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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

Hi all...... Claire I'm with you on all that you've said! Hope all goes well and swift for you! is it Friday your op? 

Amanda, thanks for asking, I'm ok physically, coping better with the soreness and getting used to coming downstairs to rest early hours. Though last night I didn't bother going to bed! I got comfy on the sofa and told hubby to leave me there! He wasn't too happy about it and thought I'd eventually go up...... I didn't, I slept through from 12:30-7:15! Then dozed rill 9! Amanda, good luck for your results Hun xx 

Emotionally however, that's a different story. I bucked up by Friday but the **bleep** cloud was back yesterday..... I had a big meltdown in the shower this morning and whilst drying my hair. Kept thinking about losing it (hubby doesn't know I lost it this morning, I'm trying to be strong with him). Waiting for results and I just cannot get the worrying out of my head! I've got a nagging pain at main scar site, thinking the bastard is still there! But in reality it's healing? I know I shouldn't have...... But I checked the BC for survival rates and scared myself once more! My kids are just young adults and starting their lives, I want to see them succeed, settle down and I've so much more I want to do with mine! Im on quite a downer at the moment and I know this is not good for me. Want my results and a definite next step but on other hand I'm petrified of what she's going to say. Feel I should be doing or taking something now? 3 week post second procedure Thursday, I read that dome are taking medication and others started chemo/radiotherapy soon after Ops? Feeling useless xxx Tina 

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

Is th C,T full body scan the same machine they use to work out the radiation therapy, place tattoos? Just wondering x

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

I got incredibly anxious as surgery drew closer, I was actually more worried that I might not be able to have it, as I was keen to 'get it out' and onto the next stage! I also worry about spread, with a CT scan on Wednesday, there will be more worry in that respect! I guess it's just something you have to try and keep in perspective, and remember they have quite a lot of ammo to throw at whatever they find.

 

I think everyone on this forum must have had the darkest thoughts every now and then, the honest truth is that no one can guarantee a successful outcome, but then again, there are loads of other potentially life threatening things we all do....travelling in a car being one of the most dangerous things we do and on a regularly, without a second though!

 

Definitely dreading the chemo, too....you just don't know which side effects you're going to get and how bad they will be. Just got to keep at it and tick off the days until it's done!

 

Amanda x 

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

Hi Everyone, Amanda I think meltdowns are definitely part of the process of going through BC. I have certainly had some! I am getting more and more anxious about my second op on Thursday. I am working till thurs as it helps but in some ways having a bit of normality back s going to make it harder to give it all up again. This time I know it's long term as chemo starts Jahuary. 

Chemo is just so incredibly scary and I can't even let myself think too much about it or I will completely freak out. At least there are others on here who will be going through it at the same time. 

Feeling very apprehensive again and my fears about it having spread are bubbling under the surface all the time. I hate all this!

love to everyone. Sorry to sound negative.

claire xxxxx

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

Good work with the blog Charlie, I enjoyed reading it, I will bookmark it for sure!

 

Amanda x

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

Look forward to reading it Charlie...I'm sure it will help lots of people diagnosed. Nothing better than reading someone else's experience, far more valuable than some medical jargon were they have not gone through it. Ladies going through or about to start the dreaded chemo! Of course you will be fearful, the unknown always is but try take it day by day, more than that will be too daunting. I hope you have minimal side effects of any. Sorry to be a stranger in here right now. Planning daughters 18 th party on 12th of this month...then there's xmas oh and work in between! Grr! Sending love and positive vibes x x x Lorna
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Re: Just diagnosed and wanting to talk to people who understand

Oh, I'm sorry to hear you had a meltdown Amanda.  I was only diagnosed a few weeks ago and I've had more meltdowns than I can count! 

 

I planned on creating a little meltdown box to cheer me up (chocolates, hankies, funny postcards - that sort of thing) but it turns out that a glass of prosecco or wine work just as well...  Fortunately it's nearly Christmas, so my drinking can be classed as seasonal!  🙂

 

I hope everyone is feeling strong and coping well.  I'm a little embarrassed to share it, but I've been writing a bit of a blog and, as some blogs I stumbled across really helped me (and my mum) in the early days of this cancer nonsense, perhaps mine will help someone else one day.  https://bigc32g.wordpress.com/ 

 

It's nothing fancy, but it's there if you're struggling to get to sleep!

 

xx

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

How is everyone today?

