Topic: I'm not the same anymore.
I'm not the same anymore.
posted Sun, 05 Sep 2004 12:12AM
JennyG
I knew that my life would change during op, chemo and radiotherapy, but I never imagined that my whole life would be different. I used to be a very active, bubbly person but now I'm an emotional wreck. My energy levels are non-existant, I've piled weight on (a stone!). I can't motivate myself to do anything outside the home other than the weekly shopping trip. I finished all my treatment in July 04 and thought by now (Sept) I would be getting back to my old self, but I'm anything but ME.
I'm either asleep, in tears or worrying about something. At the moment I'm going through the 'will I get secondary cancer'. Every ache and pain I get I'm thinking that it's back. It's so unlike me, the old me. I'm 40 years old and I honestly feel like I'm 50. My son, who is 16, was always proud that I was a 'trendy' MUM, now I've turned into this nervous, overweight wreck who hardly goes through the door. I had a problem with the hair loss thing and took it quite badly, I found it very hard to be seen with wigs or headscarves on so I avoided going out. My life for the past 12 months has been on hold, and I want it back. Anyone else feel that this has destroyed their life as it used to be?
(No Subject)
posted Mon, 06 Sep 2004 03:48PM
JJ
Dear Jenny I think you post will cause a response in many people.
Can i point you to a post i put on the Treatments bit. Its called something like "After treatment- what next" or such. I, and many others have found the descriptions and comments very useful
A MUST read.!
posted Mon, 06 Sep 2004 04:55PM
JennyG
I read the article JJ and found it so helpful and so true. At least I know that I'm NORMAL and not cracking up. It's so refreshing reading something that explains exactly how it really is, what to expect and what not to expect instead of the crap you get from some of the breast care nurses/Oncologists and GP's.
It's also a great article for family and friends to read too, my partner understands more now and has perhaps a little more sympathy!
(No Subject)
posted Mon, 06 Sep 2004 04:56PM
nixcic
Oh Jenny
You have summed up in a nutshell how i feel,i finished treatment in May and i still feel like a pile of poo!!!
Its a struggle to just get my son to school in the morning, i can't play with him how i used to (he is 6), its so bloody frustrating. A freind of mine who has had BC and all the wonderful treatments said it took her at least a year to feel anywhere near normal, and now 10 yrs on she said life is still very different, i think we have to learn to live a new normal, albeit a very tired and anxious one, the fear of reccurrance will never dampen down until they find a cast iron guarenteed cure for this.
Try and live each day as it comes and don't force yourself to do things you don't feel ready for, try and have little treats now and again as a reward for being one step closer to who you were before. I also found taking a liquid form of pure aloe vera juice has helped alot, may be worth a try.
Take care for now
Nikki x x x
(No Subject)
posted Mon, 06 Sep 2004 05:19PM
JennyG
Aloe Vera???? We have so many Aloe Vera plants in my house it's beginning to look like a garden centre! I rubbed it into my head every night to try and prevent hair loss. Now my hair is back, I rub it in every night to help it grow!.
I read JJ's reccommended article and it's wonderful, accurate and extremely helpful, and even though I'm weepy today and down in the dumps I'm not going to beat myself up about it anymore. It's been a tough journey, one that I will never forget, but with you ladies out there it's been bearable. Thanks for your advise and help throughout my 12 month nightmare.
I'm off for some Aloe Vera juice!
JEn X
(no subject)
posted Mon, 06 Sep 2004 05:37PM
alegalady
Jenny (and Nikki)
Really sorry to hear that you are feeling so rough. It deos take a long time to get over the treatments and I think that having only finished in July it is understandable that you still feel like s..t.
Most people are receiving treatment for months after major surgery so I suppose that in retrospect it is not surprising that it takes time to recover. I think it took me at least 6 months to feel anywhere near normal after I finished everything.
