Finding the new 'you'?

[NAZ]

Hugs to you bluesjenny, it's all hard at times isn't it ?
You are still there under all the rubble, but your body and brain, well they have been through a terrible trauma and that trauma can take some time to come to terms with.
The ' old ' you pre cancer, has gone and what has emerged, is a person who perhaps sees and thinks about things differently now ( I could be wrong?). This takes some adjustment and getting used it. You also need to give yourself time to grieve for all you have lost. I struggled so much with my changed body and felt very much as if I was somehow on the ' other side' after BC. No one could understand how it was and I still believe very few people have the empathy and understanding to know what we have been through.
Yes, you have suffered enough, so take each day as it comes and if you need to get angry or scream, do it...you may feel better for it xxx

[bluesjenny]

Hi songbird i was diagnosed in Dec 2012 had chemo 2 ops radio ! I was strong throughout ! Now i'm in remission i am struggling and you have nipped it in the bud that is exactly how i feel ! I want the old me back ! Not too much to ask is it ! Think i have suffered enoughxxxxxx

[Lucy_BCC]

Hi Catweasel
Welcome to the BCC forums where I am sure you will find support from others who understand just how you are feeling. In addition, our helpliners are on hand with practical and support for you on 0808 800 6000 so please feel free to call, lines are open 9-5 during the week and 10-2 Saturdays.

Here's a link to further support from BCC including our 'Someone like me' email and telephone service which you may find helpful as you can speak to someone who has had similar experiences to you for support:

http://www.breastcancercare.org.uk/breast-cancer-services

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk

Take care
Lucy BCC

[Catweasel]

Hi all. This is all new to me. I was diagnosed in March 2014 & had a full mastectomy, lymph node clearance, 4 rounds of chemo & 4 weeks radio. Have now been told I have osteopenia, so besides taking Letrozole am on calcium & Vit D3 tablets. I am not back at work yet though latest fit note runs out end of month, to be honest don't seem to be coping emotionally, all friends seem to have deserted (thinking everything over so I must be ok though as you all know that's not how it works). Have some group things coming up which I am told should be good to go on ( meet new people etc). Have been referred to a counsellor because of not coping, still trying to find the 'new me' and what is the new normal for me and my life in the future. I know I am lucky the cancer got picked up early in my annual mammogram, that's another thing we have the BRCA2 gene in the family but then the rest of last year passed in some sort of blur with one appointment after another. Now I'm trying to sort my head out with a view to return to work I guess as can't afford to just leave altogether (though that would be nice cos I haven't missed it or the people either really). That is causing sleepless nights even though it will be a long phased return & once back probably won't be as bad I seem to be making it. I have tried all sorts to help with sleep but the only thing that works is sleeping tablets unless someone has any other suggestions! Sorry that this is long but I needed to get things off my chest (only 1 left!) & my best friend just doesn't understand what I'm going through.xxx

[Jaye]

Thanks Seabreeze and Songbird for your replies - what lovely names you have both picked.

Good point about the blood levels, I will think about asking the doctor to check them.

As you say Seabreeze, it would be good i they did follow ups after rads are finished.  I felt very strange on the last day of rads as we weren't seen by anyone, you just walk out.   I did have a short clinic appointment with the consultant on day 7 of my rads but it would have been better to get that at the end of treatment.

Songbird - your comments regarding fatigue and anxiety, I think that can be half of the problem, I do agree, I think a lot of us seem to be suffering with coming to terms with all that has happened and the shock of it all.

I am 65 so at least I don't have the worry of trying to get back to work like a lot of you do.  I finished working just under a year before I was dx.  I had worked almost all my life except for a few years when I had my daughter so it was difficult retiring - you do feel strange, not having any structure to your life and then I was dx with bc at my regular screening last January so perhaps a lot of this is connected to the way I feel.   Too many changes in a short time, something I need to get my head around.

