finding it hard to tell people

Hi all,

I have told all close people and been able to do that via txt which is great. it helps that its broken the ice so to speak and I don’t feel under pressure. I have enjoyed being able to talk to others over everyday life without them knowing and thats been fine. My idea is that they are just people I bump into like parents at school so I don’t need to tell the world.

Now chemo is due to start and my hair is going to go - so I feel like my cover is blown. I have tried to tell a few mums at school so it gets around but I hate being centre of attentions plus I just can’t say it. Its like I try even practice how to bring it into the conversation but just can’t do it. Slightly because I get emotional but also I don’t want people to treat me differently.

sorry for long ramble just not sure what to do.

Hi Snotty,

My advice is dont try to plan. You’ve told the people you wanted to and thats whats important. You can’t plan how and if you will tell others. I told everyone I wanted to and, embarressingly, a relative stranger who lives a few doors a few weeks after surgery when I bumped into her in the supermarket feeling rubbish. I also told loads of people I hardly knew - mainly work colleagues I was crewed up with whilst on an attachment in that “lets chat and get to know each other way as we are in a car together for the next 8 hours” way you do. I found that very easy but I am sure they didn’t.

As time has gone on I have told less and less people as I have been too busy learning to live with where I am now. Interestingly other neighbours that I know a bit better found out from the other one and came over a few weeks ago with cards and flowers and choccies. News travels. I am glad they know but as time from initial dx had gone on and I only saw them whilst unpacking the groceries I found myself thinking "what can I say? Hi, (wave), I’ve got breast cancer!? It just seemed awkward.

As far as school goes I have never been a playground chatty mum apart from one or two who I know as friends anyhow. My daughter asked that I not go to school without hair and I have been very lucky to find a fabulous wig. It has been tested in front of small children and a very old man and not one has said “WIG!!!”. A few people and teenagers have commented that I must have had my hair done! I can therefore go to the school with my wig on and no-one has to know. Funnily though my daughter has told her friends that her mum has BC and is now bald and wearing a wig, even pointedly saying - don’t stare at her, she’s wearing her wig (great - what was the point of me wearing it LOL!) so I guess they may well tell their mums but I don’t really care because I have no relationship with these women.

If I did I would have told them or the grapevine would have or will let them know and they can deal with it how they like - it doesn’t matter to me.

People will always find it difficult, some easier than others and some will make inappropriate comments because they are embarressed. The postie rang the doorbell this morning and I was on the sofa after my 2nd FEC yesterday. I rushed to find the keys and get out from under the duvet and opened the door in my dressing gown and sleep cap - he looked at me said “oh, someone is alive then!” to which I wanted to say “thankfully, yes, still!” (Git!).

What I was trying to say in an even longer ramble than yours was make it up as you go along, dont worry, xxx

I told everyone who really needed to know within 7 days of diagnosis to get it out of the way. However, I have one friend who is at the other end of the country and I couldn’t bring myself to phone so I wrote to him; the same with a former neighbour I keep in contact with. I also told my next door neighbour and as we have a business we told some of our clients, purely on account of having to fit work things around hospital appointments.

Anyone else we just let them find out if it was necessary. Some of the neighbours asked my OH in the street if I was OK because I wasn’t out and about much for a while, so OH then told them. This resulted in cards through the letter box which was very kind of them (we grow veg and share them with some of the elderly people here).

I didn’t want to hide anything as we thankfully no longer live in the days when cancer was never talked about. For me it was just easier to be honest and open - I never wore my wig, preferring to wear bright bandanas and funky hats, so it was pretty obvious something was up.

thanks ladies,

I really want to be open but like you said its not like you can say “hi, by the way I have Breast cancer”. its just doesn’t roll off the tongue.

I am going to try the wig because my daughter has also stated that she doesn’t want me bald at school. but wants me in a bright pink wig like her of lazy town - don’t think so. I don’t know - I think I just feel vulnerable. I am coping and feel strong but this BC seems to be denting my confidence and I don’t want to feel looked at - although I know at lot of it will be in my head. I think I am just lost with it all. my life has ground to a halt and it feels like the rest of the world is wizzing past me. I am sure when Chemo starts I will have enough to deal with - just so bored of housework and being in.

Snottraggs,

I read your comments and it brought a lump to my throat! I was diagnosed in Jan,MX in March chemo started in May,finished rads last week and started Herceptin last Thursday. I have 2 kids aged 13 and 7.