I think also it is quite normal to feel frightened of every ache and pain and assume that they are caused by secondaries. I think it was John Diamond that said "Other people get headaches-I get brain tumours!" Once the treatment is over we feel as if we have been abandoned and our bodies are left to their own devices to cope as best they can. This in itself is mentally draining
Without wishing to sound patronising I think you will come out of this phase and look back in a year from now from a completely different perspective. I do hope so.
all the best
Lindsey
(No Subject)
posted Mon, 06 Sep 2004 08:00PM
alma
I too am not the same 21/2 years after treatment. I sometimes wonder if it was worth it! I have just started zolodex and am aching again and feeling tired again. I felt better after finishing with Tamoxifen, but its starting again, and tomorrow I will be starting Arimidex. My character has changed to characterless, I find my sense of humour is dissappearing and my confidence seems to have left me. In fact sometimes I'm a jibbering idiot, the words and thoughts are in my head, and rubbish falls out of my mouth, somedays I also have trouble leaving the house. I still only work 10 hours a week and then I have to have a sleep in the afternoons to get over work! I am 49 and feel finished. Yes I know exactly how you feel. But tomorrow is another day week or year and it has to get better??????
(No Subject)
posted Mon, 06 Sep 2004 08:23PM
Becks
Hi Jenny
Cancer is a life changing experience and I'm not the person prior to diagnosis. The article that is mentioned by JJ is fantastic, I have read it several times now. Gradualy things do get back to 'normal'. I felt lost and fragile when the treatment ended and wasn't quite sure where I fitted into the world anymore. I was much less confident but now I feel stronger that ever. Do you have support group ? I found that mine coupled with councelling as really helped me.
Sending you a big cyber hug from Becks xx
(No Subject)
posted Mon, 06 Sep 2004 08:44PM
dianes
Hello Jenny,
I could have written your message myself. I finished treatment in April and have felt like c..p ever since. I have loads of support from family and friends but just can't seem to get my head around it all. I burst into tears anytime, anyplace anywhere! I am having counselling at the moment which I find is helping a little and as Becks says, I find my support group helps too.
I really think that I was in shock for the first three months as it all seems a bit of a blur and I imagine that is the case for most people.
So, no you are not alone with your feelings - there are lots of us who feel lousey - it sometimes seems as if everyone else copes so much better than I do but I am sure that is not the case - they are just better at pretending!
My counsellor assures me that it WILL get better and I am hanging onto that.
Di
(No Subject)
posted Mon, 06 Sep 2004 09:00PM
lou
Hi Jenny,
Your email did strike a chord with me too. I've not had radiotherapy but have had chemo and no end of surgery over the last 2 years and feel the treatment is finally over now having had my (hopefully) last op 4 weeks ago.
I do think you are being very very hard on yourself - it is ONLY 2 months since the end of your treatment so it's no wonder you still feel so low. Even without radiotherapy I found this whole cancer thing a very traumatic experience and I don't know about you but I don't think there is one part of my brain or body that hasn't been affected by it!
I'm certain that bubbly, active, trendy mum is still there, underneath the emotional scars - she just needs to be brought up to the surface again - gently.
And it sounds to me like you are now ready to reclaim your life and just need a bit of encouragement from others who have been there too and know there is light at the end of the tunnel.
Most important, have a bit of fun - go get a silly video and a take-away pizza (healthy eating doesn't have to take over completely!)so you and your 16 year old can sit and have a giggle together.
I also found that really forcing myself to go out for a walk - even just to the corner shop and back for a magazine - helped to break that cycle of inactivity that drags you down. Even when I felt very weak from chemo I consoled myself with the fact that it was only temporary and that I would recover. Eventually my walks got longer and more adventurous!
I am also fortunate enough to live near the Bristol Cancer Help Centre and got to experience also types of therapy - you might find some healing therapies help to let go some of the emotions that keep you down.
I found holistic therapies like reflexology and acupuncture much more satisfying than a visit to the GP because these therapists are much more concerned with the whole you and you can relax with them - they are not trying to push you out the door after the regulation 5 minutes. But the down side is they are not cheap.
6 months after chemo, when I felt ready for it and had proper hair again, I also went back to work and that was the biggest help to me. My boss isn't big on TLC so after the initial "How ARE you?" greetings it was very much back to business so my thoughts were focused on other things.
I know it is very hard to motivate yourself when you feel so lethargic and down but you will get your energy back and you will get your life back. Honest, you will!
