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the things people say! :-)

Community Champion

Re: the things people say! :-)

😃 well you certainly made it very clear !!! Generally better not to beat around the bush - save your energy for other things ."Think positive" and "you are strong" were the things that did my head in the most - usually said at a time when I was a blubbering mess!!!
Member

Re: the things people say! :-)

Indeed Gill, I think a book is a very good idea.

 

After my diagnosis, I emailed a striaghtforward message to several of my friends, all people I've known for many years. After giving them medical details in a straightforward way, I then included the following:

 

As people often find it difficult to know what to say in such situations, I thought it might help to send you all some advice; I hope none of you takes offence.

In trying to be kind, people often say the wrong things, so please avoid the following.

1.  Telling me about treatments, statistics, the experiences of family and friends, how good cancer care is nowadays and how many patients live a long time. Each patient is different, each cancer is different, treatments vary, and the effects vary between individuals and can be very distressing and difficult to cope with, especially if you live on your own. Being told about other people’s experiences is no help at all and could lead to some sort of an explosion.

2.  Telling me I’m being brave or courageous, because I’ll say something which would have shocked my Mother. I am the person I’ve always been and, as regards my thinking, a mathematical scientist, who has 69 years' life experience of facing issues and getting on with them.

3.  Giving me advice of any sort. Rest assured, I’ll ask if I need it.     

I do hope you all understand as I really appreciate your kind thoughts and don’t wish to bite anyone’s head off (but am quite capable of doing so).  

Very best wishes and lots of love to you all

 

Generally this worked very well. As I said, these are people who have known me for many years and are kind, caring people who want to be supportive. One of them observed, 'We chuckled when we read it as it is so You.' She was extremely careful to comply with my request.

 

There was one person who persisted in giving advice and sending me unsolicited links to websites for head gear for people suffereing chemo hair loss, despite my having explained I found the whole idea of chemo horrifying and, being borderline, had declined it. It became clear that she was going to continue to say what she wanted regardless of my own feelings, so we no longer correspond.

 

When drafting the email, I thought through the things I suspected friends would be most likely to say as a knee-jerk reaction, which of those comments I could cope with and which would really upset me and why. I decided it was better to be up-front and take some control myself, rather than letting people say what they wanted and then smoldering in silence. We have to take account of our own emotions, as well as trying to avoid being hurftful to others.

Community Champion

Re: the things people say! :-)

People really do come out with such guff !!! But I reminded myself how I reacted when my nextdoor neighbour told me he had terminal lung cancer over the garden fence - I babbled something ridiculous and made a hasty retreat .Most people are really trying to be helpful but just don't quite get it right .A while ago we talked about writing a book along the lines of what not to say to someone with cancer and what actually does help.
Member

Re: the things people say! :-)

Suggested replies to 'aren't you lucky' comments:

 

• 'Not as lucky as you,' assuming the friend has not had cancer themselves.

• 'I hope your luck is greater than mine.'

• 'Better off than some; worse off than others.'

• 'This is a joy ride I hope you can avoid.'

 

As for the 'you are looking so well' comments, I tend to give a level look for a few seconds. If it's clear the speaker is waiting for a reply, I'm inclined to explain that many aspects of primary breast cancer are back to front. You are perfectly fit and well when the tumour is found. From surgery onwards, it's downhill for weeks and months, depending on the therapies, all of which tend to introduce side effects that can make you very ill.

 

Face to face it's reasonably easy to convey how we feel with body language, whilst gauging the speaker's level of discomfort. It's the badly chosen comments in emails I find hurt most as they glare out from the screen and don't go away. 

