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Feeling lost

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Re: Feeling lost

Hello ladies have been reading this thread although of course it was written by you all a while ago. I am awaiting a mastectomy and diep flap reconstruction at the moment for DCIS. Hopefully only treatment but of course I don't know. Despite having a happy family life I am by nature a person who suffers with low self esteem from time to time. I am already feeling many elements of the feelings you describe. My husband is irritated with me because he strongly feels I should be making the most of socialising prior to my Op but all I want to do is stay at home with my cats. Work is an effort and I can't deal with people's kindness anymore than I could deal with them being dismissive to what I am facing. I have to believe I will get back to something like normal. You all have my total understanding of what you are feeling or have felt before during and after treatment. I was wondering, especially as this post is older, how all you ladies are coping now. I sincerely hope life is a little better. Much love x
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Re: Feeling lost

That's good Janey and thank you x Jak
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Re: Feeling lost

That is good news, you definitely don't want to mess with more tablets! Today a better day than expected for me mood wise! Hope everyone else is ok x
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Re: Feeling lost

Morning ladies,

Hope you are all OK today? I'm so relieved to tell you that my GP isn't changing my antidepressant. Between us we could find no contraindications between Anastrozole and Fluoxetine. One less thing to worry about! x Jak

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Re: Feeling lost

Treeze , I've felt like you many times and I sometimes feel just like that McMillan advert when the man is sitting in the hospital and all the sound goes and He's totally isolated in the middle of nowhere. The wonderful people I've become friends with on this site have made me feel normal if you know what I mean.

I have got some really lovely friends who have been there from the start and saw me at my worst they are fabulous. 

It's the people who say " oh it could've been worse" " your fine now " and the pity looks I sometimes get ! 

Thank goodness for this site xxxx 

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Re: Feeling lost

Treeze, I've had that odd feeling a few times where I've been in a group of people and I feel oddly like I'm invisible, they are in a sort of bubble of cracking jokes and telling their news but I can't join in. It's made me quite wary of socialising except with close friends.

I honestly don't know what I would have done without this site and the friends I have made here. I was in such a state for various reasons, but being able to share and not to feel alone with this thing has been wonderful, I am so grateful for all the support I've found here.

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Re: Feeling lost

Things seem to come out of nowhere or its not till youre with others that you are how you've changed.I've taken on a fairly demanding part in a play and wonder if it's too soon but also afraid that if I don't try, I'll never get back on stage.Drama is a huge part of my and most of my friends lives.However, post chemo brain means I have difficulty following and understanding instructions..director who's a friend didn't realise what that really meant until I couldn't follow some quite simple direction the other night.Also I find it hard lately to just banter with people..does anyone else find that? My mind drifts off..can't concentrate and everything seems so trivial.I find I feel more "odd" in places I used to be a lot..kind of sad I guess and they remind me of the past and what's lost and what's changed.I know others..even my friends..without cancer can't really get it.
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Re: Feeling lost

Thanks Clair
I have certain CDs I can't listen to!! What I need to be able to do is get myself to a point where the tears don't creep up on me. I was pretty much there before I got my diagnosis but only with years of hard work and of course the magic pills! I keep telling myself I've got time and it's up to me to say when I'm ready to do whatever...
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Re: Feeling lost

Jak, I still have days when I just break down in tears for no reason I've warned everyone I know that it might happen.
But it's official crying is good for your health xx I did some Thrive training today at school and the trainer said we should take time to cry as it releases the bad chemicals in our bodies.
She even has a certain cd in her car for journeys home after a tough day!
Sending you a hug much love Clair xxx
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Re: Feeling lost

Oh the relief of a good blub! I just wish it hadn't been on the phone to my boss! Very tearful today, even though I had such a lovely day on Wednesday. I am questioning if I was fit to go back. Seem unable to manage my own mental health, so not sure how I would assess anyone else's! Hugs Jak and let's hope for a dry Saturday. Marydan you are still pretty amazing! Xx
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Re: Feeling lost

Thank you Ladies,

My husband came home for a cuddle so that cheered me up a bit. He's gone back to work now x Jak

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Re: Feeling lost

jak

 

Big big hug coming your way.

