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I'm struggling

29 REPLIES 29

Re: I'm struggling

I too felt like a middle aged frump with WHITE hair 2 stones overweight and a poorly battered and bruised body, Last week I had my hair coloured and cut into quite a modern style , I have managed to lose a stone so far but diet is now on hold until January 2nd and I am slowly and I mean slowly starting to feel a little like me again , the old me will probably never be back completely but I am hopeing to learn to accept the new me , I dont stand in front of the mirror anymore and cry , I have hair back ok so its short but its hair and I will eventually fit into my jeans without crushing my bones !!! Its my mind that is suffering mostly the fear and the horror of what has happened will take longer to recover from Im not a religious but I pray we will all recover from this and be happy healthy beautiful strong women , sending good wishes & Vibes to all who need them xx

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Re: I'm struggling

I think, all of us who have gone thro' this treatment can sympathise.....I know I can.
You look forward to finishing the treatment, and yes it's great, but then everyone else doesn't feel the same. We build ourselves up to a point, and we can't possibly match those expectations. We think we'll be on a high, but we're not. We feel vulnerable and 'out on a limb' somewhat. It's natural.
Time......does get it better. You'll soon pick up and will feel better every few weeks (not a week). I would say that it took me 2 years before I felt 'back to normal'. You feel better in stages, but it will be a while before you're back to normal. (I'm a lot older than you though).
Take care and keep your chin up. Look forward to Christmas and the New Year.
xx

Re: I'm struggling

I miss the "old" me as well...I can't even stretch now without doing myself a mischief..my sore ribs are on my Mx side..I thought after a year I would be ok but apparently not..I agree about being tipped into old age..I was a youthful 52 when I was dx with a lovely brown bob and a not too chubby body..now I've turned into my nanna..I knew it would come but not this quick..I seem to have turned old overnight..I look in the mirror and see a little round middle aged lady instead of the person I was..it takes me by surprise every time..I have yukky curly grey hair... don't feel like me at all...I miss my zest for life as well..my get up and go has got up and gone!!!..I have to force myself to do everything..even go out of the house some days..I hope it will all get better with time..I have no faith in my body at all..it let me down once and it might do it again..that's the root of all this I think..at least we can vent on here..it just helps to let it all out some days..and to ladies who understand...

Re: I'm struggling

Hi Applestreet - sorry to hear you're still struggling. I hope the tablets kick in soon.

The sleeplessness makes it all so much harder and frustrating (have you seen my poem in the poetry thread - 'Where's the off switch'). At least if you could sleep there would be some respite. I found treatment my comfort blanket and once it stopped I felt so on my own. I've also had a cough for about a month. Haven't mentioned it to my GP but it keeps niggling away at me. I feel like a hypochondriac. During chemo I found a new lump, but that turned out to be a cyst. Pulled a muscle in my ribs which took about 6 weeks to clear up. Found a lump in my leg - harmless lipoma. Got swollen gland by ear - salivary gland infection. Now blood tests as might have overactive thyroid but my initial thought was ovarian cancer, based on the symptoms. It just seems one thing after another to cause me worries because everything makes me initially think - cancer! I share your fears. I know my prognosis but my family and most others don't so that's another reason why they don't understand. One of my bosses suggested I go and do all the things I'd like to do - travel the world....etc etc (not that I want to do that) but there's just that minor detail of paying the mortgage and being able to afford to live........no, not gathered that one eh? Seemingly not - though I've sent him a copy of the Guardian article that someone recently put a link to as it sums up many of my feelings.

I also share Janie's feelings about missing my old body and zest for life. I find many of the things I used to do I can't now because of the effects of having my lymph nodes removed and the mx.