 

 

Community Champion

Re: the things people say! :-)

Hello Quaggie, cancer is a lonely place -doesn't matter how many people you have around you or how helpful they are - they really can't understand how it feels unless they have been there themselves .I found the support of ladies on here a sanity saver and felt quite distant from my " real life" friends when going through treatment ..Yes access counselling /support from outside - local cancer charities often offer a wide rang of support services/therapies.If you can get some company from friends to attend appointments it does help - if you have some really close friends -maybe you could ask them for a bit of support if you have to through chemo .
And yes wveryone does expect you to be back to normal once you have finished treatment but you are not !!! It takes time and sometimes outside help to get used to your post cancer normal which is why a lot of us are still floating around years later on the forum .Good luck with your op .Jill x
Member

Re: the things people say! :-)

Oh Lisa that made me smile - I felt amazingly healthy until they say they started treating me!! I’ve also declined most opportunities to meet/chat/text others as every one of us & every journey is different x
Member

Re: the things people say! :-)

Good luck with your surgery, don’t be afraid to ask ffor help/ company, people like to feel useful and despite my initial rant, they mean well x
Member

Re: the things people say! :-)

The great thing about this forum is everyone is in the same fleet - if not on the same boat x
Member

Re: the things people say! :-)

Morning ladies, interesting to read all the comments below. I’m at the beginning or my journey having been diagnosed with DCIS on 11th July, with mx planned for early September and generally everyone has been really lovely. I am getting the ‘arent you lucky comments’ which seem a little odd thinking about the surgery ahead, but yes I’m lucky I won’t need chemo and very aware of that.

My father is the strangest though ....
1) “how are you feeling ?” Fine same as yesterday. “No change then?” No not until surgery .... then ending his call with “hope you feel better” ... nope, I’m definitely going to feel worse soon!!
2) “let me introduce you to our friend that had breast cancer” - thanks but no, I’m meeting someone who has had the same as me, has been treated by the same surgeon and is around my age (my parents are 80 so friends similar, I’m 47). “She’s a very intelligent lady” ?!?!

I know he means well, but I wish he’d shut up!!! 😂😂.

Lisa
X
Member

Re: the things people say! :-)

Hi ladies
The comments here really resonate with me, Quaggie I know exactly what you mean about the adverts, I really can’t stand “Brave the Shve”. There’s nothing brave about shaving off hair that will immediately grow back. I’m also very conscious of not saying too much and being a cancer bore, It’s also very private and I’m amazed at how many people feel it’s ok to ask me exactly what the surgeon is going to do to my boob!
Lucaboo please treat yourself to the most beautiful clothes you can find, you are so worth it. I’m done with saving anything for best and am busy wearing my most gorgeous clothes every day. Makes me smile.
Love and hugs
Jacq xx
Member

Re: the things people say! :-)

I feel for everyone who has posted on here about how family/friends have reacted.  I'm only at the start of my cancer journey (surgery in 6 days - eek!) but already am being surprised by how people react.  Most friends have been shocked when I tell them but obviously don't want to talk about it very much and I'm already very conscious of becoming a 'cancer bore'.  I guess I might not have known how to talk about it with someone before my own diagnosis so can have sympathy with the awkwardness of knowing what to say, or saying things that you think are comforting, when really their not.  

I live alone and don't have a partner so have, so far, been to all my meetings alone (including the one where I was told the news) and will have to go to my rads (or even chemo) alone as I have no family in the immediate vicinity and, at 45, all my friends are all at work during the day.  I've always been comfortable in my own company and comfortable with living my independent, full of action life and never felt the lack of a partner.  Until now.  Now I feel alone for the first time.  Although I also understand, especially having read some of the other posts, that having a partner doesn't necessarily guarantee having someone who can offer you the support you need.

Has anyone else find it helpful to get outside/counsellor support? I'm going down that route as I think I can benefit from getting to talk to someone who is both trained and outside my immediate family/friends circle so I can be honest without hurting anyone's feelings.

My biggest concern is that people will expect me to be 'ok' once the surgery/rads/chemo are done but I can see this impacting my life/confidence for a very long time to come.

 

Anyway, hugs to everyone who is on here - the support and insight this forum has already given me is beyond price.  xxx

Member

Re: the things people say! :-)

Hi Georgie Gee, i too resonate so much with your post. How true everyone goes silent, i feel like im in the Bridget Jones movie where she keeps pressing her phone ...you have no messages...absolutely no messages! Haha you have to smile, but there are times when thats difficult i know.

I went shopping ysday for new clothes after my shock weight loss, cheered myself out the door that i would be able to buy a size smaller, half way round the shop a little voice in my head says "what you bothering for youve got cancer" i swear i thought i was going mad. I tried to carry on but tbh i couldnt wait to get out the shop. So i do understand where your at, and sorry you too and many others on here feel this way. 