 

Yep it certainly is a roller coaster we are on and when we think well thats active treatment finished we think we should just be able to get on with things and as you say the other ladies so get us because they know what we are going through.  I wanted to push myself a bit further yesterday and boy am I suffering for it today, so it is a be kind to myself day xxx

 

I know when I first started my tamoxifen, which was just before I started rads, for the first couple of weeks I felt tearful and very sensitive, even down to Colin saying something to me one day and I thought he was having a go at me.  I could not work out if it was the tablets or the rads.

 

A couple of days after I finished rads I sit in teards drinking my tea, I did not have a clue why but I just put it down to the relief of finishing.

 

Helena xxxxx

 

 

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Re: Feeling lost

Hello jak60, I understand how you feel. It's completely normal to have down days - I still have them and I have come to realise that if I just go with it, it passes and the next day is better. We are processing everything that's happened to us and this has to be released somehow. Have a good old cry and don't feel bad about it. Then try to do something nice to take your mind away to a different place. Hope you will feel better very soon. Best wishes xx Lily

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Re: Feeling lost

This is such a roller coaster - I'm in floods of tears again today and can't decide which of many things is the cause. I suppose it dpesn't matter really I'm just glad I can write it on here and know you ladies will understand. I've been taking Anastrozole for 3 days now so I can't believe it's the cause. XJak

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Re: Feeling lost

That's what I love about this site we all understand what we're going through and that there's always someone there to just listen, support and give advice regardless of what stage we're at.
Love and hugs to you all xxxxx
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Re: Feeling lost

Huggle received thank you x
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Re: Feeling lost

Hi Ladies,

Back to feeling lost today. Having felt so positive in the week I feel as though I've gone backwards, So tired and emotional, I know it's the end of rads and that is probably the cause but knowing doesn't help. What does help is being able to express how I'm feeling on here. My family are brilliant but you all understand the frustration of the 'roller coaster'.

 

x Jak

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Re: Feeling lost

Jenny and Clair,

I totally feel exactly as you girls do. I am trying to get back to me but I really feel as though my confidence has been totally shaken. Back at work now with a phased return which is great but I really undermined myself last week thinking I could not do it.

I know the ms is still a biggy and I truly am doing my best to have a wee bit of faith in myself. I think us girls are a wonderful, caring brave brave bunch of ladies and I thank each and everyone for helping and listening to me through these months. Love to you all. Mary xxx

 

 

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Re: Feeling lost

My BC nurse warned me my head would catch up after active treatment finishes and she was right. The hormone tablets add to the emotional mix. I don't feel stronger but I'm glad I've survived. The physical scars aren't a problem but the emotional ones are. I had endometrial cancer 5 years ago and had a total hysterectomy. Having been told this would hugely reduce my risk of breast cancer, I felt very blasé about my routine mammograms and horrifically shocked when I was diagnosed with BC last Summer. I find it very difficult to think I'm not going to get hit again. The emotional scars for my family and friends going through this with me twice has been hard to watch. Like you Clair, I've always been the strong one and I'm definitely still waiting for the old me to come back fully. I did manage to put my life back together last time and regain my positivity, but this time I think it may take a little longer. Thank goodness for this forum! Xxx
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Re: Feeling lost

