hope u managed 2 get zapped emily?! i got asked 2 day if i would b able to change nxt wks apps from mid morn(asked for times when kids at school) to 8.30 in morn!!! big fat no! i said. cheek of them. like you havnt got a life to lead if u have this c**p disease! rads has been ok apart from major tiredness this week. taken to havin a nap in afto that helps(if the kids let me!) with hindsight prob shouldnt have gone back to work p.time the week before rads started. hope it went ok 4 u. love alex xxxxx
Bless 6 ! I remember mine at that age real little people love it when you can have random conversations with them at that age. It will be lovely to see her she has been through this but they didn't find her primary so she was scared and that was 20 years ago! she sent me very sweary texts when I felt rough after FEC4 and told me to get off my a--e and do my xmas tree! only a friend could do that!
what a bummer not finishing for your birthday! I don't know if you are like me but I tend to target dates to be gotten over with and now it is has put me all about ! Hey ho waiting once again to see if it is on today!!!
morning emmy,mines on 16th. my youngest son is 6 the day before.will b nice 4 u 2 see ur friend, take ur mind off things! alex xxx
Yep same here twice! My husband was so angry! I have a sort of time table of dates when we go for etc;etc and it really throws me out as I concentrate on the next thing, the 2nd op totally threw things out and the lady who went into theatre before me was so scared she could barely walk but it wasn't fair to be ready and told that you're 1st of the day and find yourself still waiting at lunch time! Me moaning I guess we are the lucky ones at least we found them and got sorted. The delay means it is pushing things as I have my best friend (we have been friends for over 35 years) due to come from Aus and this is making it so close to the date I will be a wreck if it changes!!!! more aaarrgghhhh!!!!!! Have to wait for a call in the morning to go so will be on pins! more nervous as well as cross love Emily
p.s close to my birthday on 18th thankfully it's a Sat! what date yours?
rubbish isnt it emmy? i too had 4 hr delay 4 surgery. was a gibbering wreck by the time i went to theatre. im done 11 of 20 rads 2day thought i was finishing on my birthday but no. machine closed 4 2 days 4 servicing so added em on after! ggggggrrrrr. cross love alex xxxx
aaaggghhhh!!! here I was ready to go for my first radiotherapy thinking any time now for my lift and got a phone call to say machine has broken down start tomorrow!! so here we go start again tomorrow, what a journey done my chemo, done my surgery (got told 1st on list only for them to take crying woman in before me!) so waited an extra 4 hours then same again for 2nd op! Now started Herceptin thought great now to get started on rads sorry for the rant but I set myself target dates and this has thrown me off! Rant over guess I should go have lunch now and make a calming cuppa! thanks for being here all xxx
lol shiel! NE (silly beardy trouble maker!) need 2 get with it on the txt talk.(will ask my 14 yr old l8rs hee hee) gosh i need a kip. love alex xxx
Sorry MB I was so trying to be an insider!! Ever since I got to know who NE was on the woods thread I've got ahead of myself, sorry. I think there's an anti-jargon course at work I need to go on.
el katrano, my bestest buddy has said reallly funny and black humour things that made me nearly pee myself(darnt say on here tho) no im not incontinant yet by the way (young 41 lol) god my spellings pants but make ur own pizzas are calling. love alex xxx
so right CM, only certain folk (and the recipient) get it. i personally thrive on it. if every one patted my hand and gave the "brave"speech i would explode with either fury or tears depending on the mood of the day! usually the latter tho and i dont like feeling like that cos i wouldnt have blubbed if u hadnt asked me!!! god, i sound like a right self indulgent cow. love my hub,kids and family to the stars and back(will, aged 5 quote) but when i have a bad day ihave a bad day. poo i know but tomorrow is another day.right im waffling, time to do some cooking, promised youngest homemade pizza (groan) love alex xxxxxxx
But Sheil, I'm sure you HAVE a beautifully shaped head under all that hair, and you're SOOO inspirational! (I just feel like asking "what the F have I inspired you to do then, huh?" Usually met with a blank look - like I said, clueless.)
Completely with you on the black humour thing, but there are only certain people who can do it, and it depends on the sort of relationship you have with them. Unless a person really knows you and has the right sort of relationship, they should avoid attempts at black humour or risk the wrath of "baldy fat man" as my darling 12-yr-old calls me (usually followed by a cheeky grin, met with a swift slap round the closest ear and a grin back!)
Yep, loving the poetry. CM I think I'll keep that little expression for when I need it next. That's if I can remember it, cos as I keep telling everybody - dementia is my fate, late onset of course.