I am hoping it gets easier as time goes on but, like you say every advert on tv , every person collecting for mcmillen are constant painful reminder. 

All i can say is thankgod for this forum, its saved my sanity on many occasions now that i have suddenly become a alien lol....hope your soon through your chemo, jump on here and let us know how your doing.....best wishes and hugs....and remember your beautiful just the way you are....xxx

Member

Re: the things people say! :-)

Sometimes it is the things that people 'do not' say that affect me.  Some people just go silent on you, don't they. 

I am now of the opinion that after a while, people who were originally pretty much as shocked as I am about the BC, are now kind of bored with it all.  

They are now over their own 'shock' and have all been able to carry on with their lives, just knowing that they now have a person they know who has breast cancer.  

For us it is very much different, isn't it?

Don't know about you, but every time I put my bra on, have a bath, go outside, think about sunbathing (concerned about insect bites as since all my lymph nodes have been removed, I am at risk of lymphedema), I remember.

Haven't started chemo yet, but soon it will be every time I look in a mirror, step on the scales or even hear the word 'cancer' on the radio or TV, I will remember. 

Thank you everyone who posts on here; it has been so helpful reading other people's experiences and challenges.  It is good to have a chuckle isn't it - or a little cry - or just empathy from others in the same tunnel. 

😘 

 

 

Member

Re: the things people say! :-)

Lucaboo. So sorry we won't be able to meet up. I have put my name down for the moving forward course which I think is in January and February of next year. Earliest one in Merseyside area. If you fancy coming on this let me know maybe we can meet up then. Will let you know how next week goes keep in touch Chris x
Member

Re: the things people say! :-)

Hello mcnullcc

 I had the same issue with predictive txt have only just noticed. Apologies.

I can do this.

Member

Re: the things people say! :-)

Sorry mcnulcc not McMullen!!😘😘
Member

Re: the things people say! :-)

McMullen for various reasons I have very little contact with my one and only sister; no brothers. She was never very forthcoming when I was having to helo with my late Mum when she was ill and i took her shopping every week and sorted out Ant thing she couldn't cope with. My sister was not supportive when we lost our stepfather to copd. Leaving me to assist mum with the funeral etc. Then 11 months later my Darling mum passed not wanting to spend the anniversary of her husband's death without him! It's all very sad and I'm sure the stress of it all contributed to my diagnosis. I've seen my sister about 3 times in the last 8 months and they were under my own volition. But you know what? It's fine cos I have the best hubby, kids, grandkids and friends so it's her loss!! We have to live forward and if certain people don't want to come along for the ride they can just jump off!! They won't get a return ticket though!! Best wishes to you on your journey back to full health 💖💖💖💖
Member

Re: things people say omg

Hello Appletree, aww glad to know im not alone. Although it takes some strength some days to muster that up. Your comment of being in a sitcom is so true, i cant tell you how many times ive felt like it was happeningvto someone else not me.

I hope you are gaing some sort or normal back to your life having been through all this, i dont care what anyone says you are never the same afterwards. Omg sometimes i think im going mad. Its tough to say the least and my mobile has never been so silent. Crazy how people behave unbelievable...never say never as the saying goes. I hope your feeling a bit better now and please jump on here and have a chat or a moan which ever im always popping on here it keeps me strong. So thanks to all who take time to comment...best wishes and hugs to all xxx

Member

Re: the things people say! :-)

Hi Chris, i hope you had a good rest on your holidays much deserved mentally and physically i bet. I have my times through from Aintree and im 8.45 every dammn day from 6th august,  ive got excercise arm class wed 8th aug 10.15 so im never gonna meet you with these times! Ive tried t rearrange but she said rest of times were allicated to hosp transport patients. God almighty ill have t be up at crack of dawn to get there for that time. So we will just have to get on here and support each other though rads. Ive been all for near backing out i can tell you, im still not 100 percent but damned if i do, and damned if i dont. Hope your  rads go smoothly for you Chris, and sorry we wont meet. Let me know how you go on will you....much love xx

Member

Re: the things people say! :-)