Hi mi85vette thank you for your words I'm so glad your at a point where you feel great and confident in your life. I can understand what your saying however I'm not there yet.
I was diagnosed in July last year and before that day I was the one in the family who helped solved everyones problems and made everything ok I was a confident person who was in control. Then all of a sudden I wasn't I had to put my life in someone else's hands. I watched my husband's face drop as the consultant told us what was going to happen I watched him try to be strong and pretend I didn't hear him crying in a locked bathroom because he wanted to be strong for me. I've watched my children and family worry when I had my tests, operations and go through radiotherapy treatment I saw the relief when I came home and told them I'd be ok.
My experience is my own just like everyone else. I know I'll become strong and in control again but I'll always have the underlying feeling that it can change at any time. So for now I'm going to let myself heal in my own time.
I also thank everyone who has supported me during this experience has taught me such a lot. Lv Clair x
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Re: Feeling lost

please don't take this wrong but I have had double lumpectomies and am almost 1 year cancer free, ive gone through chemo, radiation and hormone therapy now....but on this note....your life hasn't changed, you ARE still alive which counts for a lot, try and put all this behind you and go back the way your life was....If you are now cancer free life like you are FREE,,,, A lot of survival depends on letting it go and moving on to better things....I have scars and some pain now and then, the hormone drug arimedex has killer hot flashes but if that's all I get im fine with a few of them for 5 years....I have 1 down 4 to go...I hope you hold your head up and remember you beat this and that's something in itself to be thankfull for....Yes your body went through changes, but inside no one sees that but you..On the outside the scars are hid by clothing but hold your head up and be strong, it gets easier as time goes on.....take a deep breath and tell yourself you can do this and you are going to do this and show everyone the new stronger you !!!!
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Re: Feeling lost

Good to hear you sounding more positive x jak

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Re: Feeling lost

Hi All

 

thanks so much for your comments and advice.  I had a follow up appointment with the surgeon yesterday and I had a chat with the BCN.  She said what you all have said really about how it's natural to feel like this and to take things easy and not put too much pressure on myself.  I started the hormone therapy - Lezatrole today so I don't know what side effects they will bring!  I also had Herceptin for the first time without the other chemo drugs.  

 

I hope you are all feeling okay and thanks again.

 

Kath

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Re: Feeling lost

From my own experience I can safely say I pushed myself far to hard and didn't really follow advice given because I was desperate to get some normality back in my life. What I've learnt is my life is different now and I have to adjust to it. The way I feel and think has changed and how some people see me has changed too.
But I'm learning to see the good and finally give myself time and permission to heal emotionally as well as physically xx
It's all you can do really xxx
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Re: Feeling lost

Hi

I've started back at work this week. I don't work in education, but in social care, so linked to the local authority. I asked for an occupational health referral early on in the process. I returned to work this week as part of a phased return over 4 weeks. My local authority will support for 4 weeks with a phased return. However, I can use leave also. I was signed back from the end of December and have used leave until this week and will use some more after the four weeks, so that I can work part time until the end of March, in the hope I will be fit then for full time.
I started Anastrazole just before rads, which finished in November. I think the treatments hit us in so many different ways. My skin held up beautifully, but I've been hit by fatigue and was shocked to get my 2nd menopause! I have had auricular acupuncture, which has been brilliant for flushes and I'm doing a fatigue course at the local gym. I felt quite nauseous to start with on anastrazole but that did pass in a couple of weeks.
Anyway, I'm waffling on but would echo not to push yourself. I have found my 9 hours this week exhausting and it shocked me quite how exhausting. As I've said on another thread, I feel like I'm outside looking in most of the time but am starting to have glimpses of the old me. This forum is my safe space to put away the brave face!
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Re: Feeling lost

Hi pantinge1, I had a sub-total hysterectomy at 39 so am hoping I don't suffer too much. At 61 I can be doing without that on top of everything else. You were brave to go back to work. I hope you are beginning to get back on track? x Jak
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Re: Feeling lost

Hi Jak do not feel guilty about work i struggles in just two weeks after op on breast and lymph node where a splinter had gone, a few months later was made redundant, so rest while you can i didn't and ended up unbearably tired and not sleeping, i am on anastrozole also and it has brought back flushes and burning, but i was told that would happen as the hormone brings the menopause back on ... great eh ! take care x
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Re: Feeling lost

Morning Kath,

I will have finished rads next Tuesday and will then start Anastrozole. I didn't need chemo. At the moment I am considering a phased return 6 weeks after rads. Going by other peoples reaction after rads have finished I think there may be more tiredness to come plus any side effects from Anastrozole. Hope that helps? Everyone's advice on here is always don't rush things and give yourself a break. I feel so guilty about work but they would rather have me back feeling fit so I have put that guilt in a box and tried to relax a bit.

x Jak

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Re: Feeling lost

Hi All

I haven't posted on her for a while but I always check out other ladies' posts.  I had lumpectomy in June followed by chemotherapy and am now having radiotherapy to be followed by hormone treatment as I'm HER2 positive.  Also Herceptin injections until September.  

