Not coping
Not coping Hi all hope you are doing well. I thought once the chemo and radio was all over I would be able to get on with my life and start enjoying myself i am still have herceptin every 3 weeks and even though I am pleased I can have it I am fed of going to the hospital all the time.
I feel I am not coping at all most night I lay in bed and cry myself to sleep I live in fear every minute of every day that it will come back and it doesnt help that my good friend who was diagnosed 5 years ago has just had a reacurance in the bones she has 2 young boys and I worry for her all the time. I hate worring all day everyday and I know I shouldnt I may be one of the luck ones who never has a reacurrance but I just cant get the thought out of my head. I am so scared of dieing I am terrified and I dont know what to do. I have had councelling in the past when first diagnosed and it didnt help.
I feel I cant talk to my family as it will upset them and my partner never seems that interested when I want to talk of when I am upset he just tells me not to think like that. (easier said thn done)
How do you all cope? I go out all the time have fun see friends go shopping act but I still think about it all day everyday.
I am also so tired all the time which gets me down I cry for no reason this is just how I was before I was diagnosed depressed, tearful, tired so I worry even more that is has come back. I also still have so much pian in my other breast it hurts all the time it feels like a stinging pain. I mentioned it to my oncologist a few months ago she was not keen to do any tests as I have had 4 scans since I was diagnosed but in the end she said I could have a CT scan but she wanst keen on me having it so then my family talked me into not having it and waiting to see if it gets any better but it is now worse. I hate living like this sad all the time and in pain I just want to feel my age and have fun with no worries in the worls like most people my age but I know this is not possible.
So sorry for the long message
Love Clairemmx x x
big hug Oh Claire
Sounds like you need a big hug… you seem to be struggling dont you?
have you met any other people down there in london who have gone through the experince of breast cancer that you can talk to and share your fears with? I would be lost with out the girls on this site who i meet up with…
Are you close with your mom? can you talk to her? I remember her being such a lovely caring person when she came to collect you from the YWF in london.
Why dont you go ahead and get the scan done that the onc suggested to put your mind at rest with these pains?
I can remember being in constant pain until my macmillan nurse sorted me out some better pain relief and now finally after 2 years of suferring… i am relatively pain free.
Is there anywhere near you, perhaps at the hospital where they have a drop in centre for cancer patients? might be worth looking into one of those? they might be able to offer you support and advice.
Claire… i really dont know what else to say to you… i just wish i could say dont worry and all that but its not that simple is it?
Your welcome to come up here you know and have a night out with us girls… you could stay at my house… you already know me and kim and it might do you the world of good…
thinking of you Claire… feel free to Pm me on the other site for a chat anytime…
Love and ((((((HUGS)))))
Jakki
xx
Hi Claire,
I can relate to how you are feeling and I wish there was a magic answer that could sort us out. If you look at my profile you will see my info and if you look in the ‘After treatment has finished’ forum you will find a thread started by me a few weeks ago called ‘should be happy but am terrified’. I hope if you read that you will know you are not alone in the way you are feeling.
I’m having a rubbish weekend as it was this weekend last year that I found the lump. That night last year I cancelled a night out for my friends birthday and last night was her birthday night out. I went but my heart wasn’t in it and I just keep thinking that, like you, I’m tired of putting on a face. A lot of the time I do genuinely have fun and sometimes even forget about ‘it’ for a while but it is always there. I was feeling really good and positive for a while until this weekend and I’m now feeling a bit low; I hope it’ll pass soon. Wish I could say something to make you feel better Claire but please know that you are not alone in the way you feel. I too am on the ‘other site’ under the same name if you feel it would help to chat. I won’t be offended if you don’t!
Take care, Carla x
It’s not over 'til it’s over Hi Claire,
Don’t beat yourself up for finding it difficult to get over your cancer treatment. If it feels like it isn’t over that’s because it isn’t: being on herceptin is definitely still being in treatment. I went back into preventative herceptin when I had pretty much recovered from the whole cancer experience (a long story) and it was alot harder than I had expected.
First of all, herceptin does cause fatigue. I felt alot of the time like I was jet lagged. Much of the tiredness ended about six weeks after my last treatment. It can also cause achiness. If you are having problems with insomnia, make sure that you get it treated. I waited and tried to tough it out and that was a big mistake. Eventually I started taking one trazadone tablet a day for the two days after treatment and that was enough to break the insomnia cycle. Herceptin is a wonderful drug in terms of improving the odds, but has alot of potential side effects, see emea.europa.eu/humandocs/PDFs/EPAR/Herceptin/H-278-PI-en.pdf
Things will get better when you are off the drug.
Second of all, you are going back to a cancer hospital treatment room every three weeks, which makes psychological recovery nearly impossible. I started my herceptin privately and got it from a nurse at home, but then was shifted over to the NHS, which was great financially but psychologically really rough. NHS cancer wards are not happy places. You just have to grin and bear it.
Once I accepted that the treatment was really affecting me, I found that I was much easier on myself and felt much better. I was still frustrated that the treatment lasted so long, but more realistic about what I could do.
Hi Claire Oh Claire, I am so sorry that you are having such a rough time of it.
You are NOT alone as i think it wasn’t until i had finished treatment that everything i had gone through finally hit me. It hit like a ton of bricks.
As the others have said that it is hard to put the cancer journey behind you when you are still going to the cancer ward for herceptin every 3 weeks. I am sure that you are tired from the herceptin treatments and then there are appts with the doctors and then going for muga scans. No wonder we are tired with all of that going on. Are we ever really able to put the cancer journey behind us?? I think that we go on living but it has changed us forever.