McMullen....good morning, 

Your message very much struck a cord with me and I offer you my support and understanding as I too am finding this a very lonely journey. From early on I realised I would come out of this a very different person but more so because of the reaction of my 20 year old daughter. A lovely girl has turned into a stranger who in a nutshell I feel has rejected me because of my diagnosis and more intensely so because of my decision to go ahead with chemotherapy. An old expression of my own Mum's was to say "it's a good job we don't know what is in front of us". I am slowly adjusting my life and coping as best I can but at times have some overwhelming feelings realising there are now times which I may not share with her, e.g. Christmas, her wedding(if she meets the one!) birth of her child/children. But hey at 58 having cared &nurtured her and her brother for 13years alone having left their emotionally abuse father I have to give this my best shot.. Really no idea how I will move forward but take a day at a time..

Take care.

I can do this. x

Member

Re: the things people say! :-)

Appletree no offence taken at all I have to say once I had stopped swearing I laughed about her comments for about an hour. Like you I think my Christmas list will be very different this year and any money I save I can donate to BECA so although people don't realise their insensitive comments and actions have a positive side. Have a good day everyone I'm off for a power walk.., well a slow stroll maybe xxx
Member

Re: the things people say! :-)

Please don't take this the wrong way, mcnulc, but you've given me a much needed laugh this morning. I agree cancer loosens the tongue. My Christmas list has shortened as well; that should shave a bit off the budget.

 

A friend of mine recently responded, as follows, to my mention of having to return to hospital for revision of the axillary node wound: 'I was sorry to hear that you had to go back into hospital for a further operation. I hope your wound is healing properly by now and you have not needed any further unpleasant treatments.' So, I've sent her a description of what it's like to have radiotherapy for 15 consecutive days over three weeks, not to mention adjust to a different hormone therapy after developing an allergy to the first drug tried. 

 

Some weeks ago, the same friend observed: 'breast cancer treatments are so much better nowadays,' never having had the disease herself. I explained nicely that the approach to patients has improved, as have laboratory and surgical techniques, but the treatments themselves are pretty horrible, in different degrees of horribleness. I hinted that, when told things like that, It's tempting to give a robust response and suggest the speaker tries the treatments themselves.  

 

My friend means well, I"m sure; it's probably down to lack of imagination and perhaps a self-protective wish not to know.  For someone who's not had cancer, it's easier to brush it off as an everyday nuisance and nothing more, than think out how they'd cope themselves.

Member

Re: the things people say! :-)

So brother in law and his wife have not been in touch since my diagnosis end of April. Her birthday was on Monday mine was last Thursday. I sent a text day of her birthday wishing her happy birthday nothing till last night when she responded. "Hope you had a fantastic birthday and enjoyed your day." A week late and no mention of how I might be feeling or coping with treatment. So my response was quite blunt and to the point. "Not quite how I expected to be spending my, 60th birthday head down toilet due to side effects of tablets start radiotherapy for 5 weeks on Monday but thanks for your best wishes" it seems that cancer can be quite empowering on occasions and they are definitely off my Christmas card list.
Member

Re: things people say omg

Hello Lucaboo

 

I do identify with your situation as I am on my own and without family available to support me. A friend came with me to two of my rads sessions, but otherwise I have managed on my own for rads and for most of my clinical appointments. It hasn't been too bad; I sometimes pretend I am taking part in a sitcom and am simply an actor!

 

Yesterday I had a session with a clinical psychologist attached to the Breast Cancer unit of my hospital. She observed that many patients who do have families living with them still don't always get the support they need. People who have not had breast cancer themselves, and have not been trained to deal with patients who have, don't realise the long term effects of the diagnosis and treatment. All too often, they expect the cancer patient to return to normal after they've completed hospital treatments, which is of course not the case.

 

Breast Cancer Care runs courses in different areas called 'Moving Forward'. Here is the email address:

movingforward@breastcancercare.org.uk

 

The psychologist recommended these courses which are for four days, over four weeks, on the same day of each week. They are for breast cancer patients who have completed their hospital treatments (but still might be taking hormone therapies and bisphosphonate therapies). The course is designed to help increase the individual's knoweldge, confidence and overall wellbeing. It provides information, support and professional guidance on a range of topics to help cope with changes, manage uncertainties and establish a 'new normal' after treatment. Expert speakers are available to answer questions and each course is attended by up to 16 people so it's also a chance to get to know others in a similar situation.

