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Is there ‘someone like me’?

syke82
Member

Re: Is there ‘someone like me’?

I think I spoke up too soon, jinxed myself I think 😄. So was due home 12 noon today, plastic surgeon came in to check things, felt my chest said was all soft and good. 5 mins later everything goes out of control my boobs had swollen to about 10times original size, said it was haematoma (worst pain ever). Rushed back into theatre immediately and also had blood transfusion as loosed a litre , so have stay here till Friday 😊. But recovering ok now.  @BernieD Glad to know yours went well and you recovering well. When you say 2 drains, was a double mastectomy you had?

BernieD
Member

Re: Is there ‘someone like me’?

Hey jaq, my surgery was in Tues last week, 11 june. I was home Wed and I'm feeling good. I have expander implant in and had 2 drains. 1 removed in hospital and the other at clinic on Friday. Glad to be rid of them like a ball n chain. You'll be fine just stay calm, I tried to think that all I had to worry about was a cannula couple of blood tests then a nice sleep. Take care of you. bx

KMG
Member

Re: Is there ‘someone like me’?

Hiya,

 

Sorry thought I had updated but I did it on the other thread I had got involved in!

 

Two weeks yesterday and yes am doing ok thanks. I seem to be in more pain now than at first but maybe because I am doing more. The look of the implant has improved a bit, I was very upset at first but realise I need to be patient. I am still getting very tired, it comes over me all of a sudden. Went out for a couple of hours today and that was enough.

 

Glad your op went well, you’ll feel miles better once the drains come out. I only had one and when home I found that if I opened a cupboard door and hung it on the handle in the kitchen I could move from the fridge/kettle area to the sink to make tea 🙂 

 

One day day I spilt some tea and rushed to the kitchen just dragging it behind me but luckily I had a few loops of tube taped to my stomach so it didn’t pull too much! 

 

Had my results on Thursday and lymph nodes etc were all clear so I don’t think I’ll need anymore treatment which is just great. There was 20mm more area of DCIS on top of the 60mm already taken so my surgeon said the mastectomy was definitely required. 

 

Hope you continue to feel good and recover quickly. 

@Jak26 let us know how you are - sorry I can’t remember now when your op was scheduled for.

 

Kate x

 

 

syke82
Member

Re: Is there ‘someone like me’?

Hi Kate, hope you doing ok? Any news on histology results yet?

 

Done my operation today, all good so far so good. Still on pain killers though, so not too bad. Drains are a nightmare, almost ripped mine off an hour ago in a hurry to get to the loo, completely forgot they were there 🙈. Lymph nodes were clear, so that’s good, just waiting for histology results. 

 

@jak26, when is your operation? Have you had it yet. Don’t worry, you will be just fine 🤗xx

KMG
Member

Re: Is there ‘someone like me’?

Hi jak26,

 

Yes a week today and I’m not doing too badly thanks. You will be fine, if I can do it anyone can. People say I’m brave but I’m really not. Everyone is different and we have to get through however we can.  

 

Best of luck with your op and please let us us know how you get on, sounds like you and syke82 are due at about the same time. If you have any questions just ask and will we all help if we can

 

Kate x

jak26
Member

Re: Is there ‘someone like me’?

Wish I had seen this post earlier.  I am going through exactly the same situation, but I was too scared to face it, accept it.  My surgery isn’t until next week.  You would be a week post op.  Hope you are doing well

KMG
Member

Re: Is there ‘someone like me’?

Oh no syke82 what a pain for you, as you say keep busy and a week will soon go by. They took my lymph nodes at the same time as my op and I get my results on Thursday, I’m so hoping there’s nothing sinister as I can almost see the end now.

 

Best news is I get my drain out this afternoon - yay! It was still outputting too much at my check up on Friday.  I was quite worried and a bit upset about my implant initially, but after seeing the nurse that has calmed a bit and I think I was still feeling low from the anaesthetic. Should improve once the drain is out and I guess I’m also getting used to it a bit now. 

 

It it seems that after all there are quite a few ‘someone’s like me’ out there, which has really helped x

 

 

 

 

syke82
Member

Re: Is there ‘someone like me’?

Fantastic KMG, well done. I am still waiting, mine was moved to 18th. Going in for lymph node thing today, Thursday pre op assessment and Tuesday day next week will be in same position as you 🤞. I have always thought the waiting is a killer. I have resigned myself not to think about it too much as the negative stress is not good for us either. Trying to be positive always and start the healing process from inside out. One love to you all brave ladies..😘xx

KMG
Member

Re: Is there ‘someone like me’?