To be honest, i am having alot of trouble with fatigue myself and i am not on herceptin, just tamoxifen so not sure if it has anything to do with my fatigue at all.
Claire, I hope you will take Jakki up on her offer and go out with the girls from Staffs. They are such wonderful people and will brighten your day. When they get together, they have an absolutely brill time. Trust me they send me the videos!! Only wish i was closer so i could join them. Please remember Claire that we are all here to support each other. You have my email address so feel free to email if you need to chat.
Hang in there my friend
love
karen
Hi Claire
It’s still early days, it takes along time to get your head round everything so dont expect too much of yourself.
I have been living in fear of getting secondaries, and would say that the fear is worse than dealing with it. I do have 3 small lung mets now, dx in the last couple of weeks and am starting treatment next few days, not in a terrible mental state as I always expected I would be, but quietly determined to do whatever I can to change things.
I cant tell you to stop worrying, and in time and away from treatment you will feel better, I would recommend a good night out, anything to lift your spirits is good - maybe a good spend up!
In a weird way my fear has gone, this cant scare me any more for now I just have to go with the flow.
Take care
Steph x
Your not alone Hi Claire
just read your post and its similar to my situation at the moment, I went through horrible chemo, then had an op, then rads, all through this ive laughed and joked and kept strong but now its all over (well apart from the Herceptin for a year, and Tamoxifen for 5 years!!!) im scared sh*tless, i feel myself crying alot, scared to eat and drink things because ive read in the paper that it could cause cancer, i think the sun is going to give me skin cancer and oh my god the list goes on. When i talked to my McMillan nurse she said that she had heard so many stories like ours that she was about to start a support group up. We do need this support because friends and family do’nt understand that even though weve been given the all clear or treatment has finished it isnt actually over, im sure though as time goes on and probably not until Herceptin has finished can we actually start to put this behind us, but every three weeks were horribly reminded of what weve been through, e.g. chemo
I know there isnt much comfort in my post but its just to let you know that its normal to feel how your feeling.
Take care
Tracey
xx
Lets talk Hi Claire,
You are not alone. I am posting on the other site for you so we can talk freely.
Speak soon poppit. xxxx
Meeting up Ho Claire
I have just read your messgae and my heart goes out to you. YOU ARE NOT ALONE!! A few of us are meeting up in London next weekend fopr a picnic. Would you like to come along?
Nicola X
Hi Jakki,
sorry it has taken me so long to reply thank you so much for your message I have not found any other young women who are living in London I have just moved to Surrey near Sutton so maybe there are some people near me now.
I am very close to my mum and I do talk to her but at times I just fell they dont really understand what it is like to have bc and also I dont like talking to her to much about it as I dont want to upset her.
I still have the pains in my good side I am seeing my oncologist next month so I will mention it to her. I have an appoinment every wednesday next month and some weeks I have 2 so next month it will feel like i am living at the hospital.
Thank you once again for your offer to come nad stay with you and I would love to take you up on it my partner is off to America begining of July for 2 months so I am going to need to keep myself busy. If it is ok with you I will come and stay and come out with you girls. 
I am sure it would do me the world of good.
Once again thank you Jakki I hope you are doing well
Love Clairemm x x x
Hi Carla,
Just wanted ot thank you so much for your reply and sorry it has taken me so long to reply to you. It is so horrible for all of us to live in fear all the time I just I will have ot find ways of not thinking about it all the time otherwise I am just going to never be happy and able to enjoy my life.
I will definatley PM you on the other site thank you. Take care
Love Clairemm x x x x
Hi there just wanted to thank you so much for your reply I found the web address you gave me very interesting as I have been told by my hopital that there are no side effects with herceptin except with the first dose. I have been to the doctor and she has given me some Vitamins which when I remember to take seem to be helping once again thank you so much for taking the time to reply to me
Love Clairemm x x
Hi Karen thank you so much for your message I will definatley email you I ebjoy are emails. I am going to take Jakki up on her offer I met her and Kim on a younger womens weekend away and they are both such lovely ladies I have never laughed as much as i did when I was with them. I wish you were also closer so we could all meet up. DO you have people near you with BC that you meet up with?
I hope you are doing well Karen and once again tahnk you
Love Clairemm x x x
Hi Steph,
Thank you so much for your message you sound like a very positive lady I wish I could be more like you I am sorry to hear that you have a few lung mets now and I hope all is going as well as it can do for you once again thank you so much for taking the time to reply to me
Love Clairemm x x
HI Tracey thank you so much for the post I know what you mean about not knowing whta to eat and whta is best for you everything I like I have heard people say it is bad for you. I then feel so bad for eating it but I guess if we cut out everything that was bad for us then we wouldnt eat anything. I hope one day like you said we can begin to try and put all this behind us I should be finishing herceptin in the summer so not to long to to go then another opperation and then I think I may feel a little more positive.
Thank you once again for you post I hope all goes well for you
Love Clairemm x x
Hi Mrs Salmon
Just wanted to thank you for posting to me on the other site I will reply to you on there
Love Clairemm x x
Hi Nicola Thank you so much for inviting me alone to your picnic I would have loved to have come but I guess you have met up already maybe I will come alone if you have another one Tahnk you
Love Clairemm x x x
Hi Claire
We met up today (Sat) and had a great time. If you want to meet up any time in the future just put a message up here. We can all be quite flexible about meeting up during the day and in the week if that’s more convenient for you.
All the best
Nicola X