It's all a bit rubbish really, isn't it. But let's stick together and share our woes and at least we can genuinely sympathise with each other.
X

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Re: I'm struggling

Hi Applestreet
I think its hard for anyone who hasn't been through breast cancer to understand. The instability of moving house doesn't help. I had to move house. I hoped that I could delay my chemo a few weeks in order to move in but the onc wouldn't allow it so I had to move in during chemo. It was absolutely exhausting and I shed a lot of tears. I also needed anti-depressants for a year.
Eighteen months on, I still have my down days. The treatment seems to have tipped me from middle age into old age. I still tire easily. I miss my old body. I haven't had reconstruction as I can't bear to think of more surgery. I miss having energy and a zest for life. After being diagnosed twice, I live in fear. I have been coughing for 2 months, chest Xrays came back clear but I'm still coughing!!
I'm not sure that life will ever be the same. But we are still here and it helps hugely to know others are going through the same sad/ angry/fearful thoughts.
Because hormone therapy blocks or prevents production of oestrogen, that has a knock on effect on the amount of serotonin we produce. It's small wonder we feel so down!! Hang on in there - Best of luck with the antidepressant!
Lots of love xxxx

Re: I'm struggling

you're not wrong lottie..I think a lot of my problems are created by my fear of it coming back..my ribs are sore..I stretched too far..had a real meltdown on Monday and hubby took me to the doc to get checked out..cartilidge damage she says...well I bl**dy hope she's right..it eases with painkillers so she probs is...I'm bl**dy terrified as well...I just hope this citalipram helps..had them when I was first dx and they did help...doc said to stay on them but I felt better so stupidly stopped..Iam mostly ok in the day it's when I can't sleep that my mind wanders and then it all starts like on a loop..it's hard to move on isn't it..need this site more than ever at the moment...

Re: I'm struggling

Hi Applestreet & All
I feel exactly the same I finished active treatment in September and now on Tamoxifen for 5 years, Not had a decent nights sllep since chemo started in March Im tired and scared !! This is why I love this site because nobody else really understands like the Ladies on here, they tilt the head make all the right noises etc but they DONT really understand what its like to go through this , and then when the chemo/rads etc is over I find most expect you to be full of the joys of spring ... well Im not Im bl**dy terrified , Most days im ok but the smallest thing can set me off Im know we will all get there eventually but it all gets too much to deal with at time and we need a good rant/sob whatever does it for us , the support on here is amazeballs ( love that word ) would have been lost without this site

Love & good vibes to all xx

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Re: I'm struggling

Hiya Roadrunner

If you post the link in a new thread in this section (After treatment has finished), preferably with a useful title so people can easily identify it, we can make it a "sticky" in this section so it'll be easy for other people to find (it'll be in a special bit that stays at the top of the list of threads in this section - in case you're not familiar with the term "sticky").

Leah

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Re: I'm struggling

Hi I'm a bit like Flori....tn no hormone treatment etc. as you all say when you are gong through the treatment it's not nice, but its head down and plough through. I was ok going through chemo, fell apart with the mx, so wobbly going throu rads. Last day of rads I broke down, it was like someone had just pulled the rug from under my feet, picked me up and slung me into a dark room on my own and locked the door. Not sleeping well at all, I stay up really late so that I don't have tokay in bed worrying about every ache and pain. My husband doesn't get it and moans when I'm sleeping in in the morning, says I should go to bed earlier!! It's alright for him his life has just carried on being normal, still goes off to the gym and out in the evening. I feel like everyone, hospital, husband has deserted me.
i am going to book myself in with the bc counsellor as I feel I need advise on how to put all those feelings in the right place, so that I can move forward. I've also signed myself up to the 'moving forward' sessions that they run at the hospital, so will see if that helps.

Re: I'm struggling

Hi Applestreet
I hope the citalopram works for you. I took a low dose of it for 18 months to help with the tamoxifen hot flushes, but I also noticed that I was a calmer person while taking it. I was generally very chilled and took everything in my stride. Having finished tamoxifen in October I slowly weaned myself off the citalopram and have noticed the chilled me is also slowly disappearing! I am missing her already.
You may find the following link useful - it is an article written by a clinical psychologist on the after effects of cancer treatment:
http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604...
Moderators: I have lost count of the number of times I have posted this link, as it is such a useful article. Is there any way we could have it permanently on the website?