 

Wishing you all the best.

Member

Re: the things people say! :-)

Oh Georgie Gee, ask her/him if they'd like to try mustard gas for breakfast to thicken their own thatch.

 

(No, all right, that wouldn't be very kind. They were probably just trying to cheer you on.)

Member

Re: the things people say! :-)

Well I had an interesting comment the other day!

A colleague said to me 'well at least you haven't lost your hair'.

i replied 'I haven't started chemo yet though'. 

Reply from colleague: 'the cancer makes you lose it though; the chemotherapy is to help you get your hair back isn't it?' 

Erm........ 

Member

Re: the things people say! :-)

Ahh that would be lovely Chris, i should get times through post in next day or two. Enjoy ur holiday well deserved id say. Ill message u soon as i know. Look forward to meeting you, youve brightened up my day thanku xx

Member

Re: the things people say! :-)

Lucaboo. I think my appointment on 31st is at 4.15. I am on holiday at the moment managed to get them to put my Rads back by a week so I could still go away for a week. Will message you when I get back to see when your appointments are. I think I have been booked on an exercise class on Wednesday 1st at 3.00pm Not sure if they offered this to you. Hopefully we can meet up at some point as clearly we will be undergoing treatment at the same time. Best wishes Chris x
Member

Re: the things people say! :-)

Oh i will Mcnulcc that would be great, i went for my planning session on friday so im just waiting for my appointment times to come they said about 2 to 3 days in post i think. Ive had coffee in the coffee shop on friday so i know where u mean. I suppose to start tuesday 31st so ill let u know soon as i find times. Its awful the way people treat you i cant quite believe it, i know a lot of the time people dont know what to say but to not acknowledge it altogether when you speak on phone etc or not ring at all just rotten.  Well you jump on here too if you want a natter im always about. Hope ur rads go ok on monday let me know what im in for on tues. Looking forward to seeing you if i can, hugs and much love and thankyou xx

Member

Re: the things people say! :-)

Lucaboo. I start my Rads in Liverpool on 30th at Aintree. My appointments are late afternoon. If you are at Aintree as well let me know we could arrange to meet up for a coffee if you want as there is a nice little coffee shop in the centre. I know this is a horrible journey I am still having melt downs and my brother in law and his wife have not been in touch with me since my husband told them I am so annoyed with them as my husband could have really done with a bit of support from his brother. It's only when things like this happen that you really understand who cares and is there for you. You are not alone there are people here who understand and will help support you so rant and shout on here as much as you want. Sending hugs
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Re: things people say omg

Thankyou Quaggie, my situation aounds similat to yours, but omg my heart goes out to you having to go alone for diagnosis results, at least a friend came with me for that one. Your a amazing to go alone im not sure i could of done it. And your so right about you feel u become the cancer bore with friends its terrible, why do people stop talkingvto you normally just because you have cancer omg drives me nuts. Ive told my family im stuck with lifts etc and wouldve liked some support but no offers so ill go it alone. I feel for you too quaggie going it alone all this time just awful, you need a friendly face around. Its helped me more coming on here i dont feel so alone with my thoughts and fears. Thankyou so much for replying and keep us updated on your progress with everything. Wishing you good health for the future and plenty of hugs xx

Member

Re: things people say omg

Hi Lucaboo

 

so sorry to hear you feel let down by your immediate family. Have you tried asking any of them directly, letting them know how anxious you are about that first rad session? Sorry if that’s a stupid question. A GP friend of mine told me that now was the time I’m allowed to be selfish and ask directly for things that I wouldn’t normally, so it’s just a thought. You could even ask just for the first session as after that you might not feel so uneasy about going alone. 

 

Also, might be worth checking if your hospital do introductory ‘lessons’ on radiotherapy - I’ve seen signs at my hospital advertising them for new patients. They seem to give patients a guide to what will happen which might also reduce your anxiety a bit. I’m still a long way off that (still 2 weeks before my surgery) but am hoping to go nearer my rad dates. 