 

I had a meltdown last night, as usual, after the shower! The swelling at the bottom of the mx site seems to be swelling and pushing in the scar so I can't see it as it's in a sort of 'ditch' which is a bit difficult to get dry. It's not particularly sore or hot or anything but it's not like the seroma either, there is no slopping of liquid. I guess I'll give it a few days and see what happens.

 

How are you feeling Tina? I hope you've been getting a bit more sleep!

 

Love and hugs to everyone,

 

Amanda x

 

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

Hi Sissy, yes, they took everything when I had my mx and I am now flat as a pancake as swelling all gone down. At least the other side will match after Thursday. Seriously though I am dreading it. I, assuming I get through treatment and out the other side, definitely want reconstruction. I can't face the rest of my life boobless and even though it is major surgery I think I need to do it. Long time ahead though. Let's hope I get there! Claire xxxx
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Re: Just diagnosed and wanting to talk to people who understand

Tina, there's nothing wrong with having a moan! I used to think that the nurses were looking at me in a funny way as if they knew something I didn't, however my husband used to say I was imagining it! In relation to what your GP knows, where I am I've found that my GP doesn't get any letters from the hospital until a good couple of weeks after my appointments.

Claire, did they remove the nipple area as well with your mx? I've been wearing non wired bras when out and about, however it does get sore after a few hours. I was measured up for my prosthesis yesterday, it's quite a bit heavier than the softy!

Amanda, I'm in two minds about recon at the moment. I don't know if I really want to have another operation unless it's really necessary.

Regarding emend, I asked one of my BCNs about it and she seemed to think its recently been reduced in price so hopefully it will be given out more. Sissy xx
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Re: Just diagnosed and wanting to talk to people who understand

Good morning everyone! Sunny but chilly here in Kent!

 

Chris, I'm definitely going to check out 'Flat Friends', thanks for that and general advice. I hope I'll get Emend, I have heard about that several times...doesn't help that the local hospitals are currently in special measures, I feel that I will have to go through some sickness episodes to get it as they are so strapped for cash!

 

It's certainty going to be weird to be 'boobless' Claire, but I am finding that I am having to wear a bra, which gets very sore as the day progresses, just to support my remaining boob! I am not considering reconstruction at all so far (although I couldn't have it until after chemo and radiotherapy anyway). Having one is just unbalanced! 

 

Amanda x

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

Oh, and I forgot to say, for those  having mastectomies without immediate reconstruction , single or bilateral, if you are on Facebook, look up 'Flat Friends' an amazing brilliant supportive group of ladies that have decided against reconstruction and love being flat and fabulous. 

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

Morning all. I'm not a regular poster on this thread but read it often and emphathise and sympathise with everything everyone is going though. I'm half way through my FEC T chemo and I can't lie and say it's easy, but the good bit is that all that early uncertainty and waiting has gone. You know how many sessions you'll have, you are given the appointments in advance and mentally you try your best to prepare for it. FECT seems to be th most common chemo given to us ladies on 3 week cycles, though some have different drugs and some have it weekly. I think some of it depends on your Heath and other conditions you may suffer from. I have found the first week is not pleasant, I have suffered sickness and nausea (more in that in a minute) but after that it's ok, you gradually get better and stronger, then it all starts again. I'm day 9 now and went to see Spectre yesterday and am going to a Christmas fare with a friend this morning. Normal life can and does resume. Amanda, and those worri d about sickness th Magic drug to request is Emend. It is expensive apparantky and they don't just prescribe it willy nillu, but once you get it, it does stop the sickness. Sorry for rambling, I just want d to try and reassure those of you that ar starting to dread the next step. You CAN do it. Good luck all. Chris xxxx

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

Morning Tina and everyone, I have just read the posts from last night and I share your paranoia Tina! It's very hard not to read more into comments or think there are things you are not being told. In my darker moments I think that the medical team haven't told me yet its terminal! Then I try to remember that they haven't CT scanned me or started chemo yet so I have to trust them! I have all the letters they sent my GP so I am sure they are the real facts so far and there is nothing on them they haven't told me face to face. I am lucky to have a lovely BCN who is very supportive. That does help.

i am feeling pretty good at the moment and work has been great for me. However only 5 more days until surgery round two. I hope I recover as well this time. I haven't had any burning feelings but have moistursed religiously as advised by a friend who had a mastectomy. 

Scaryvthought that this time next week I will have no boobs! I hope I can cope with it emotionally. First one has been ok but this is a whole different ball game! 

Meanwhile I am going to do my best to enjoy this little bit if normal life!

