the things people say! :-)

[Thistledown]

I have just heard of a cracker of an inappropriate comment, a young friend of mine got diagnosed with BC a few months before I did. It was triple negative Grade 3, and she has been through the mill of mental agony, and chemo and rads...

(Our place of employment does not hold any medals for staff welfare, her line manager visited her whilst she was waiting for her chair in the Chemo Day Unit to ask when she thought she’d be back at work ?)

She went back after much nagging, far too soon, whilst still undergoing radiotherapy, and the planned phased return turned in to full time after exactly one week..so she went to her GP and got another sick note, until her treatment ended and she was recovered from the effects.

Apparently the supposed ‘HR manager’ - although we don’t really have one as our HR was contracted out ages ago (this is the Civil Service btw), rang her at home to ask ‘what was the reason for her being off sick now?’ 

Friend - ‘Has the doc not written it on the sick note?’ 

Woodentop (aka HR) - ‘Yes, but it says Breast Cancer - you can’t still have that surely...’

Words absolutely failed me - dreading my own return...if I encounter The Enlightened One and get something similar, I’ll be no doubt summarily sacked, - if I can refrain from actual ABH !! 😖😄

[Appletree]

Excellent Rosieposie

I think I'll keep a similar one up my sleeve: 'Thank Heavens for the NHS.'

[Maggie48]

Pecan and Rosie I like those answers!! x

[Rosyposie]

Exactly Pecan!!

I usually respond to the ‘You're looking very well’ comment by ‘I’m being very well looked after.’ That covers it!! 

Both the treatment and care from the medical team and my lovely husband. Then I don’t have to explain anything more.

Maggie48 - your husband sounds really wonderful!! That’s what you need by your side.

Hope everyone is doing well today.

Take care.

Rosie xx

[pecan]

I have just thought of a response to those who say we are brave:

"Why, what would you have done?"

[ann-m]

Yes, defo everything in moderation, especially wine!...cheers 🍷🥂
ann x

[Jill1998]

👍

[Maggie48]

Quite right Jill, everything in moderation!! Yes I got it right second time around 😉

[Jill1998]

And yes wine is allowed !! Just maybe not the whole bottle .

[Jill1998]

You are very lucky to have him Maggie - despite the blackhead comment !

[Maggie48]

Oh I agree ladies I’m not ‘more able to cope’, strong or brave either, just getting on with it as I didn’t fancy leaving it untreated!

Some other recent crackers -
‘You’re coping so well’
“I’d be hopeless, I don’t know how you cope”
Are you sure you’re allowed wine?
They have other drugs for all the side effects though, right? (Wouldn’t that be amazing if it was true!?)

I know people are kind in their impatience for us to ‘feel better’ and ‘get back to normal’ but as my hubstar said, ‘I expect we’ll go forward to a new normal to be honest.. the treatment is at least 5 years, not just the op’ I was super proud, then I cried, then I had a glass of wine!

P.s. he’s not perfect I had my planning and 3 tiny tattoos spots today, apparently they look like blackheads - charming 🙄

[Appletree]

..................'this could be the thing to kick start a healthier life for you'!

Quaggie, that's just bl**** patronising. It says a great deal for your constraint that you didn't tell your 'friends' it might be to their benefit to try it themselves.

[Appletree]

Quaggie, why don't you say just that to your brother? Give him a bit of a shock.

At the outset, I sent an email round to friends I've known for a long time, with a bullet point list of things I would prefer them not to say. Being brave was one of them, together with being courageous. I made the point you have, that those of us with cancer have no option. I'm just dealing with things the way I deal with them, because I have to.

So far, I've managed to prevent comments of that sort face to face by looking very firm when I see people. If someone says, 'you're looking very well,' I just stare and raise my eyebrows slightly, which illicits an 'Oh!'. Well, I'm not exactly unwell.

I remarked to one friend recently that many of us find that cancer loosens the tongue and we become more straightspoken. Right on cue she said, 'You were straightspoken before.' So there we are. And why not. Of course we don't want to hurt the feelings of family and friends who mean to be kind, but we shouldn't sacrifice our own feelings either.

Tell them the way it is!

[Jencat]

Quaggie, you're so right and your last comment made me laugh! I've had 'you're so brave comment too' and as you say, we don't want to be, but we have to get on with it  x

[Quaggie]

Maggie - I sympathise on the comments you mention below.  It's amazing how many people have said to me something along the lines of 'this could be the thing to kick start a healthier life for you'!  Like I'm somehow to blame for cancerous boobs because I'm a few kilos over the 'ideal' weight and I'm not a gym bunny.  I do just want to slap people sometimes.