I thought I would be jumping for joy when the chemo finished but I'm not.  I'm not quite sure how I feel but I'm quite anxious about 'getting back to normal'.  Friends are already asking me about when I plan to go back to work and I haven't finished all the rads yet!  I feel my confidence has gone and the thought of work (I teach) fills me with dread.

I'm planning to do a Moving Forward course - has anybody done one or is thinking of doing one?  Also how much time after treatment are you ladies thinking of taking before going back to work?

 

thanks

Kath

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Re: Feeling lost

Yes i do Ali. Everyone says im strong but i feel very tearful since yesterday and angry. Luckily I've got great friends and clients but my husband who is normally great is moody or not really understanding and expectations are too highx
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Re: Feeling lost

I'm much more positive today thanks and I see your appointment went well so alls good with the world 🙂 even been outside gardening today. I love gardening in the cold so it us official I am mad!
I had a tearful conversation with my head teacher yesterday I'm lucky she is like a friend as well as boss very understanding. I even suggested starting my phased return 18th onwards when sick note runs out. Time will tell. There's a lot of changes and work hurdles that have gone on so will be taking it as easy as I can.
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Re: Feeling lost

Jane - I'm jumping about threads too! Part of my job is to work with  children with emotional difficulties so I agree with you that we are not in the relevant state of mind to do our jobs properly. I haven't got a problem with people at school thinking I should be there; I'm just paranoid!!

Jak xxx

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Re: Feeling lost

Thank you for posting this Polly - perfect timing x
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Re: Feeling lost

Re the whole moving on thing - I've struggled these last few days (after finishing rads) with all sorts of random thoughts and emotions.  Then I remembered i'd found an artlcle about it and read it last night in the early hours. We must remember to give ourselves permission to feel the way we do.

Not sure where I originally got it - may have been on this site?

After the Treatment Finishes - Then What?

 

This is the link for the one I had but I think there may be another fuller verion if you google it. Not sure how to attach a link so here goes!

 

http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0ahUKEwidtp7W6ar...

 

Hope it helps x

 

 

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Re: Feeling lost

I'm jumping about on threads today and not even started radiotherapy, but the feelings you have all expressed ring so true with me.

 

it seems that quite a few of us work in schools - I trained as a Nursery Nurse and have been in the same setting for 20 years now,  for the last 4 years I have had a more office based role, liaising with families and pupils with a wide variety of issues, including safeguarding.  I feel very much that as I'm struggling with my own emotional issues I'm not in the right frame to return to work to deal with the emotional needs of others.  

 

My boss informed occupational health as soon as I had my diagnosis, although I worked until just before surgery.  I had a telephone interview with them as couldn't attend in person as it was two days after my operation.  It was a bit of a waste of time as obviously didn't have a treatment plan in place, but it was agreed that I would go back on a phased return over 4-6 weeks. 

 

It makes me feel a bit better reading on here that I'm not alone in feeling as I do.

Jane

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Re: Feeling lost

Ali - ah yes those emotions have a lot to answer for!! I've had some emails from friends from the staffroom - not the same as being there is it! I agree with the anonymity of the blog. Do you think 70 will be the new 40 one day?

