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Frightened to look

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Re: Frightened to look

Thank you both so much, have ordered the book and will try your exercise tip as often as possible! So appreciate all your support xxx

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Re: Frightened to look

Hi Helen

I was wondering how you were getting on and I’m so glad that your news was good. As Jane has said just take one day at a time and you will get through it and we will be here for you. You have already been through two invasive surgeries and done so well. I think the lymph node removal leaves you with a weird feeling underarm, sore but numb at the same time! One little exercise tip I was given was to reach up and touch the door frame every time you leave a room! Sounds a bit strange but it helps to stretch the arm and I still do it from time to time, when my arm and shoulder feel a bit tight.

Love Francine x

 

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Re: Frightened to look

Hi Helen,

That is good news, as it was better than you feared. News like that gives us all a boost. We really do feel we are walking beside you, supporting you every step of the way.

The brilliant book- ' Tea and chemo'- which I got from Amazon, was really helpful. Lots of advice and the author was so positive. One of the things I always remember was when her father-in-law said ' A to B, B to C, C to D', so basically just take a step at a time, and you will get there, just like we did.

 

Lots of love

Jane xxx

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Re: Frightened to look

Hello lovely new friends, just thought I would update you on the results of my Axillary lymph node removal - only 3 nodes were positive out of 17 removed, which was better news than I was expecting. My drain came out last Tuesday and I am feeling much more myself. My arm feels very odd, sort of numb but painful at the same time, but the surgeon did warn me that was likely. I am doing my exercises which are slowly getting easier.
So next steps are 4-6 months of chemo followed by radiotherapy, I am waiting for my appointment with the oncologist to confirm the details but think I will be starting in July. I don’t know if this means I can send my children back to school at some point this year or whether we will need to completely isolate until I am less vulnerable, I guess the oncologist will be able to advise me.

I hope you and your loved ones are keeping safe and well, very best wishes to you all, Helen xx

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Re: Frightened to look

Hi Helen

Never apologise for not replying to posts quickly. You have so much on your plate, which would be difficult enough in normal times but even worse with COVID. My daughter was in her 30s when I was diagnosed and worried from a distance, in London. But I think you’ll find that other ladies on the forum with younger children had similarly experiences to yourself. Some seemed to withdraw from the situation, others were upset and younger ones didn’t really understand what was going on. The only thing I can say is that children are remarkably resilient and seem to come to terms with things in their own way, in time. Your little one must find things difficult and it must be extremely challenging for you. 

I wish you lots of luck for your surgery on Tuesday. Thank goodness you didn’t have to wait any longer, as it’s slow torture just waiting I think. I had 3 lumpectomies before the Mx and each time it was 2 weeks before I got the results. I also had a seroma after my Mx which was drained a couple of times. As Sam said, they sometimes have a habit of coming back but your body will reabsorb  it eventually. 

Check in again when you feel like it. 

Love Francine x

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Re: Frightened to look

Thanks Sam, I do have four cats too(!) but they are very little trouble compared to the kids...

Thanks too for info re. exercises, how are you finding your radiotherapy?
xxx

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Re: Frightened to look

Hi Helen

Sorry you've been having a torrid time of it...makes me glad that I only have stupid cats! Do hope your kids come round to the idea of Mums surgery round 2 soon.

Hope all goes well Tuesday and as you say an upside is that the seroma will disappear - be warned though it may well come back again (they usually do & mine did).

Make the most of that garden today & tomorrow, and possibly a blessing that it will be arctic temeratures when you have your surgery so you won't be hankering for any weed pulling.  And don't be surprised when those arm exercises are even more challenging post your 2nd surgery...its hard going but it does get easier, my mobility is great nearly 2 months posy node clearance.

Let us know how you get on when you can.

Sam X

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Re: Frightened to look

Thank you Jane, I so appreciate all the warmth and care shown by you and everyone else on here, it has made such a difference to me xxx

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Re: Frightened to look

Hi Francine, thanks for your message and sorry I went a bit quiet for a time, had a very challenging week - my family reacting in different ways to the news of another op - my teenage daughter who has been an incredible support to me was distraught at the news. My 19 year old son is totally withdrawn and my 7 year old son who has complex additional needs has been horrendously behaved. All totally understandable but it has meant I haven’t rested much and stress levels have been very high. Just to add to that I had to complete the Tribunal paperwork by today for my son’s appeal for a specialist school placement, unbelievable that a Local Authority would put a family through this at such a difficult time with everything else going on, but it seems par for the course. Thank you Bucks County Council!

