still not 'normal'

Hi all

just thought I would do a bit of moaning again. I posted a couple of weeks ago as I was upset because people keep wanting me to get back to ‘normal’ and I do not know how to. I am 46 years old( think I said 47 on my last post so that shows where my head is) was DX in March 07 had WLE and two weeks later shave andlymph nodes removed followed by 6 chemos and 20 rads, am now having monthly Zolodex implant and Femera(letrozole) daily. I was recommended an article which I found very helpful and to get counselling, which I am waiting to hear about. However over the last two weeks I have been getting worse, I am depressed, tired, achy, and anxious and feel like I cannot cope. I was supposed to be on holiday this week but my friend who I was going with, her mother was taken seriously ill 2 days before so we had to cancel. My friends mother has been like a mother to me as my own mother died in 1991. Although shge is improving now I was at the hospital with her when she stopped breathing and I went to pieces which is not like me at all, I am usually very calm in a crisis. On top of all this I had a letter yesterday that I have to go and see a doctor in order for them to assess whether I am still ill enough to be getting incapacity benefit. I am sorry to moan on but I seem to be taking one step forward and two steps back. I just needed to get it all off my chest, because if I talk to certain friends they just say that these things are to be expected and that if I would be a lot better if I went back to work. I even was asked yesterday by a neighbour if I wanted to go back to work.
Best Wishes
Dawne

personally i found it helpful to return to work as it gave me an oasis of normality, h owever i think it depends on the nature of your work. I was and am largely office/home based. I did shorter hours for a few months too. I worked through radiotherapy but didn’t have chemo. I also attended a support group weekly for a while

I was 48 when diagnosed but spent six months with the lump due to misdiagnosis - and I worked through this period too. I must say that period of uncertainty was pretty difficult

mole

Hi Nightowl,
I too was DX March 07 and have recently returned to work p/t. I think the thing to do is what is best for you - and ignore the nosey neighbour. They don’t really know what you’ve been through. For me going back to work has helped my confidence(i think) but i do still feel very very tired by the end of the week. Don’t rush yourself , i find i now have panic attacks in social situations (never used to) it’'s sort of like i don’t trust my own body any more if that makes sense. Speak to your doctor and see if they can give you a bit of extra time - or possibly organise a phased return?
cheers
caroline

Hi Dawne

I’m sorry you are having a difficult time at the moment, there are a couple of Breast Cancer Care’s support services that might be of interest to you. The first is Breast Cancer Care’s telephone support group. It’s a chance to get together once a week to talk with people who’ve been there. Linked together by phone in comfortable surroundings, you can express your feelings and discuss the practical and emotional impact of living with breast cancer. The groups will be particularly useful for you if you feel isolated. The groups are completely free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK.
There is also Breast Cancer Care’s peer support service. The telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding. For more information about both these and our other support services available to you please telephone our helpline on 0808 800 6000 or email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>. You are welcome to call the helpline for further information and support regarding the specific concerns that you have at the moment.

Best wishes
Katie

Hi Dawne,
I started off on Arimidex but because of mild side effects, Onc changed me on to Femara. I found it didn’t suit me at all. I was very weepy and depressed on it and had other side effects too. Have now re-started Arimidex and will put up with the much milder side-effects!
You take your time and do whatever feels right for you! You’re the expert on your own body and don’t let anyone tell you how you should be feeling/doing!!
Take care.
Love and hugs.
Jacquie

Hi Dawne

Must agree with Jacquie that you need to do what feels right for you - not what all the ‘well meaning’ friends and neighbours think is right.
THEY HAVEN’T BEEN THERE! Unless they have been unfortunate enough to be dx with a life threating illness they cannot possibly understand how stressful life is, not only during treatment but afterwards too.

The drug side effects could be making it harder to cope day to day.Plus,having to deal with other stressors is sometimes just too much to cope with when you are already stressed. I am talking from considerable experience and really do understand how awful you are feeling.

I am glad you found the article helpful and hope you get access to the counselling soon. Meantime, keep writing as there will always be someone on here to listen - again I write from experience!