And MB - I know what you mean about the friend with the black humour, I get lots of that from friend at work, but she's been through all this 5 years ago so has a bit of an inside take.
I'm STMBT of sore bits. I just got letter today saying I've got osteopenia, and unfortunately have to be on aromatase inhibitors which will probably only make it worst. I'll end up a bent old wee lady - oh not, a man, cos I'll have no female hormones in me by the end of it all. But I suppose I should be grateful, I'm still living 🙂 And should say grateful for no chemo because I SOOOO don't have a nice-shaped head!!
GIJane - I feel that bravery is about choice, bravery is going into a burning building to rescue someone, it's going into the line of fire to save a mate, it's throwing yourself into the sea to rescue someone drowning....... where you could choose not to but do it anyway, that's bravery in my eyes.
We don't have a choice about having a disease like this, noone of us opted for it out of bravery, to save someone else or something like that.
Those people who are finding it hard to cope as normal aren't therefore failures.
What we have is courage in the face of adversity - and survival instinct and also, we're the same people we were in spirit and keep carrying on as this which people see as "brave" perhaps.
I'm the same person as I was before my diagnosis - sometimes a little more scared, a lot more tired and bored but basically ME.
And this war imagery used - Battle, Fight, War, Beating...... I find this a bit insulting to those people who don't "Beat cancer" - it is not a choice to survive or succumb to cancer by sheer force of will, personality or joie de vivre alone, or positivity - its a lottery and that's it. There is no choice about it, that is what makes it so so horrible!
totally agree CM and elkatrano. cannot be fussed with whom i thought were close friends and i feel have deserted me. my closest matey is my eldest sons best mates mum whom i have known since i was 16 but dont see each other that often.(good txt buddies usually enquiring on our respective sons whereabouts) txt from her last wk read:how u doin my beautiful but diseased friend? hope the rads r treatin u kindlyand so on and so forth. i replied. bit sore and tired but a cold wet flannel does the trick. she replied, told u to get the bu&&&rs chopped off! much less hassle. not 2 everyones taste i appriciate but a good mates humour and genuine concern is getting me thru this experience. love alex xxx
could always try smiling sweetly, and saying "the second word is off" (pick your own first word!!!!)
I think we ARE brave - even if we don't feel it. Being brave isn't not being scared, it's being scared and finding the strength to cope somehow - and d'you know, we do that, most days. I don't feel inspirational, but loads of people find how I'm coping with it inspiring.... great. The trouble then is, when we do have an "off" day, it's harder to say... hang in there precious ladies!
CM - If I'm allowed to have favourite posterthen you are mine 🙂 You make me chuckle! I'm not "Brave", sometimes "Courageous" maybe, I'm just trying to get through this as best as I can, not for any bugger else but for me, I'm no martyr.
It's awful having "Oh Eff Off" days when people are only trying to be nice, then I have to remind myself, before any of this I had these days anyway, just about other things 😉
Some people just have NO IDEA, so if someone bumps into you on a bad day, you could just reply, "you really haven't got a clue, but thanks for your good wishes" and leave it at that. At least you will have got them thinking without being nasty.
It all depends so much on context. I had a friend who came out with the full house of platitudes - "at least you're still alive, you have a beautifully shaped head, you're inspirational, you're brave" (none of which is true - except about still being alive of course) - and she was being sincere and loving, so I didn't bite her head off, just had a bit of a laugh with her about how dreadfully inadequate those phrases were, and also dreadfully inaccurate, particularly about the "brave" bit! What I do isn't bravery, it's just sticking my fingers in my ears and saying to cancer "la, la, la, I can't hear you!" most of the time.
Ha ha ha, so many times when I've had a bit of a self indulgent whinge about losing hair, potentially losing brows/lahses, putting on yet more weight and having a mutilated boob, I've also had people saying "at least you're alive" (OK, sometimes I've thought this myself too, to make myself feel better) but you know....... they're alive, they haven't had to go through life-threatening disease. They're not having to go through an early menopause, can't have children, feeling unfeminine, worrying about future, scared stiff of mets and chemo not working, broke as hell as can't get a job whilst going through it, feeling alone, being bored out of brain, ill etc.
When I'm going through my bad days, I try and avoid people because I think if they say the "wrong" thing then I'm going to say horrible things back to them and then alienate my friends. Because they don't really truly understand what you're going through mentally as well as physically - I wouldn't have done before this happened to me.