Hope you are all having a good weekend and wishing you all the best

Jaye x

[Seabreeze]

Hi Jayne, Naz and Songbird
Thank you for your last message Naz.
Jayne - I'm a few months behind you with fatigue and similar to Songbird found my iron level had dropped dramatically..mine was 5, I think normal is about 50 for a man and in the 40s for a woman. Got to the stage where I felt feeling dizzy lightheaded and nautious and turned out lack of oxygen in the blood...no wonder I couldn't walk, think and talk at the same time! As with Songbird taking ferrous fumarate and took steroids for a short time since low oxygen left me more open to virus which affected breathing. I had just been thinking it was side affects of radio....I do wonder whether blood tests should automatically be done earlier, particularly hearing others have had similar experiences.
Feeling more human now but still fatigued. Trying to engage mind for high level letter to work which needs to be pitched right...they told me one set of info weeks ago re phased return, which was reassuring, then upset the apple cart by saying ops sorry,we misinformed you....feel like they are so uncaring when I have given so much to the org before, covering 2 posts for a v long length of time to the detriment of everything bar the companies work.......grumble! Just because they have no principles of fairness! Not sure how disabilty act views misinformation (not being corrected for weeks) which has financial implications for me? All the bosses are male and I don't feel any of them are sticking their necks out even a mm to say hang on a minute chaps...and make a decision to help recognise past mega input. Why put me through more stress by making me write in....grghhh and they wonder why more women don't work for the org! It was one of this bosses who texted "hope u are well" whenI I had a chargrilled nip...let alone the rest!

Anyway, thank you for your messages, like Jayne said it helps just to know others understand this and I really appreciate that Songbird and Naz who are further along the journey provide comments and updates.
Thank you all
Seabreeze

[songbird68]

Hi Jaye, You've been through the mill with this, and I know what you mean about your mind running wild sometimes. My friends and family don't talk about it either, but I guess after a year I should have recovered!
I bet the tooth abcess was horrendous, glad you're over that! Especially on top of everything else. You must have felt like "What next??" That would have been the last straw for me. I hate any dental pain. Big hugs to you for pulling through:)
As Naz said in an earlier post re fatigue - have you had your iron levels checked?
I was fatigued and had a blood test. It gave me a 9, which is very low so I am on 3x day ferrous fumerate for 3 months. I am feeling much better now.
- Or fatigue/anxiety could be PTSD, something I expect most of us are suffering from in one degree or another.

Hope you are well and all is ok with you.
x x

[Jaye]

Hi all

I haven't posted for a little while but read the forum regularly and just noticed this thread which I can relate to a lot of things that have been said.

I finished rads in June and although I was lucky to escape chemo I became very tired a couple of weeks after finishing rads.   I also suffered a tooth abcess not long after and then a cold and cough which wouldn't go away for a while.  The fatigue has been really hard to deal with but I think I am now slowly starting to come out the other side but it's about 5 months since my rads finished.  I have been trying to go out walking daily and that is helping and now I seem to be able to go for a walk and not feel quite so exhausted as i was a few months back.

I've always been a bit of an anxious person and also finding it hard to come to terms with all that has happened this year and like all of you who have been dx with bc, my mind runs wild sometimes and I find it hard to move on.

It's good to come on the forum and realise I am not alone with my thoughts as family and friends never mention it now.

Thanks for reading and hope you are all ok

Jaye x

[songbird68]

Thank you skinnyminx:) Congratulations on 5years NED!

I know I'll get through this, we all will.

I seem to have been through a whole range of emotions. I've just hit the one marked angry:)
Sending my best wishes right back to you.
x x

[skinnyminx]

Hi songbird68

I think it's entirely understandable that you feel angry.  I have felt that too.  I hope you find a way to get through it all.

Sending you my best wishes.

[songbird68]

Hi I hope everyone is well:)
I'm sorry but I have to moan. When I'm with other people I feel like I'm just impersonating someone that I used to be.
I am so messed up since my dx and treatments back in August 2013. *cry*
Actually, I think I might be very angry. Angry that I can't be "carefree" anymore.

[jenny29]

Hi Seabreeze

I had rads but no chemo and was really, really tired. I cant remember exactly how long I took off work as it was some time ago but I went back part time initially. Then I prob went back FT a little too early and found it really tiring. It did gradually ease up a little but i was on tamoxifen, which probably contributed to ongoing tiredness.I think part of me either wanted or thought I should be getting back to normal but I learnt that it isnt about going back but about finding a different way forward.

Basically it can take longer than you think, so just be kind to yourself.

Try not to put pressure on yourself. Think about starting back at work gradually if its possible and dont rush.

[NAZ]

Hi Seabreeze how are you today?