Love and hugs
Seren x

Hi Dawne… i read your posting and always wonder if i was alone (even though i knew i wasn’t) i don’t know whats wrong with me i am a 31yr old with a 1yr old son who keeps me going having said that i too feel soo depressed and alone i feel like i can’t cope with all the treatment and side affects … i had 6 cycles of fec and 3 1/2 weeks of rads whist having 6 months of zoledax injections fr breast cancer - i have experienced no sleep with my son aswell as hot flushes waking me … stiff joints (feeling like an old women) sooooo tired and sick … whilst all this is going on around me everybody seems like i should move on and as if nothing is wrong and have a happy face all that time - i wish that was the case… i want to cry at everything - when my partner comes home all i do is snap as he is walking in at 6.30 as he doesn’t realise my days are as bad as i feel. i feel like i have let my son down … but can’t bring myself to play groups etc with no hair and everybody staring even when i go shopping ?!

hi dmkayp I am sorry to hear you are feeling so low … i am a lot older than you and my kids are grown up I cant imagine what it must be like trying to cope with a baby on top of it all … I was lucky enough to escape chemo a I opted for a mastectomy howvere I know there is no guarentee with this bloody disease.I have been back at work ages I was dx in Aug last year …but I am normal !!! to all those around me cos I have hair !!! as I dont have any visible signs of the illness so to all "my public " i am cured …dont get me wrong dont want mollycoddling …but In my head i feel awful … I am on tamoxifen now … I ache … i have blurred vision and I flip at the slightest thing all in all I have gone a bit Mental !!! Ithis site has been a great help to me as there are people who know exactly how you are feeling … I always feel better when I cme on here as there are ladies who are going through and been through so much more than me and helps me get a perspective on things so please dont despair come on here share your emotions with us we are all in this together xxxxxx
Mazxxxxxx

Hi dmkayp

The hair thing is so huge isn’t it. No one can really understand how it feels, our hair is our security blanket. I have had a full fringe since I was about 4 years old so having all this forehead on show makes me feel really vulnerable for some reason. My hair is growing back now and I look like I have got proper hair again but I don’t think I will have a fringe for months yet.

People are a bit shocked when they first see you I think but you will be surprised how quickly people see that its still you in there you just look abit different at the moment. I was out shopping once wearing one of my many many caps that I wore with a fabric Alice band type thing [dont know what they are called] to cover the hairline and there was a hair accessories stall in the Mall and a young girl asked me if I would like to have something done to my hair today. I must have been in a genourous mood cos I resisted the temptation to sit down, take my hat off and say “so what are you going to do with this then” and just said not today thank you.

The thought of going to playgroup may seem daunting but doing something “normal” can be a great way of escaping for a couple of hours into toddler world. I went to my aerobics class as often as i could manage cos whilst I was concentrating on not falling over my feet I wasn’t thinking cancer, cancer, cancer all the time and the other ladies there were always so pleased to see me it was really nice.

I hope you feel better soon, 1 day at a time is all you can do during this awful time.

AJxxx

Hi Nightowl
Sorry things are so low for you right now.
I do understand how you feel - being in your forties and having all this to put up with - we are too young for this to be happening to us!!! Cancer can attack your confidence and leave you wondering how you go on living the life that all the treatments has saved for you.

There is a charity called Amazon Heart that provides peer support for young survivors like us. There headline reads “What if breast cancer was just the start of an amazing adventure?”. I have found it really helpful to be in contact with people who understand so completely what I’m going through but are so positive about finding something good, something brave out of this experience. In september, God willing, I’ll be riding a Harley Davison from Los Angeles to San Francisco with 20 breast cancer survivors from around the world - I cant wait. Check out their web site, they offer all kinds of experiences and you will not feel so alone

Best luck babe
xx

Hi Dmkayp
you are allowed to feel crap, who expects to get BC when they have only just reached their 30’s. I told myself that if peopled stared at my hair it was there problem not mine, i hadnt deliberately shaved my hair off i took a deep breath before i left my home and stepped out of the door. perhaps you could contact homestart and ask for some help, it might be worth looking up on the internet to begin with anyway,
sending you a big hug
Anna

I am also on tomoxafin and feel very tearful unable to cope and a feeling of being useless. my husband is wonderful and supportive but last week cut 2 tendons in his hand and ended up in hospital fot two nights does not seem long but i went to pieces which is not like me usually i can cope. luckily my son was home from work and supported me but i felt so stupid and again useless.

Thanks to everyone for their comments, I have managed to get access to an oncology counsellor via my gp and onc and I start to see them in July so I am hoping this will be helpful. Also saw the DWP doctor and he says I am not fit for work yet. My friends mother is improving but I have another friend who has been taken into the liver unit at hospital (He had a liver and kidney transplant7 years ago) with anaemia and pneumonia, he is really very ill at the moment, so I am hospital visiting again and I am praying that he recovers. I cannot seem to get away from hospitals during the last two and a half years. Once again thanks to everyone for their help and support.
Dawne