Take care. Lou.xx
JennyG
posted Mon, 06 Sep 2004 10:55PM
pamelap
July 04 is very recent. It can take a long time to get over the huge experience of BC. I'm eighteen months post treatment and only now am I getting a few good days. Most of the time I still suffer chronic fatigue. All I can say is that it does get better, I am not as bad as I was six months ago. Some people get better quickly some more slowly. At the stage you are at it's much too soon to know whether you'll be like me or like others who are luckier.
I thought I'd be better in a few weeks - month or two - it comes as quite a shock that it doesn't always work out like that. Also, I think lots of people find it very hadr once treatment finishes. I was defintely more depressed at that stage than at any stage during treatment. It's like you somehow have to keep going while being treated, then it all stops and it is quite a big change.
If you feel very low, see your GP - councelling and anti-depressants can help. I've posted loads on all my wretched chronic fatigue - you can probably spot my postings on much earlier pages. One thing I find really good is to look back several months, rather than just a few weeks. That way I actually notice the (smallish) improvement.
(No Subject)
posted Mon, 06 Sep 2004 11:04PM
Sandie
Yes Jenny you have summed up what many of us feel. I finished treatment in April & still battling with trying to lose weight the steroids helped me put on (3 stone) and the lack of energy. But it DOES very VERY slowly get better believe me. I have had a very busy & stressful week at work then a busy w/end - even had a small dinner party! I was totally knackered but kept going as I am determined this cancer will not change my life! It does its best to but I am sure we can eventually get back to normal. I hate to look at myself in the mirror - but the hair is growing, it is better than last week & the weight is VERY slowly going down - if we had cooler weather I am sure I will have more energy! Or am I kidding myself?!
Yes, it changes us but lets hope for the better not the worse. I want to forget the past year but keep thinking of how it was this time last year & know I am much better now, so the next year must improve things even more. Perhaps make some plans to do something that will give you & your son something to look forward to - not anything too taxing but a little treat - perhaps buy something new & trendy as well. I can remember recently becoming very low & depressed but lost a liitle weight & it really boosted me, so little things do help. Chin up, keep going & logon to this site for support - it'll get better - really.
(No Subject)
posted Tue, 07 Sep 2004 08:30AM
Jonesy
Dear Jenny,
As someone who finished treatment Almost three years ago I can tell you that life does settle down. My life is definitely not the same as before and I wish with all my heart that this hadn't happened but it did and what you will find in the future is 'not the same' doesn't have to mean bad. I am now 43, I have a three year old step grandson who comes to stay most weekends and I work full time, although I know this cannot help you at the minute I just wanted you to know that there is life after bc - different, but in my case definitely still good and I hope that you will all soon be able to understand what I am trying to say.
Good luck to you all
Jonesy
(No Subject)
posted Tue, 07 Sep 2004 12:38PM
JJ
Jenny, can I apologise for not having a lot of time when I replied to you and so didnt get to say what i wanted to. I did hope the article would help you tho, and its much more eloquent than I am.
Every time someone says the following sentence to me I want to poke them in the eye with a sharp stick so I will understand if you get this urge to do it to me too..... "Its still early days." (AAAaagghhh, felt it!)
"How CAN it be early days! I've done soooo much over these last few but very long months!!!" (Yes, I can hear it being screamed at me - assuming you have the energy to).
Yup, and thats why. We were grabbed, slung onto some kind of fairground ride (rollercoaster or merrygoround??) and ridden round and round and up and down and then thrown off. And we think we will get up and just walk away as right as the day we were slung on it.
There will have been so many changes in your life....
a life threatening diagnosis,
surgery,
chemo,
hormone treatment,
radio therapy,
support or not from people and so changes in our relationships, changes in our routines,
maybe long periods off work, changes in our attitudes,
grieving for lost flesh, time, hair
changes to your apearance,
all those new things that take up time like being a constant hospital visitor
new worries about our frailties
afraid we have let people down
guilt for being poorly,
..............................
What is happening is normal. And also the normal thing for most people is that over the next yr you will get more normal back into your life. That may mean big jumps forward at times and smaller ones at others, and even the odd retrograde step..... BUT you have a good chance of getting there.
