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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

Good way to celebrate a crap anniversary Jo!!!
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Re: Just diagnosed and wanting to talk to people who understand

Wow thats some acheivement Jill!! 😄😄
A little message to all the newly diagnosed ... a year ago today i found a lump out of the blue which led to my diagnosis and my thinking my life was over but fast forward 12 months and im sunning myself in the Canaries today and living life to the full!! Never give up girls, you can do this 😙
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Re: Just diagnosed and wanting to talk to people who understand

Yes, I def think it's worth reminding yourself of how far you have come ,you ladies who have been through chemo have had a long haul,we all have wobbles ,think it's very normal part of dealing with this,damn annoying though !!!!
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Re: Just diagnosed and wanting to talk to people who understand

5,000 posts - wow. You have created a monster Jill. Smiley Very Happy

 

I must admit I went back to the start of this thread and the time I started posting the other day just to see how things had changed and to reassure myself that I have come a long way since then (I was having a bit of a wobble).

 

Ruth xx

 

 

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

Two extremes there on the parenting front,neither easy!!!!You made the 5,000th post so you win a prize Ange!!!!Bucket of vodka soaked, chocolate covered sprouts...
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Re: Just diagnosed and wanting to talk to people who understand

Not yet but he has too as I will not be able to work from home with him around. Home start are supposed to be visiting me next week to help. I also have a very lazy 16 year old who won't do anything 😞
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Re: Just diagnosed and wanting to talk to people who understand

Have you managed to get him into more nursery sessions Ange?Life will get a lot easier when he starts school ,my son was exhausting and didn't sleep all night til he was 4,that's why I only had one!!
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Re: Just diagnosed and wanting to talk to people who understand

Wow 5000 posts Jill. Yep have 2 jobs. The one at home is harder as little man is doing more and becoming more mad xx
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Re: Just diagnosed and wanting to talk to people who understand

4 posts til 5,000 replies to my original post when first diagnosed !!!!!Thats a lot of support ,cheers everyone !!!!
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Re: Just diagnosed and wanting to talk to people who understand

Glad your work is being accommodating Ange x
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Re: Just diagnosed and wanting to talk to people who understand

See how you go the Ange,keep your options open,remember you have a full-time job at home too.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Barry..Glad Nik is getting close to the end..phew, a marathon in itself! Good luck with the running. When I hear the fears of newly diagnosed it takes me right back to how I felt in the beginning...I feel for you all, it's bloody terrifying! No way round it. You have to go through it ( sound like a book at primary school) it's true though so you will be scared, tired, depressed and another thousand things to boot! Then you will start feeling better and more positive, simply because it's exhausting to worry 24/7! And you realise you can handle anything that will rid you of this crap! Oh and antidepressants help big time too! I ordered some the instant I was diagnosed. Didn't take them for months but took them eventually and thank God I did. Sending love Lorna x x
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Re: Just diagnosed and wanting to talk to people who understand

Yep and she said she will speak to me after rads to see if all is ok or I want to delay 🙂 x
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Re: Just diagnosed and wanting to talk to people who understand

Sounds like a plan!!!
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Re: Just diagnosed and wanting to talk to people who understand

Oh and yes take one step at a time think that's the best advice. I was always looking ahead.
I am working from home through my radiotherapy spoke to occupational health today and they have said its ok as long as I rest when needed. Then when rads finish I will gradually return to normal work xxxx on step at a time xxx
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Re: Just diagnosed and wanting to talk to people who understand

3 weeks and 8 booster sessions by the sound of it .Just the travelling to hospital every day can be knackering.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Jomo, we all get bad days but once you start the treatment is goes so quickly. I have had 2 ops, chemo starting radio on Monday :). The ladies on this thread are the best support ever. They have helped me through a lot xxx big hugs xxx
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Re: Just diagnosed and wanting to talk to people who understand

Nikki was told she'll have 4 and half weeks, not shure if it's high or low. Just that it was a booster! Orginially told it was for 3 weeks, so a little disappointed it was extended.

 

Definitely, I don't want her breaking down with exhaustion!

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

I had 3 weeks of higher dose ,some have longer(5 weeks ) at lower dose.By day 10 I was knackered but everyone's different.I understand her not wanting to feel like she is going backwards ,she shouldn't be afraid to say if she is struggling though.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Jill,

 

They have said to her they can review it at any time and she can let them know if it gets too much. I think now she's back she doesn't want to go backwards if you know what I'm getting at? But we'll see, it's down to her as there is the possibility to work some of her hours at home.

