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Confused

27 REPLIES 27
KazzyP
Member

Re: Confused

Hi Julia

Ive been thinking about you. Hope all went well on Friday and you are home recovering with your family. xx

Eglis
Member

Re: Confused

All the best Julia!

Eglis
Member

Re: Confused

Wishing you a good recovery!

what a wonderful positive post!

Be kind to yourself 

Jukat
Member

Re: Confused

Hi @KazzyP 

I filled up reading your post!!

I am so glad you had this positive experience and could share it with us! I know you were frightened as to what it would look like after the surgery so it is pleasing to know it's not as scary as you thought. We do build these things up in our minds don't we 😀

I have my mastectomy next Friday with a delayed reconstruction and will be thinking of you as my role model!

Get comfy and relax...you are a star 🌟

Julia xxx

louby_lou69
Member

Re: Confused

@KazzyP  I'm so glad all went well for you. Keep us updated on your progress x

KazzyP
Member

Re: Confused

Good Morning its almost 5am and I’ve been awake for a while!

Yesterday I had my mastectomy. Went to theatre about 9.45 woke up in recovery at 12.45 feeling totally alert. I was back on the ward by 12.30!

After 3 cups of tea, toast and about half a gallon of water I was home by 4.30!

What an amazing set of NHS professionals I met yesterday.They all went out of the way to calm my nerves before and then to tend to me afterwards.

I had/ have very little pain. I’ve already looked at my wound and it looks fine ( not sure what I was expecting) and I realised very quickly that it’s still me. I know there’s a long road ahead, but right now I can truly say I feel pretty good, so much better than this time yesterday. Guess what I really want to say is, for me a least, the reality was so much better than I anticipated 😊

I hope this helps to ease the worry for you somewhat. I am going to take it easy and relax over the next few days but will be thinking of you xx

louby_lou69
Member

Re: Confused

Hi

I go through moments of feeling strong and then moments of feeling terrified. But I'm an upbeat positive person so I'm hoping that pulls me through.

I'm a primary school teacher and work have been amazing. I'm panicking about September though and what will happen about my class. I also don't know if I will be able to go into school if I have chemo as you're immunosuppressed. 

I could cope with the flap. I aren't large chested, only a C cup so it would be easy to match up. We might as well have perkier boobs - every cloud eh!

I'll be thinking of you xx

KazzyP
Member

Re: Confused

Thanks for that Julia, I hadn’t really thought of it that way!

Of course the staff will be brilliant- I haven’t found a single one so far that hasn’t been.

I’m planning on doing a lot a reading  the next couple of weeks, hopefully in my newly landscaped garden and with some sunshine 😊

If you’re happy to share let me know what you’ve had published and I’ll give it a go xx

Jukat
Member

Re: Confused

Hi @KazzyP 

Just want to send you some positive vibes for Friday.

I used to be an Operating Department Practitioner (theatre nurse) and trained and worked in theatre for years....I remember a patient going arriving for surgery and someone wished them good luck and a colleague of mine said 'It's not about luck, it's about knowledge and skill' and I firmly believe that. I trust the theatre staff and they will have nothing but our best interests at heart.

💕Julia xxx

 

Jukat
Member

Re: Confused

Hi Lou

I am also 52...must be the magic number!!

They said it will be a couple of months between mastectomy and reconstruction....they put an expander in during the mastectomy to make the space for the implants and then when the reconstruction comes around they will level up the other breast to match. I have the bigger variety of knocker and the implant will be smaller so I will have a reduction on the other side.

I've told them that I expect the breasts of a 20 year old!!

Decorating will keep you busy....just watch you don't over do it!! I am planning on watching a lot of horror and doing some writing...I've recently had a story published in an anthology but I want to have my own full novel published (no excuse now).

How have work been with you? I have to say my company have been amazing and very supportive, which is really something that you need when this sort of thing happens. 

Good luck with your results and let us know how you get on. Just a heads up....even though we know we have cancer, when they talk about the treatment it can be a bit overwhelming and emotional....but it's also good to have that bit of closure. Let it wash over you and don't worry if you forget what they tell you...that's what partners/friends/companions are for.

Be very kind to yourself....we are women...we are strong!!

Julia xxx

louby_lou69
Member

Re: Confused

@Jukat 

Ahh sorry to hear that the cancer is bigger than they thought. I had my MRI yesterday and am waiting for my treatment plan.

If I have to have a mastectomy I also want reconstruction (I'm only 52). Have they said what the time frame is between your first surgery and reconstruction.

Please be kind to yourself and do something nice. I'm busy planning a living room re-decoration. 

Lou xx

KazzyP
Member

Re: Confused

Ah Julia, Im sorry to hear that.

At least now you know and once the initial shock wears off I hope it brings you some comfort to actually have a plan.

