Feeling lost

[whitelily]

We are so hard on ourselves aren't we? As Clair says I don't think anyone expects us to go back to work any sooner it's just the pressure we put on ourselves. All of you take your time before rushing back to work and try to get yourselves in the best place you can be before returning as I said I rushed back to work and I shouldn't have it wasn't the right thing to do. Work will still be there take your time to get better and don't rush back x

[Cla46]

Jak, I did the same as you for 15 years before changing 🙂 I hope you get a phased return too and just be kind to yourself. I've had to lower my expectations so many times during this which also brings me down . I sure no one expects us to come back and be like we were ( except ourselves ) that's my biggest struggle and I'm hoping the counsellor can help me with that.
Definitely go out and do things it really does help the healing process and no one will judge at all
Xxxx

[jak60]

Hi Helena good to see you on this thread too! Thank you hug reciprocated x

[jak60]

Thank you Lily. I think it's amazing that you went back after chemo (I didn't have to have it thank goodness) but did like you end up back in hospital 3 days after surgery, for 4 days - staph infection- so that added to all the anxiety and recovery time. x jak

[whitelily]

Also Jak please don't feel that you can't go out in case you bump into people it is great to get out and get some fresh air it always makes me feel better when I have been on a long walk with the dog and is good for your mental health. Don't worry about what people may think fresh air will do you good and just getting out the house you have to do what you can to keep yourself on top especially when going through treatment even a little retail therapy is needed sometimes x

[whitelily]

Hi I am 4 years down the line and still have days when I struggle I just don't think people can ever understand unless they have been through it. I was eager to get back to work and went back within a fortnight of my chemo finishing I look back now and don't know how I did it my hair was only just growing back and I had been in hospital a month earlier having a blood transfusion having been very ill with neutropenia. I work within the NHS so am dealing with the public everyday I find I just put an act on and no one really knows how I am feeling. I still have days when fatigue is a problem and have side effects from tamoxifen and am waiting for further reconstruction surgery. Everyone thinks 4 years down the line you are fine but they just don't get it, also I hate that your private life is so publicly on display and everyone knows everything and thinks it's ok to discuss it all in front of other people. Some days you cope with it but others you don't and sometimes it can take you by surprise. Our lives have been changed for ever and it takes some adjusting to even years later especially when still going through surgery/ treatment and everyone else thinks you are long over it all! They will never understand x 

[jak60]

Thank you Clair you get it! I work with SEND children in a mainstream junior school so you get it double -time. First thing my BCN asked was what my job is: ''You won't be able to work, it's a front-line job like nursing.'' which made me feel better as I was able to tell others what she'd said.
You can't hide from children can you! The trouble with acting new is that I'm a team leader so it's a bit tricky! xxx Jak

[Cla46]

Hello Jak ,
I totally get how you feel, it's a massive roller coaster ride that always seems to twist into another direction just when you think your getting somewhere. I thought I was doing really well up until treatment finished but I'm really not. Some days are better than others but I just can't get my head around what's happened and how much it's changed me. I was a confident person before this.
I saw my gp today and he's given me some sleeping pills as I just can't sleep at the moment and also strongly recommend counselling which is something I've tried to avoid up until now . I've contacted someone today though so we'll see how it goes.
I felt very guilty about being off work and desperately wanted to get back but as time has gone on I've realised that I wouldn't of been able to cope going back at that time. I was planning to go back right after my rads finished and didn't realise just how exhausted I'd be mentally and physically . I'm terrible at being patient and taking time to recover but I've had to be.
I'm going back to work on a phased return 2nd week of January and am going to take it day by day. I love my job it's in a special needs school and I know I've missed lots of changes and panicked about catching up then a lovely work friend said just act as if your new and go from there. Day by day.
Lv clair xxxxx

[jak60]

Sorry for typo and unsigned pressed post too soon!

jak60 xx

[jak60]

Hi Ladies,

Just found this thread so thought I'd join in if anyone is still reading? Firstly, I hope you are all finding ways to cope and thank you for this thread...