You are not long out of treatment, so really very early days for you.

Just because you escaped chemo, doen't mean you should be back to work straight away. It can take some months for the mind and body to heal after something like this, so don't go rushing in if you don't feel A1.

Gentle steps each day is the way to recovery..

Jenny how are you? XXXX

[skinnyminx]

Hi Jenny - I've sent you a private message - interested in the post-treatment fatigue programme that you mentioned.

Best wishes. 

[Jenny065]

Hello Seabreeze,  sorry you are also so tires etc.  Naz, thanks for your kind words.

Me...  well I felt so lousy on Thurs i must of cried for about an hour,  anyway my lovely BCN has put me in touch with someone- I am so lucky- they are running a programme in conjunction with macmillan at a hospital nearby specifically dealing with the fatigue side of post cancer-think  it is the first in the country, so i had an appt last Monday, and have another on Fri 5 Dec( away in between for 10 days) then in New year, will hopefully be on a 6 week programme. I will try anything at the moment, I have had all the blood tests.also in the process of changing GP. had appt with new one on Friday, he is going to sort out all the transfer of notes etc, then arrange to see me again. so trying to be positive and tell myself that things can only get better in 2015.

Seabreeze, my OH thinks they took my only braincell out  when they did the first op. for once i think he is right. it is definitley very foggy in there. 

Naz I hope you are feeling brighter. 

This site is a life saver, at least everyone on here understands. 

Tonight i am doing something that i have not done for a very long time- babysitting overnight, we have the 10month one here- so her mum can go to a reunion with friends- she used to work for GWR- our local radio- hoping she has a good time- we certainly are. the little one is so happy and all smiles.

Huggles to you all jenny.x

[Seabreeze]

Hi Jenny and Naz,
Thought I'd join your little string if that's ok.
Wise worlds from Naz re getting tested for anaemia etc, I had wle and snb in June, radio Sept and get absolutely exhausted so much of time...was even feeling like my brain wasn't working in full gear - consultant said that was normal and should start feeling me 6 months ish after...is that what anyone else has been told? Anyway, me thinking it was all the side affects of radio, turns out I've lost so much iron I'm surprised i haven't been out licking rust off anything going! Then viruses and colds thriving given anaemia, bringing on asthma which has never really been a prob before. Now on steroids to try to kick the beast off! Maybe someone should open an oxygen bar - I'd go!
I narrowly escaped chemo( was highly oestrogen positive) so feel even more like i ought to be back to work etc...instead go for a walk and get wiped out. Anyone else similar? How long does this last?
Thank goodness not only one with fatigue...thanks for listening
Seabreeze (haha - if only - how about a seabreeze bar! - sea air on tap!) X

[NAZ]

Hi Jenny

What a long old road it is isn't it? Yes, you will sort yourself out my lovely, but as you know, it all takes time and that i think is the most frustrating part for survivors because  more often that not, we are not able to just bounce back and pick up where we left off.

Have you been to your GP re; your fatigue at all Jenny? Maybe have some bloods done check for anaemia or such like.

The emotional recovery can be long and hard. As you know, i am 5 years on from DX. Had been doing great for weeks, but got over tired, travelled miles for a 2 day work event, got overwhelmed with all my seemingly clever colleagues who have heaps of confidence, had to listen to them rattling on about all the courses they were doing etc and i thought 'what i have i been doing - oh i know dealing with my new life as a BC survivor' and cried on the train home!

You will  get there and you will reach that point of calm, but i can only describe the journey as a rollercoaster. up and down and not in a straight line cos our emotions are not designed that way.

Here if you want to chat ever.

Naz xxxxxx

[Jenny065]

Hello Ladies,  Hope you are all well and ok.  I am now 2 years from Dx and first op. and all clear, only my nipples to be tatooed on. I hit a very low patch just after last op -end march this year, had some counselling,and was plodding along nicely.  BUT... I feel as if I am back where I was. I get so very tired, and now it is making me emotional again. Will I ever sort myself out and find myself. old or new. and how much longer   is this journey..   is this how you all felt? 

Naz you sum it all up to melly. so guess I need to be patient.

Sorry for the winge, just totally fedup.  Thanks

As always sending bundles of warm huggles. Jenny. 

