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Just diagnosed and wanting to talk to people who understand

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Community Champion

Re: Just diagnosed and wanting to talk to people who understand

Hi Dee,did you want to say something or just look at your "title"!!!
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Re: Just diagnosed and wanting to talk to people who understand

Great idea Tina!!! Will be adding that on everything now 😉
Im sure we all feel the same, any help we can be to anyone no matter what their story is, one of us would have been there! Xx
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Re: Just diagnosed and wanting to talk to people who understand

 
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Re: Just diagnosed and wanting to talk to people who understand

Going to your head now Tina!!!!😜
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Re: Just diagnosed and wanting to talk to people who understand

😂👍🏼 I've only just noticed our stars, knew they were coming! WOOO! Check us out fellow Community Champions!! 🌟🌟 So far.... Amanda, Jobey, Jenjen, Claire, Jill and Peggy? That means there's another 14 on here to point you/us/me!  all in the right direction, listen, love, hug, laugh, cry, rant, scream, shout, moan but importantly care and support 👍🏼😚

 

No, on a serious note, we are All here for each other in these threads and someone on here will be able to help, direct you or advise as we are either all going through the same crap or supporting loved ones through it. 

It feels like a lifetime past since I joined the forum though in reality it's only been 6 months, following diagnosis in August. Sooooo much has happened since then and the waiting game  is never ending!?! 

 

Hugs and love to all, keep posting xxx Tina....... ️ Community Champion! 😂 (That is ok isn't it? This does mean I can use the title after my name now?? Admin? 👍🏼😜)

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Re: Just diagnosed and wanting to talk to people who understand

I've been very neglectful of the site since promising to be here for newbies. In my defence I have a broken laptop and struggle on my phone but will make more effort. Meanwhile happy for anyone to pm me if they prefer to stay private initially. Sending love. Lorna x x
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Re: Just diagnosed and wanting to talk to people who understand

Yes ,I've always wanted a "title".....
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Re: Just diagnosed and wanting to talk to people who understand

Congratulations Jill and Co for becoming community champions. Like it very posh 🙂 xx
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Re: Just diagnosed and wanting to talk to people who understand

Aha, keep up the good work Jill (Amanda, and everyone else). It's good when people take the time out to reply to you Man Happy

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Re: Just diagnosed and wanting to talk to people who understand

Barry ,they have asked some people to be proactive in welcoming new people to the site,make sure they don't get missed and pointing them in the right direction where to post etc.There are 21 of us.Its something we all do informally already .
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Re: Just diagnosed and wanting to talk to people who understand

You get a star on your profile Barry !!!!!Yes Amanda,I know exactly what you mean,takes me back to how awful I felt too.I cried with relief when people responded to my post ,felt so much better that other people understood as I felt so "abnormal".
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Re: Just diagnosed and wanting to talk to people who understand

What's a Community Champion?

 

Do you get a certificate?

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Re: Just diagnosed and wanting to talk to people who understand

So there are!

 

When you read those first posts though...just takes you back to when it first happened to you, you just want to give them some comfort!

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Looks like a lot of Community Champions on this thread !!!!We have all been busy bees looking out for newbies !!!!
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Re: Just diagnosed and wanting to talk to people who understand

Yes ,the whole thing is rather bloody inconvenient isn't it !!!!!
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Re: Just diagnosed and wanting to talk to people who understand

Ha Jill I have many "why can't you just $!€€ off' days!! 😂😂

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Re: Just diagnosed and wanting to talk to people who understand

I will send Nikki one of my newly invented "husband chill bags" Barry,should sort out the heat issues.....I don't think any of us can go through this and not have days when it really hits you and you feel why me and why can't you just **** off BC.
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Re: Just diagnosed and wanting to talk to people who understand

Oh there are still a lot of down moments you're right there.
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Re: Just diagnosed and wanting to talk to people who understand

How right you are mate. On a good week, though it catches you unawares!?.... You have times when you 'forget' but then something is said or reminds you what's going on and back down with a bump you come!?

making the most of feeling good.... This time next week will be n my downer dip again!

