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the things people say! :-)

211 REPLIES
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Re: the things people say! :-)

Hi Multitasker 

I understand what you mean, my brother and sister in law did not show me any support at all. My cousins stepped in and gave me all the emotional support I needed. 

It does hurt, however you cannot control other people’s behaviour, Iv learnt this the hard way. 

In time your in-laws will realise their lack of support for you, however let them realise it on their own. 

My brother called my cousin last week, and tried to make his case about not being a more supportive brother, my cousin told him what she thought of his behaviour. 

He started to text me to see if I was ok. 

Focus your energy on moving on, not backwards. 

Lots of love 💖 

Member

Re: the things people say! :-)

My husband works abroad and whilst he comes home frequently during treatment to give me love and support, it has been hard. When I was diagnosed my in-laws expressed sympathy and said they would be there to support me. Well over 5 months I had 2 texts, although they told family they were supporting us. At Christmas they visited us and I expressed my hurt and confusion, but heard nothing since.


Happily active treatment finished last week and there was much celebrating with friends and family.


Just come home to a message on the house phone from in-laws asking me how treatment was progressing and if there was anything they could do?!?!? After SEVEN months the first call is AFTER the hard treatment is over. Oh the irony! I really feel annoyed and hurt but will just try to laugh it off.

Member

Re: the things people say! :-)

Hi Cathy 

Thanks for the reply, since my last post my brother and I have spoken about his behaviour, and he’s apologised for being so indifferent. Iv also discovered he’s been drinking heavily, to help him overcome his depression. His wife continues to be insensitive, so Iv made a conscious decision not to bother with her again. I never bothered with her anyway.

 I started Radiotherapy today, and I’m looking forward to my new life.

I do laugh when people compare their flu or cold to Breast cancer!!!!! 

Take care Cathy 

Member

Re: the things people say! :-)

We must be related somehow.  Smiley Happy

Member

Re: the things people say! :-)

When I told Mother her response was "Oh I haven't got to live through that again have I ?" Refering to Dad having had throat cancer and my Mother's Mother having had breast cancer. Not a word of sympathy for me.

Member

Re: the things people say! :-)

 
Member

Re: the things people say! :-)

Monica, I wouldn't write your brother and sister in law off completely.  I know my brother was very silent about my cancer, and one day I asked him why he didn't say anything.  He said "I don't know what to say."  I think a lot of people who don't say anything are secretly anguishing over our afflictions, and, especially blood relatives, wondering if they are due some of the same. 

 

I also think that the breast cancer "awareness" campaigns have taken the dread out of cancer, so to those who have not had it, it's nothing much at all.  It's become "common", and people only see how many people have "recovered", not seeing the prognosis or treatment involved.  Or what happens to our psyche.  You're not crazy.  This stage will pass, and you'll be happy to have friends who don't see you as the cancer victim, because they are the ones who don't see you as one now.

 

Cathy

(PS - I phoned my BC nurse once, early on, because I was feeling really ill, only to have her cut me off to tell me how bad she was feeling because she had a cold!)

Member

Re: the things people say! :-)

When I was initially diagnosed in May 18, my friends and family were great, said all the right things and told me they would be by my side. 

Nearly 10 months on, I have the same people, more so family telling me, I have lost the plot, gone nuts and I’m crazy. Why??? Because I have gone through the worst year of my life, Iv been thrown into the menopause, doubled up with Anxiety over my surgery and prognosis. 

I had a friend tell me, she knew how I felt because she had really bad flu. Seriously 😒 

Iv been compared to other people who have gone through treatments for BC, and they are doing so well, so why am I crazy, I mean really. 😒😒😒. 

Unfortunately the last 10 months have shown me who my real friends are, and who I can turn to for support. Iv now stopped talking to my sister in law, due to her insensitivity and my brother due to his indifference. 

 

 

Member

Re: the things people say! :-)

Apparently I am very lucky, too. “Good luck for your op - but then you don’t really need it!” That hurt as 1) I didn’t cram for an exam I am likely to pass anyway and 2) after all the bad news and having to get my head around all this, why am I not entitled to any good luck?  

Some people just don’t think before they open their mouth! Doesn’t make me any less human just because I am not wailing down the phone every 5 minutes and am dealing with it my way!! X

Member

Re: the things people say! :-)

Apparently I am really lucky because my cancer was 'only' grade 1 and it hadn't spread  and imagine how awful it would have been if I'd had to have chemo-........ er excuse me but I've had a breast removed, going through reconstruction, hating looking at my boobs because they are so different and look ridiculous, on hormone therapy for the next 5 years!!! Oh yeah, I'm lucky alright. (wish I felt lucky).