 

How many weeks did you have rads for Jill?

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

Jomo, you wouldn't believe how much I was on this forum. I read so many posts (my wife Nikki got joined later and for better or worse probably read more posts over time).

 

There's so much to take in. But everything you are thinking/feeling is what we did. One question you asked was about full node clearance, they will remove all of the remaining lymph nodes from the side they found one to be positive in. It can leave you out of action for a few weeks, as they have to work around the nerves and muscles under your arms. There's more to it than that, but best to talk to the doctors to see what the next course of action is first.

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

Hi Barry,think I would have struggled to work during rads ,particularly after the first week when I got really tired,has Nikki got any flexibility with work if she needs to have rest days?
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Re: Just diagnosed and wanting to talk to people who understand

J we all have had days when we feel like you do right now,it comes in waves ,one minute you feel I can this ,its not that bad, the next minute pure panic.It takes some time to get your head around what is happening,but eventually you find a way to cope with it and find a way to still have some normality amongst it all .What I would say is take things one step at a time (one treatment at a time) don't go jumping too far ahead or you will feel overwhelmed .Jill.
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Re: Just diagnosed and wanting to talk to people who understand

Hi ladies, noticed a few new members in my forum alerts and thought I'd pop in and wlcome you (not that you'd choose to be here) and see how everyone else is too.

 

Update on us, Nikki is now back at work. Commuting then having to go back fo rads in the afternoon, before finishing her hours at home. A long tiring day for her at the moment, the walking ups the stairs is the toughest part. On the positive side, one week of the 4.5 weeks of rads she has to go through is almost over. A bit sore and red from treatment already Man Sad 

 

I've finally got a referral date, but it's not until May13th! Let's hope it's not unlucky for me. Training for the 10k in Brighton is going pretty well, I'm running about 25k per week at the moment. I'm running it around 52 mins, but my target is under 50 minutes on race day in April.

 

Enough about us. How is everyone? With regards to the newbies, you are in great hands, They got us, me in paricular through the really tough early diagnosis stage. So many sad and horrible thoughts enter your heads, you can't turn a switch on and suddenly forget about it all or not worry and cry. It just happens over time. Once treatment begins you're too busy dealing that and slowly you get back to "normal" life. It's just how it is, try and give yourself something to look forward to once it is all done, whether it be concerts, shows, holidays etc.

 

Sending love and thoughts to everyone as always.

 

Barry xxx

 

 

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

I can't tear myself off this site, I am reading things that are like a foreign language, I was diognosed with IDC: just getting the lingo, but have been told some cancer in one of lymph nodes, found by core biopsy, goi g to see oncologists on Monday , I have to have scans? Will I have to wait for these? What is lymph node clearance? I know I am having chemo first, and my breast hurts well aches all the Time, I swear I feel it in ther e what is going on? I went to work today broke down, decided I had to go home, I was so ready to fight, but I feel beaten already, I don't know how to get through the next hour, I never thought I would be thinking why me, but know I'm looking at every one, and thinking how this time last week, I was like them, now I am not, I am scared , sick, and feel surd Its eating me inside , and its to late, is this so bad to feel this way?  I just don't know what as!l these things are , and if the home apply to me, you all seem upbeat, but me I'm crap very every one is saying I'm coping well I am just as good actor, didn't realise how good

 

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

Jomo, just popping in to give you a bit of advice on one of your worries that was a big one of mine too - worrying about  your teeth. I have quite a few crowned teeth too and as due to an accident I had several years ago have spent quite a bit of money getting them fixed. I was so concerned that they would be damaged when I was having the anaesthetic or by the chemo itself but they have survived just fine. You will be mindful of your oral hygiene I'm sure as that helps to prevent things like thrush and mouth ulcers so that will help to protect your dental health too.

 

As Amanda says, they have to tell you about all of the possible side effects but you would be most unlucky to experience them all. I'm almost four weeks post-my final chemo now and apart from a few aches and pains and a little tiredness am feeling better every day. It's a rubbish situation to find yourself in but you WILL get through it.

 

Much strength to you.