Anyway, apologies for droning on, I have just got a date for my lymph node removal of next Tuesday, will be glad to get on with it! Am a bit concerned that my seroma is bigger, I do feel like I have a water balloon on my chest, but I guess that will all go on Tuesday. 

Hope you are enjoying your garden in the sunshine, my garden is my therapy, pottering around looking at the roses and pulling up the weeds.

Thanks for letting me offload, made me feel better.

Very best wishes, Xxx

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Re: Frightened to look

Hi Helen

Just wondering how you are doing? Trying to catch up with some gardening here in windy Lincolnshire. Where abouts do you live?

Love Francine x

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Re: Frightened to look

Hi Helen,

As Francine said, we have all had those night time wobbles. But now, we have got through it and are so much stronger for it, and one day, you will be like this, giving support to new ladies who need it.

I was worried at the time of diagnosis that my happy, carefree approach to life was gone for ever, but, honestly, I appreciate life and my loved ones more. 

Also, remember that the advances in breast cancer treatment are just phenomenal in the last few years. I was informed that a couple of the drugs in my chemo had been approved only very recently, and I consider myself fortunate that I was able to be treated with them.

Very best wishes

Jane 

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Re: Frightened to look

Night time wobbles, know all about those, as I’m sure lots of ladies do as well.  It’s quite common to see people posting and replying during the night so feel free! Everything seems worse at night I think and your mind goes into overdrive.  Goodness knows how many hours of TV I watched on catch up on my phone or iPad.
It’s natural for you to be going through the ‘what if’ scenarios and I would be very surprised if anyone diagnosed with BC didn’t wonder at some point how long it had been there for before diagnosis. Some tumours are fast growing and some are not so it’s a question that probably can’t be answered. You sound like a very positive person and I’m sure you will find your own way of coping and taking each day at a time 

Take care

Love Francine x

 

 

i

 

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Re: Frightened to look

Thank you Sam, and everyone else, for all the replies and hugs. Had a huge wobble last night, lay awake most of the night thinking worst case scenarios, am sure everyone has hit this stage at some point. The other shock was that the tumour was huge, much bigger than the 3cm they had thought, it was 10cm. So I am wondering just how long it has been there, I had a recall to a routine mammogram 2 years ago but it was decided that it was just calcifications and cysts, and no biopsies done. 

Anyway you could go mad thinking ‘what if’ and I know it isn’t helpful, so need to just try to look forward and get through this as best I can, just as you have all done.

Thank you for all the support, it really does make a huge difference 🥰

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Re: Frightened to look

Helen

Afraid I don't know re why the scans didn't pick up the node involvement - I also had CT/MRI scans throughout treatment and can't believe the node involvement just happened in a very short time.  Am sure there's some bright people on here who may know?

I had IDC ER+ And also inflammatory BC so had chemo first to stop the cancer in its tracks which worked (shrunk but didn't eradicate lumps).  Had a few challenges with the chemo but nothing significant, in fact I found it better than surgery in that there's a rhythm that you can work around of when you need a duvet day, when you've got constipation etc. The fact that you have a good week and half on a 3 weekly cycle meant I could do stuff whereas it takes longer post surgery recovery to get back to that week and half 'normality'...I am very impatient and want to be able to do what I physically could before diagnosis!

It was always planned that I would have rads due to the type of cancer so the nodes were irrelevant in that respect.  I was told at the beginning (when diagnosed) what the full plan for treatment was, with expected timeframes and would have thought that your oncologist would be able to do the same for you or at least explain why they can't.

Sam X

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Re: Frightened to look

Thanks Sam, that’s the bit I don’t understand in that I had an MRI and then a full PET/CT scan a few weeks ago that seemed clear - so why did it not pick up the nodes? Obviously I should have asked that today, I was a bit shocked I think.

So you are now having radiotherapy, will you have chemo too? No one has mentioned radiotherapy yet but I guess it depends on how many nodes are affected?

Thanks again xxx

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Re: Frightened to look

 Hi Helen,

I am sorry your news wasn't what you hoped for. 