Sorry for rant - feeling a bit emotional today for some reason.😪

Member

Re: the things people say! :-)

DebsE.  Couldn’t you just hit these people! Vanity for using the cold cap! Speechless! 

 

I decided not to have the cold cold cap because a couple of years ago I had a mini stroke. I discussed it with the chemo nurse. I had people telling me I was brave when I had my head shaved if my remaining hair. I’m not brave just I suppose a bit pragmatic. We all react to hair loss in a different way. I’m not brave and neither are you vain. We are just both trying to cope with this dreadful cancer in our own way. xx

Community Champion

Re: Good intentions but...

https://www.bbc.co.uk/news/health-47002578

 

Interesting BBC article, on this theme, today.

Member

Good intentions but...

I now have quarterly appointments with a psychiatrist, for a prescription of an SSRI that my NHS Trust keeps red-flagged. The psych is delightful and well-intentioned and has tried to reassure me regarding chemotherapy and its potential dire consequences for my sickness and eating phobias by telling me every visit that she has watched her “mother-in-law go this three times and she’s always managed.” THREE TIMES?? Once was more than I’d planned. It has planted a little niggle of doubt I am trying hard to ignore about the efficacy of chemotherapy but I don’t have the heart to tell her.

 

Generally I’ve found people are saying the ‘right’ things but it amuses me when someone says I’m doing so much better than they expected. Best not to examine that any further.

 

Most infuriating is the advice about getting out more, meeting people and trying to keep my life on track. I am doing the best I can, judging what suits my mental wellbeing as much as my physical wellbeing. And I’ve only had the first 2 EC treatments so give me some time please. What works for one person doesn’t mean it is right for everyone. Lying in a stupor over the weekend, only able to feel my body by physically touching my skin, I could have felt very angry - only I hadn’t the energy to care. I know activity is important but there are days when it’s a physical impossibility. But everyone knows someone who carried on working full time, running their families and going to the gym. Sorry, it doesn’t inspire me (though I’m awe-struck at those who cope this way). 

 

Member

Re: the things people say! :-)

It isn't just the things people say, either. It's what they expect of us too. Perhaps I can let off some steam.

 

A friend of mine who lives about 80 miles away was, when I was diagnosed with breast cancer last March, a bit dismissive. He thought that the older you are (I'm 69) the less likely you are to die from it and the less serious it is. I've provided him with suitable statistics indicating the opposite and have received a dignified apology!

 

The poor man was diagnosed with cancer of the bone marrow last June, which is under control but obviously very worrying. He's 77, lives on his own but has four adult sons, two of whom live within reasonable travelling distance for a day visit and a third able to travel to stay. For a long time he was very unwilling to express to them how depressed and worried he was because 'they have their own family and their own lives and worries and I don't want to bother them' etc. etc.. I kept telling him he should let them decide what they could and couldn't do for him, and simply be honest with them about his health and his depression.

 

We talk by phone every week. Over this winter he has been in the pit of despair. Each time I have used all the counselling skills I've ever learnt to haul him out of it, successfully, only for him to be back in it the following week. He did eventually have frank discussions with his sons and spent Christmas with two in turn, after a great deal of further telephone counselling from me.

 

I don't have any family and live on my own. Friends have been as helpful as they can be over the last 10 months, but they do have family commitments so I have to manage on my own most of the time and take myself to most hospital appointments.

 

Somewhere about New Year I started screaming at myself, silently. My friend has been in hospital for the last 2 weeks having fainted at home. He has contacted his sons and two are in dicsussion with the hospital doctors, so he is getting proper supervision. He had not even thought to tell the doctors he recently had shingles until I prompted him.

 

He still likes to talk over the phone and couldn't understand yesterday why I said I couldn't speak for very long. I've suggested that as he is due to be discharged later this week, he now emails me once he's home. I've also suggested that he thinks up something interesting for us to discuss, e.g.  stately home or some aspect of history, and emails me the Internet link so we can go on a telephone virtual tour.

 

We have helped each other along for years (support has been in both directions) but for several months it's been exhaustingly one-way and I've now begun to feel suffocated. Because I sound alert and constructive over the phone my friend takes that to indicate I'm well and happy. Actually, I'd like to scream but that would plunge him back into his escape pit of 'I"m a nuisance to every one else and this is my fault,' which comes out too easily.