The one I'm finding hardest to deal with, because it's meant in such a reassuring way, is being told 'you're being very brave'.  I don't think I'm brave.  I'm terrified, cry frequently, can't get cancer out of my head most of the time and just wish it would all go away and I could go back to my normal life.  But I can't.  I don't have a choice but to get on with it.  I'm not sure that's brave.  What is the alternative option?  My brother keeps saying it to me a lot but I just want to say 'I don't want to be f***ing brave'!  

[Appletree]

Presumably that was a compliment from your sister, meaning that she sees the real you, rather than the you whilst you are undergoing treatments. It suggests you are coping extremely well on the outside, whatever you might be feeling inside. (And that, of course, is another matter.) Well done you.

As for your acquaintance in the Co-op, I'd have been tempted to reply loudly, 'Oh, I"ve been warned I could keel over any minute. Could you carry my shopping for me?'

[JacqB]

Hi Ladies
Just in from a quick trip to the co-op where I bumped Into an acquaintance who’s sister passed away from BC two years ago. She said I looked well then asked me what grade and stage my tumour is, this was in the middle of the shop and surrounded by people, it caught me completely unprepared. Not sure if she wanted to assess my chance of survival but I was dumbfounded. I lied and said I didn’t know. On a lighter note, went dress shopping with my sister yesterday, she got a bit hot and bothered trying things on and asked me if I had a scrunchie she could borrow! 😂
Jacq x

[mcnulcc]

Kip... Your mum sounds just like mine. I do love her but at the moment I need a lot of space between us. Like possibly a whole continent....

[Kip]

Hi I don't know how i ended up here but your posts have made me smile... I so get the inappropriate comments... Especially the ones from mothers!  Mine is wonderful and I love her to bits but sometimes...  I too didn't tell her when I found the lump or had biopsy but wanted until diagnosis, j just knew she would worry.  Once i knew e it was BC we went to tell her.  On hearing the news she broke down in tears and said ,"if something happens to you i will kill myself". Hmmm no pressure there then!  She did apologies at a later date tho.  She has also repeatddly told me abouta a terminal lady she knows"but it's ok as it's pacreatic".  Also on asks me frequently what hair colour I use even though I have none!  Bless em!  Perhaps a 2 for 1 offer on mums Mclnucc?

[Maggie48]

Oh Georgie Gee bless you so not helpful... hopefully you saw the dark humour in it. My hairdresser said he thought bladder cancer was easier than Breast cancer (he’s not had BC but was being nice!)

Today’s favourite for me was
Friend “so have they told you to lose weight”
Me “no”
Reply “oh...I thought they would”
Me “they might, .... when I’ve finished treatment”
Reply “have you thought about 5&2?”
Me “not really, tbh, I’m focussing on treatment at the mo..... coffee?

You can imagine the Bridget Jones commentary in my head....

Mcnulcc - have fun planning spending the kids inheritance!

Hope those having treatment this week had a good Monday x

[Georgie Gee]

Hello all, 

I was with my daughter and future son in law yesterday in hospital (just had 4 nights in with neutropenia/ sepsis) and a nurse was trying to reassure them about my fate.  She said to them "well if you could pick a cancer, breast cancer would be at the top of my list". 

I said

nothing. 

[Appletree]

Quaggie, perhaps you need to get someone to check your wound.

I was told to take my dressings off myself 5 days after surgery. My GP thought this was a bit much and arranged for a district nurse to come round to do it. (As he said, I'd just had major surgery.) The district nurse took the steri strips off as well, which as it turned out, should have been left on.

Anyway, the wounds were fine, but after a couple of days, I had an outpouring of straw coloured serum from the axillary node clearance wound. (I'd had all the lymph nodes taken out on that side.) This seepage of serum went on for some time so I returned to the hospital ward where the surgery had been done. It's apparently very common to have a build up of fluid after such surgery, but it does need expert attention. I had to keep dressings on the axillary wound for several weeks and had several visits to the wound clinic.

Have you access to a wound clinic, the ward where your surgery was carried out, or a breast care nurse? They should have given you a source of help should you need it. Or you could phone your GP and get a special appointment. Mine made a couple of home visits in the weeks immediately after my operation.

It might be as well to have your wounds checked by a nurse or doctor, and obtain some spare dressings of a suitable kind.