Have a great weekend everyone

hugs Claire xxxxxxx

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

Thanks Amanda. Yeah I know what you mean about codeine slowing things down!😫 I'll try the ibuprofen tomorrow as I've had to rub some ibugel into my lower back tonight so can't take orally too..... Sleep disturbed through back hurting by staying on it! I had a back injury back in March and its playing up by not being able to change positions in bed! Using my V pillow to prop self up to ease back pressure but it doesn't last all night. 

God all I've done on this thread tonight us moan!!! Sorry guys xxxx 

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

Good news story meet  mad Ange today while she was having her chemo. Lovely to put a face to a name and she lives up to her name!. Feeling very lucky to have not  needed any chemo or radio therapy and hope all that need it are as positive as mad Ange, take care Sarah

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

The burning is hideous Tina, I take two paracetamol then four hours later, two ibuprofen. Don't like codeine as is slows things down, if you know what I mean! Take the normal dose and take them every four hours. You can actually take both together, as they are different drugs (that's what they gave us in hospital...2 of each, to take) You could try that at bedtime, if your struggling to sleep. Also, moisturiser helps a bit, although I find it uncomfortable to put on, but keeping your skin supple is a good idea, especially if they took nodes.

 

Amanda x

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

So Tina, I have been told by two different BCN's and my surgeon that I will be having FEC-T. I asked them about chemo at every opportunity I have had to talk with them... will I have it, then when, what will it be be, how long? All three have said it will be on FEC-T starting sometime in January. 

 

As as for info your doctor may or may not have, of course each health authority can be different, but mine write to my doctor and copy me in, so I see everything he's being told....but it is very much delayed, maybe 4 or 5 weeks after the treatment, and then they only anything major, like surgery tends to be mentioned, and not much detail, you will find out more when you see the surgeon. My GP hasn't even been told I had the mx and anc three weeks ago, as far as I can tell, so I doubt yours knows anything yet. I have asked for and been given both my histology (pathology) reports. However, these are a bit complex and need a lot of 'Googling' to understand and can be a little scary; mine included a 'Nottingham Prognosis Index', which wasn't as favourable as Predict! If all this is worrying you, phone either your GP or BCN or surgeons office and ask.

 

If you want to know something about your diagnosis or treatment, ask clearly as you have the right to know. Your health care professionals will however, not want to deliver you news if they are unable to be sure what it means and answer your questions properly, so that is probably why the nurse minimised the screen, as it was probably beyond her brief to deal with. Also, if they sense that you are a bit wobbly, they won't want to overload you with anything.

 

Try to be patient, I wouldn't have thought any of them are hiding anything from you, from what you've said so far. Call your BCN or outpatient office and ask when you're appointment will be, I got my date for the appointment the day after surgery, on my discharge papers. Two to three weeks after surgery is the norm for the follow up, so you should be seeing them soon.

 

Amanda x

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

I know you're right Jill...... I need shaking!?....... I'd given myself a few days off the forum but got drawn back in through experiencing this continuing discomfort, burning, pulling pain with **bleep**ty nights sleeping. This post procedure is worse than the first and I can't bare the thought at the moment if more surgery. Xxx 

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

In my experience results seem to come very last minute and then discussed in multi disciplinary meeting before your appointment ,can't imagine they would be so organised as to write to your G.P a week ahead of your appointment ????
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Re: Just diagnosed and wanting to talk to people who understand

You maybe need to stop reading about cancer for a few days and give yourself some time out,everyone's experience is different you really don't know how you will react to chemo.Easy to scare yourself s*****ess reading stuff ,we are all guilty of that.
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Re: Just diagnosed and wanting to talk to people who understand

Thanks guys...... I'll maybe ask, I tried to read the e mail on screen when I went to the duty clinic for dressings last week but the nurse saw me and minimised the screen!!?!?! See?!  This is how and why I'm bloody paranoid! 

I've just come off the chemo thread....... **bleep**e!...... Xxxxx Tina 

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

The bleeped out word was S**T !!!! 

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

Jill is right Tina, you know your having chemo so whatever this latest op throws up there won't be anything else treatment wise they can hit you with, get that glass or 3 of Merlot down your neck love and try and chill out, it's a pile of **bleep** I know but you will do it! Xx 

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

Hi Tandy. You can ask for a copy of all letters to be sent to you; you'll get them at the same time as the GP. It's useful to do this because they sometimes have a bit more detail than the consultant discusses with you.
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Re: Just diagnosed and wanting to talk to people who understand

You are overthinking things due to lack of sleep and pain etc.What could else could they possibly find that you don't know already ?
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Re: Just diagnosed and wanting to talk to people who understand

Large glass of Merlot prob do you more good than the painkillers Tina.
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😮 oh my good god!?! I've learnt something else new tonight....... So...... Hair grows elswhere!?! 