I'm definately 'feeling lost' and depression is a big factor in my life (previously fairly on a level due to meds and now very unsettled). But the thing I struggle with is, when I feel up to going anywhere, the feeling that I might bump into someone or 'be seen' and people will think I should be at work if I can go out. I also have the feeling that people expect me to be feeling OK between treatments. As I approach rads and hormones the spectre of never feeling well enough to return to work haunts me. As does the longer I'm off the harder it will be to return. I want to be able to feel fit and healthy so that I can give my best but that seems further and further away. I've just been signed off for another  month which will take me to a week post rads and haven't started hormones yet so may not to be fit by then. My boss has said he doesn't care if it takes until September - just get fixed (lovely but doesn't stop the guilt!). Then there's the who's covering my job worry which makes me want to get back ASAP. Gaah it's a vicious circle.

Anyway thank you again for giving me space to get that off my chest! I would like to hear how other people have coped with the prospect of when to return/2 to work

[Cla46]

I wear a padded bra so you can't really tell unless it's sliding over to the other side!!
My surgeon first said to me" you have breast cancer but it's ok because Dcis is the best one to have" ..
My oncologist was really good but one of the Bc nurses is very dismissive about it but then I expect she has seen some ladies go through terrible times.
Its just the thought it's been here in me and could pop up anywhere at anytime and next time I might not be so lucky to find it that early. I'm sure the tamoxifen isn't helping with my mood swings but I'm going back to the Dr to have a chat
lv to you all xxxxxx

[Dizzybee]

I don't find people stare, it's more of a quick sidelong look and then they definitely don't look again, it's like curiosity just gets the better of them for a second, then they're embarrassed. Probably more so when they realise that they can tell...it must be so easier when it's the left one which is undersized because that's where the damn pockets get put! Though maybe that just draws attention to it...I am so looking forward to the reduction surgery to sort it out.

My oncologist called my DCIS a precancer and I just wanted to smack him. This thing has taken a wrecking ball to my life, and there's a way to go yet, don't dismiss it as if it's nothing.

[Cla46]

Old dawn :-D. Not at all....
We all need humour to get through this I thought it was very funny and it brightened my day xxx

[OldDawn63]

Ladies - I hope nobody was offended by my post but if they were, I apologise. I didn't mean any offence and understand that what you have been through is traumatic to say the least, particularly Whitelily. I know this could happen to me in the future, I just haven't got that far in my journey yet. To have other people pitying you and/ or staring at your breasts when you are trying to get back to some semblance of normality must be so annoying. But I sometimes think that a bit of humour, such as the brooch, can help diffuse the situation (it certainly helps where I work - a requirement for a warped sense of humour should be written into the job description). Please accept some hugs by way of an apology if any offence was caused. 💝

[whitelily]

Thanks Cla46 I think I am going to speak to my manager tomorrow as otherwise it is going to get to the point where I can no longer deal with it. It doesn't help that my manager is related to this particular person but she should deal with it confidentially x

[OldDawn63]

Hi ladies, I'm still undergoing treatment (last chemotherapy next week, expect to have operation in January) but will be in the same position as you when I go back to work. I couldn't help noticing your posts about others' reactions, and thought you might like to see this which I came across when looking for Christmas presents: 

http://www.notonthehighstreet.com/aliceshieldsceramics/product/earthenware-stop-looking-at-my-tits-b...

I'm definitely going to order one after I've had my operation (if there are any left...).