Perhaps your brother could take charge! (Or perhaps not.)

[Jill1998]

I had dressings that you could bathe in and they told me that when they came off naturally that it was fine to leave it uncovered -that was about 5 days after surgery so it will probably be fine .It was similar when I had hysterectomy - they said let air get to wound unless infected .

[Quaggie]

Appletree - I'm relieved your consultant said WLE was major, my surgeon was leaving me feeling like I failed somehow.  It didn't help that my brother was there when he said all these things so now my brother thinks I should be fully back to normal by now and if I say I'm tired that I'm just laying it on a bit thick! 

I'm now caught up in anxiety about my dressings as my lymph biopsy wound dressing caused a reaction and when I removed it all the steristrips came off too so the wound is uncovered 5 days after surgery.  

[mcnulcc]

Mahamilton.. So pleased that the postman is safe again. I managed to get a holiday in between planning meeting and start of Rads. Was good to get away and not having to be constantly thinking about hospital appointments. Hope you have a lovely time. My sister has been a star throughout all of this and has asked my husband and I to go away with her and brother in law next year,busy now planning a trip that will definitely make a massive hole in the kids inheritance. Ha ha. Oh and in case anyone is wondering my mother is definitely not tagging along.Have a good day everyone hope treatment is going to plan xx

[Maggie48]

Oh Quaggie your surgeon sounds like they’ve time traveled from the 1950’s!

WLE is major surgery, just look at the consent process.... I felt strangely diminished when a good friend asked if I’d had local or general, I can laugh about it now, we’ve all been clumsy. That’s why this forum is so helpful.

p.s. I had a gynae consultant ask me once if I had children - bearing mind where his head torch was shining it took all my effort not to reply “can’t you tell?” 😉

[Appletree]

Quaggie, your surgeon sounds thuggy.

As for a WLE being minor surgery, I'm not so sure about that. I had a bit of an inferiority complex, until attending my post-op, post-mdt meeting session with the head consultant breast surgeon. He asked me how I was, so I explained that whilst I was very robust on the outside and quite pragmatic, I felt very frail on the inside. He immeditaely gave me a very warm smile, said that was only to be expected, I'd had major surgery (he described it as that) and a general anaesthetic, and there were all the psychological factors too to deal with. He implied it takes as long as it takes. 

Surgeons do seem to have the reputation of being somewhat distant and removed from the emotional effects of their work, but then presumably they have to be very detached as one slip of the scalpel ............ It doesn't bear thinking about.

I hope your future sessions with consultants are much more supportive.

[Quaggie]

Can I add my surgeon to the list of inappropriate things to say to people with breast cancer?  He's been great from a medical point of view but lacks tact or much empathy when actually handling people.  

When I went for my op on Friday, as I walked (absolutely terrified) into the anaesthetic room, he turned up and said 'where have you been?  We've been waiting ages, you're making my whole list late now'.  I was shocked. I don't think he was joking either.  Hardly my fault when I'd been sitting in the waiting room to be called for over 2 hours!  Didn't really put me at my ease.

And before and after surgery, he kept saying 'this isn't major surgery, just go back to normal straight away'.  I know he does this every day so for him it's routine and my surgery (a WLE) is at the lower end of the breast surgery scale but for every single patient facing the knife for an invasive life-threatening disease it is damn well a major thing.  

I was quite glad when I saw a different consultant to get my wounds checked as she was so gentle, reassuring and clearly knew how to empathise with the patient.  

You'd think surgeons, especially cancer surgeons, would be expected to go through some sort of empathy training! 

[Maggie48]

Good luck today mcnullc - look forward to reading the tabloid headlines, "mother forced into Welsh exile, for her daughters health!"  Thanks Jill, yes our nearest & dearest really don go through it too x

[Jill1998]

It's hard on those around us too .Hope you have a nice holiday .

[Maggie48]

By way of an update I got my letter on Friday, postie has resumed his normal relaxed posture and I’ve dnjoyed planning a holiday between my planning meeting and the start of Rads. I think the Hubsters earned it ( should really be Hubstar now), the transition from the pill to tamoxifen hasn’t been fun... congratulations Alibobs, it’s not easy making changes st the best of times is it x

[Jill1998]

Hi - I am a couple of years on now from radiotherapy - I was very tired for 2/3 weeks after finishing and had a very slow phased return to work .

[Maggie48]

Oh Jill, that’s btilluant, truely a Victoria Wood scetch in real life - biting our bras in the 21st century’s, the suffragettes would be proud!! How’re you feeling post Radiotherapy?