Re: I'm struggling

Hang in there Applestreet. I was like this a year ago and the citalopram 10g really helped. It took a few days to settle in. I only wake once or twice a night now and drift back off quite quickly. It's amazing how much better I feel now 🙂 x

Re: I'm struggling

Hugs for you applestreet..
Sorry you are feeling low today..
Have you tried any relaxation techniques or yoga/meditation to relax your mind and body?
Does lavender or clary sage help in a warm bath with a nice drink?
I know how you feel because i feel the same too although further down the line than you..

Sorry to have not been much help to you but just wanted to let you know i get where you are coming from..xxx and am hoping that in the days/weeks/months to come you will see the sunshine again..

Re: I'm struggling

Hi..just want to rant really..got some tamazepan off the doc to help me sleep..does it work..NO..I'm bl**dy fed up..I'm knackered and sick of all this BC crap...just waiting for the citalipram to kick in and hope that sorts me out..I feel really sorry for myself today..I know there are worse off people on this forum but if I could just go to sleep and stay asleep for more than 2 hours I would be happy..is insomnia an se..I'm sorry for moaning but I am so fed up!!!!

Re: I'm struggling

Hi Applestreet
I just wanted you to know that you are not alone in how you are feeling..
I was diagnosed three years ago, had mx, chemo, on tamoxifin, recon, failed recon, more recon and do you know what, i am only just dealing with it all NOW.
For three long years i suppressed all feelings and emotions, trying to protect others from my fear and anxiety.
Well my last surgery was a month ago and boy am i paying for that suppression now.
So much so that i am now going over three years worth of 'stuff' with a lovely (i think psychologist) who is attached to the organisation where i work and TOTALLY gets where i am coming from.
My mind also wanders during the early hours and am seeing GP about something to help me sleep better (short term) until i feel more emotionally healed.

What i am trying to say is, your mind and body have been through the mill.
YOU have had much so deal with in addition to the BC so be kind to yourself and give yourself lots of time.
Taking each day as it comes is a wonderful idea. Grab each good moment and try and ride out the bad stuff by talking to us on here who know how you are feeling right now.

Nazxxx

Re: I'm struggling

Hi..thanks for all the replies..it helps to know that I'm not going barmy..have had a word with GP and am going onto low dose Ciltalipram for now..didn't want to but can't go on like this..just hope they work...will think about the mindfullness thing...it's the wee small hours that set me off..you know..when your thoughts start wandering...should be grateful treatment is over..the chemo to me was a bit of a comfort blanket..as long as I was having treatment I was safe and now it's finished I feel a bit out on a limb..am going to try and live day by day and see how that goes...thanks again..apple

Re: I'm struggling

Hi Applestreet

I know a lot of people think it's probably the tamoxifen that's causing them to feel down but I'm TN so don't have anything else to take. I finished my treatment in May and expected to be elated - as did everyone else. However, I became very down, tearful and found it very difficult to cope, particularly in my job where I have to deal with some difficult people and issues that I now find are quite trivial to get so angry about considering what I've been through in the last 16 months. People who haven't experienced it don't understand, they look at me and say how much better I'm looking every day (though how I can be looking better every day when they've always told me throughout that I looked really well........). I was also lucky that my work paid for me to see someone to talk through my feelings as I kept 'cracking up' - not good when the very busy boss has to make a special hour long trip to where I work to take me out for a chat for a whole morning!

So I think perhaps it's just the whole situation of treatments, worries and physical effects. The mx has affected my body confidence also and I haven't been able to have a recon yet plus I haven't managed to shed all the weight I put on with chemo. I've been very tired and not myself recently but it looks like I may have developed an overactive thyroid - but my first thought was that the symptoms were cancer related. The BCNs and doctors say it takes a good 12 months to 2 years to get over the treatment and I do think that's going to be the case. I need much more sleep than before. Sometimes I'm in bed by 6pm and at weekends don't get up till 8.30-9.30 am, whereas before all this I would be up at 6 am doing all sorts. even on weekends. I've always been very physically active but have been struggling to motivate myself to do anything so at the moment my life is mostly working and resting but then I feel guilty and frustrated for not doing anything.

Sorry, I've just had my own little rant without contributing any help to you. I suppose what I'm trying to say in a roundabout way is your feelings seem quite normal, you're not alone in this and that there are people out here who understand and care - as can be seen by the other ladies who've posted.