My case wasn't exactly like yours, in that I had chemo before my mastectomy, to shrink my large tumour. In some ways I am glad I had it that way round. By the half way scan, after three chemo cycles, my tumour was a third of the original size, and by the end of the sixth chemo it had completely gone! ( I had to have a mastectomy though as I had a large area of DCIS, ( precancer), which the chemo doesn't work on). But the point I am making is that, although it can be challenging some days, chemo is great at removing the cancer, and I felt so reassured that I had it. I would just advise you to be kind to yourself during it. Like you, I am a very positive person, and once I accepted that the chemo would make me feel exhausted for a few days, but I would recover and have several good days before the next cycle, it all became very doable. I was also so fit just before diagnosis, and I didn't like feeling weak. But remind yourself that you will get back to normal, and now I am exercising and back to my old energy.

I would accept anything they offer. I had the ' belt and braces' of radiotherapy after the mastectomy, and psychologically I feel, surely that must have got rid of any rogue cells.

I wish you the very best of luck. As the other ladies on here have said, so many of us get through this, and you will too! I remember when I was first diagnosed, I felt so envious of my friends, thinking, why me? But when I came on this forum I realised that it affects so many women, but the VAST majority realise it's a blip in their lives, and, if anything, they appreciate life even more afterwards

Lots of love

Jane xxx

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Re: Frightened to look

Helen

Well that's **bleep** news. On the plus side I've been through the same and its doable - particularly helps with that positive attitude.  I was extremely p1ssed off when I found out that I needed full node clearance as had been due to have frozen section with mx which (and to this day am not altogether sure why!) didnt happen and would have meant it could all be done in one op.

On the plus side you know what to expect re surgery as its a similar process, just more challenging re recovery time - and that's is really annoying just when you think you're recovering well post mx and then you're back to square one.

Not sure if its the same with you but my boyfriend (who is more bothered with this whole cancer malarkey than I am re longevity) insisted, once they found out that it had spread to nodes (and my nodes had ruptured showing that the cancer was quite determined - not sure if you're the same?) that I have a full body CT scan to check it hadn't spread elsewhere - you may want to see if you can get the same for peace of mind?

Good luck and any questions you know where I am - nowadays either moisturising like a loon (its day 2 of microwaving) or doing bl00dy arm exercises - its a wonder I get time to eat & sleep.

Sam X

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Re: Frightened to look

Hi Helen

Sorry to hear your results weren’t great and further surgery is required. I do like your attitude. Optimistic? Deluded? I don’t think it matters so long as you get yourself through the treatments. I opted for deluded I guess - I just accepted it all had to be done and handed myself over to the team and asked as few questions as possible. I knew I’d live in a permanent state of anxiety if I knew all the details. My goal was the same as yours - just get those b*****s out of my body. Once that was sorted, then I would ask my questions. It worked for me.

There will be quite a few hurdles to get past and quite a few uncertainties but I think the sheer number of women here who have got through it all must be proof that it’s all doable. We all find our own ways. Just don’t be surprised if sometimes you can’t summon up that ‘old self.’ It’s a massive emotional trauma as well as the physical traumas which are likened to a rollercoaster so be gentle with yourself. We all change in little and/or major ways and find our new normal, as you’ll discover. The biggest change in me was the realisation that it’s ok to ask for help and how kind and generous many people are.

I wish you all the best for your treatment and hope you get an easy ride on the rollercoaster.

Jan xx

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Re: Frightened to look

Hi Helen. 

Sorry to hear that your news wasn’t great. Fortunately I didn’t have node involvement although it was a Grade 3 invasive situation. Think they just managed to catch it in time. I didn’t opt for chemo as the onc said it was very borderline, taking my age in to account. However, a year later I had a reoccurrence under the nipple and had to have a Mx. I often wonder if I should have had chemo in the first place, so I completely understand how you feel about it. 

I’m sure there will be ladies who have had a node clearance and chemo reply to you and support you. It’s so good to talk to people who have been through similar things and you will get great advice.

Take care  

Francine x

 

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Re: Frightened to look

Hello new friends, hope you are all doing ok and the sun is shining on you.

Not great news today for me re. pathology results, the sentinel node was positive so am going back in the next couple of weeks for full lymph node removal. Likely to have chemo after that which I almost welcome, just want to clear every part of me from any cancer cells that might be lurking.

Feeling a bit gutted, I am a pretty optimistic (or is that deluded?!) person so thought I had done the hard bit, and was feeling so much more like my old self today.  Nevertheless I know lots of you have been through this already so this is just another hurdle to get past.