[Jill1998]

Good luck with week 2 !! I was one of the "lucky " ones I had to wear a bra during radiotherapy as my boobs were too floppy and they couldn't guarantee to keep them in the right position !!! So they " customised " one of my cotton bras ( put slits in it to show tattoos - pen mark to help line up machine !!! I knew it was my turn next when they ceremoniously carried through my Madonna bra to the treatment room .When I was finished I burnt it ceremoniously in the BBQ !!!

[mcnulcc]

Hi Delly Unfortunately no offers to take her as yet but my sister is working on a cunning plan to ship her off to my brother in Wales for a few weeks. I invited her over for dinner last night and my husband hid the carving knives before she came so all is well. I won't be arrested just yet. Well today sees the start of week 2 of Rads so must go and shake myself and gear up for my daily flashing of the chest session. Take care everyone and hope your treatments go well today xx

[Alibobs]

Now I've upped my game,changed my diet, stopped smoking, cut down on alcohol, increased my exercise regime and managed to lose some weight. I've never felt better!! So how come I keep getting asked 'you've lost weight! Are you ok?' Aaaargghh!!!!💖💖💖

[delly]

Ha Ha mcnulcc. Has anyone offered to buy or take that Mother of your's yet??
Keep up with the sitcom, girls. Couldn't think of anyone better than our dear, greatly missed treasure, Vicky Wood, to be in the company of. Couldn't remember if it was BC we lost her to, just know it was very sudden. Watched a tv tribute to her again, recently. Still chuckle at her talking about a 14 yr old unused tampon in a handbag pocket, which doubled up as an attack defense. Stick it up their nostril so they go into toxic shock !!
Keep ringing those bells xxx

[Rosyposie]

Hello ladies 

I’ve  so enjoyed the things written on this thread! I know so many thoughtless words can be so upsetting but I’m also pleased that, through the gritted teeth and tears, we can also laugh about them together too.

I love the idea of the imaginary sit-com and I’m going to try to keep this in mind when I receive stupid comments!!!

I was asked the other day about when i had my radiotherapy sessions, whether i went into a cubicle and was zapped...???? It’s not exactly a tanning studio...!! Oh dear.😡😂

Take care all and I wish everyone good luck with treatment and recovery.

Rosie xx

[Appletree]

Is it a tradition in most radiology depts of hospital cancer units to have a bell to ring when patients have had their last rads treatment?

It's a really lovely idea. I finished my own course a couple of weeks ago, rang the bell and much enjoyed being a celebrity for about 30 secs! It was mid afternoon, so there were plenty of kind people waiting in the reception area to clap. I feel for those whose final sessions are late in the evening when there's hardly anyone to share the moment with.

The dear old creaking NHS is doing its best to make the journey as supportive as possible.

@Mcnulc, hoping to hear a little more of your mother's wisdom.

@Mahamilton, something else I like to do whilst imagining I'm the star of a sitcom, is to carry on a silent voice-over in my head. Whilst being extremely polite and correct out loud, I match the dialogue with more pithy private comments, along the lines of Bridget Jones's diaries.

[mcnulcc]

mahamilton glad I made you smile. Her comments regarding my breast cancer are just a taste of some of the bizarre things she has said in the past. Like you I do feel like my life is a really bad sitcom at the moment. Last two days the Rads machine has been on the blink an hour and a half wait yesterday two hours today. However watching people ringing the bell and seeing the joy on their faces made the wait so much more bearable. Hope you're letter comes before the postman reports you xx

[Maggie48]

@mcnulcc I hope you don’t mind, but your post did made me laugh, heaven save us from our mothers eh? Not sure if I had to go and get a cancer I’d choose this one tbh.
Like @Apple tree I have often suspected I’m actually an extra in an extended Victoria Wood sketch (even pre BC) I’m certain a sense of the ridiculous is what’s getting me through this.