CAn you look into the idea of a course called Look Good Feel better? Its usually run at cancer centres. Its a charity funded by toiletry companies and consists of a couple of hrs in a small group and everyone is given a huge box of full size toiletries and the ladies show you how to use the stuff. I found it helpful and cheering to try things I didnt usually use.
What about starting a short evening class in a recreational subject?
Our local school does 1 day workshops in such as Tibetan head and face massage and also Colour and image. Or whatever you fancy. Ask a fiend to go too. Maybe just a small step towards getting out and about a little more.
BCC does a session called Headstart where they help you with wigs and scarves and fringes and such if you feel like it might help til your hair has grown back enough. Some cancer centres do similar things also.
Feel free to email me if you wish
JJ
JJ
posted Wed, 08 Sep 2004 06:38PM
Molennium
very useful comments as ever, I also loved the typo about bringing a fiend with you to tibetan head massage or colour and image.
I'm pretty fiendish, even though I am furry,
Mole
Mole
posted Wed, 08 Sep 2004 11:07PM
pamelap
Was that a typo? Should it have been --- I'm pretty fiendish, even though I am fury --- ??
Nivr cud tippe
posted Thu, 09 Sep 2004 10:40AM
JJ
I think I am the bloody fiend actually.
I had raging PMT plus worrying about stuff. I must be a total joy to live with. (To know me is to love me.....I dont think).
Mole, are you furry cos of tamoxifen or is it a reference to your nickname?
(no subject)
posted Mon, 13 Sep 2004 01:31PM
mand67
Dear Jo,
We are so alike, you and I. I do nothing but worry, sleep and cry too. And I'm on the secondary cancer worry thing at the moment as well. (at least I'm not thinking about what a b****** my ex is....until tomorrow!!!!).
I'm so sorry that you are feeling the same as me.....I had no idea from your emails. We WILL be strong and get through this. I wish I could jump in the car and give you a big hug too!
All my love and cyber hugs.
Mandy
(No Subject)
posted Tue, 14 Sep 2004 07:12PM
JennyG
Thank you to all you girls who replied to my posting. It made me feel so much better that I'm not alone in this and that it's natural to feel how I do. I thank you all for the bottom of my heart.
Mandy, I think of you often and hope things are improving for you too. We will be strong, we will survive all that's been thrown our way and live to tell the tale. Keep up the spirit Mandy. Love JO X
shattered
posted Tue, 14 Sep 2004 07:33PM
elaineuk44
Hi everyone. Finished all treatment in Feb and still feel like poo. Just getting up somedays is enough. Some days are not too bad but if I'm having a bad day and have to go to work then I get no sympathy at all......and I work in the CARING profession as a Nurse!!!!! One of my residents had a mastectomy 20yrs ago and I get more understanding from her than the people I work with. Things have got so bad that my GP has put me off sick again with depression as being tired all the time finally caught up with me and I broke down at work on Sunday.I will get better but at the moment I haven't the energy. My GP said I was so strong through the treatment that now Ive run out off steam.He was surprised that I hadn't cracked up earlier. God Bless you all and take care. Elaine
not the same any more
posted Wed, 15 Sep 2004 06:47PM
freddybird
hi i have been reading the message jenny left i feel just the same i am 55it is 3years since i went through all the tretment for breast cancer and my life has changed dramaticley i have undergone councilling and is still on going in trying to cope with the after effects of the chemo and radiotherapy it effected me badly i became a diabetic because of it i suffer from mild agrophbia some days i simply cannot go out it makes me feel sick just to step over my door step i have no self confidence i have little trust in people i get depressed i take antidepessants i get very tearful i cannot talk to family or friends as they do not understand the hair loss was terible i had a bad time accepting all that was happening to me at hospital one day a nurse said i should treat the chemo as my friend i was enraged i would not treat my worse enemy like the chemo was effecting me has anyone had much the same happened to them i would like to here from you anita
Elaine
posted Wed, 15 Sep 2004 07:39PM
pamelap
It's totally normal to feel like this at this stage. Hope you've found some of the other threads about it. I am still not recovered over a year after treatment.
glad to be here!
posted Fri, 17 Sep 2004 04:04PM
GillF
No I don't feel 'old normal' but I suppose there must be a 'new normal' which will not be too bad - when it appears and settles down-?
I am just glad I am still here - it HAS to be worth it - there is no second chance.