 

I understand and your sense of isolation though. I live alone, don’t have a partner or children, my elderly parents and my brother live a few hours away. So I’ve gone to all my meetings/appointments alone (including the one where I got the diagnosis). My brother will come with me for my surgery day but after that I’ll be doing most of it alone again. I have good friends but they all have their own lives/families or live a distance away and I’m already aware I’ve become the ‘cancer bore’ for some friends. This is already tough emotionally so I’ve been lucky enough to get some counselling appointments through a local charity. Have you tried talking to anyone outside your family/friends group at all?

 

Anyway, wishing you all the best. I’m finding coming on here a great help xxx

Member

Re: things people say omg

Thankyou both Jencat and Jo, i thought i was me being just over sensitive at this time so i thought id throw it out to see what other thought. I know they cant do much but its just a friendly face to have along side you. I dont think they realise how all this journey affects you mentally. They dont talk about it now, its as if ive had the op its all over...phew i wish. Thankyou for all ur moral support on here you all been amazing from the start. I start my rads on 31st july for 15 days so no doubt ill be on here having a cry just over whelming all of it. Ill do my best to carry on tho and i send good healing wishes to you all. And thankyou for taking time out to reply much app. Xx

Member

Re: things people say omg

Lucaboo, I would be upset too if I was in your position. Do your family realise how scared you're feeling? Just wondered if maybe they didn't and that's why they haven't offered to come with you. 

I don't drive and my radiotherapy was a bit of a distance from where I live and when my YD was unable to take me, (she fell down the stairs!) my ED put a message on Facebook to see if anyone else we knew could give me a lift. Could you do something like that, even if it's just for someone to come for the first one with you, especially if you have a meeting first (I did) as it's always useful to have another 'pair of ears'.

Saying all that, as Jo has said, the radiologists are lovely and will put your mind at ease and explain everything to you x

Member

Re: things people say omg

Hi Lucaboo, 

Im sorry to hear you feel let down by your family, I would be upset too!

Some people just don't seem to understand the emotional toll this takes on us and how a friendly face can make all the difference at such an anxious time! 

 

On a practical note please dont fear radiotheraphy as its really nothing to worry about, it's over in minutes and totally painless , most people have nothing more than a mild sunburn effect to show for it, The travelling can make you tired so drink plenty of water which really helps and if you do have to go by yourself you will find plenty of people going through the same to chat to and the nurses are just lovely. I made life long friends during my 3 weeks of going. 

 

I had a 40 mile round trip which i was fortunate my husband or niece could come with me each time for but I often drove myself and they just came only for company, I went after work every day as I felt fine but it really is the emotional side of things that are often harder than the physical and that's the bit our nearest and dearest don't always get. 

 

I met several people who used the hospital transport , I would chat to one of the drivers in the waiting room whose wife had been through it all years before and he just wanted to give something back by becoming a volunteer, I do hope your family realise you could do with their support but if not then you will be well looked after and you won't have anything to thank them for. 

 

Xx Jo 

 

Member

things people say omg

Can i also just run this by my lovely understanding friends here. I have 2 sisters one brother 2 sister in laws and 3 nieces who all drive all live near by. Going for my rads which im yet to do is a .iverpool about 20miles each way from me. Im really really scared but thats me anxious and fear of unknown. Ive always been there for sister etc over the year and yet i find it incredible the told me to get volunteer transport and sit amongst stranger when im already frightened stupid. I cantctake it in nobodys offer to help at a time like this, i would make sure my sisters didnt have to sit there alone with no moral support,,. Is this just my cancer head on or would you be upset too...words fail me....sos for another rant ....xx

Member

Re: the things people say! :-)

Can i also just run this by my lovely understanding friends here. I have 2 sisters one brother 2 sister in laws and 3 nieces who all drive all live near by. Going for my rads which im yet to do is a .iverpool about 20miles each way from me. Im really really scared but thats me anxious and fear of unknown. Ive always been there for sister etc over the year and yet i find it incredible the told me to get volunteer transport and sit amongst stranger when im already frightened stupid. I cantctake it in nobodys offer to help at a time like this, i would make sure my sisters didnt have to sit there alone with no moral support,,. Is this just my cancer head on or would you be upset too...words fail me....sos for another rant ....xx

Member

Re: the things people say! :-)