[NAZ]

Oh bless you melly. I can tell from reading your posts today that you are having a hard time of things. You are right, the after effects of BC are mentally exhausting and the road to recovery can be a long and bumpy one . I am five years post diagnosis now and it had been one hell of a journey what with one thing or another. Like you, I felt very down at times and it was hard to see light at the end of a long dark tunnel. At some point melly, things do get better, but it takes time. You are only one year post DX ? Please use this site as often as you need to ( I did and still do at times) but mostly like to offer some support to others these days. We have all been where you are now, so we can empathise with your feelings. The post surgery body thing is hard and I feel for you. One day at a time, that is best I find xxxxxxx

[melly04]

I can so relate to all you've said. I have changed too, I forget things and am so tired and can't keep up with my daughter. I have joint aches too. I am not having reconstruction after mastectomy and don't like my body. I have taken out my belly piercing as I don't expose my body anymore. I cover up as much as I can. Very mentally exhausting this illness! Xx

[Zuleika]

Sorry it's mindfulness in a frantic world

[Zuleika]

Naz, I wonder if you have considered mindfulness meditation ? I did a course at my local Maggie's centre, shortly after my mx and I'm thinking of doing another one. There's a book called mindfulness in a frantic work, which I'm still reading and I have an app on my phone.
It brings a sense of calm but needs a lot of practice. It sounds as if you need a different job, that means you are not putting your energy into others. Have you thought about a career outside, doing something with nature or animals ?, just a thought.
You've sent me very helpful posts in the past and I hope my tops help you. You have a great sense of empathy and understanding
Look after yourself xx

[ukulele]

HiHave you tried jigsaws, I was told they would help concentration and they have.
Trish

[Jenny065]

Hello Naz, and Skinnyminx,  So sorry that you are both feeling so mixed up. I'm only 18 months down the line but  it is as if you have said all the things I keep thinking and saying,  so you are not alone, I think the stages after all the treatment are as hard if not harder than the surgery and everything. I was doing fine, then suddenly it all hit me, and now I seem to get upset at the smallest thing. I've asked the same question, who am I, I'm not the old me, as no longer got 2 e cups. now have 2 size B very nice when dressed BUT thats where it ends. My GP and BCn suggested some counselling -been going for last 5 weeks. so maybe something for you to consider, mine is through McMillan, and she is very nice. think it is working, 

I am not back to the swimming yet ( cracked some ribs!) but have been going to a very gentle yoga class, that certainly calms and relaxes me, I would recommend it, but you need a good teacher, i go to a small studio, not at the main leisure centre.  or try a DVD at home,

Take Care and enjoy the sunshine.  and as always sending warm Huggles

Jenny. xx

[NAZ]

HI skinnymix

I messaged you back.

Naz

[skinnyminx]

Hi Naz

Hope you're having a good weekend.

I've sent you a private message.

[NAZ]

Ah Skinny, thanks for your reply, it does sound as though we are kind on the same wave length here and i am sighing a big sigh of relief!

The truth is, i feel as though i have felt every single emotion there is to feel on this journey so far and even after 5 years, i still wonder what an earth happened to me! Like you, i never in my wildest dreams, ever imagined that i would have to force myself to find positives in my life or find some kind of acceptance with my new body, it seems to take forever doesn't it? You ignore your flat chest, i ignore my reconstruction (was not mentally prepared for an implant for a replacement breast).

What type of work do you do now if you don't mind me asking? I used to be a school teacher, then i had children, then came BC. I would like something nice and calming for my brain (but not sure if such a job even exists!) will continue to search though.

I agree, a looming diagnosis date always sends my head into a spin. I question my existence, being and all sorts of mad things! I do the 'why me' thing, then get really angry that lots of women won't ever have to experience the traumas we have faced. I feel bitter at times, almost envious of women who live free of the worry of recurrance, of those who live outside of the cancer world. Of women who flaunt their natural cleavages in public and who can feel both breasts and those who are not scarred here there and everywhere.

I am not sure whether more frequent mammograms would help to reassure me or not really ( i get very stressed once the letter drops on the mat) so perhaps not.

I suppose what i am seeking is some calm from the storm, a calmer brain and in many ways, that is coming, but not fast enough i guess. It doesn't take much to set me off and this is something i need to work on.