Your feelings were exactly the same as mine. It certainly is a time when you find out who your friends are! I used to feel that I was on a merry go round that wouldn’t let me get off.Eventually I became the one that would talk about things,it seemed to break the ice because people do care but just feel embarressed or may not want to hurt your feelings.

You must remember this is not your fault!! You will probably find that mum’s in the playground talk and will know anyway.Once mum’s found that I didn’t mind talking about it,I had 2 or 3 come up to ask my advice!! Therfore I started to begin feeling like I was helping others.

My daughter doesn’t like me going anywhere without my wig too. Her school have been very supportive.She attends a weekly counselling session during school,it ha really helped,it’s just a place to go and express herself through drawing etc.Also I have the book Mummy’s lump which I ordered through this website.It helped us to talk things through.Now she tells her friends I have a sore boob because I have had cancer and chemo is a very strong medicine that that will help me feel better.

BC isn’t just a physical thing it’s an emotional rollercoaster.Take one day at a time. When I went through chemo I thought it would never end but it does! This website has been a fantastic crutch for me and I hope it is for you.This is a time when you have to put yourself first and others last.Those who really matter will be there for you good days and bad days.

stay strong you can do it girl!!! Jen x

Snotty,

Just to say if you really want a wig work hard to get one you like - it makes all the difference. I walked out with my NHS one after sitting looking in the mirror thinking - I dont know if thats right but I don’t think it is - but saying nothing. I hate it. I had resolved re headscarves etc but found a wig purely by accident on ebay that I love. £30 and you can’t tell. Honest. I have checked with small children and animals and old people and no-one has pointed and said “WIG”. I have asked friends and OH for very honest opinion and they are all of the opinion that it is amazing. It is like my hair should have been if I could have wished for my perfect hair do! I have even got a spare in case of untold wig disasters (ciggie, opening oven door unexpectedly!). I don’t wear it indoors but am very happy when I go out. The seller on ebay was mugeart and the style long layered dark brown I think or mid brown, delivery next working day in discreet bag. There are a lot of wig shops on ebay so have a look around. I was concerned that at that price it would be rubbish but I am honestly thinking of wearing it even when my hair comes back - its so easy - make up, hair on! Sorted! No more washing, straightening, worrying about damp weather! LOL!

You’ll be okay honey, just take it one step at a time, x

I only told very close family,wore a wig through chemo and came out the other end with hardly anyone knowing.Even changed my doctor as the receptionist was a gossip.It can be done and it was my way of getting through it.Only regret I have was not telling my cousin who was battling pancreatic cancer at the time and sadly didnt make it.She had decided not to tell anyone either so I only found out when she died.I lived with my daughter while on chemo and the grandchildren knew I’d no hair.They didnt tell a soul.It did bother the 4yr old though and he was very protective of me!

Hi

I don’t know whether you’ve considered using the cold-cap during chemo but I found that it’s helped me enormously. I finished my sixth and final FEC a week or two ago and although my hair has thinned quite abit and my parting is alittle wide in parts, it has meant that it’s not obvious that I’m ill. And that has been quite a relief as no one asks about the BC unless I decide to tell them. And even if you decide to wear a wig, I have to say everyone I’ve seen with one looks great - infact there have been times when I wondered if a wig would be a better option because with a wig your hair looks so glossy and healthy whereas mine has gone abit frizzy!! But either way, I don’t think it’s as bad as you first think it will be.

I also found (and still do) it really hard to tell people that I had BC - alot of the time I just burst into tears - but for those that don’t know me well (like other parents at school) I’d prefer if it wasn’t obvious that I have BC - makes it easier for my 4 year old daughter to deal with any questions by other children at school. The good news is that I have found with time I can handle telling people when I need to although I still don’t find it easy to immediately come out with it; generally I only tell people if they ask why I’m not working.

As Jen has said, the whole experience is definitely an emotional rollercoaster - from waiting for results, to diagnosis and telling family/friends to coping with your treatment but you will get through it. I really wish you well and just go with what feels right for you when it comes to telling people.

Take care and good luck with your chemo.

I kept my hair on FEC and only lost it on Tax.

I just wanted to say that I may as well have worn the bright pink wig from lazy town as I felt that uncomfortable in my wig. LOL. As someone commented above make sure you get the right on, I ‘made do’ (with two different ones) and didnt end up wearing either of them, but wore scarfs instead, but does make a bit of a ‘cancer’ statement at the school gates.