 

I expect there are many of you out there who have to carry others along whilst needing support yourselves. How do you deal with it?

 

Best wishes to all 

Community Champion

Re: the things people say! :-)

Debs - get the " vanity people " to shave their hair and eyebrows off and pluck out their eyelashes for the duration of your chemo treatment then ask them do they feel the same ??? You are just trying to hold on to a bit of normality and feel better about yourself .I do think people really struggle to know what to say and not for the lack of care can say things that offend but the vanity comment is pretty awful !!!
Member

Re: the things people say! :-)

DebsE I’ve had the 1in 3, 1 in 4 remark too, love it when people think aloud...

I’m sure you don’t need me to say it, but the decision to cold cap is yours and yours alone, nothing to do with vanity or anyone else, we all make the best treatment decisions for us and none of us want to even have to!! All the very best for your treatment Mxx
Member

Re: the things people say! :-)

We're a group of 4 mums who met at the school gates and have stayed friends (our boys are all grown up now).  One of the ladies, over Christmas, said "statistically they say it happens to 1 in 4, so one of us was going to get it".  Well I'm so glad I could step up to the breach for the rest of you!

 

I've also had two people so far tell me that my decision to cold cap is about vanity.  Not understanding that it's more about self esteem and trying to keep a little bit of "me"

 

Deb

x

Member

Re: the things people say! :-)

I like your reply Mrs G! Smiley Happy x

Member

Re: the things people say! :-)

Oh Mrs G - what quick thinking, always good to see the funny side. Maggie x
Member

Re: the things people say! :-)

Yesterday my sister-in-law sent me three long texts about how traumatic it is trying to find a bikini when you have huge boobs. Went on and on about what a trial it is for her. I had my mastectomy 5 weeks ago so just sent back “imagine how challenging it is when you have one boob”. That seems to have shut her up 😂😂😂

Member

Re: the things people say! :-)

Hi Seaside Sar. I have had a smile at your post! If anyone else tells me how brave I am and I’m going to win this battle, I shall scream.

I hadn’t been home from surgery long when my brother in law said ‘well it’s not as if you need looking after is it?’ Of course not, I’m a widow with no children, I’ll just get on with the treatment then shall I?!!
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Re: the things people say! :-)

Seaside sar it’s a great forum for venting isn’t it? Sorry you’ve had insensitive comments too, rest assured there’s always some here to share with. I hope your treatments are going as well as can be expected. Maggie x
Member

Re: the things people say! :-)

Oh my! There are so many things here which resonate with me. The comments which I have experienced and have grated on me the most are:

 

1. At least you caught it early. (Yes, great. But so far I've had two operations and I still need a year's worth of gruelling treatment.)

 

2. My friend had breast cancer five years ago and she's fine now, doing really well. (Oh well, that's alright then. Just like a bad dose of the flu.)

 

3. When I first went to the GP to have my lump checked out and I had told some of my work colleagues, they assured me it was probably nothing to worry about. (How wrong can you be?)

 

4. My husband is finding it hard to cope with my diagnosis and has been down in the dumps. He didn't really feel like celebrating Christmas, to which my Mum said to me, "It's not like you're dying." 

 

5. My friend made a big thing of telling me all about a friend of hers who had gone through breast cancer treatment. She said how positive she had remained throughout. I told her about my next step which is chemotherapy She then went on to say, "My friend got through it without any problems. OK, she lost her hair but it's no big deal!" (No big deal?? Are you going to join me then and have your head shaved?)

 

I think it's good that we can all have a rant on here. I have bitten my tongue too many times!

Member

Re: the things people say! :-)

Oh dear, that IS a bad start to the festive season. I think you were extremely restrained, Maggie. I might have responded, 'Is that a question, or are you telling me something?' followed by the feline effortless look of being unimpressed.

 

Have a restful and relaxing Christmas, despite faux pas from people who need to think a little harder.