I’m 8 weeks post op and waiting for my radiotherapy schedule, as with every activity on this ‘journey’ it’s frustrating being ‘on hold’ for me & hubster (should really be hubstar now) I’ve greated the postman with indecent enthusiasm every morning this week and am expecting an injunction soon 😉

[mcnulcc]

JacqB. As I said love her to bits but she is never going to win mother of the year award. Ha ha.. Just another tale to tell when this is all over. Xx

[JacqB]

@Mcnulcc
🤦🏻‍♀️ If we were playing insensitivity top trumps, I think you’d be in with a chance! 🤦🏻‍♀️
@Appletree, I know what you mean, I found myself in hospital with neutropenia feeling like a fraud because everyone else was sicker than me. It was the next day when I realised, hold on, I’ve got cancer! Eek! Still catches me unawares three months in.
Hugs
Jacq x

[mcnulcc]

Hi well today's comments have put such a smile on my face especially as I have spent this morning with my mother who has been unbelievable since I told her about my diagnosis.
I did not tell her that I had a recall or a biopsy as there was nothing to tell so when I finally got told 'It's breast cancer you are booked in for surgery next week' I went to her house that day and told her.
Mother's reaction..... I am so disappointed in you how could you have not told me!!.. Told you what mum there was nothing to tell.... Well I am still very upset and hurt she said you have really disappointed me. Needless to say my husband nearly lifted me out of the house to save me facing breast cancer behind bars

Fast forward 12 weeks now post surgery and day 2 of radiotherapy. Mum's thoughts for today... I am still so hurt by you don't think we will ever have the same relationship we had before you went and got cancer. Hello like I went and got it on purpose!.

So to all you ladies out there I have for sale one very disappointed mother I am prepared to pay good money for someone to take her away at least until my radiotherapy is finished.xx love her really but still want to kill her.xxx

[Appletree]

Besides being quicker to anger, JacqB, I also keep feeling as though I'm watching a sitcom, which is so realistic that the camera is cleverly positioned in my head. This means that I'm watching my arms and feet taking action and hearing my voice, but that all of these really belong to an actress and not me. I'm out of sight behind a screen.

I'm not sure it's really hit me yet that I have cancer, which technically I still have and will have for some time as there is the potential for it to come back, whatever the treatment. So far, I've had surgery and radiotherapy, and have started Anastrozole (having had an allergic reaction to Letrozole). Tomorrow I have a Zolendronic Acid infusion. I shall trundle down to the hospital and, no doubt, carry on in my private sitcom for some time.

I just wish Channel 4 News was really a sitcom. It doesn't exactly present us with bundles of joy to uplift our spirits.

Best wishes and sweet dreams, Everyone.

[Appletree]

Indeed Rosyposie, I'm careful about sharing my diagnosis and tend to go by instinct, which isn't always the best guide.

I think the important thing is to be abe to feel you are in control of your own situation, so whether you beam back at someone or give them a flea in their ear, you feel comfortable with your own response. I think women are still being brought up to put other people's feelings first; this was definitely the case in my childhood in the 1950s. This is all very well on some occasions, but a cancer diagnosis puts our own feelings definitely in the just-as-important-as-anyone-else's-feelings box.

Life is too short to be a martyr and whatever our diagnosis and personal prognosis, we are having to face our own mortality.

Have a nice, restful evening, everyone.

[Appletree]

Optimissy, if you bounce back at her, quite right too. I would be pretty explicit in my response to an observation on those lines, and it would be something of which my late Mother certainly wouldn't approve.

I totally agree that it's one thing for us to make light of our own situation, and decidedly another for someone else to trivialise it.

From what I've read in here, and also from the very thorough and informative BCC booklets, it seems it is very common for bc patients to have shorter fuses! I call it being realistic about priorities.

Best wishes to all

[JacqB]

@optimissy64
That’s shocking! How dare she? I’d be incandescent! (I do find I’m quick to anger nowadays)
I sincerely hope there is not a third time.
Best wishes
Jacq x

[Optimissy64]

Appletree I love it!!! Wish I'd thought of  it when i had my diagnosis 18 months ago.

My sister insists on referring to my "cancer scare". I've told her twice now that it wasn't a "scare" - that's what people have when they think they have cancer and it turns out it's not - I've had cancer! 

Personally I have no difficulty in making light of my diagnosis and treatment myself - that's my prerogative - but I'll be damned if anyone else is going to minimise it! 

If she says it one more time my correction will be somewaht more noisy.... X

[Rosyposie]

Jill

Oh you are so right, cancer is a lonely place! No one can understand it unless they have been on the journey themselves. I too find that this is the place where I can seek support and reassurance and that someone will understand it like it is. Well meaning friends and family don’t always get it right!

Appletree

I love your email! As Jill said, you certainly told them in a clear and concise way!! Well done, lady!!

I've been very careful whom I’ve chosen to share my diagnosis with and still sometimes I wonder...!

Hope everyone is ok today.

love to you all

Rosie xx