But for now.... 👍🏼😂😜 XXX 

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Re: Just diagnosed and wanting to talk to people who understand

Glad it amused you Tina, it's nice to know we can laugh again. During the early days you don't think you will smile for a long time.
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Re: Just diagnosed and wanting to talk to people who understand

😂😂😂 Oh Bazza that did make me laugh out loud! 🔥🔥

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Re: Just diagnosed and wanting to talk to people who understand

Nope not just the meds Jill, even before this she'd ask why I'm so hot 😉
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Re: Just diagnosed and wanting to talk to people who understand

No disrespect Barry,but I think it's the meds ....
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Re: Just diagnosed and wanting to talk to people who understand

Maybe we should invent a kind of chilled sleeping bag to put your other half in and stop them making you bloody boiling ???
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Re: Just diagnosed and wanting to talk to people who understand

Oh Barry you men! My hubby says exactly the same 😉 

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Re: Just diagnosed and wanting to talk to people who understand

Good to see you back Barry. Or should I say hot stuff!!
So glad you and Nikki are on the home run now. Rads will fly by then you can do all the things you have put on hold. Two FEC done for me now so a third of the way!
I hope you get your appointment soon.
Claire xxx
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Re: Just diagnosed and wanting to talk to people who understand

Hi Bazza...... Or should we start calling you Hot Stuff!?! 😂 Good to hear from you. Flip just as well,she noticed the wrong plan?! You've waited a while now for your apt? 

Wishing Nikki luck for tomorrow 😚 Xxx Tina 

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Re: Just diagnosed and wanting to talk to people who understand

Evening ladies. How is everyone? Just read about your tamoxifen troubles Jill. Have you tried different brands? I might need to invest in a chillow for Nikki as she always asks me why I'm so warm in bed. What can I say I'm hot stuff 😉

Amanda I hope all goes well with the picc line. It's a lot easier with bloods and treatment but by all accounts can be uncomfortable at times. Oh and half way there!

Nikki's had to sign consent forms twice for rads as the first consultant got her treatment plan wrong! Was going to be 3 weeks of rads to breast and neck. But was meant to and will 4.5 weeks to the breast. We have oncology appointment tomorrow morning then a trial run for rads tomorrow afternoon.

Sending hugs and love to you all xx

Oh p.s. No appointment for me yet!!
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Re: Just diagnosed and wanting to talk to people who understand

Well done Amanda. 50% done. The next lot will fly by. xx

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Re: Just diagnosed and wanting to talk to people who understand

Well done Amanda,over the hump now,down hill from now on .
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Re: Just diagnosed and wanting to talk to people who understand

I had had the picc line fitted this morning...ouch, was a bit of a struggle and took about half an hour but it was much easier when having chemo this afternoon. Maintaining it (weekly flushes and dressing changes) is going to be a pain if my local surgery can't do it as the hospital is a forty minute drive away. Still, I'm half way through now!

 

Love and hugs to everyone,

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Each week is one week less Jen!Glad you are escaping with minimal side effects .Claire ,that's hopeful re side effects improving over time.The surgeon said give it a year for things to settle.
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Re: Just diagnosed and wanting to talk to people who understand

Hello all 🙂

Hope everyone is OK x
Jill my hubby is always toasty hot in bed which doesnt help me he also likes his legs in arms out and im the opposite! we have 2 single duvets rather than one double its helped lots as I can kick mine off if I want all together and I have a lighter weight one. I just buy 2 duvet covers that match and make the bed by folding them in half.

Ruth go get your arm looked at x

Im on paclitaxel week 5 and herceptin 2 and im still the jammy one who has very few SEs but I cant wait for 7 weeks time when im done with chemo had a flap on tuesday as nurse couldnt get cannula in but next one did first time then first nurse couldnt do someone elses cannula so I dont think it was me! Still hoping to not need a line or port but I guess if I do now its only a few weeks.

Tinax clairex Amanda x hope your all doing OK it'll soon be over girls hang in there

Hubby is home this weekend ! So im going to make the most of it 🙂

Off too see oncologist ths morning for review see whats what

Love to all
Jen x
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Re: Just diagnosed and wanting to talk to people who understand

I hope all goes well for you tomorrow Amanda. I have read your comments on the Dec thread too. I have a port for my chemo and it's a godsend. No messing with veins. A friend of mine had a pic line I after FEC 2 and she said it made everything much easier. It was ok to look after. 