Best wishes
Flori
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Re: I'm struggling

Hi apple street,I'm over 2 yrs now since diagnosed,still get very tired and can't do things as I used to,think maybe getting older might contribute a little to that.I have also just had MRI results because of bone and muscle pain all over my body,quite severe around the neck.thankfully just a damaged disc in neck and also in lower back,but my doc also said its the result of too many birthdays and bad genes! What I really wanted to say was don't be too tough on yourself,I think most of us have some lingering effects both physically and mentally.hope you're soon getting more good days than bad,
Best wishes,Di.x

Re: I'm struggling

Thanks Funkilala, I know you were only trying to help.


Take care, June

Re: I'm struggling

I'm so sorry June.
It wont happen again. X
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Re: I'm struggling

Hi ST, Mindfulness was the technique ai was talking about which the counsellor s introduced me to. I find it very helpful and it does remind me to notice things in the here and now rather than the "what ifs" xx
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Re: I'm struggling

Hi applestreet
Sorry to hear that you are feeling this way, its really awful what this Cancer does to us all.
I am earlier in my journey but your feeling of worrying about every ache and pain is so true to me even now and I am sure as time goes on it will probably get worse. However I don't feel I can talk to my BCN very well and have put off ringing about a couple of things so when I go visit the Oncologist next Monday have a list of things to ask her.
Please talk to someone even if it just helps to stop things going round and round in your head.
Don't be too hard on yourself as people have said you have been through an awful lot.
Its difficult when you feel low to think positively but as supertrouper says try and not think about the past or the future if that makes sense but in the now. Mind you living in the now has left me without a card or present bought for Christmas but he ho we'll get there even if its Christmas eve but you get the idea!
Take Care
Karen

Re: I'm struggling

Hello


Sorry but the Links in Funkilala's post have been removed as they identified a doctor.


June, moderator

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Re: I'm struggling

Hi Applestreet , reading your post was like reading something I have written, felt just like your words had come from my hand I wish I had something good or comforting to say to help you but unfortunately I feel like am sharing your boat but I do know that this site has been invaluable to me to help me in my dark days there are some wonderful ladies on here that help so much unlike myself who can only send you massive cyber hugs and positive energy and hope that your good days return soon. The thing I hate most about this after active treatment is my inability to stop crying have been left quite an emotional wreck and am hoping that it is due to the tamoxifen have already visited my GP who's advice was wait for 3 months and see howe it settles then they will consider giving me something to run along side it if I still am the same I see from your post you are further on with your tamoxifen so may be worth giving your GP a call to see what he can offer. Lots of hugs and love to you Angi xxx

Re: I'm struggling

So sorry apple that you are feeling low, you have come through a lot and it will take time for your head to get to that better place, I think the months following treatment are full of worry you think every ache, pain etc is C, it is frightening, I have had liver scan, bone scan and finally mammo, seen onc and surgeon, speak to BCN regularly, have joined a group and have seen a pain psychologist, all of this has helped me greatly. Still have some teary moments, just little ones that are connected to I think the lack of oestrogens. (tamoxifen)
Phone your BCN, doc or helpline (on here) today, speak to them about your worries, fears etc do get help, it maybe the tamoxifen, talking is really good especially to someone you are not close to as you can get all your feelings out and please keep posting.
Phone today, lots of hugs to you xx

Re: I'm struggling

Hi applestreet
I am at the beginning of my journey and cant offer you any advice but I saw this and wondered if it would help you.
I still dont know if i'm allowed to post links on here so apologies to the Mods if I am breaking rules.

Re: I'm struggling

Hello there,
I know how you must be feeling because I have felt the same way too. All through my treatments we marked each milestone with a celebration. End of chemotherapy - cracked open a bottle of champers. Same after surgery, end of rads and final visit to oncologist. Then all I felt was a rather puzzling feeling of abandonment. All my family and friends expected me to be back to how (and who) I was. But even though it is a year since I had my mx and 10 months since I finished rads, I still suffer from a painful shoulder, extreme tiredness, difficulty in sleeping, various joint pains and hair that Ken Dodd would be proud of.