So what DID you say, Ninja?
How about "swap you - I'll have your hair and eyelashes and eyebrows, you have mine and see how grateful you feel."
"Why thank you, I am so grateful to be alive that I simply don't care that I look like Matt Lucas."
"and if you say I have a beautifully shaped head you'd better run because if you're within arm's reach I'll "%$&£^&£ deck you!"
(Oh, ok, maybe the last one's for the "inner voice" to say...)
I see we're getting all literary! 🙂
Back on-topic...as said to me 3 days ago:
"It doesn't matter if your hair & eyelashes have fallen out and your eyebrows and nails all fall off because you're still alive".
(or to her) OK, I'll shave your long hair off, shave off your eyebrows, pluck out your eyelashes, ignoring the nails and multilated boob for now, do you feel grateful? Well, do YOU feel lucky, Punk?
Grrr. How can another woman just ride roughshod over how I view MY femininity? Yes. I *AM* alive, but so is everyone else but they've still got all their bits.
CM!U total lovely twit!! u made me laugh when i could quite happily strangled someone, ahh thank u CM XX
Roses are red,
Violets are blue,
Chemo bungs you up
So you can't have a poo.
Tulips are yellow,
Carnations are pink,
I hate this cancer,
What do you think?
Daisies are pretty,
My favourite flowers,
I'm on the forums
For hours and hours!
Bluebells are pretty
And pansies are too,
My hayfever's horrid,
Atchoo atchoo atchoo!
Sorry, feeling a bit silly this evening...
mobil, brilliantly put! made me cry but not sad tears! bless ya!!! love alex xxx
How wonderful to pen a poem like that.....
Such talent, Mobil.
Your sentiments are so accurate.
There are so many wonderful women on this forum who can be empathetic and understand your plight.
Not sure where you are on your journey but hope you've gained some support here too.
I wish you the very best, Welsh girl x
Sick To My Back Teeth of Poem.......
STOMACH'S ALWAYS CHURNING
HEAD'S IN A SPIN
PEOPLE SPOUTING CLICHE'S LIKE..
"TAKE IT ON THE CHIN"
A CANCER DIAGNOSIS
THAT'S ENOUGH TO BE TOLD
MY MUTILATED BREAST
NOW THAT'S A SIGHT TO BEHOLD!
"AT LEAST YOU DON'T NEED CHEMO"
IS WHAT THEY SAY
"YOU KNOW YOU SHOULD BE THANKFUL
FOR EVERY DAY"
I'M AWAITING RECONSTRUCTION
WHICH IS OH SO SCARY
"DON'T PUT YOURSELF THROUGH IT"
SAYS MY SISTER MARY!
WHY DON'T THEY UNDERSTAND
WHAT WE HAVE TO GO THROUGH,
THEY JUST DON'T REALISE
THEY HAVEN'T GOT A CLUE!
THANK GOODNESS FOR THIS WEBSITE
WHERE OTHERS 'UNDERSTAND'
WHERE YOU CAN CHAT TO PEOPLE
WHO'LL GIVE A HELPING HAND
YOU SEE THE PEOPLE HERE
ARE SIMILAR TO YOU
THEIR EXPERIENCES AND ADVICE
ARE WHAT WILL HELP YOU THROUGH
THESE TIMES ARE VERY DIFFICULT
AND YOU SOMETIMES NEED A LAUGH
IT'S GREAT TO TALK TO OTHERS
WHO ARE WALKING THE SAME PATH.
WISHING EVERYONE WELL.
thanks ladies, stuck now till tues cos of bank hol. will certainly go in branch tues and get it it sorted. and yes i will use the cancer card if i have to. have found out since this morn im not the only one at this atm so pretty hopeful! will cry ,wail and plead cos its so not my fault and my kiddies need feeding!total pants start to what i thought would be a lovely week. love alex xxx
This has happened to me and hubby twice, one of the times was being used in Canada and they spent nearly five thousand pounds!! Its so unfuriating! x
HI Mummysboob - This happened to me a year ago, hit my card until everything was gone, took £2500 in all, I screamed and wailed, it was everything I had and I didn't know if I'd get it back.
They are b****ds they really are!
See if the bank will put in an interest free overdraft until they pay it back in, so you don't do without, Natwest did this for me when I said I can't wait because I've literally nothing. Play the cancer card if needs be - may as well use it whilst you can, it's not like it's a lie after all! It took them nearly a month to refund all of mine, had to sign a declaration and all sorts, they told me 2 weeks.