I have no doubt that you will face it all with courage and positivity!

It’s becoming all too real for me now. This time tomorrow I should be at the hospital and waiting for my surgery. Although Im scared, I will just be pleased to be getting on with things. I keep telling myself that once the op is over then every day will hopefully show an improvement and I will be on the road to recovery. 

I know there is still a long way to go, but have decided to focus on each step as it happens and am trying not to get overwhelmed by it all.

 

Thank you for your welcome and kind words Evie, it’s comforting to hear from ladies who have trodden the same path, so to speak 😊

Jukat
Member

Re: Confused

Well today has not been the best of days.

Had my call to meet with the consultant, which I did today. He said the cancer is bigger than they first thought and there is another spot of concern in the same breast so they are doing a mastectomy with sentinal node biopsy and a delayed reconstruction, so they will perform a mastectomy and then place an expander in, that will need injecting regularly to prepare the space for the implant. So I will have the implant and a levelling up on the other side at a later date.

I am pretty devastated....I love my boobs and because I have no/little symptoms its a bit of a blow. 

But hey...at least we know what's going to happen and there are so many people in the world that are so worse off than me.

Onwards and upwards ladies....power in numbers and this thing won't be us!!!

Julia xxx

Evie-S
Community Champion

Re: Confused

@KazzyP - Hi Karen, and a slightly belated welcome to this lovely forum. I’m glad you found it and hope you will find support throughout your treatment. I wanted to wish you all the best for Friday and I think your friend’s words are very wise - keep repeating those to yourself. I had treatment about 4 years ago, chemo, mastectomy and reconstruction, followed by radiotherapy and Tamoxifen, so if I can help with any questions please do ask, about treatment or how the forum works. Coincidentally, like you said about yours, my diagnosis date was the day after my daughter’s birthday. Let us know how you get on, when you are ready of course. Evie xx

KazzyP
Member

Re: Confused

Hi Julia

Sorry for the delay -I had a crazy sort the house out day yesterday! Partly to keep my mind busy but also because my Sister will be coming to stay to look after me and I don’t want her to think my standards have slipped😂
I’m pleased you have your Daughter back with you. My Son is the same age and is also due home soon after finishing Uni. I had to tell him via FaceTime as well and I actually got my full diagnosis on his Birthday, whilst he was home. 
I’m not sure about a future reconstruction, nothing was mentioned about that. I think I have come to terms with having a “falsie” but until It’s a reality who knows?

I hope you get your treatment plan soon. As many others have written, it seems to help when you have some idea of what will happen and when. I’ve found that the people around me, on the whole, have been brilliant, but it is certainly a case of judging their capacity to talk openly rather than mine! I find the “ it will be fine” brigade the hardest to deal with, because yes, hopefully it will be, but right now it’s not and I really need to be able to acknowledge that fact! 
I am very lucky that ones of my best friends has been through this 4 years ago and is also a District Nurse, so her thoughts and advice are helpful. As she said “. You may be in for a shitty few months, but you will come out the other end of it”. For some reason that just gave me comfort.

Take care and keep us updated

Karen x

Evie-S
Community Champion

Re: Confused

@Jukat - Julia, torture is exactly the right word for the waiting, so I hope you get your plan this week. But that’s great that your daughter is home from uni - mine has also just finished uni and come home, so I share your excitement to have her home (even if the house is now full of boxes and bags!!!) 

I love your messages to others, very positive but also insightful - it’s a great way to describe things, like driving a car but not being able to steer. If it helps you please chat away on here as much as you like and do keep in touch and let us know how things go this week. Evie xxx

Jukat
Member

Re: Confused

Well @Lemonsqueezy that is completely spot on!!

There was a flurry of supportive messages when people first found out, all saying 'here if you need anything' but that's where I found it stopped. No one wanted to talk about it further and it's possibly that they are so shocked they don't know what to say, but I still feel I have to talk about it, for me it hasn't gone away.

I feel if I talk about it then it's out there...I don't want to be afraid of it and if it's out there it's not just in me and I want it to be intimidated by me and not the other way round. I refuse to be frightened by it so will shout about it from the rooftops.

I am aware though that many people are more private with their diagnosis and treatment. I kept everything extremely private until my true diagnosis, as I had convinced myself it was a cyst! But once I knew I would need some type of surgery I didn't think I could keep that to myself and I hate rumours etc so I made sure everything came from me as far as I possibly could.

God I ramble on!! I do apologise!!

We are always here if you want to talk about it...we are not alone....we are strong warrior women and are there for each other!

Much love xxx

 

Jukat
Member

Re: Confused

Many hugs to you @KazzyP xxx

I know exactly what you mean....like an out of body experience!