 

Ruth xx

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

Thanks lovely lady xxxxx that's so nice and hell yes I need to treat myself more I look after everyone else! 💗
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Re: Just diagnosed and wanting to talk to people who understand

Jimi it's a lot of pressure being called brave...You're not, none of us are! No bloody choice! You're still in shock by the sounds of it and that's allowed...go with it and come out of it ready to do whatever it takes to get rid of the bugger! I thought I wouldn't get tbrogh it but I did. A year in almost and the light at the end of that dark tunnel is sooo bright! Always love Lorna x
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Re: Just diagnosed and wanting to talk to people who understand

Glad you're feeling calmer Emma..it is a nightmare in the beginning, Rocks your world but you have to find a balance, no choice! Be kind to yourself. Lots of treats and pampering and rest when you can. Gallons of water ( well litres) hope you sleep well. You're on the road to recovery as soon as you're diagnosed. People walking round out there oblivious to having it so hold that thought. Always love Lorna x
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Re: Just diagnosed and wanting to talk to people who understand

Good luck with your scan etc Emma,let us know how you get on.
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Re: Just diagnosed and wanting to talk to people who understand

I feel calmer tonite... Had a bath and dozed off settling my girl. No work for next couple of days but more biopsies n scan... So weary with it all. Want to get started with the chemo and get well again xxx
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Re: Just diagnosed and wanting to talk to people who understand

Everything is always much worse at night Jomo, you mind just goes into bloody overdrive! You want run away...yes of course, it's a basic and ancient in stink to a threat of danger! If you work in customer services in a busy store, you are clearly a strong person, I wouldn't last ten minutes doing that!

 

Don't panic about chemo, it is in the 'unpleasant but doable' category. It varies from person to person of course but your chemo nurses and oncologist will do what they can to alleviate the side effects you may have. You are already aware of some of them and there are a lot that are possible...not necessarily probable though! They are obliged to warn you of any side effects you might get and sometimes it seems overwhelming but you would be extremely unlucky to suffer from lots of them. I am half way through FEC-T chemo now and although for some days here and there, I do feel tired and fuzzy I have had very little in the way of side effects so far. You may well need sick leave while having treatment to help avoid infections, if you do get an infection, you will be treated for it. Your oncologist and team will go through what you need to do to support and protect your body during chemo and you should go in armed with a list of questions and also tell them of your fears, they are used to dealing with it and reassuring patients.

 

You CAN do this and will get through it all, it does dominate your life for quite a while but eventually you will get used to this 'new normal' and then get your life back!

 

Amanda x

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

I had plenty of days like that love , not doing this , don't want to know, get me the hell out of here!!!!! It's all part of the process and your not going mad honestly, shock gives way to fear then sheer bloody anger that this would dare happen to you, I could have screamed the flaming house down at times and spent days hiding under the duvet but as Jill rightly says, it's still there when you get up! Some how you just find a way to cope, it creeps up on you and suddenly you realise your heart isn't in your mouth all day and you don't feel like you are going to choke with anxiety, it takes time but it will happen Xx Jo 

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

Not top of your list of things to do in 2016,but no matter how much you hide under duvet it's still there,you will deal with it ,give yourself some time to get your head around it.Get support and advice on this site it's a sanity saver .Jill.
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Re: Just diagnosed and wanting to talk to people who understand

Customer service front of busy store, been afviced I am in contact with to many people,
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Re: Just diagnosed and wanting to talk to people who understand

Today I had convinced myself it was nothing!! Yeh bit of chemo op radio then that's it all done, tonight I am i n bed thinking I just don't want to do this, everyone's like oh you are do brave, I was but now I'm not, what if I get infection during chemo? What if my heart packs up? What about my teeth? They are crowned they will fall out! Wtf, I can't do it I can't. Said I would be in work tomorrow no problem, noe I don't want to go, I want to just run awsy

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

Hi Jomo, and welcome to our special club, that no one ever wanted to join! You feel like the rug has been pulled out from order you feet at the same time as you're being pushed towards a cliff edge! You will really be reeling from the shock for a while and on an emotional roller coaster, unpleasant as those these feelings are, it's really normal. Give your self time to come to terms with your diagnosis, it's a hell of a thing to take in but it does get easier as you sort of accept what's going on and you generally will feel less all over the place once you can concentrate on the treatment and get things underway. Lots of ups and down but you are stronger than you think and you will manage this!