Sue i just had to reply to this...i have exactly same dcis and i am truley truely thankful its that for now. But omg even my own sister said someone she know had proper cancer...proper..omg can u believe i was speechless. Ive jyst had half my boob off , felt like a million core biopsies, 15 rounds of radiation to go and tamoxfen for next 10 years and all the joys that brings with it. Omg proper cancer are these people for real. It really gets mad. Even when first diagnosed it was oh we found a few cell changes but its so easy to treat was drs words, think she forgot to add lib if u have a mascetomy. Omg...rant over...sorry. feel so bad for all our suffering with whatever bc form but we all suffer with proper breast cancer......xxx

Member

Re: the things people say! :-)

Hey girls, 

 

I of course never ever hope it happens, but I'm sure it'd be a totally different case if they had cancer of the "nuts" !! Horrible to say it, but Man Cancer??!!

 

Yikes, I'm makin a swift exit on that one, should the fellas be reading

Much love to you all xxxxxx

 

Member

Re: the things people say! :-)

Hi, all we crave for is compassion &understanding is that so difficult ??
Hugs in return & to you Sue 62 xx
Member

Re: the things people say! :-)

mcnulcc that is exactly how my hubby is I know he is just trying to keep things positive but it has annoyed me a bit
Sue x
Member

Re: the things people say! :-)

Sue62. Totally get the husband bit. My OH is the same when I got recall he said it was nothing when I had biopsy said it would be nothing when I had diagnosis and surgeon said if your going to get breast cancer this is the best sort to get.. He said see nothing to worry about at which point I told him exactly how I felt. I know he trys to make light and be positive but he really is sailing close to the wind at the moment after 36 years of marriage I did expect more.
Member

Re: the things people say! :-)

Hi everyone, I’m new to this forum was diagnosed with dcis on 19th June I’m lucky it isn’t mobile and hasn’t spread to my lymph nodes, had my wle op on Monday, have been reading the comments on here and I can relate to some of them, I’ve been told so many times how lucky I am I haven’t got ‘it’ bad and everyone seems to know someone who has had the same as me and they are all fine, think my hubby has been the worst tho he has made me feel like what I’ve got is quite trivial like it’s not proper cancer because it hasn’t spread I know he is just trying to make me feel better but it’s making me want to scream I think he is just trying to convince himself more than me though
Member

Re: the things people say! :-)

Hello all,

 

I can really identify with some of the comments.  I always use to hate  people saying about losing hair - just think of all the shampoo/products/hair cuts you will save.  oh yawn yawn.  Never saved anything anyway - cost me more in bleeding hats!  I know people were trying to be nice but still found it tiresome and dismissive. 

 

On a bit of a different note as it was obviously not said directly to me.  But - all the newpaper reports yesterday of Carrie Gracie saying, and I think originally reported from an interview she gave to the Newyorker,  that she found  her equal pay award fight with the BBC was "definitely worse than breast cancer" (she had).  This I found irritating/dismissive/insulting -  but who am I to deny another person's direct experience.

 

Regards to all x

 

 

 

 

Member

Re: the things people say! :-)

Perhaps a great deal depends on how well we know the other person, and how well they know us. Some friends and neighbours quite frequently ask me how I am, making it clear they genuinely want to hear the medical side. So that's really nice, and I can let off a little steam. We talk about their activities too. By letting them know how I'm coping at present and what, if any, difficulties I'm having, I'm giving them an opportunity to offer help, if they want to, without imposing on them. If I need something practical doing, e.g. shopping, we have an agreement I'll ask.

 

To the people I know as acqaintances rather than friends, and whose enqiries are probably prompted by discomfort, I tend to say with a nice smile, 'Managing thank you,' or 'getting from day to day,' which is polite and truthful whilst not inviting further discussion.

 

For all the very kind people out there who genuinely want to help and support, there are also some who are scared of cancer themselves and don't really want to think about it. They don't mean to be unkind; they just want to distance themselves and don't think about the impact of what they are saying.

 

When I explained to one friend I have known for many years, in an email, that I had a real fear of being given chemo, didn't feel I could cope with it, would find it extremely distressful for many reasons, not only on account of hair loss, and would probably turn it down, she promptly sent me a link to a site providing wigs and turbans to women who were bald as a result of chemo. (I had already made it clear I wasn't asking for advice.)