It isn't enough we are side swiped by the diagnosis but the lack of control is quite overwhelming....it's like driving a car but not being able to steer! I too have felt this....not just with the medical staff taking over my health when I have always been so healthy, the uncertainty and the constant waiting, but also with having to hand over my project in work, it has been quite upsetting.

Will you be having a reconstruction in the future? I suppose for some people it's best to take things one step at a time. I honestly don't know how I would feel in the same position and I send you my best wishes, hugs and prayers. Because I am not sure about my treatment yet I keep joking with my husband that it will be like having a tooth out (lumpectomy) and I will be back at work the next day....just trying to think of the least invasive...though those dark thoughts still pop in now and then.

I found another good resource recently called 'Maggies'. They have locations all over the country where you can pop along and meet with other people in the same boat for a chat and a cuppa...maybe have a look and see what you think? Every little helps my love xxx

Stay safe and please let us know how it goes.

Julia xx

Jukat
Member

Re: Confused

@Evie-S 

I am so touched that you are thinking of me...thank you xxx

I am still none the wiser!! I spent most of last week in a bit of a fog not knowing whether they would call me in or send a letter and if they did send a letter maybe it went to the wrong address (they did have an old address on my notes when they broke the news). In the end I rang the breast care nurse and she told me that my MRI results were not ready for last Tuesday's meeting so it would be next week instead 🙄What torture is this!!

I have tried to keep myself busy with work, readying things to hand over to my boss and I have been writing a lot about my situation and feelings....found that very therapeutic when I lost my mum suddenly 10 years ago.

This weekend has been a different kind of therapy. My daughter (22) came home....finally!! She was meant to come home a couple of weeks ago when she finished university but then caught Covid. She was then late starting her internship in London and on the day she was allowed out of isolation she had to travel there and didn't have time to come home 😢 That put me in such a horrible situation as I needed to tell her the news and I wanted to make sure she knew before anyone else, I had to do it over Facetime. We have always been so close and she has been a rock to me in the past so her coming home has been quite magical...I feel I needed that. 

Hope you are doing ok xxx

Lemonsqueezy
Member

Re: Confused

I'm also recently diagnosed, caught by my first screening mammogram. I remember someone saying to me the worst thing is how alone you feel. I couldn't understand that at first, but I'm starting to feel it despite the love and comfort around me. I guess it's because you are the only one that can go through the surgery, the treatments. However, talking to others who know this for sure as they've done it must really help and I hope to get some comfort from this myself. I've started a blog which I find really really helpful to capture my ups and downs. Please feel free to read to see if anything resonates.

IT'S ALL GONE TITS UP (robyn-may.blogspot.com)

KazzyP
Member

Re: Confused

Hi Jukat

This is my first post as your post really touched a chord with me. I’m a little bit ahead of you. Diagnosed with Grade 2 Invasive Lobular. Had MRI and confirmation that it is one area about 6 cms big. CT scan shows it hasn’t spread, thank goodness.

I am having a simple mastectomy and Sentinel Node biopsy, no reconstruction on Friday. Due to the position, my only option for reconstruction was a L D Flap and I felt it was a step too far for me. I don’t know if I will need further treatment afterwards and am praying I can avoid chemo but know that I have no real control over the next steps.

So far, I think I am coping well, but sometimes it just doesn’t feel real… like Im on the outside and simply going through the motions. Maybe this is my way of coping! Im scared I will have a total melt down after the surgery and can’t imagine what I am going to look like.

Lets hope that like many others on here we master whatever is thrown our way and come out the other side stronger than ever! 😊

Evie-S
Community Champion

Re: Confused

@Jukat - Julia, just checking to see how you are doing and to thank you for your lovely kind words. You said the team were having a meeting about you on Tuesday but have they said when you will get your results and plan? Have you bought yourself some nice treats? Sending hugs, Evie xx

Eglis
Member

Re: Confused

Hello Julia

The waiting is tough ...remember it oh so well. 
I think it’s great that cases are discussed with several doctors..... it’s reassuring to have a combined opinion.  Will continue keeping my fingers crossed for you.

Really recommend yoga with Adrienne on you tube.  It really helped to distract me..... or Rik Bhullar walking workout also enabled me to switch my mind off for a little bit.  Not sure if I‘ve recommended them already.  

Your comment about being brave and strong really touched me ...... we are all brave and strong even though at times we don’t know it...it’s just a question of finding the right technique for you.  My husband wanted to hide it but I felt we had to ‚embrace the unwelcome guests, look them in the eye and send them packing‘.  We are on a journey we didn’t choose ...... hope you find some things to distract yourself and you don’t have to wait too long for results.

Big hugs, good luck..... and lots of positive vibes.

Jukat
Member

Re: Confused

@Evie-S and @Eglis ...thank you so much ladies for your replies.