Sending you all very best wishes xxx

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Re: Frightened to look

Hi Helen

Wishing you all the best for your results tomorrow. It’s a scary time waiting. I hated having my appts in the late afternoon as I sat all day sweating about it. I’m sure you’ll find the breast team very understanding about your scar worries and they will help you to get through it. Do you have anyone going with you? I got into the habit of writing down my questions before the appt because everything just went out of my head as soon as I got there, your brain just wants to switch off I think. 

Keep us ladies posted on how you get on . We’ve all been through it before so we know just what it’s like for you, but especially with all this COVID stuff going on.

Love Francine x

 

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Re: Frightened to look

Hi Francine, thanks I feel more myself, just dreading results tomorrow. Think my scar will be similar, it seems huge at the moment although I am only viewing small areas at a time, still not been brave enough to look in the mirror at the whole thing. Will get nurse to check it while I’m there tomorrow.

Hope your cat has forgiven you!
Best, Helen xxx

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Re: Frightened to look

Hi Helen

How are you doing? Excitement of the day here was getting a tic off my cat Zak! Joint effort, daughter held him and I wielded the tweezers, he was not very impressed with it all! Ah well, strange times  It’s a very strange numb but not numb feeling isn’t it  My no boob side still feels like that after nearly 2 years  I had 3 lumpectomies on it and then the Mx so guess the nerves were well and truly trashed  I have quite a large scar, as there was a lot of boob to remove! It was quite some time before I started to massage/moisturise it  I wanted to wait for the skin to heal well so it wasn’t irritated  I used Bio Oil to start with, which was recommended to me, but didn’t really like it as it felt very oily (!)  I ended up with Aveeno moisturiser which I really liked   Some people like E45 so everyone is different. 

Regarding future reconstruction, I didn’t op for this but various ladies on this site have said not to have a silicone implant done until you’ve completed radiotherapy, if you are having this, as it can cause the implant to ‘harden’   

Take care, Francine 💕

 

l

 

 

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Re: Frightened to look

Thank you Sam, so grateful xxx

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Helen

I would double check with your BCN but I started once the bandages had come off at 2 weeks post surgery, its helped get some of the scabs off (nice!) and will also aid scar recovery - I'm actually moisturising belly more as that will be my boob at some point and the chest area (that I am moisturising all the same) will be non existent.  But you never know what will happen in this mad world...

Am sure your BCN will anyway but I'd suggest non perfumed organic (or at least free of chemical nasties) moisturiser when you start, just to be on the safe side.

I also had to (again really lovely thought) peel some of the glue off as my surgeon had been quite liberal with the glue gun, she'd actually glued the drain to me which made removal of drain more interesting. Again did this cautiously and only after 2 wks post surgery.

I also found it uselful to take pictures of wound spot quite regularly so I could prove to myself that either things were getting better or that problems had occurred.  I got seromas both times (still have), infections and after 2nd surgery a leaky seroma...all more annoying than anything else.

BTW ask away...happy to help (as are all on here) and its not like I have any parties to attend...

Sam X

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Re: Frightened to look

Thanks Sam, yes I have that feeling of being numb but not numb. Just being glued and stitched with no dressings has been really difficult as I feel I am not ready to look yet, it’s a good thing I am short-sighted! 

Can I ask when you started moisturising? I guess I have to wait until much more healed.

Thanks again xx

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Re: Frightened to look

Hi Helen

I'm 7 weeks post node clearance and 11 weeks post mx and am healing well (I'd be healing better if I wasn't an impatient Percy though!).

I am a stoic northerner so wasn't as concerned as some about having no boob but still was somewhat tentative about looking, luckily for me I had some sturdy industrial grade plasters on so didn't really get a peek till 2 weeks after, was happy that it looked like tidy surgery.  The one thing that bothered me (and still does to a certain extent) is the feeling in the chest/arm area when I touch...I really had to force myself to moisturise the scar in the beginning, it just felt (feels) so odd being numb yet not numb.  I do think this feeling improves a little every day but is still disconcerting but then I guess we all have our own feelings emotionally and also to the physical aspects of this bl00dy disease eh?

Anyway I hope you recover well and get what you need in the future.  Worth adding that despite not being bothered about being one boobed I will be having DIEP at some point (post cv!) just to make life easier re being symmetrical (wearing clothes mainly without thinking about softies/prosthetics).