[Cla46]

Sending you love WhiteLily xx. Is there a trusted person who you could talk to at work so they can support you? I'm going to.talk to my line manager before I go back just so they can let the team I work with know I just want to carry on as normal but I'll just have to wait and see xx

[whitelily]

Hi Lily thanks. I think I will say something next time anyone brings the subject up, as you say how would they like it if it was them, it's never likely to be them though that's the problem. I also have lymphoedema and that is enough just trying to deal with that. Thanks for listening x

[Lily59]

Hi whitelily,

I'm sorry you are still having to have surgery, it must be very difficult, especially when you have to put up with insensitive people at work. I don't know why they would think it's o.k. to question you about such personal things in front of others! I wonder how they would feel if you did it to them - perhaps you should try it! It's so sad and wrong that you have to put up with this. Do you feel strong enough to speak to them about it and ask them not to discuss it at work?  I hope your surgery goes well - take care and come and talk on here when you can xx sending you a hug xx Lily

[whitelily]

Hi ladies I agree with every one of you, we are all in the club that no one wants to be in and no one understands unless they are in it! I am 4 years on from diagnosis and treatment but still going through surgery as I had a failed reconstruction. Finding it more and more difficult to go to work as I am very conscious of being lopsided whilst waiting for further surgery. I am not going to the Xmas do and as you say people just expect you to be fine 4 years on even though I am on tamoxifen and waiting for my 5th operation. Life can never be the same again and people just don't understand. At work when I am in the office people think you are fine about talking publicly about reconstruction etc and we share an office with another team so everyone is listening. Some days I just want to scream and can't wait for my next surgery because at least I will get away from work for a while.  It does become increasingly hard to have a smile on your face all the time and everyone asking are you ok? You just say that you are because it's easier than explaining x

[Cla46]

Thank you Poppy, I'll give it a go xx

[Lily59]

Thank you poppyj! Good for you - that told them! xx Lily

[poppyj]

Hello everyone

I've been having this reaction for almost 3 years now - finally plucked up courage to say "I don't want your pity, just your understanding, and I don't want to bore you with details you won't want to hear, but thanks for asking".  Got a few shocked looks to begin with but finally people are starting to treat me the same way they did "before", and the amosphere is a lot easier now, to the extent that I don't turn down invitations so often and therefore have a bit more of a normal social life now that we've confronted the "elephant in the room". It certainly works for me, so just give it a try. Good luck.

[Lily59]

Hello Ladies,

Totally agree with you about other people's reactions. I get the quick check of the boob area when people are talking to me as well! It's so rude!!! Also feel the same as you Treeze when you say that people don't really want to know how you are. They ask and then you can see the glazed or embarrassed look come over their faces. Sometimes I feel like blurting out "well don't ask then!'. No wonder we all want to stay away from these situations! Never mind them - come and talk on here and we'll all support each other. Take care and be kind to yourselves xx Lily

[Cla46]

Thank goodness I'm not the only one, I totally get the sympathy looks and extra kindness I just can't deal with it so I've just pulled out of a few dos. I'm finding it difficult to cope with how I feel at the moment let alone other people I ethier cry or get cross!
The other thing I've noticed is that people often look at my boobs while talking to me to see if they can tell the difference 😄
I want to say do you want a proper look.
I honestly don't know how I'd manage without everyone's support on here. It can be so lonely in the outside world where no one really knows..... Thank you <3. Lv Clair xx

[Treeze]

I've tested people out for their reactions..before my ops and during chemo I was determined to present a positive image regardless and I think other people seem glad and almost relieved that they don't have to deal with upset, maybe years.Now I'm post surgery with just rads to go, its.presumed I'm over everything and feeling normal in body and mind.So if I'm asked how I am they wouldn't expect me to be less positive now or mention med side effects aches and pains etc..it confused them and makes me seem ungrateful..I can see on their faces.so the only place to talk is here.x

[Treeze]

Dizzybee..thank you..you've just said everything I'm thinking.xx

[Dizzybee]

Clair, I thought it was just me feeling like this. I've had things on this month that I agreed to go to a long time ago, Christmas lunches for groups that I go to, but I've had to make myself go, and then I've felt a bit like the spectre at the feast, the one everyone remembers to be kind to. I'll forever be poor Dawn. And my role is always to churn out the same stuff about treatment soon over, getting on with things, it'll be fine.

And really I'd rather stay home where it's safe and I'm allowed not to be relentlessly upbeat all the time. It doesn't help that I'm getting really self conscious about being lop sided, and a long time to go before any surgery to even things up.