God this is never ending isn't it. I am just focusing on getting to the end of chemo then I will think about radiotherapy and tamoxifen. Sorry you are finding  it tough going Jill. My mum had tamoxifen for 5 years and wasn't too bad with it, but vain old me doesn't want to pile on weight on top of everything else! It will be back to slimming world if I Do!, can't imagine the hot flushes either, I haven't had any yet! 

 My mum said it got easier the longer she was on it.

can't sleep. I think it's steroid induced! 

I hope everyone is ok!

Lots of love,

claire xxxx

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Re: Just diagnosed and wanting to talk to people who understand

Hi Ruth, 

 

I'm no a medical professional but I don't think that I had cellulitis, vein phlebitis sounds much more likely! Whatever it was has gone now, but not before this narrow string like bruise joined it to the point I had the cannula of FEC 2 went in....so maybe I had a leak I didn't feel and that set it off? Still, I guess the PICC line will be useful against it happening again, just hope I don't have any trouble with it! Are you up for radiotherapy next? 

 

Have you contacted anyone regarding the problems you're having on Tamoxifen Jill, you can't go on like that! In the meantime, don't underestimate the usefulness of a desk fan on you bedside table!

 

Going to turn in now, lost a few hours sleep last night and will have to set off for the hospital by 8.30 tomorrow and I want breakfast before I go! Picc line 'fitting' due at 9.20 and chemo at 2pm, unless a chair becomes available before!

 

Love and hugs to everyone, hope you are all forging on without too many hiccups, check in soon!

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Yes Jill, final dose was 29th Jan. Still tired and the hot flushes are tiresome but I've got away with it quite lightly I think in terms of SEs. xx

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Re: Just diagnosed and wanting to talk to people who understand

You done with chemo now Ruth?
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Re: Just diagnosed and wanting to talk to people who understand

Yes,if I can't get on top of it in another way I will consider it Jo,at the moment it is affecting my quality of life and work in particular .
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Re: Just diagnosed and wanting to talk to people who understand

Jill have you thought about trying Venlafaxine to help with SE? I only have to miss a day of mine and I feel sickly, lightheaded and the flushes creep up on me, they taste disgusting but they seem, to do the trick! X

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Re: Just diagnosed and wanting to talk to people who understand

Chillow -" chilled pillow"....need chilled husband too ,I'm ok til he comes to bed then the heat from him sets me off!!!!Im a bit of a zombie at work as a consequence .Tina,I think most people have mammogram a year after first surgery ,"happy anniversary "... yes ,I sat in waiting room mat Breast Care Unit thinking last time I was here I left through the side door....then I threw up!!!
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Re: Just diagnosed and wanting to talk to people who understand

Hi everyone.

 

Amanda, thanks for rescuing this thread. I've been somewhat neglectful of it of late so good to see it back up near the top of the page. Sorry to read on the December chemo thread that you have had another delay to your latest FEC - hope it will go ahead tomorrow as planned. Do you mind if I ask you how your cellulitis manifested itself if that's not too personal? I ask because I think I've got a case of vein phelbitis in my chemo arm - one small vein that branches off a main one has a small lump and is a bit red and swollen. But of course reading about cellulitis I wonder if it might be that - hypochondria no doubt!

 

I'm not feeling too bad day 13 of T3. It's definitely tired me out a lot more than the other rounds but it is doable. I have not found the T anywhere near as unmanagable as I'd feared. Feel free to ask me any questions about it now or when the time comes.

 

Jill, sorry to hear of your evoloving Tamoxifen issues, hope they will become more managable over time. I expect I'll be starting it in late March so am watching everyones' experiences with interest. Hope all is well with you up in your part of the world. You've not been too badly affected by the recent floods have you?

 

Right, time for dinner. Hope everyone has as pleasant an evening as possible.