Jak x

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Re: Feeling lost

Hi Jak, no I am not on any tablets so just have my own emotions to blame. I am 49 and 5 years post menopausal. I have had the roller coaster of perimenopause and 'the change' since I had twins at 38 (I had had my first child a year earlier at 37!). I will probably be able to retire when I am 70!
I think what this forum gives me is a place to say all the things that I want to say but not to anyone I know. So 8n that way it is like counselling!
Claire good luck in work tomorrow - I cannot wait to sit in the staffroom with coffee and cake talking politics and TV etc etc etc.
I have a slightly sore boob with some shooting pains but nothing much else physical. I am still nodding off on the settee in the afternoon too - I feel that is a real treat! Thank you everyone for listening, responding and sharing xc
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Re: Feeling lost

Hi,
I went for my return to work meeting today and I'm going back tomorrow!! I am glad but a bit worried as well. It's been more emotional than I thought as it's a firm sign that things are moving on.

My work place pays for Occupational health so they were involved from the 1st op and there on in. I'm on a 5 week phased return that can be negotiated.
Ive been on tamoxifen since September and haven't had any problems a few hot flushes at night but nothing I can't manage. Xx
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Re: Feeling lost

Occupational health didn't get involved in my sick leave but I was only off for 8.5 weeks then phased return over 4 weeks. You may be fine with hormone tablets, I haven't  really had any side effects from the tamoxifen apart from some thickening of the endometrium which had to be investigated but was clear.  Best wishes, Nic xx

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Re: Feeling lost

Hi Ladies,

Ali I hope you go on to feel stronger - have you got hormone tablets? If so are they helping or hindering your return to work? I'm worried before I've even started taking them because, as you all say, people think we're fixed once rads are finished.I've already had a message from colleague saying they're looking forward to me being back after rads.

At what stage do Education Occupational Health get involved these days? My last intervention from them was 20 years ago when I had a hysterectomy followed by the onset of what seems to be life-long depression and anxiety - under control with meds. I imagine I will have a phased return to work - I did last year when my dad died (which brought on a serious dip).

Is anyone else caught in the age trap where if we had been born a couple of years earlier we would now be retired? Not that I was ready to retire at 60 but at least I would have had the choice at this point.

Right out in the sunshine I go...

x Jak

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Re: Feeling lost

That meant to say I couldn't of got through xxxx blooming phone 😉
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Re: Feeling lost

Hi Ali,
I feel just like you and I'm on the same diagnosis and time line. All the way through I thought I'll be fine I can go back to my old self when this is over but NO its hit me like a ton of bricks and I'm no where near who I was.
I've finally given in and I'm inquiring about some specialist cancer councilling as I can't go on like this.
My school have been fantastic and very supportive they have involved Occupational Health team ( who I found very blunt) I'm going back on a phased return. I fact I've got to dash off now as I've got a meeting with my boss in a bit.
This site is fantastic for support and u couldn't of got through without it. Sending you much love Clair xxx
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Re: Feeling lost

Thank you x
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Re: Feeling lost

Hi Ali

 

completely understand your feelings- as do many others - see another thread https://forum.breastcancercare.org.uk/t5/Coping-with-fear-and-anxiety/Moving-forward-and-getting-in-...

 

I think only folk who have been through it understand the magnitude and depth of what we have all been through- and how, just because active treatment is finished, it is not over, and possibly never will be. 

 

My my boss has been brilliant and I had a four week phased return and am now using up holiday and having a day per week off. It is good to be back but I certainly don't have the same passion for work yet. Luckily I think I can function well enough on three cylinders rather than my pre-BC four but will see how it goes. I guess with your job that is not possible but maybe phased return would help? We are all classed as disabled under the Equalities Act so your employer should make reasonable adjustment. Hope all goes well. 