I told a few close friends at school and asked them to casually pass on the information to one or two parents each, so that it got around that way, I felt that they would all find out anyway, so better to be on my terms but, like you, couldnt find the words to tell anyone (apart from the fact that every time I mentioned BC for the first few weeks I ended up in floods of tears).

I am now 7 months down the line and have just next week to go on rads, and it does get easier to talk about it as time goes on, but I guess everyone still has their bad days.

Good luck with your journey.
Ness1
xx

Oh thanks so much ladies. It really does mean a lot. Been feeling really down last couple of days and then started my period this morning so think that had something to do with it. Laughed really as its probably the last one for a while!!! (corssed fingers it returns - must be mad admitting that!!)

School have been great although the head stays away, not sure she knows what to say to me but my daughters teacher is lovely, must be a shock though as its her first teaching job - she is getting tested hard I think. All the school staff know and one of the teaching assistants is a friend and keeps a look out for my daughter. I am being as open with her as possible and I know she has told some friends, its the wider population of kids especially a certain few in older years who I don’t want saying things to her. She is strong but very quiet so might feel a little intimidated.

I am going to look at the wigs but scarfs might be more me - I just want a plain one - nothing fancy really also how do you tie it and feel like its not going to go with the wind??

Oh Ostrich hope you healed ok and have been able to have that bubble bath.

I am off to see close friends tonight - so chocolate cake and coffee and loads of chat will bring my spirits up I think. I have known them for a long time and they have been fantastic. you def get to know who your friends are.

Hi

My bc nurse advised me to tell a few people which I did, it was amazing how fast word got around. At work I told the team I worked with (all men) and told them ‘its not a secret, I’d rather people know but I don’t want to have to tell everybody’

The hardest thing for me was going from the wig to the scarf. I found the scarf more comfortable but then there no hiding the fact I had cancer. I did find women I didnt know(with very short hair) smiling at me though!

I like Indian cotton triangular scarves best, I find them easier to tie and I something wear two different colours, one on top of the other. I tie the scarf once at the back then pull one of the long ends over my head and knot it at the side near the ear.

Its getting a bit cold outside now for scarfs but I’ve bought myself several buffs, You can google buffs and the site will come up. They also demonstrate how to wear them under technical info but I wear mine a bit differently.

Have a great night

Sue

I had some really great bandanas made by a little company in County Durham. Sadly the company closed down because the lady who ran it with her brother died from cancer. They were specially cut for chemo patients and for an extra pound they put a fleece lining inside for the winter. I also had lovely little fleece sleep hats from them in pastel colours. I would like to think they will perhaps start up again as their stuff was very affordable and came in a great range of colours. They were also a really nice little firm to deal with.

One good tip is to wear a quilted cotton skullcap under your scarf or bandana. This gives your head a really nice shape and you don’t look so bald. You get them from a company called Headlines who are recommended by cancerbackup, which I believe is now part of one of the other cancer charities. I bought 2 so I had one on and one in the wash, they were very comfortable against the scalp.

Hi There
I’ve got young kids too!. I couldn’t stand the thought of being the subject of playground chinese whispers and couldn’t stand the thought of people looking at me thinking"Well I know but does she know that I know…" I sent an e-mail out to 10 school mums who I spoke to the most and let news travel from there. When the line “How are you” was passed I just said “well I haven’t been that well actually but I’m fine today” and people often said well, yes I had heard but I didn’t know what to say. They seemed to be relieved to be ‘invited in’ to talk about it and to be honest because I didn’t want to talk about it that much I was always “Fine” whether I was or not and the conversation soon passed on to other things and yet I felt the worse part of telling everyone was over. I found it really hard to start wearing my wig but I found the support of the other mums amazing. I think because I had been so open about it.
I didn’t wear scarves much during chemo, kept to my wig. Now I feel so much better and stronger, I tend to wear scarves more as they’re so much more comfortable but I have definitely found my scarves attract unhelpful (I can’t believe she really said that!) comments which I feel I can handle now but I know I was way to fragile to takeit during chemo.
Anyway just thought it might be helpful to know what worked for me!
Good Luck xx

Hi: Just came across and read thru all. I’ve just finished my chemo - yipeeeeeee! - and lost my hair courtesy of the bloody epirubicin. However it is coming back.