 

Ruth xx

 

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Re: Just diagnosed and wanting to talk to people who understand

Oh Jill sounds awful! Think ive got that to look forward to also. 😖 Excuse my ignorance but what's a 'chillow'? I can hazard a guess...... 😜

 

As as for being in the Breast Care Unit I know where you're coming from!! I was there last Monday to see my reconstruction consultant..... Oh my! 😒 the awful feelings in my stomach!? And couldn't stop thinking "God the last time I was here......' Still, at least this time  I' didn't walk out crying uncontrollably!!?!  I am dreading having to go back for 'the check up'. I really don't know what happens after radiotherapy finished? Do I wait for the annual mammogram in August? Or will they do tests straight away? Oh god it's going to be torture waiting for those results!!! 

 

This is whole thing is so unfair and cruel...,., 

hopecyou sleep better tonight Jill xxxx 

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Re: Just diagnosed and wanting to talk to people who understand

Been on it for 7 months Amanda,side effects seem to be "evolving".I have looked at the chillow and have ordered a "lady care magnet " that helps some women.I am alternating between boiling hot and freezing cold all night !!!!My check up was fine ,I have a really nice surgeon ,but it was not pleasant being in the Breast Care Unit again brought back a lot of very unpleasant memories .
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Re: Just diagnosed and wanting to talk to people who understand

Oh dear Jill, that sounds unpleasant, I had heard it can be like the menopause on speed! Have you thought about getting a 'chillow' I don't know how good they are, I noticed they had small ones for sale in my oncology department. How long have you been on the tamoxifen? Dis your check up go ok?

 

I had my assessment and it was 40 minutes late then I had to go to another department to have the blood taken as they were too busy to do it in the chemo unit! 

 

Tina, I hope FEC 3 is kinder to me than it has been to you, still, you're half way through now! Like you, I am a bit worried about the T, the thing I've heard the most is there is less nausea but more 'bone aches'. I don't thinks it's so hard on the veins either....so swings and roundabouts I suppose!

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Second page,oh no!!!Well done Amanda for resurrecting the thread.You must be really fed up having chemo delayed ,it's a long haul isn't it .Good luck with your next one Tina.I am just wrestling with the side effects of Tamoxifen,which I can best describe as the menopause "with bells on", nothing compared to chemo I'm sure,but does impact on your ability to get on with your life and means I'm not getting a lot of sleep and struggling with work.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Amanda was thinking about you earlier! What a bummer having it delayed!! FEC 3 knocked me for 6 and I'm dreading the next round on the 19th..... 

 

I heard from Delly week before last but nothing since!? Bazza had results yet? How's Nikki now chemo done? 👍🏼 xxxx Tina 

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Re: Just diagnosed and wanting to talk to people who understand

This thread was on the second page...I thought 'I must do something!!@ 😉

 

I have had my FEC 3 delayed 6 days, because of an 'infection' which was a storm in a teacup but they are only looking out for me by being ultra cautious! So that should be 4pm on Wednesday, as long as today's bloods are ok.

 

How is everyone...still nothing from Delly, hope she is ok. I hope you have that appointment by now Barry. Has Nikki started rads yet?

 

Love and hugs to everyone.

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Dear all,

 

I have been seeing your posts about diagnosis of breat cancer. So thought of sharing a link that may be useful for guiding people who can are taking chemotherapy. It consists of specific side effects to durgs that are being used commonly for breast cancer and other types of cancer. Please check..I hope it helps

 

http://www.oncologybiomarkers.com/2016/01/chemotherapy-for-most-common-cancers.html

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Re: Just diagnosed and wanting to talk to people who understand

Thanks Nikki, you're an inspiration and shows us all we'll get there! Xxxx Tina

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Re: Just diagnosed and wanting to talk to people who understand

Thanks everyone, it's such an amazing feeling reaching the end of chemo.
I crossed off every milestones along the way (a third of the way through, half way, two thirds and the last one) 🙂 The weeks passed a lot quicker than I thought they would. After my first and second sessions, I cried at the thought of the upcoming sessions and at times I didn't want to carry on, but it is doable and you will all cross that finish line before you know it!
Wishing everyone luck with their upcoming treatments and hope all your SE's are minimal.

Big hugs and lots of love to all
Nikki xxx