Hi all,

 

All done and not feeling too bad at all so far. Not had a proper look at myself yet but will when I get up - all looks a bit odd from up here just now but will reserve judgement.  Worst bit so far was the waiting around beforehand..

 

Skye182 good luck for 11th you will rock it I’m sure. If I can do it anyone can believe me 👍

 

Kx 

KMG
Member

Re: Is there ‘someone like me’?

Thank you, getting close now. I have prosthetic stick on nipples already, made from a cast of myself. Don’t suppose I’ll use them but they were offered so I took them. Think I can have a medical tattoo later if I want too. I still can’t believe this actually happening x

syke82
Member

Re: Is there ‘someone like me’?

Yes, definitely immediate reconstruction with implants. Then after 3 months she will see me to discus date for nipple recon and probably an uplift to other breast if need be. 

 

All the the best with your operation KMG, at least you will finally but this phase behind you😰

🤗 

KMG
Member

Re: Is there ‘someone like me’?

Same as me then, are you having immediate implant? I’m booked for Monday and crapping myself TBH! 

 

The waiting is awful but so is not having long left.

Will let let you know how it goes, and yes I wish I was 5 again x

syke82
Member

Re: Is there ‘someone like me’?

How are you BernieD, when’s your ops again?sorry  not sure if I missed that. 

syke82
Member

Re: Is there ‘someone like me’?

Hope all you ladies are doing ok, you are all brave! Sending you all loads of hugs.

 

Sometimes I just want to go back to being 5 again🙈.

Yes I totally agree with you KMG, the fact that you will be closely monitored give one some form of reassurance. As at today, I have decided to have just the left boob taken off (for now until the next time I change my mind again 😂). I have requested a scan of the good breast and also to be referred for the BRCA gene test. The nurse did mention that I will be monitored closely for 14years if I had just a single mastectomy, with double mastectomy and reconstruction (I will be discharged after 2years). 

My surgery is 11 June (so not too long now). 

 

RoxanneT
Member

Re: Is there ‘someone like me’?

Ok.

I know your op was postponed, have they given you the results? I hope they were clear.

How's your arm?

 

Your GP sounds like my district nurses, they were useless. I ended up having to empty my own drains and keeping the tabs on the output. 

KMG
Member

Re: Is there ‘someone like me’?

Yes I’m having level one biopsy. From what I’ve heard that is the most painful part?

 

I’m dreading my results even before the op, each time so far the news has just got worse 😞

 

Will let let you know how I get on x

BernieD
Member

Re: Is there ‘someone like me’?

Yes, blue dye then node removal. 

RoxanneT
Member

Re: Is there ‘someone like me’?

I was going to say it's my new normal, ha, ha. Have you heard that term yet?

I haven't found my yet.

 

My opt went well no complications but the waiting for the results is awful. It's good to keep busy and daytime telly is rubbish.

Don't rush back to work, it can take lot out of you... make sure you start the basic exercises asap and if they offer you physio, take it. 

 

Are either of you having lymph nodes checked?

BernieD
Member

Re: Is there ‘someone like me’?

Thanks Roxanne, glad you're getting on well now, it's definitely one of the most stressful events in your life. It's hard not to let it take over your life. Can't wait to get my head back to normal. 

KMG
Member

Re: Is there ‘someone like me’?

Thanks Roxanne,

 

I’ve never been made to feel any less important by my surgeon or the clinic, but in my head it makes this more difficult to come to terms with. I have a bra now from the clinic so all good there. 

 

My work have been great so far but

I need to be back ASAP, I’m counting on the 4 weeks I’ve been told (even if I have to do the first week or two after that from home or reduced hours to start with). 

 

A week today it will be done, I can’t quite believe it, I feel a bit sick just thinking about it 😞 

 

I hope your reduction goes well and your hand  recovers fully very soon.

 

Kate x

 

 

 

 

RoxanneT
Member

Re: Is there ‘someone like me’?

KMG & BernieD

I'm sending hugs to you both.

Am I like you both ? … no! but i'm similar

I was diagnosed with low to med DCIS in Dec 2017. I was only offered a full MX on my right side. I opted to have a delayed reconstruction. On the date of the op I began to have doubts and changed my mind. I'm big chested and suddenly I couldn't handle being flat on one side. So I only had the sentinel node bio, with the blue dye. Blue pee, seriously weird!