FEC T....... This is type of prescribed chemo yes?.....  How do you know Claire this is type you'll get? What's surgeon said to give you info?!........

Jesus I'm so sore today, sick of taking painkillers that don't seem to be working!?...... Need a large glass of Merlot!!!! Shooting pains ...... Putting on weight through inactivity which is pissing me off too! 😏 Generally had  enough of it!!!! Trying hard to be positive, waiting for results, dreading the chemo...... Would my GP get to know results and next stage before I'm called back for results appointment?! Paranoid she knows more than me. She rang to say sick note ready and said she'd put "having more surgery" on it and dud I have a date yet?I told her I was post op 2 weeks ago. She said, oh, you've had it?

#paranoia-worried-sick with it all xxx 

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

If only we could work out how to transplant hair from unwanted areas to head .....
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Yes I may have mentioned it once or twice Jill! I'm So hairy I should have been a man 😳 I spend my life waxing, shaving and plucking 😱

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Bloody men,got it easy...!!!!!I have developed a nice goaty beard thanks to Tamoxifen , so can't even cross that one off the list!!! Less hair on head, more a chin,the joys of cancer treatment , as Jo has said a number of times , it's the gift that keeps on giving!!!
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Re: Just diagnosed and wanting to talk to people who understand

I'm glad that breast cancer is much less common in men, if loads of them had to go through what we do, can you imagine the wingding! Still, there might less 'man flu' around then! 

 

Sorry guys, but honestly, no periods, no PMT, no pregnancy, no childbirth, no menopause. Ok, they have to shave....their chins, if they want, for us it's legs, underarms, lady gardening! 

 

Well, there's my very random rant, and no, I haven't had a row with my husband and he's super caring and supportive! I do think men have it easy, though! 😉

 

Amanda x

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

Keep on ,keeping on everyone, all you can do really ....
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Well done Ange,you are getting there .
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Re: Just diagnosed and wanting to talk to people who understand

I am dreading chemo too Amanda it's the thing I am most afraid of in this whole horrible process. I think it will be FEC T for me too from what the surgeon said. More surgery to face first though. At least we will all be ok for Christmas. Claire xxxxx

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

Hi all, FEC 3 done. Not feeling fab at mo but that's just the way it is. Lovely to meet you today Spongbob- nice to chat. Hope you enjoyed your Xmas shop. Big hugs to all xxx
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Re: Just diagnosed and wanting to talk to people who understand

Had over 300ml drained off today! Though it looks as if it may be slowing a bit. Got fitted for my prosthetic as well, need to find some more suitable bras! Sissy xx
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Re: Just diagnosed and wanting to talk to people who understand

Hi Everyone, hope you're all doing as well as can be expected.

 

I'm dreading chemo too, Tina. It will be the same as Nikki, three FEC then three T. I am really worried about nausea and sickness, I was travel sick as a child and had quite bad morning (most of the day) sickness with all four pregnancies, so I can't see it going too well in that respect!

 

BCN drained the seroma today, seems to be slowing down a bit now and then she showed the chemo unit and explained a few more things. 'CT scan chest/abdomen/pelvis with contrast' next Wednesday, and then a few nervous days waiting to hear about that!

 

Sissy and Tina, the soreness 'burnt' feeling is the worst thing isn't it?! It's much worse than after the first op!

 

Glad to hear it is just piles Barry, sounds like you're haveing a ball during the investigations! Maybe your change of diet to help Nikki has set it off.

 

Amanda x

 

 

 

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

Hello all, can't sleep, seem to have got into a bad routine of staying up late. Though I have used it as an opportunity to do some online Black Friday shopping!

Delly, have been doing my exercises regularly and have been more active around the house and have started driving again. Still not allowed to use the Hoover though! I hope you and your cat are okay.

Claire, glad to hear that being back at work is going well. I popped in to work for a couple of hours on Monday and it was great to see everyone. Im planning on going in next Monday for a few hours.

Tina, I still have the burning feeling 3 weeks post surgery, that and the numbness In the arm pit are the worst part of my recovery so far.