Between the two of you I have received confirmation that this is all normal.

The doctor's are having a meeting about me today 😕 to determine if every bit of it has been detected before they decide on lumpectomy/mastectomy. The waiting is awful because if I don't keep myself distracted my mind is in overdrive! How long does all this take? I keep telling people that I reckon it's just 'a mild case' and will be like having a tooth out 😁 And...I have been spending money like a mad woman!! I am usually very careful but if I see something I am buying it!!

I hope you ladies are both very well...you are both so strong and brave.

Much love to you.

Julia xx

Eglis
Member

Re: Confused

@Jukat 

I have forgotten to say..... yes I think it’s normal to feel alone....take whatever love, comfort you can from other people.  I asked friends/family to send me positive vibes....it helped me mentally enormously.

Re: disliking your breast.....yes, totally.  I suddenly took a dislike to mine..... then totally dissociated myself from them and talked about them as if they didn’t belong to me.  Once I recovered from the op and radiotherapy I decided Ineeded to learn to ‚relove‘ them.  Am so happy to still have them even though they have been ravaged from treatment.  I look every morning....some days I think ‚heh I‘m lucky and they look really good‘ and someways ‚urghhh whathappened?!‘.  
it’s all a process and it all takes time and effort...... everything becomes normal.

Big hug to you.

Eglis
Member

Re: Confused

@Jukat Can totally relate to everything you wrote and totally agree with @Evie-S  words.

I was diagnosed last October during routine screening mammogram.  Thank goodness I had the mammogram.

I too was very confused.... wasn’t ill, no previous signs, also felt someone must have made a mistake even though I had seen it for myself on MRI pictures and scan. I was always double checking it was my name on the screen and not someone else’s!
Initially I was told probably a lumpectomy and possibly no radiotherapy.  Unfortunately another tumor was identified which resulted in radiotherapy and tamoxifen but still many things to be thankful for.

9 months on.... how time has flown.... and I still can’t quite believe it.

The confusion will probably stay for a while..... take each day as it comes.  My approach was always to identify my best and worse case scenario.....the goal posts often changed bit it helped me to eliminate worries that I didn’t need to have and stop my mind going into overdrive.  
Reach out if it helps.  Be kind to yourself and wishing you all the best.  Fingers crossed that your treatment plan is minimal.

Evie-S
Community Champion

Re: Confused

Hi @Jukat - I first of all wanted to say that I thought your message was very clear, and you summed up exactly what lots of others, including me, feel about a diagnosis of BC. By way of background, my diagnosis and treatment were about about 4 years ago, but I can really relate to what you describe. So to answer one of your questions, yes it is very normal to feel a huge mix of emotions, certainly all the ones you describe. My immediate reaction to the diagnosis was that I wanted to run away but I knew the diagnosis would follow me wherever I went, so that wasn’t going to work. I also kept re-reading my pathology report as I too was convinced my doctor had made a mistake.

I’m not sure of the answer to your question about radiotherapy - you might want to give the nurses on here a call on Monday and ask, their number is at the top of the page, or alternatively give your hospital breast care nurse a call. From what I have read it seems like the majority of people have radiotherapy but all treatments are tailored to the individual. I had chemo and radiotherapy, so if you have any questions I’m happy to answer them.

It’s great that you have reached out to this forum, and have been able to be honest. Everyone on here reading your message will totally understand without you needing to explain. This forum was a lifeline to me during treatment. Sending you a hug and strength as you go forward to kick butt! Evie xx

Jukat
Member

Confused

Hi...I found this website and the information is really helpful. Sometimes you feel quite alone and wonder if you are reacting normally to your situation 😊

I can only apologise for the garbled rambling message I am about to leave. My head is so full of 'stuff' it's coming out in no sensible order!

I was diagnosed 3 days ago with invasive lobular cancer Grade 2, which was picked up on my first screening mammogram. I had an MRI the day after to see if it is anywhere else in the breast/s that wasn't picked up on that screening before they decide on a lumpectomy or mastectomy. I still can't quite believe it and think they have made a mistake because I feel fine....but then that's a positive in itself isn't it....going into something like this when you feel well enough to fight it?

I know everyone's experience is different but I want to ask a couple of questions. Does everyone have to have radiotherapy as well as surgery or is it possible to skate through this with just a lumpectomy? I have visions of being home the same day...back to work the week after and that's that....done and dusted! I have no idea if I am under or over playing this 🙄

Also does anyone else look at their breast and hate it? I look at mine and feel like its some parasite hanging off my body right now and don't get me wrong...I love my knockers but I am so annoyed at the left one for throwing this spanner in the works!

Really looking for some sort of assurance that all this is normal....to feel ok, angry, upset, distracted and frightened.

Hope I can march with all you beautiful women to kick this things butt!! xxx