Around 3 weeks later I had an MX on the right side with immediate reconstruction (expander). I stayed in hospital for 5 days, due to a problem with my hand, but got released with 2 drains and a large bag of meds.

 

What can I tell you... you need to do what feels right for you.

 

They will give you a bra. I awoke in one post surgery and I had to wear it day and night for 3 weeks. I'd advise you both not to buy too many bras until afterward. I can only where sports bras from M&S as normal bra press on my expander and I don't like it.

 

I was advised to take the prescribed pain killers even if I wasn't in pain.

 

Post op my head was all over the place. I too was told I was "lucky" and that it was a "pre cancer" (only by some doctors ) but I didn't feel that way. DCIS is cancer, don't let anyone else tell you otherwise. You are entitled to protection at work under the disabilities act and free prescriptions. 

 

It's been 16 months since my op, I'm back at work fulltime. I have good days and bad days. I'm waiting for a reduction to my left breast and still trying to regain the strength in my right hand.

 

it's an emotional roller coaster, but you can both get through it

XX

Linda Corinne
Member

Re: Is there ‘someone like me’?

My last message should have read symmetrising mammoplasty.

KMG
Member

Re: Is there ‘someone like me’?

And I thought mine had been drawn out! Mammogram in November 2018, first op mid Jan, 2nd mid Feb, then devastating news that it still wasn’t enough 😞 We waited till now for mx as I had a holiday booked early April. I hope you can make your decision and be happy with it. I’ve made mine but still in a mess over it x

 

I am a bit worried about the other side TBH as only 9mm of calcification was visible and they’ve taken 60mm now and still got margins, so god knows what they can’t see yet in the other one! But as will be monitored yearly now I’m prepared to wait and see. This is bad enough let alone losing both in one go. You’re very brave x

 

Bernie, no they do white, black and honey, but I think I have seen red surgical ones online? I will go to m&s for more after, but as I don’t really know what size to get just now this one will have to do until I’m my final size. 

 

This is link to website:  http://www.recoheart.com

And here is the red one I saw: https://www.macom-medical.com/products/signature-bra/2?currency=GBP

 

Happy shopping 🛍 

 

syke82
Member

Re: Is there ‘someone like me’?

Hi Kate, thanks for your reply. Mine seem to be dragging on though. I went to the doctors march 2018 for a nipple laceration from breast feeding that wasn’t healing (5months after I stopped breast feeding). Got some cream for it and GP kept an eye on it, developed a pea size lump Nov 2018, got referred, had biopsy feb 2019 (inconclusive), had a minor OP to get more tissue for further investigation April 4th, came back as DCIS  low to intermediate grade 16th (surgeon was shocked as he told me after surgery it was just little benign cyst). Anyways had a mammogram of both breast afterwards, nothing showed up on the mammogram not even the Dcis in the left breast. So asked myself if mammogram is not even picking the dcis already there, what’s the guarantee that my other breast don’t have any nasties lurking about, so I thought why not just take both off and stop the worrying. Ps says it’s drastic to take the both (but I have to be sure it’s what I want), although she ok to do it. Now I know that my tissue is not an option, it makes it more difficult (do I want to put 2 implants in my body?). Plastic surgeon said I can do one now and if I am still worried after a year or so, I can come back to remove the other breast. I am seeing her next week with a definite decision (she did say my operation will be round later part of June) and a specific date penned. I swear, sometimes it feels like my head is about to explode😊.  Sorry for the long winded reply😊, I will keep you posted. Please let us know how yours goes, you will be just fine..xx

BernieD
Member

Re: Is there ‘someone like me’?

Thanks Kate, do they do it in red??? 😀I bought a couple of nun bras from m&s.😄 they're very well fitting and quite comfy. I wore one to test it. It's double the size of the bras I wear now 😳 😉 they don't charge vat either so although it was upsetting buying them, the staff were lovely and we all love money off. 

BernieD
Member

Re: Is there ‘someone like me’?

I'm so sorry to hear that, I felt exactly the same until I discussed it with the plastic surgeon. They told me that some women feel worried but afterwards accept their implant. When you think about it we're guessing how it will feel so hopefully we can come to terms with it and find some degree of contentment. Hope all goes well for you. Bx

KMG
Member

Re: Is there ‘someone like me’?