Still have the seroma. Off to have it drained for the 4th time later today, I just wish it would clear itself up! Sissy xx
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Re: Just diagnosed and wanting to talk to people who understand

Ah I see, thanks for explaining Bazza, no doubt it will all become clearer for me all too soon! 😒

Claire, I only popped in for hour, had lovely meeting with my PT. My return when ready will be at my discretion. It was love,y seeing them though. Sentinel node biopsy? That's what I had which confirmed it in lymph nodes. Though I've no idea how many/how much affected!? Had axillary node clearence two weeks ago and I'm in more discomfort than when I had first procedure. My consultant, Dr and nurses I've seen (still not had any contact from so called named BC nurse!) all said they strongly advise no work during chemo as schools are very high infection risk so I'll not be going in. Pinning my focus on returning hopefully last term before next summer holidays!?! 🙏🏼

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

Yeah half way 🙂

FEC-T is what she's going to have. Intitials are the names of the drugs. FEC for 3 sessions then T for the other 3 x
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Re: Just diagnosed and wanting to talk to people who understand

Hi Tina, I only had sentinel node last time. Unfortunately 12mm tumour found so got yo have rest out this time. Well done got going into work. I love being back and I hope I can find some way to work a bit through chemo. It really helps me cope to have some sense of purpose! Hugs Claire xxx
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Re: Just diagnosed and wanting to talk to people who understand

Oh Bazza hope she's feeling better now?! God, I'm dreading going through chemo! This was 3/6? What's FEC? Chemo.

Good news on the piles then!..... Good luck with the 'inspection!'....... Xxx 

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

Hi Tina, the doc inspected me. I have external piles, and having a colonoscopy to see and hopefully confirm they are internal too. Nikki had 3rd FEC today. Was sick during her session 😞 x
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Hi all....... Haven't posted for while but I have been on here few times a day (and night!) reading all of your posts. Hi to newbies, **bleep**e eh finding yourself on here!? But the support is great. 

Well done Claire getting back to work, all be it for short while. Did you have axillary node clearence last time? 

Delly my lovely, keep up your posts, you've no idea how sane you've kept me through being able to smile and cry with you through your posts! Both on this one and the "can't sleep one!" Hoping this list finds you and your cat feeling ok? 

Trying to keep up with  names and stages, but for now hugs to you all. 

I'm feeling bit better this week, emotionally. Im doing my exercises guys but still very sore, tight and that bloody burning is horrid! Trying not to complain too much as I fear there's worse to come! Still waiting for results appointment, told three weeks and I'm post op 2 two weeks today. 

Bazza hope your dr apt went ok.... Was this week wasn't it? How's Nicki? Anyone heard from Dave!?!

Popped into work today, I was so nervous of seeing folk! But had nothing to worry about, it was great to see colleagues and friends and get hugs from the wonderful kids I work with! All missing me, asking when I'm back!? Desperate to get back! Hoping I can for a week before and after Xmas before the long stint off for chemo!:( I felt on high when I came home.... Positive strength to get back!

Planning a day out shopping tomorrow........ Hoping for a letter or call soon! Sending virtual hugs to you all xxx Tina 

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

DCIS means there are cancerous cells there but they haven't spread yet. I have just been unlucky and they found it in both boobs. Three tumours on the right so I had that one off first. Don't worry about it. My surgeon has said I am "unusual with active breasts with dense tissue" why can't I just be normal!!
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Re: Just diagnosed and wanting to talk to people who understand

Good luck tomorrow Ange .
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Re: Just diagnosed and wanting to talk to people who understand

Hi Name Me. Waiting to find out how bad things are was the absolute worst part for me. I was told by the radiographer she was almost certain I had BC. I was then put in a room with a box of hankies and a nurse who asked about my kids and told me to get help looking after them. I spent the next few days thinking I was dying and nearly going out of my mind. When I found out I was stage one, grade 3, I was actually relieved. I won't say don't worry because it is inevitably worrying, but once you have the facts you will be able to cope. There's always help on here. x
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Re: Just diagnosed and wanting to talk to people who understand

Bless Name me... it's a scary time but we've all been through it and still here to tell the tale. We sound like broken records but the waiting is the worst! once you have the results and a plan you will feel more in control and optimistic that this thing is curable in a lot of cases. Sending love Lorna x
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Re: Just diagnosed and wanting to talk to people who understand

DCIS - Ductal Carcinoma in situ. Cells haven't escaped the lump I think that's the layman.

Hugs to Ange, Claire and everyone else. For any newly diagnosed it's a roller coaster of emotions but the women on here are a great help and fountain of knowledge. Xx