill.

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Thank you Jill work was OK although I had a mini internal panic when I was covering one of the classes and a little boy who hasn’t been with us long was hacking and coughing all over me. Have asked to not do a whole day cover on Thursday as mine not really one hundred per cent there. Have shared with immediate team and my key stage manager but both head and deputy off today. However have an appointment in the morning so had to tell someone

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Ali I feel your pain. I have one brother and sister in law I’d rather not tell but their kids are at the same school as my son. However in your case I would say to your dad in law that they would be unlikely to ask but if they did tell them to ask you yourself xx

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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

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It really is a personal choice but I found that even keeping it to a select few I have had to have conversations about cancer when I really didn’t want to talk about cancer and had to grit my teeth while I answered questions I really didn’t want to answer.On the other hand at times I have been so grateful for the moral and practical support from friends too.I likened it a bit to "who would you tell if you found out your husband was having an affair "!!!You would only tell people you trusted to be sensitive with your feelings and supportive no matter what you chose to do .You may have to tell line manager if you needed time off and work and find an age appropriate way explain to your kids why you are upset,but you wouldn’t want to talk about it with random people at Sainsburys !!!Maybe I’m a bit odd???

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Hello again lovely ladies. Well I’m sorry to hijack your thread Seren but this seemed to match the problem I have at work. My headteacher called me in today when I got back from my appointment. She wasn’t in yesterday are her husband was having a minor op but nobody knew until we got to work. Because I had an appointment booked on Friday for today I had had to ask my key stage leader as the deputy was also off sick. I had not had my diagnosis before we broke up for half term and although the head had said to text her I decided I would rather tell her face to face as we’d never had a text conversation before. Well by the time I got in my manager had told her. So she calls me in to discuss how I want it handling staff wise. Do I want her to tell them all? I said my immediate team (early years) know as do two close friends and my manager. Trouble is I know that some staff can be awful when people are off despite them having plenty of time off themselves. She said it would be better for people to know the truth. My issue is I don’t want people who are basically colleagues coming up to talk to me about it and I don’t went treating with kid gloves. If they are going to moan I won’t be there to hear it. It’s a classic case of too many women in one place. I avoid the staff room like the plague as it is cos I can’t be doing with the gossiping behind people’s backs. Don’t get me wrong I’m not a pious whiter than white paragon of virtue but it really does go too far. The head said she would ask them to respect my personal space. She then called me back to tell me to keep my chin up!!! I have toyed with the idea of telling her to tell them Monday when I’ll be having the op. I don’t even know why I’m getting so worked up about it but she wants me to go in first thing with by answer?? Xx