Bernie FYI this is the bra I’ve been given by the clinic. It’s not FOC I need to make a donation later which will go towards them replacing it for the next person.  It has hook and eye front fastening and Velcro adjustable shoulder straps. It is really comfy but guess that may change after the op 😞 4261C771-87F5-4F8D-A216-9C4BF19604A0.jpeg

 

KMG
Member

Re: Is there ‘someone like me’?

Hi syke82, I know just how you feel. I have a week to go but still change my mind about what to do about 3 times a day just now.

 

I have signed the forms so am going to see it through and see how I feel. If I hate the implant or have any problems with it I have decided that I will just request that it is removed and stay flat. 

 

I’d rather do it that way as I can keep my skin now, than have it all removed and have to go through skin stretching etc if I did want an implant later. 

 

Like you I can’t bear the thought of being flat. When is your op due? I’m happy to let you and Bernie know how I get on if that would help? 

 

Kate x

syke82
Member

Re: Is there ‘someone like me’?

Hi BernieD, 

I am in a similar situation with DCIS under nipple and mastectomy unavoidable. I sincerely don’t want implants in my body as got my concerns, but can’t bear the thought of no boobs (so reconstruction is definitely on the table). Plastic surgeon say I am too slim for tissue reconstruction, so got no option but implants. I am in a very confused place trying to decide what’s right 😰😰

BernieD
Member

Re: Is there ‘someone like me’?

That's great you're all organised. Hopefully all goes smoothly. After months of waiting it seems to go rapid now. Look forward to some relaxation and taking some time for you. When I asked about bras I was told Primark or asda. 😄 I have a licence to shop 👍 if you learn how to pm, let me know as I'm a bit low tech. 😉 wishing you well. ps..Not to brag but I was told I have nice veins. I've had better compliments 😄😄😄

KMG
Member

Re: Is there ‘someone like me’?

Hi Bernie, 

 

Sorry only just seen your reply! Yes all good thanks.  Apparently as I have good skin and have healed so well from previous ops we can go straight to perm

implant, so after it’s healed that should be it, barring dodgy histology results. I was told the dye would make me look a bit grey for a few days and my pee would be a weird colour for a day or two but that’s all? Will def ask about that again but I guess it is what it is. Clinical photos and pre-op booked for Thursday morning then in at 12 on Monday 3rd (no food after after 7am), op at 1pm, stay in that night then home Tues. Clinic appt to check wound/drains on Friday then results consult following Thurs. They gave me a bra too which has put my mind at rest, I had no idea what sort to buy.  I’m still scared but I think I’m ready to face it now, my surgeon is great and every time I see her she makes it all seem

much better. I’ll try and remember to update on here but if you prefer I’ll pm you (if I can work out how to!) or we can swap numbers? Let me know when you get your date x

angie123
Member

Re: Is there ‘someone like me’?

Even though they’d told me, I was still shocked!! 

💙😂

BernieD
Member

Re: Is there ‘someone like me’?

Blue pee..... Pity there's no snow. 😊 I always look slightly blue when it's cold but never in june. With my luck I'll be like an extra in avatar. 😆. Thanks Angie

angie123
Member

Re: Is there ‘someone like me’?

Bernie

 

I think the blue blob takes about a year to go, mines fading now (from beg February.) I was told I might look blue/grey/off colour. I don’t think I did, but my wee was blue the first couple of times and that was weird!! 

 

Hope no no one is too smurf like xx

BernieD
Member

Re: Is there ‘someone like me’?

Hi kate, how'd you get on with the consultant? Are you all signed up.? hope the time flies for you. Will be looking in on you to see how you are. I saw the surgeon on Friday and looks like I'm scheduled after you. Was told after I get the dye injection my boob may stay blue for up to a year after.😳 she also said some people end up with a blue tinge to other areas of skin. 😨 hope I don't end up like a smurf. 😀 good luck and take care. Bx

KMG
Member

Re: Is there ‘someone like me’?

I will look it up, thanks. I’m seeing my consultant tomorrow to sign forms etc and hoping (that sounds wrong) that they can still keep to 3rd June date. If I have to wait any longer I think I’ll go mad x

BernieD
Member

Re: Is there ‘someone like me’?

Hi kate, there's a book called b is for breast cancer in amazon. I can recommend it as I identified with the authors feelings and it's lighthearted. I cried and laughed in equal measures, I passed it to my friends and their feedback was positive too. I'm seeing consultant in Friday morning so I'll let you know if I get a date. Bx

BernieD
Member

Re: Is there ‘someone like me’?