I know i can't go back and i have no idea what lies ahead, so living for now seems to right thing to do, but at times this is hard, harder than i ever imagined, when i cant shave under my left arm or i have an itch which can't be scratched because the area is numb. I long to feel both breasts, to feel whole and complete, but know that will never happen, so no point going down that road! I get angry with those who have drawn a line under it all years ago, but for me, it is never really over, but more continuing to get used to the new me.

Thank you Skinny, you have helped loads just by posting stuff which i can totally relate to and understand.

Naz

[skinnyminx]

BTW - thank you for the article BCC Janet.  Useful for me too.

[skinnyminx]

Oh Naz - I could have written almost exactly the same post.  Not sure I have any tips but I do empathise.

I'm nearly 5 years post-diagnosis too (mid July) and as far as I know NED.  I'm still getting used to the new 'me'.  Just not something I expected to have to do.  I suppose that, early on, it's all about the surgery and treatment and concentrating on getting through that and staying alive.  Later on it's more about adjusting to all the new stuff - physical and mental.

You've been kind enough to post on a thread I opened about reconstruction.  I do sometimes wonder if we ever get used how our bodies look and feel post-surgery?  I haven't had a reconstruction and realise that I just tend to ignore the flat side of my chest, I have also gradually become more accepting of the appearance  but I still essentially hate how my chest now looks.

My confidence also took a massive knock with the cancer diagnosis.  My head often feels 'muzzy' and I am definitely slower on the uptake these days.  I look back to the job I was doing a few years back (full-time in a cut-throat corporate environment) and wonder how I ever did it!  It sounds like a good idea for you to look for a more relaxing job and I wish you luck with that.  I changed jobs 18 months ago and that has helped alleviate some of the fatigue. 

Yes, the fear of recurrence also lurks with me - especially around this time of year when memories of the sudden diagnosis are in my mind.  One thing that brings some reassurance is ensuring I will continue to have yearly mammograms after the 5-year point (something my geneticist is sorting for me), rather than just reverting to the NHS national screening programme (3-yearly mammograms).  Do you think you would gain some reassurance from having more frequent mammograms going forward or would it just feel more stressful?  Maybe this is not relevant (can't remember if you've had double recon).  If you wanted it, could you arrange more frequent screening?  (Perhaps you already have it in place?) 

Don't know where you are age-wise/hormonally but chemo and oophorectomy shoved me into the menopause very rapidly and I'm on AI so my poor sleep is probably a result of this - and the fact that, like you, my brain is not calm.

When I say "I don't feel like "me" any more", my husband reminds me, quite rightly, that I am "me".

So, in summary, Naz, you are still you.  You've had a massive adjustment to make in your life and something that you probably never expected.  Psychologists probably have all sorts of fancy terminology for what we're going through but I think "finding the new 'you'" is a perfect way of describing it.

Wishing you the very very best.

[Janet_BCC]

Hi NAZ

It's good to hear from you again.   I've attached a link to an article which I thought you might find helpful.

http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604...

Very best wishes

Janet

BCC Moderator

[NAZ]

Hello all

I don't often post any longer, but do lurk from time to time

I was dx almost 5 years ago now. Left MX, node clearance, chemo and 2 lots of reconstructive surgery. I am NED as far as i know and getting on with life.

The issue i have, is that i have lost lots of confidence since my BC dx (not that i was all that confident before hand) but now i have lost more. My sleep is poor, i find concentrating for any length of time quite hard and i am always almost tired. My children are 9 and 6 and keep me busy and i have a part time job, which involves supporting others (online) and can be quite mentally draining. I am on the look out for a different job, something more relaxing, but have not been successful so far.

I am sure part of the reason why my sleep is poor, is because deep down, under the surface, i do fear the cancer returning ( i know i shouldn't, but sometimes i do). Also, i am not confident with my reconstruction, even though i am more accepting of it now. I am not sure what the issue is, but i do not feel like 'me' any  longer..i am not the person i was and i am having trouble finding the new me.

I need to relax, i want my brain to be calmer and happier inside and i want to like my reconstruction,instead of disliking it!

I do the living in the moment thing, i keep busy, love doing stuff with the kids and try and stay positive, but sometimes, well it gets too much...Is it just me? (pretty sure it is!)

Any tips most welcome

Naz xxxxx