Having said all that, what I don't suffer from (at the moment) is depression, tearfulness or anything like that. I think this is partially down to how I start and finish each day which is in a state of "mindfulness". This involves keeping your thoughts in the "now" and not letting them wander into the past or the future. We all have our problems and worries, but try to concentrate on what you have to worry about "right now". I read a book by Eckhart Tolle called "the power of now" and it helped me. You could probably reserve the book at a local library or I would be happy to lend you my audio book version of it.

Xx

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Re: I'm struggling

Hi Applestreet, Sorry, I've just seen this. You sound very much like I was 6 months after my treatment ended. Tired, cried easily, struggling to come to terms which the bomb which had gone off in my life. I thought it might have been tamoxifen related, and this might indeed have been part of the case. My Occupational Health team at work were very good and made a valid point when we first talked about this early in my treatment. They said "once this is over, you may feel worse for a while because while you are going through treatment you are in a survival crisis and full of adrenaline, but once it is over and you have a chance to reflect it will be a bit like post traumatic stress disorder and you may need counselling or time to come to terms with what has happened to you."
it seemed least of my problems on dx, but my experience is that they were exactly right. whether it was delayed shock, after effects of WLE and re-ex plus rads combined with the return to work or aches, pains and hormone effects of tamoxifen, eventually I decided that they were right. I took up the option of counselling which I was lucky to have available via work. They were very helpful and I found it good to talk through the odd mix of worries, trauma, shock, sadness for what has happened to my previously body confident self. It also brought right back the memories of my I other dying of bc secs. Counselling helped me to switch off negative thought patterns and to live for the moment a little more.
I think what I am trying to say with this ramble is that it is entirely normal that we need time to come to terms with what has happened, and it helped me to have some professional help with this. I don't know whether this would be your thing, but I did find I felt a lot better for it and it then I could also split out what was to be expected and what might be tamoxifen SEs.
If it helps to let off steam to us, do so. We know what it's like. And if it helps, two years on, I feel so much better. it takes time, be kind to yourself, you've had one heck of a year xx

Re: I'm struggling

Oh Apple, big hug for you. it's rotten isn't it, you get through all the treatment, think you can start to move forwards then ... wallop.

Couple of thoughts.
Firstly, you have been through one heck of a lot and it will take its toll physically (fatigue and/or exhaustion) and emotionally. Sometimes the keeping going through all the active phase means that a few months down the line it all hits big time. The disrupted sleep an dpressutres of thjis time of year to be jolly and happy will all add to that.

Secondly, depression is a side effect for some people on Tamoxifen, and quite a few people take low dose anti-depressants at least for a while. There is no shame in this, and it can help reduce flushes too.

Why not give your BCN or GP a ring and see if they can help you. As mine said to me (about other side effects) there is no need to suffer and being a hero is not all its cracked up to be.

All I can say, is that for me another year down the track I am much nearer to the 'old' me physically and emotionally. I can still suddenly find myself kn*ckered and my brain is still a bit prone to fogginess. but I'm getting there.

Re: I'm struggling

just bumping..it's not appearing in posts...

I'm struggling

Hi..I don't really know where to start...I don't know if this is the result of everything that has happened to me in the last 15 months...I was dx Sep last year..had right Mx in Oct..broke my wrist in Nov..had Hickman inserted in Dec..started chemo in Jan and was really ill..ended up in hossie..had to have hickman out in jan due to infection..chemo jan to may..also sold our house in May this year and that fell through..still trying to sell..my treatment finished and I thought I was ok with it all....until just lately..I can't seem to get going..I get tired easy and feel so down all the time..it's an effort just to get out of bed..I was having good days and bad days and now seem to have more bad than good..I am taking tamoxifen and wonder if this is one of the se's as I am not sleeping too well either..I thought it was the brand and changed it but to no avail..I am also worried about every ache and pain I have...at 54 I am bound to have some but each time I think the cancer has come back and get upset...I cry easily lately which is not like me at all...I don't want to bother my OH as he is worried enough about me as it is..I feel better just writing it all down..this site is invaluable to me..crying now..how do I pick up the pieces of my life...if anyone has any suggestions I would be really grateful..apple