It's only here that I can say these things, I am so grateful to have a place to talk to other women who have the same feelings. This is a life changing experience, I want to get the physical recovery finished with, but I don't think I will ever be the person I was.

[marydan]

Thank you ladies. Mary xx

[Cla46]

I'll be thinking of you Marydan good luck with your scans xx

[Lily59]

Hi Marydan,

I know what you mean about the aches and pains - you immediately think the worst now whereas before you wouldn't have worried about it half so much. We all seem to expect ourselves to present a cheerful face to the world, which is really difficult to maintain! 

I hope your scans go well and you get good news, and some help for your back pain. Best Wishes xx Lily

[Lily59]

Hi Ladybowler,

I'm glad you are being offered the counselling by your employer - how nice to hear they are so supportive. I really hope it helps you.

It's good to have the support of everyone on here as well as they all understand what we go through on a daily basis. We all have to struggle with fear, anxiety and uncertainty so it's not surprising we aren't full of the joys of spring all the time. Unfortunately other people don't understand what that feels like and there's no way to explain it to them. It can make you feel very isolated and lonely but on here you don't feel so alone. I have found it a great comfort and value you all very much. We will have good days and bad days but we are still here.  xx Lily

[Cla46]

Thank you for all your kind words <3. I really thought I'd just go.back to being the old me I've had to.put off going back to work and I get very frustrated with myself.
Maybe today is just a really bad day xxxx

[gbadger]

I was diagnosed in September 2012, two surgeries and 15 rounds of radiotherapy. I battled with Tamoxifen for three years and for the last year feel I am finally coming out the otherside. You have to give yourself time as here is no quick fix. I wish there was. I have returned to work but I did it too quickly. and it has been difficult. I wish I had taken longer off. We have become very aware of our mortality and want to rush "getting better". With the benefit of hindsight I would seek help from your doctor or breast cancer nurse. Do not put it off - do it now. I wish I had. 

Steph

[marydan]

Hello ladies,I am totally with you on the confidence front. I just feel terified about every ache/pain. I have tio have spinal mri and brain mri on the 19th dec. This is for the multiple sclerosis and I usually get a brain mri annually but spine is the first time.

I have a constant achy back and of course mind works overtime but I am sure it will settle.

The oncologist said I was very low risk cancer and the back ache is more than likely the tamoxifen. I have had issues with bowels since starting tamoxifen so feel oh is this the cancer. When does this stop.

On a whole, in front of everyone I am doing fine but underneath I am a wreck. Love to you all, Mary xx

[Lily59]

Hi Clair,

Just saw your post and wanted to let you know that I feel some of what you're feeling myself. It's very hard to process everything we've been through and I think it's difficult not to want to hide away at home where we feel safe. I find some simple everyday things hard to cope with and find I'm avoiding certain situations. Perhaps it's natural not to be on top form. We seem to think that we should get 'back to normal' as soon as possible, when in reality we've been through a huge life-changing illness, and should be giving ourselves a break. I think you have to allow yourself time to recover emotionally as well as physically, however long it takes. It is a kind of grieving for your old life, and takes time. Personally I find getting out for a walk helps; or doing some gardening or sewing is very therapeutic. Anything you enjoy doing helps.  I hope if you start to feel worse you will ask your G.P. for some help. I haven't yet but I will if I need to. Hope you start to feel better soon. xx Lily

[Cla46]

The last few weeks I've become more introverted and shut myself away from friends and family. I don't know who I am anymore!
Diagnosed in July with high grade Dcis, more found after biopsy then 2 lots of surgery, tamoxifen then 15 sessions of radiotherapy treatment that finished in November.
I once was a confident in control person now I've no idea. I know that I'm really lucky that everything was found early and that there are many people who are dealing with a lot worse I just can't seem to sort myself out.
All I want to do is sleep and hide away. I won't go anywhere unless my hubby is with me I've lost all my confidence, Please someone tell me this gets better.