 

This hit me on an extremely raw nerve. In an attempt to be kind back again, I sent a cheerful general message, explaining briefly, towards the end, that I had found her response to my fear of chemo upsetting and I was not following the link, which I found rather offensive. She replied that she couldn't see what was the matter with it.

 

At a later date, when I let her know I was having rads, endocrine therapy and bisphosphonate therapy but had declined chemo with much relief as I'm in a borderline group of women, she replied, 'Oh, well, it's still an option if you need it, and there's still that site to go to for wigs and turbans. I'm ordering one of the turbans myself to wear when I'm out bird watching, to keep the midges off.' This was particularly hurtful, given the support I have given her through several very emotional and difficult, life-changing experiences in recent years. I sent a pretty explicit response back again; she insisted I was just being silly and hurtful and couldn't understand what I was upset about. We no longer communicate.

 

Cancer certainly does help us to identify who our friends are; it also loosens the tongue.

 

Best wishes to you all.

 

Community Champion

Re: the things people say! :-)

Tbh, before I was diagnosed, I was guilty of some of these responses to others myself. Someone I knew was diagnosed not long before I was, so I did say when enquiring how things were, the ‘looking well’ comment. Oh well..., it usually stemmed from a sense of trying to reassure, rather than protecting myself.
As ever, when dealing with this from either side, just being kind is helpful.
ann x
Member

Re: the things people say! :-)

I do wonder about the psychology behind such attempts at 'being kind and reassuring'. I think some people are so reluctant to imagine how they might feel with a cancer diagnosis, they are inclined to brush off your disease as being trivial as much to comfort themselves as you. In other words, people who play down what you are going through are really trying to reassure themselves; they're avoiding sharing your pain as they don't want it themselves and don't know how they'd cope with it. 

 

If someone tells me I'm looking extremely well, I just give them the effortless feline look of being unimpressed until their facial expression changes and they say, 'Oh!'

 

If someone tells me, 'Oh breast cancer treatments are so much better nowadays,' I tell them that it's the approach to the patient that has improved, together with laboratory and surgical techniques; the treatments themselves are still all horrible, in different degrees of horribleness. If that isn't sufficient, I suggest sweetly that they might like to try it themselves.

 

If someone asks me how I am, I tend to tell them, 'Radiotherapy is almost over and that's been pretty horrible; hormone therapy is next and that can be pretty horrible too and is expected to last for five years .......' by which time they're either commiserating and making me a cup of tea, or wishing they'd kept their mouths shut.

 

When I remarked to my Breast Care Nurse that I was very conscious of so many people with breast cancer being much worse off than I am, she replied, 'Yes there are many worse off, but there are many better off too. Everyone is an individual and for anyone with cancer there are just so many unknowns. It doesn't help to make comparisons.'

 

So, yes, it definitely is still f***ing cancer for all of us.

Member

Re: the things people say! :-)

Quaggie
Just tell them “it’s stil f*****g cancer! The crass insensitivity of telling someone with a cancer diagnosis that they are lucky is unbelievable. My sister actually said to me “well at least you will lose some weight” I nearly thumped her.
Good luck with your treatment.
Jacq x
Member

Re: the things people say! :-)

I'm recently diagnosed with IDC and facing surgery and probably radiotherapy.  It was found incidentally and early which I know is a good thing but when I've told anyone/everyone, that's what they've latched on to and I get endless 'that's lucky', 'so that's good', 'oh well you'll be fine then'.  I know they are just trying to be positive and reassure me but I find myself wanting to yell 'but it's stil f***ing cancer'!! 

 

I'm starting to feel like I can't talk about it because other people constantly remind me that there are others who have it much worse.  Sigh.  

Member

Re: the things people say! :-)

JacqB - Ha Ha!! Thought it might do. You're very welcome darlin. But, you know, if those people are being genuine, it could, or should be a wonderful boost and help (if you only allow yourself to believe and appreciate it). Certainly a darn sight better than being told you look ill, dreadful, don't you think? Yey!!! Just keep kicking this gawd awful disease in the painful bits (clue - very delicate male parts) Lotsa love and wishing you strength xxx