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Re: Feeling lost

Hi Ali, I think the way you are feeling is completely normal. When treatment finishes we feel in limbo and it is scary to be 'on your own' without the routines and protection of the hospital team around us. Be kind to yourself when you do go back to work as well. I would recommend a phased return as it will hit you hard and I found it had all really knocked my confidence too. (I'm also a teacher) It does get better though, to start with it is on your mind all the time and I know the fear of recurrence never goes away but day to day life does more or less return to normal with time. Having said that, I am now much more appreciative of many aspects of my life and keen to snatch every opportunity that comes my way. My op was almost 2 years ago. Good luck and I hope your recovery continues to go well. Xx

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Re: Feeling lost

I am so glad I have seen this thread. I was diagnosed with high grade DCIS at the beginn8ng of September after only being back in work as a teacher in an SEN school for 2 days. I haven't been in since and they have been fantastic. I had 2 ops and 15 shots of radiotherapy. Now after finishing my treatment last week and feeling great about It i feel like i have now crashed!! Not physically as I am ok physically but mentally! What am I supposed to do now? Do I carry on as if nothing has happened? That is what I want to do really but it is also what everyone else is expecting me to do! I got upset this morning and said to my hubby I want to feel normal again but at the same time i want people to consider what the last 4 months have been about and look after me! His response was we have to.move on and look forward. He is an absolutely lovely husband but that response just sums up other peoples lack of understanding i think. I want to move on but i'm scared to - just incase!! Does anyone else feel like this?
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Re: Feeling lost

Hi Poppy3 yes it is hard to win and we don't want to be seen as the miserable one who had cancer and we should be so grateful to be alive,which of course we are. How dare that person say to you it is only a "boob" that is a terrible insensitive thing to say!! How would they like it if they had been through what you have. I remember at the beginning the doctor saying to me it will just be a year out of your life (treatment and surgery)! And the rest! It will be 5 years this year. I am on waiting list for further reconstruction as my LD and implant failed so I have all them emotions to deal with,I am in pain and discomfort, I am now waiting for a Diep. I will look like a patchwork quilt with all the scars. You then have other people putting their views forward such as my father in law saying why do you want to bother at your time of life!! (with reconstruction) I was 43 at diagnosis and now 48 hardly over the hill but he would never understand how it feels to be a woman who has had breast cancer and had to have a mastectomy. I also have lymphoedema which is a daily reminder and gets me down and am on Tamoxifen for at least another 2 years so just a year out of my life, I don't think so,it carries on for some of us. Maybe for those who have had a lumpectomy and not needed further surgery and chemotherapy it is less of a journey. Even then it is still a big deal to get over and it's not something that we can just forget about. To try and carry on and go to work every day with a smile on our face is not always easy xx

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Re: Feeling lost

Hello Whitelily. I was relieved to see your message. I am two years post mastectomy and still have times when I can't cope. Then I feel annoyed with myself for feeling this way. You are right when you say people don't understand.  They see you have gone back to work, made an effort with your hair and make up and that's makes everyone think you are fine. One person said to me ' it's only a boob". Well it wasn't just that...it changes your whole life. I feel like it's an effort to keep smiling all the time but I don't want to be known as the miserable one who's had cancer. You can't win really. I try to stay positive and I know how lucky I am but it is so difficult to explain how you feel to others.  I feel you have to make an extra effort with everything we do. It is never ending. Thanks for listening. Xx

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Re: Feeling lost

Hi Ladies,

It's so good to know I'm not the only one who's struggling with not feeling able to go to work - there are some amazing people who just seem to sail through but I imagine it hits them in the end? I'm so lucky that I don't need any prosthetics and feel that some people think I should recover quickly because of that. When I'm told how well I look I feel like asking if they want to see my scar!! I find myself reminding them of all the trauma I've been through and that makes me feel a bit pathetic. I think people also forget that we still have to cope with other issues in our lives too alongside the cancer.

I keep myself going by taking a day at a time and trying not to dwell on the bad things. My family are brilliant.

I've just rejoined a knitting for charity group (Loving Hands if anyone's interested) so that I've got something to occupy myself with now Christmas knitting is over.

x jak60

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Re: Feeling lost

Clair, remember that pact! I've beaten myself up for not working through treatment but BC, GP and colleagues clear, the unpredictability of my job and those I work with sometimes, would leave me vulnerable. It sounds like we all have strong work ethic. I'm now anxious about going back, having craved work for a while! X