 

Amanda x

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

Like Jill i find it hard to believe this has happened , you sail on thinking this happens to other people then suddenly you are that person and it knocks you off your feet! Its a year on Friday that my roller coaster began and i didnt think id see the next week let alone be here a year on but i am and alive and kicking! You do get your head around it and cope in a way you would never imagine, take things slowly and try not to rush ahead of yourselves, the team looking after you know their stuff and in my experience they are calm and reasuring and it really does rub off! XX
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Re: Just diagnosed and wanting to talk to people who understand

Me too I want it gone... 😡👊🏽xxxxxx it's exhausting all the emotion.
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Re: Just diagnosed and wanting to talk to people who understand

It's a very surreal experience ladies,I still can't quite believe it happened to me.It really does become less overwhelming in time and you manage to fit in "normal life " amongst all the cancer c**p.
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Re: Just diagnosed and wanting to talk to people who understand

I know one min I feel like nothings wrong, you know like its just an illness that needs antibiotics, then its over, then it scares me, I just want to start treatment, like now! 

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

Love I feel same... I'm petrified it's spread. In my left breast n nodes. Stay strong hon and remember ur not alone!!!! I'm 40 n keep thinking this is sick I'm too young... Why me??? Then I hear from ladies much younger and I feel bad for feeling bad!!!! What job do u do? I'm a teacher and thought I'd work trough chemo but I think that's unrealistic with infection...
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Re: Just diagnosed and wanting to talk to people who understand

Oh it will love... I'm so up n down was same I knew it... I was diagnosed Monday. I wept last night on private for an hour. I have a 4 year old not sure what and when to say and how much... I keep thinking I'm gonna wake up from this nightmare then in the next breath I feel so positive! 🙈
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Re: Just diagnosed and wanting to talk to people who understand

Diagnosed today but knew it was coming, I am same as you chemo. Then op then radio I am up and down, my body feels heavy with emotion, 

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

So I have had the news today, its all a bit mad, going to see doctor Monday to sort out chemo, operation after then radio!! Its IDC, apparently common, some trace in nodes, well in one, really scared about that, having MRI and ct scan, what if its spread,? 

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

Thanks Amanda! This group is ace and it helped me decide that I think I'm gonna get signed off as I'm a primary teacher. Can't risk infection with the chemo and I gave a little 4 year year old who, as a single parent I have to get better for!!!!! Told my boss today I was gonna follow the advice of the oncologist who I haven't met with yet. This forum helped me realise how hard the chemo is going to be. I thought I'd skip through it and still work 🙈Ladies you have been wonderful. We can fight this!!!!!!
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Re: Just diagnosed and wanting to talk to people who understand

Big hugs Lisa x Radiotherapy will blast the rest x its rubbish news I know but chemo will have done its job and they might have been "dead" traces of cancer cells 

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

 

Hi Lisa,

 

Well that was a bit of a nasty shock, I can understand how you feel, almost like when you were first diagnosed but you came to terms with it and have been getting on with treatment and life in general and you will be doing the same again soon! And as you said, they are out and you will have a good blast of radiotherapy in case there is anything left, which there probably isn't!

 

The trouble with scans and even node biopsies, is that they can sometimes miss the microscopic stuff. I suspect the surgeon wasn't worried either, and do remember, it was microscopic!

 

Welcome even though we wish you didn't have to be here, if you know what I mean!) to Emmajane and Skyblue, you can already see there is loads of help and support here!

 

Amanda x

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

Hi Lisa,not surprised you are feeling fed up,good news ,followed by not so good news particularly when you are not really prepared for it .I guess what you have to focus on is that the chemo was obviously pretty damn effective when it came to your tumour and has shrunk lymph nodes too .It has hopefully done its job and radiotherapy will give both areas a good blast too,plus I'm guessing you will be having Herceptin and maybe Tamoxifen,all combined should kick the blighter into touch!!!Jill.
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Re: Just diagnosed and wanting to talk to people who understand

Hi everyone I haven't posted in a while as have been bobbing along and just getting on with life! Was diagnosed in Aug with grade 3 idc with node involved her2+ so pretty dia really and I'm only 37!!! Thry decided on chemo first which I started September. Sailed through chemo without many troubles. Had a scan towards the end which showed no sign of tumour and lymph returned to normal size. So had mastectomy on the 9th with full node clearance. Went for histology yesterday which I was very laid back about and thought well we already had such positive news from mammogram!!! Feeling very deflated as they said tumour had gone but out of 16 lymph removed they found traces of cancer still in 11!! Ok tiny traces less than a mm!!! But I feel horrified that after the chemo they found that many traces in so many!! I know they have been taken out so that's fine but just feel so scared again now!!! The plan is more radio than first thought which I'm happy with. I'm just feeling scared again which I have to say haven't really felt since first diagnosis!!! Xx