Member

Re: the things people say! :-)

Well I had a shocker today. A relative I’ve not seen since before my diagnosis dropped by for a cuppa and came out with “its nice that you’ve not been that ill with it” I avoided eye contact with my husband as there were youngsters present- but I know you’ll understand I wanted to shout “ it was cancer, no I didn’t have chemo, but it wasn’t the flu!”
Member

Re: the things people say! :-)

Tili,what a shockingly insensitive BCN, words fail me M x
Community Champion

Re: the things people say! :-)

Absolutely appalling thing for anyone to say but especially the very person who is suppost to be your first line of support! I'm sure my husband would have soon put her in her place but he would have been dragging me off her first ! 😡

Member

Re: the things people say! :-)

Well I’ve gone right off my Oncologist as of yesterday morning. I got told that I really needed to do something about my weight as my outcome would be greatly reduced due to my obesity. Her words not mine. I went on my own ..... note to self NOT to do that again. At the time I just sat there like a numpty while she looked for some exercise/gym thing to refer me to. When I got home and went over the appointment in my head I got really upset. In fact I think I cried all afternoon and evening. Yes I have a weight problem but have other health issues as well so have not even been able to walk my dogs for the last couple of years. Talk about kick you when you’re down! 

 

I feel that I have brought the cancer on myself because I am overweight and what’s the point of having all this treatment if it’s not going to help. VERY, VERY fed up. Needless to say, she does a good impression of a stick insect! 

Community Champion

Re: the things people say

Tili

 

Honestly words fail me!! What on earth was she thinking saying something like that

 

Helena xx

Community Champion

Re: the things people say

I still can't believe that a BCN said that - it is honestly staggering. I swear I would have lost the plot with her !!

Community Champion

Re: the things people say

Tili , and the reason your BCN isn't flat on the floor is .......? Bloody good job it wasn't me! Good job you're strong, but the next patient might not be. Needs a complaint putting in. Bless you and hubby. X

Member

Re: the things people say

you need a reconstruction as your husband would not want to see you like that ??

 

Tili, that's shocking.

 

I'd have been inclined to answer something like: 'My husband is a very kind, considerate and sensitive person who believes my body belongs to me; that's why I married him.'

 

 

 

 

Member

Re: the things people say

'You can stop the treatment anytime you want, you don't really want to have a poorer quality of life do you'.

 

I do understand why this distesses you, Pinklily, but I can also see what your friend probably meant by it. Chemo doesn't necessarily prevent breast cancer coming back again, and it can have long term effects of its own, so whether to accept it or not is a very difficult choice to make. You do have the option to stop it, and doing so doesn't automatically mean cancer will come back.

 

A great deal depends on age, also. A young person in their 30s or 40s has a stronger chance of keeping cancer at bay for much longer than someone in their 70s or 80s. (We are told that there is no certain cure for breast cancer and it can always come back after even 20 years.) At the older end of life, quality of life is so important and some of us feel that's more significant than longevity.

 

Whatever you do, believe in yourself.

Community Champion

Re: the things people say

you need a reconstruction as your husband would not want to see you like that ??

 

WOw !!!! For a bcn to say that....thats absolutely astounding......I'm flabbergasted. Honestly.

Member

Re: the things people say

Ladies, why do these medical people think they can say what they like my breast cancer nurse said to me you need a reconstruction as your husband would not want to see you like that ?? I didn't reply
Community Champion

Re: the things people say

Ohhhh dear, oh dearrrrrr.....I can see why she said it too....to make you take ownership and feel like it was your decision...or make you think 'well of course I want this done, I want this surgery to get rid of it'.....but in our fragile minds and states words really matter. My surgeon, whilst staring at me standing topless infront of her, informed me that 'the reason your boobs are hanging so low is that you've lost a lot of weight'. I hadn't even considered how low they were to this point !!!! I can laugh about it now of course......LOL

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Re: the things people say

On the morning of my mastectomy surgery, my breast surgeon met me in the corridor. I was already gowned up, but upset, crying and scared. Rather than reassure me with a 'we'll look after you', she simply said 'you can always change your mind'! I know she meant it to make me feel like the power was in my hands but I didn't need any more seeds of uncertainty sown in my mind, I just wanted someone to reassure me that this was what was medically needed.
Member

Re: the things people say

I've got one friend who is so encouraging and says, 'You can do this, you can get through and out the other side'.

 

I've got another friend, who herselfs suffers from depression and every time I'm ill after chemo, says 'You can stop the treatment anytime you want, you don't really want to have a poorer quality of life do you'.

 

I can't think of anything more you don't want to hear from someone when you feel so ill and even doubt yourself if it's the right choice, but when you are told what the alternative would mean, I think encouraging support is so important.

 

 

Member

Re: the things people say! :-)

I've got one friend who is so encouraging and says, 'You can do this, you can get through and out the other side'.