Good luck

Sam

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Thank you Jane, really appreciate your message. I wore a bra for the first time today with the softie the hospital gave me (apparently I should have been wearing it ever since the op but didn’t get that info). To be honest I have felt so sore I don’t think I could have done  that anyway. Psychologically I did feel better looking at myself in the mirror this morning, it hit me so hard getting dressed after the op and seeing how obvious it was that I was flat on one side.

I haven’t made my mind up about reconstruction, which will be delayed anyway, but wish you all the best with yours, hope you don’t have to wait too long.

Very best wishes, Helen xx

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Re: Frightened to look

Dear Helen,

Reading your post reminded me exactly how I felt around the time of my mastectomy in October 2017. I felt completely traumatised at the thought of it, but the lovely ladies on here really helped me to work through the emotions.

The first time I looked, I just kind of ' braced myself' and , I am unsure if you are intending to have a reconstruction, but I want to, so ladies on here said to remember it is only temporary. Also the silicone prosthesis that you get six weeks after the operation is absolutely amazing. You are even given a stick on nipple, and no-one would be able to tell which one was the false breast when I am wearing clothes! 

Having said that, if you are intending to not have a reconstruction, there is a very supportive Facebook Group called Flat Friends which will be helpful.

Anyway, going back to how I braced myself to look, it really wasn't as bad as I feared. It was a neat incision, and it wasn't as horrific as I had imagined. One of my friends said to me, shortly after, ( in a caring way) ' the only person who is bothered about it is you', meaning that my family and friends were just thrilled that I was still around, and couldn't give two hoots about whether I had one breast or two. Then I also found it useful to think, hey, we are all different sizes and shapes. Very few women are completely happy about their bodies, but we are used to highlighting our ' best bits' and disguising our ' worst bits'. So, I try to look at it that way.

I was actually meant to have my reconstruction next month but it has been delayed due to the coronavirus. But I hope one day, I will be the proud owner of a new left breast!

 

Best wishes

Jane xxx

 

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Re: Frightened to look

You are very welcome Helen. I can still remember how I felt after all my ops. The glue will gradually peel off as days go by and is generally mostly gone by day 10. I think it’s a superior closing method to stitches personally, having had both. I could have cried for England when I first came out of hospital and it just happened at the oddest times. I could have slapped all the people telling me to stay positive! Unless you’ve been through the experience no one can understand how you feel, no matter how well they mean. Just let yourself feel sad when you do. Glad your daughter is helping you out. I gather you are younger than me, I’m 67 and my daughter is 35. One thing is for sure, you will really find out who your friends are during your journey and you may be in for a surprise. Some friends just can’t deal with it very well and complete strangers can be amazingly kind. The ladies on this forum are an incredible support and you can always have a moan and a vent without any worries. I still talk to several of them that we’re diagnosed about the same time as me and we can always have a laugh and a virtual hug on the not so good days. 

Love Francine 💕

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Re: Frightened to look

Thank you so much Francine. I have just had a (sort of) shower, averted my eyes although did obviously see a bit of the scar so had a few tears then. Major struggle to get new support stockings on, my lovely teenage daughter was a big help. Now feeling a bit more myself, haven’t had any codeine today which has cleared my head a bit.

Being able to reach out to you wonderful women on this forum has made all the difference in the world, especially at this difficult time when I have felt so isolated.

Thank you xx

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Re: Frightened to look

Hi Helen

 

Just wanted to reach out and give you a hug. What you are feeling is absolutely normal. You have very recently had a physical and emotional assault on your body and you need time to process it. I had a Mx in 2017, after 3 lumpectomies on the same breast. I also had glue and not stitches and it healed very well. At first the wound looked a bit scary and there was quite a bit of bruising. I am big breasted (H cup)  so it was a large incision. However,  you will heal quickly, amazing what the body can do. The most important thing is to rest when you need to, you will still have anaesthetic circulating so that can make you feel rubbish for days. Drink plenty of water and take painkillers regularly, even if you don’t think you need them, as they will help with the inflammation that surgery always causes. Start to do the first set of exercises very gently and don’t push yourself too hard. Remember whether you have one breast or two you are still you. 

Keep in touch, especially at this very difficult time. 

Love Francine 💕

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Frightened to look

Hello, had mastectomy yesterday, in at 7.30am and discharged at 12.30. Wound has been glued and has dissolvable stitches, no dressings of any kind. Am feeling very sore and emotional, and feel so scared to look at myself. Just wondered how you all coped with this, would be so grateful for any ideas that helped. There won’t be anyone checking my wound so I know I will have to look soon.

Thank you,

Helen