Hi Squishy ,welcome to the forum .Im sorry you are having such a tough time .Its very hard for people who haven't been through this to understand the rollercoaster of emotions you go through and the paralysing fear you experience some times .Sounds like your results could have been given to you in a much kinder and more positive manner by your doctor.If you are starting chemotherapy soon there are monthly threads on the forum where people going through chemo at the same time can support each other and lots of advice and support from those further down the line . I will post you a link.Good luck with your treatment .Jill x
I was diagnosed at the end of May. I to went through a long surgery to have reconstruction & wondered if I was doing it for the right reasons or was it for vanity!!! Everyone has said how great I look, I just smile & say thanks.
Yesterday I had all the results back which knocked me for 6, the cancer had gone quite extensively into lymph nodes & some evidence found on my chest wall, the doctor I saw (I hadn’t seen before) was terrible & made me feel like I was going to die & went on to say don’t blame yourself. 😡
Anyway my Chemotherapy treatment starts soon & I'm so petrified & can’t get my anxiety to calm down after been told & having to read all the information.
No one wants to here the word ‘cancer’ & suddenly you’re thrown into it, having to learn about it, understand it, live ‘normally’ with it.
Another constant saying is stay positive, positive mind will help you through.....I know, but then I feel I can’t say my true feelings & that actually my brain is swapped with doubt.
A good comment I’ve had to is “Why are you crying?”
I find whenever I put things in writing like I have I feel guilty, there are others in a worse position than me, I should be positive for my family, I am alive & should enjoy every day, but it’s so hard.
Found this thread and it has helped. Some shockers, luckily I've had nothing as bad, but when people 'get it wrong' it hurts and sets me back. I'm still raw, as only diagnosed early May and since have been in the whirlwind of treatment, op and currently rads. The worst was ' well that's it over then, you haven't got cancer anymore, they have cut the tumour out'. Several ' you look so well' ....well I've been off work from a stressful job and I sleep a lot, so I guess explains things...... but I'm dying inside.
Also had, response of "fab" to a text to let someone know I was starting rads. She asked me to let her know, so I thought she might offer a bit of support.
After undergoing mammogram x 2, biopsies, ultrasound, CT scan x 2, Bone scan, MRI, Echo x 3, PICC line inserted, gruelling chemo, flu, ECG x 3, bladder ultrasound, chest X-rays, stomach X-ray, neutropenic sepsis several times, blood transfusion, MX, node clearance, 13 inch scar in place of my beloved breast, RADS tattoos, RADS, infection in my chest wall and axilla, Herceptin injections, filgrastim injections, MUGA scan, antibiotics (gawd knows how many!!), Zolendronic acid infusions, Letrozole and it's side effects, cording and now lymphoedema...
Never mind all the waiting and worrying and appointments and the effect on your mental health...
If one more person tells me that Breast Cancer is "one of the easiest cancers to recover from" I may not be responsible for my actions......😡😤🙄
Stay strong Ladies! 💪🏻🎀🌸 xx
Mmmm, isn't it very much down to the difference between "empathy" and "sympathy"?? "Empathy" being that of a "shared" experience, a shared actual "KNOWING" experience. And "Sympathy", being a "trying", and a "wishing" to understand/see what you're feeling, going through, but NOT having experienced it.
Is why this Forum is so good to reach out to, and be able to share with alike experienced people.
I have had my fair share of what I consider "ignorant" comments, often said with the "best of intentions". E.g. to my being single and boob less - "You'll find someone who loves you as you are"!!! Yes, thank you. But, DOH, If I'm not happy looking at myself, I'm certainly not gonna be happy with anyone else looking at me, am I?! How many times I must have said such, each time with increasing annoyance. But felt it important to "inform" such people, so they could gain a better understanding.
Awww, jennyj - I am actually massively impressed by your hubby's concern, care, support. Sounds like ENCOURAGEMENT to me. Him wanting to bolster you up!! It may not be in the way, or using the words you would use or wish to hear, but all seems very loving to me. Bless him
I think we do need to remember, how awkward and difficult it can be for others to deal with. Yeh, can also be very annoying though.