I am 61 and have no kids, just a sister with lupus disease, our parents both popped off a few years ago. I chose only to tell close friends, boss and sister initially when I was first diagnosed. Very Best girlfriend (known for 50 years!) chose to tell a couple of others without telling me and, due to my stress levels being astronomic - I went bonkers. Nearly ruined a great friendship. However that was sorted very quickly. I don’t care who knows now. On another thread someone said “It’s cancer not syphilis”. Unfortunately, her ten year old daugher heard and said “Hey mum, what’s syphilis?”!!! Oops.

I did the wig thing because I have worked all the way thru but am down to two days per week now as I do a job share following full time maternity cover until July. I chose to change my colour from blonde to auburn - had done that before so wasn’t such a shock. If anyone says: love your new hair, I simply say it comes off at night and then explain why. Luckily I have had no side effects apart from the hair and getting a bit tired now. A couple of folks have said I look better now than I have for years. Guess there are some advantages to needing to rest a lot. I have two wigs, one short like my original hair and another a bit like Jane Fonda in the ads. My first one was paid for the by the NHS - still haven’t had a bill for my contribution - and the second I got from the Headcovers US website. They are both by Raquel Welch and are monofilements which move about like real hair.

The one thing I have done all the way through is to try to be in control of what they do to me - my body, my risk. I am due for 15 rads in Jan - they wanted to start just before Christmas and I said no way. My onc agreed that there was no point in messing about a few days here and there before Chrissy and agreed to the three weeks run starting in Jan. He also said waiting wouldn’t make any differnce. After that God knows what to come but I am not worrying about that now - will have discussions (rows?) about what I get when I need to. You will gather I am a member of the awkward squad!

Hope you are feeling OK now and are not suffering too many SE’s (side effects). There is a good - very long - thread on being treated with chemo called Starting 20 May - any good buddies. There is loads of info on there - some scary, some sad, some hysterical, and some very knowledable. If you have about two hours to spare you could have a read thru.

Good luck to all, lots of hugs all round.

LOL

Julia

thanks all, I think I am getting there - my tag line for everything. As I said not told a lot of people and then get a phone call from one of the Mums at school - she has found a lump and is in tears on the phone and it just kicked in, being rational and trying to help her. I felt like that once I found the lump and she said once she found out about my cancer she knew she could speak to me about her lump. I feel at least I have been useful!!

I am now on the lookout for good headwear - took a look at what people on here have advised. hoping to get a selection of wig, hats and scarfs so to give me options.

thanks again. /Anyone starting chemo 1st dec???

Hi snottraggs
I got alot of my headwear from Scarfhut (google it as I don’t think I’m allowed to put the full address).
I thought they were very reasonable and the delivery was lightening quick
Good luck xx

well done snottraggs!!!

I told you once others know it’s surprising what happens! Good luck to in the future-you are probably stronger than you realise.

I got alot of scarves and a lovely towelling sleepcap-that I wear in doors all the time from an American website.Sure it was called head4cover or something similar.The things came really quickly wrapped in tissue with a bow.It seemed the company appreciated what the package represented.

As for chemo,have you read the top tips discussion? Well worth it- I went to Boots with a very long shopping list and being prepared helped me at home.

good luck Jen x

Headcovers US website is run by women who had BC and found the wigs etc appalling so started a better company. They are really good and as you say arrive very quickly, beautifully packaged, and, as classed as medical supplies, ykou don’t pay any duty!

Julia

Hi, I was diagnosed with breast cancer and node involvement nearly three weeks ago. I had scans, mammogram and biopsy during my first appointment with the consultant, and got the results immediately. Yesterday I heard that my bone and CT scans are clear, I feel so much stronger now, I can deal with it.

I identified with this discussion as I too found it difficult to tell people, my husband and I needed time to come to terms with it. I chose who and when to tell my family and friends, ( I think I needed to feel in control). Like many of you I don’t want it to become general knowledge. I still haven’t told my youngest children yet, as still unsure how much to tell them. Obviously will tell them I am having op, and strong medicine etc, but am concerned about telling them I have breast cancer in case they hear horror stories at school! The youngest is 4, and just started school, any ideas?

I have my mastectomy and axillary clearance booked for 16th Dec, but have already bought my wig (definitely having chemo) and have an appointment to have my hair cut in the same style so that when it goes, hopefully no-one will notice! I have long hair and have never worn it short or had a fringe, so this is a big, big deal for me!
I don’t want to wear a scarf or hat…

  1. cos I’m not a hat or scarf sort of person, more jeans & casual hair
  2. cos I think that’s like telling the world!

I think I am coming to terms with it,

Off to order bras now for post-op, if I can find a tape-measure!!!