 

I've got another friend, who herselfs suffers from depression and every time I'm ill after chemo, says 'You can stop the treatment anytime you want, you don't really want to have a poorer quality of life do you'.

 

I can't think of anything more you don't want to hear from someone when you feel so ill and even doubt yourself if it's the right choice, but when you are told what the alternative would mean, I think encouraging support is so important.

 

 

Member

Re: the things people say! :-)

Me not mum!
Member

Re: the things people say! :-)

Hi Pecan, I think you're right, I'm certain she didn't mean to upset mum.

Member

Re: the things people say! :-)

She probably feels helpless and subconsciously) thinks it's the one way she can help.

Member

Re: the things people say! :-)

Ironically I wasn't overweight when I developed cancer.  I think she's decided the only thing she can see that I can control to prevent it coming back, not that she thinks it's my own fault... but it was hard not to hear that at the time! 

Community Champion

Re: the things people say! :-)

Errrrm, and what is her theory behind this needing to lose weight thing? Surely....its not that she thinks being overweight has caused your cancer ????

Member

Re: the things people say! :-)

Oh Charys you'd think the hospital staff would know better!  Well done you for getting through the interview.

 

I've a friend who's developed a theory that I need to lose weight, really quickly, and should see this as a wake up call! I was perfectly healthy before BC, and yes I've gained weight since diagnosis, but I'm losing it slowly with GP support to make sure it doesn't yoyo back on, apparently I need to do more than my GP is asking of me... and quickly....

Community Champion

Re: the things people say! :-)

"if I was you I'd just have them both off" - like a double mastectomy is a lifestyle choice with no emotional impact, medical complications or risks!!

 

Sounds so easy doesn't it Maggie !!! LOL This is dumb for many reasons, firstly for the ones you've stated. Secondly because breast cancer treatments have changed and there is something called 'breast conserving surgery' and thirdly because the treatment team may not even offer that choice or think it appropriate. Annoying !!

Community Champion

Re: the things people say! :-)

Yeah, people don't mean it (I hope) they just don't know how to react - actually its fairly easy - you just listen and take cues from the person who is diagnosed. Everyone is different in the type of response they want, and so you just say 'Hi' and see how they lead it from there.

 

"My friend / colleague / sister in law / you-name-it had breast cancer x years ago, and she's fine" (or worse: "and she died")

 

Ohhhhh, I think I've told this story on this very thread....but it merits being told again. LOL After I'd finished my treatment in the summer of 2016 I went for an interview with the NHS for a voluntary role. I was rocked to the core to find out the interview was in exactly the room I had had my bc counselling - I got over it despite being shakey. The interviewer started asking about my diagnosis and treatment and said her sister had had the same at my very age. I then made the mistake of saying 'Oh did she, and how is she ?'. The exact words 'She's dead'. Seriously LOLOL I floundered and said I was sorry to hear that and the conversation continued into the type of bc she had suffered from. I continued floundering and said it sounded like a different form to mine (which it did), to which she replied 'No, I think it was the same type'. FFS !!!!!!

Member

Re: the things people say! :-)

B74 - you're right we need the laughs, and people aren't insensitive deliberately.   Your post really made me smile, it  reminded me of the lady who said, "if I was you I'd just have them both off" - like a double mastectomy is a lifestyle choice with no emotional impact, medical complications or risks!! 

 

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B74
Member

Re: the things people say! :-)

Wow some of you have had to deal with the most incredible insensitivity! You really have to laugh because the alternative might be punching them in the face! Thankfully most of my friends and family have been kind and supportive. My biggest gripes (some of which I may have been guilty of in the past but will try to avoid ever doing again) are:

  • Not knowing what to say, so avoiding me (one acquaintance dropped off a bunch of flowers, but practically ran away down the driveway before I could get to the door!)
  • Saying "Oh don't worry about chemo, I've heard it's not that bad"
  • Saying "My friend / colleague / sister in law / you-name-it had breast cancer x years ago, and she's fine" (or worse: "and she died")

 

Also my 13 year old daughter said about my impeding mastectomy, "don't worry mum, you don't really have any boobs anyway". But I did just laugh, because one day after she's breastfed her kids, she won't have any left either!!

Member

Re: the things people say! :-)

Thanks, no, I'm not in a position to go private.  I could try to get the hospital to refer me.  My hospital is in barnsley... not a million miles away.