Thanks Evie, it's a life changing event made worse by some blase' attitudes. But I have great friends and family supporting me and also this wonderful forum. Bx

Evie-S
Community Champion

Re: Is there ‘someone like me’?

Jewels994 - thanks so much for sharing the Mountain Lion analogy, that is so spot on.

 

BernieD - welcome to the forum and all the very best to you too. I was shocked by your GP’s attitude when you went for your sick note, but admire the way you handled it. As I said to KMG, you really shouldn’t feel like a fraud. Do ask if you have any questions that we might be able to help with.

 

Evie xx

KMG
Member

Re: Is there ‘someone like me’?

Bernie I’m too thin for DIEP flap too, TBH I’m not sure I could face the recovery time and 2 wounds to worry about anyway.

 

Let me know your new date when you have it x

3331melanie
Member

Re: Is there ‘someone like me’?

Wow! This analogy is so powerful and is exactly what it feels like!

xx

BernieD
Member

Glad to hear it Linda. Hope your happy with the results o...

Glad to hear it Linda. Hope your happy with the results of your surgery. Bx

BernieD
Member

Re: Is there ‘someone like me’?

Hi kate, I'll be watching your progress, my surgery date was today but was postponed to look at other options ie own tissue implant. Not possible as I'm too thin. Think I watched the clock all day thinking where I'd be otherwise. I'll be watching the clock for you now too. 😉 good luck and remember whilst everyone is counting the minutes you and I will be having a good sleep. Take care. Bx

KMG
Member

Re: Is there ‘someone like me’?

Thanks all, the mountain lion analogy is spot on!

 

I have received only the best care and compassion and bar the usual NHS appointment screw ups I have no complaints. My surgeon is a lovely caring lady.  I have not been made to feel any less important than anyone else due to DCIS, it just seems less important in my own head when I see others stories. An mx just seems so drastic but I understand completely that it is for my own good at the end of the day. They have already taken 60mm in excisions and any more would leave me mishapen and probably still leave margins. I’m most worried that invasive disease will be found and this will not be the end of it, but I guess only time will tell.

 

Good luck Bernie, I’ll let you know how my op goes - maybe we can compare notes

 

Kate x

 

 

Linda Corinne
Member

Re: Is there ‘someone like me’?

Wow I love the lion analogy. I read another one about a silent stalker which made me laugh. My OH liked the lion analogy too. I am on the May surgery thread as just had symmetrically angioplasty on Monday. I had IDC diagnosed in March 2018 and am in remission now!

Love Linda xxxx

 

 

Chick1
Member

Re: Is there ‘someone like me’?

Hello Jewels, 

Just to say Thank you for posting tge Caitlan Freeley (may have got the name wrong) Mountain Lion Analogy. It gets me everytime I read it.

Regards to you and all, 

Chick 🐥 x

angie123
Member

Re: Is there ‘someone like me’?

Dear All

I can completely empathise with all that has been said here, and there are similarities, but I don't think I am quite the "someone like you" - mine was picked up at first mammogram also and is described as DCIS and infiltrating - "nicer" word than invasive??  I was petrified for surgery, found no one on the day at all compassionate or caring and it was awful.  After that I was less scared for further treatment, but I kept being told I was "lucky" and yes, I can see it could be much, much worse, but I don't feel all that lucky so far, if I am very honest.

I have found support on this forum and from the ladies I have "met" here has been a complete lifeline for me Heart

Sending best wishes to you all xx

BernieD
Member

Re: Is there ‘someone like me’?

Thanks for the reply. I'd read that to my friends and husband who all identified themselves in the story. It made us laugh but explained how much shock and horror we were all feeling. Thanks for your support. Bx

Jewels994
Member

Re: Is there ‘someone like me’?

I really feel for you both. Some people just don’t get it. Mine is a grade 1 IDC and there are so many people that have said to me, it’s nothing, so many people get breast cancer and it’s so easily treatable.  It must be even worse for you with people not understanding how scary the whole thing is. I found this analogy just after I got diagnosed and I think it’s great

 

Cancer: the mountain lion in your fridge
What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.
Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!
So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” - and you really appreciate the support, but the mountain lion is still coming.
Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”
As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they’re half grown and only have three legs or whatever, and you think to yourself - why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?
Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, in my case, my husband - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.
Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.

Maybe. You’re not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”
Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “**bleep** this mountain, I never wanted to climb it in the first place.”

BernieD
Member

Re: Is there ‘someone like me’?