Much love xxxx
Oh yes, the “You look so well/soon be fully recovered”
I’ve just had an 11 hour operation, I’m dosed up to the eyeballs on painkillers and I’m falling to pieces in my mind waiting for the next set of results and treatment plan, but sure, I’m “well on the way to recovery” according to my OH!
“My friend didn’t experience that.” Aaarrgh! “You don’t seem to be having an easy time of it.” In other words, I’m a wuss or a drama queen. Actually, we’re all different and I, unfortunately, did not get on well with chemo!
I think my main aggravation has been with the specialists. I’m queen of the phobics (anyone with life-controlling phobias will know they leave little room for fearing anything else). Medical professionals have tried hard to get me to appreciate the gravity of the disease rather than thinking I actually might be better off as I am, worrying about practicalities.
Oncologist 1: “It’s quite bad. It even broke out in your skin.” Well yes, and isn’t it a good job too or I’d never have known because my mammogram was clear and, come the next mammogram, I’d have been at stage 4 rather than stage 2.
Oncologist 2: “Do you realise how seriously ill you’ve been? There was less than a 40% chance of survival.” That was after neutropoenic sepsis and no, since my policy has been to know as little as possible, I didn’t know. I was here, recovered - but my husband became even more of a wreck.
Oncologist 3 at the END of all my treatments: “These symptoms simply aren’t associated with Paclitaxel. We have to see if the cancer’s spread to your spine, given how heavily node positive you were.” Great. The NHS website contradicts her and I’m still not free of effing hospital appointments! I was told I was NED last January and now this. For the first time in 10 months, I am experiencing a degree of bc-fear - what if she’s right?
Worst, my psychotherapist repeatedly tried to get me to accept that this is a life-threatening condition. As if I didn’t know that - I just have my own way of coping with it. It’s not denial; it’s a coping mechanism and I coped with everything.
Rant over. If you read to the end of this, thank you for letting me rant.
I too am fed up of people who seem to think that going through BC is a walk in the park. I have had an operation and so far one session of Chemo. So I am near the start of my journey. People tell me I look well and that I am lucky to have caught it early. Well l don't need them to tell me what they think I need to hear. I would rather they asked me how I feel so that I could tell them the torment of fear and feelings I have inside. Like a swan I may be gliding on the surface but underneath......
Thank you for being there ladies, it's good to know that some-one understands.
I have had so many people say to me , --- I look so well ,radiotherapy nearly over , it can't be so bad as you didn't need chemo ! I have had to have three operations this year and going through the radiotherapy at the moment ! I am still recovering from the mastectomy and reconstruction surgery and my breast is very swollen ! All constant reminders ! People who haven't been through breast cancer do not understand that when treatment stops it doesn't just all get better straight away ! I am so so tired and emotional still !
This forum is my saviour xx
The things people say can sometimes be insensitive and at times hurtful but generally are said out of concern and care for you .I think back to how (before I had any experience of cancer) I reacted when my next door neighbour told me over the garden fence that he had terminal lung cancer- I said something ridiculous and then legged it back into the house !!! Now I have experience of cancer myself ( twice ) I am far more comfortable talking to people and hopefully saying something a bit more helpful !!!
Any comment that starts “at least ....”, particularly “at least they caught it early” (ermmmm, no, actually, they haven’t, waiting for a bone scan)
Plastic surgeon who 2nd day post-op said “well doesn’t that look good?” to which I really wanted to reply (but didn’t) “No, I look like Frankenstein’s monster”
The “you’re so brave”...... although a couple of times my response has been “so when am I allowed to not be brave”
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 💖
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.
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
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.
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.
(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!)
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.
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
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.😪
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
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).
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
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"
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 😂😂😂
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!
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.
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 ! 😡
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!
I still can't believe that a BCN said that - it is honestly staggering. I swear I would have lost the plot with her !!
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
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.'
'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.
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.
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
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.