Glad I am not the only one who can't cope sometimes. I think it is a control thing - we have lost control and we don't like it.
What do you think?
loss of control
posted Fri, 17 Sep 2004 06:43PM
joan61
How right you are. Following my mastectomy and reconstruction in July I went through such a lot of downers I never thought I would ever get rid of dark, low and desperate feelings. I do still have them even now but not as often. So many of you all told me that it would improve - and you were right. So normally an organised and in control person I felt that my whole life, personality were floundering and I couldnt get a grip. I felt weak and useless, couldnt concentrate and basically it took me all my strength to cope with just getting through the day. Friends, the breast care nurse, family, a counsellor and of course visits to these forums have helped me regain some of this lost control and build up the strength to cope with the everyday challenges. I have an altered body, I have experienced feelings I would not want to feel again, but Im here, able to get on with my life and see some things with a new perspective. Breast cancer has taken something away from me but it has also given me a determination to live life to the full!
best wishes to you all
Joan
Gill
posted Fri, 17 Sep 2004 08:05PM
nj
I agree. During treatment I felt that cancer had taken over my life - which it had in a sense with the endless trips to hospital. Now I feel as though I'm getting some control back, and even if this is merely an illusion, I'll run with it as long as I can.
difficult coping
posted Sun, 19 Sep 2004 09:13AM
freddybird
hi i am haveing a bad day is any one eles i feel very isolated no one understands unles they have been through it and with the best will in the world my family and friends have not been through it i just wish i had a close friend who had and then we could take together and we could commicate with each other i have been very tearfull very depressed lost all my energyit is a great effort to some times to shower and dress because of the chemo i suffer with mild agraphbiai cannot stepfoot out side my front door on my own i have to really fight it i have lost all my self confidence i am very insecure i have put on weight i feel as though i am a bloody reck i am on my own so i have no one to talk to i have one good friend but i think even she has had enough of me i believe because she is very strong she thinks i should be but life does not work like that is there any one who fancys haveing a winged about the way cancer has effected you please get in touch <email address removed> with respect anita
(No Subject)
posted Mon, 20 Sep 2004 03:38PM
JJ
Have you considered counselling, BCC Peer support or getting your BC nurse to call round.Or talking to your dr about a course of anti depressents even? I agree, it sounds like you need to talk and to be listened to.
Contact me if you wish
JJ
feeling low
posted Mon, 20 Sep 2004 05:36PM
jenny.jm@btinternet.com
I have been away from these boards for a little while now I thought i would try it out there on my own silly me not really worked!!! I still need a lot of support over a year from my treatment. No wonder we all feel so low at times we have been poisoned and fried how quickly can we get over that. But i think the worse side affect is what it does to our minds do the thoughts of cancer ever go although it does get easier it dosent seem on my mind every miniute now i can concentrate on other things now. I have just joined a group called bosom friends although i have only been once the ladies there are very nice some are out of treatment 6 years but still have the same fears so i dont think it ever really goes away we just learn to control our feelings, although it did put my mind at rest to know that i am not really insane we all seem to think along the same lines. FREDDYBIRD is there not somewere that you could go to get some support that you need just sharing sometimes is all you need. Reading through this thread goes to show that there are a lot of caring ladies out there willing to help anyone. x
Anita - freddybird
posted Mon, 20 Sep 2004 07:59PM
pamelap
I have often had those feelings too. It is very hard when you are alone. I am still not recovered from treatment a year after it ended and somedays I cannot believe I will ever get my life back. When I am alone everything often gets out of proportion and the simple things in life that make life worth living seem to be very far away. Other people have mentioned isolation too, and I think it is about the worst aspect of being ill. I have had to change my expectations of what life can be like and many of my friends can't understand this at all. It sounds like you are getting some help if you are taking anti-depressants but maybe the dose is not right or maybe you need more help than you are getting? I have need endless adjustments to my medication to keep my mood OK without the dreaded side-effects and I have lots of therapy as well. It is very hard work making sure one doesn't go under with it all and it is hard when there is no energy to do it all...... I have posted quite a lot about depression and chronic fatigue - if you look back through the pages on this forum you will find my postings. Hang on in there and keep posting here.