What a sh*t thing to happen when you're going through all of this too, much love xxxx
Oh no Alex, mine was done about 2 years ago and they took about £160 before I realised and got the account stopped. I got all the money back but it is a complete nightmare. I bank with Lloyds and had the money back within 4 days I think. I was very impressed with them, hopefully yours will be the same.
aaarrrgh! so freaking angry just found out my card has been cloned and my account has been relieved of £250 all that they could take!! so mad and upset. thats my food shopping for nxt month!! total b**"%%*s. might not get money back until 14 days! tell my kids that i said. bloody cleaned me out apart from £5. how kind!! great school hol me and my boys are going to have.. not alex xxx
Feeling tired and moody!!! Nails that are growing back but are so weak they bend back on themselves!! No toenails. And just when I thought my eyelashes are growing back nicely they too become weak again!!!!
Feeling like a 80 year old woman when coming home from a walk! All joints ache including toes and fingers..
Considering im only 44 yrs on monday!!!
I always ring the DN to confirm that they will come round to give me my 3 GCSF injections after my chemo on Thursday and the fist injection due Saturday. Its just as well I did as although the Onc nurse had faxed them through, the DN fax machine was broken and so they didn't know!
how anything unexpected has a massive effect. Have to have more bloods taken today before Fec 2, as something low. Fingers crossed that whatever it is has zoomed up overnightand and they'll do the fec. Really far more bothered about it than I should be.
Absolutely everything about this effin disease, the treatment and the way I feel! ARGHHHHH!
Oncy posting letter to me about MRI result - with a typo in it.
Luckily, I rang BCN as it didn't make sense, and she spoke to him, then confirmed that "does not" should read "does".
Chemo ward not sending paperwork to GP for treatment when I've had day off work to wait for DN to flush my line that I DON'T NEED OR WANT ANY MORE. Gggggrrrrrrrr... now got to wait in tomorrow for DN again before I can go to work. Had same problem every time with filigrastim injections.
someone eating my bananas, even the half banana in the fridge so I can't have banana pancake for breakfast. Must buy more bananas, must buy more bananas. On a positive note, I've bought some Wheat beer, (bless Ocado, bless Ocado) and after the last fiasco when all my wheat beer was stolen, I have bought 0% alcohol beer. No one in this house will want that I hope.
I have set up a CaringBridge website - easy to do... I write a daily blog thing, and people leave messages. It's very helpful (cuts down phone calls after appointmetns etc) and the comments have all been supportive, because those that arent' going to be don't bother to look, and i don't have to think about THEM..... and when you feel low, it's helpful to look back and re-read people thanking you for being inspirational... even if you don't feel it that day.... my top tip for today! Love to you all Jane
Thanks Silvershar. I just think they have a very limited vocabulary! 🙂 Hope you don't feel as bad on your next lot of chemo. Adi x
Hipchick and Adi - just cant believe what u have written, i can imagine how u are feeling, some people just dont put their brain into gear, u are def better off without them 🙂 I m sick at the mo of people congratulating me cos im half way through chemo, oh god, i know they mean well, but half way thr means i have to do the whole thing all over again and my "postive" attitude, "being strong" etc is fading fast, i have done all of that plus more since my dx in Dec last year then my lumpectomy in Jan and then 3 rounds of FEC,im worn out!!!!!!xxxxx love to the both of u and to everyone in this god dam situation!
I don't beieve we're being hyper-sensitive to comments. Some people are just plain ignorant/insensitive/self-centred. But I try and believe that we are all doing the best wth what we've been given but it's hard at times.
I contacted an ex work friend via Facebook. Her husband had breast cancer about 3 years ago. Her only remark to me about it when I asked about him was 'trust him to get a bloody woman's disease'. I thought it might be nice to have lunch as she's not working any more so contact via facebook, quick message to let he know my situation. Reply was, 'you have my number' Well I do but I won't be calling it.
Oh my goodness I just can't believe it!!!! Friends mum has just popped round with a thank you note for the present I sent to her two year old. Lovely thank you card. But any mention how am I? Not a word. Quite happy to tell me about how lovely the birthday was and what they did. What about me? The so called friend knew in Feb about my situation and has yet to text/phone or anything. I will not get upset about it but put it down to her ignorance, as she has always been an 'about me' person! I know it is difficult for people when they hear the C word, but come on!!! One selfish person - urgh.... Some friends you just want to cross off and looks like this one has been. Selfish madam hope she enjoys rolling in her own pig ....! Adi