hi i am new to this and not so good at using the computer, but i really need to talk to someone who is going through the same thing. i have never felt so lonely in all my life. i am on the 7th lot of chemo, and its like i am coping alone, although my house is an open one and relatives and friends come and go, its as if they don’t understand or choose not to, its like oh well she is on her feet so she is well, i just want to scream and as for him indoors its like banging my head against a brick wall. ahhhh!!! does any one feel the same or am i being petty. i have not had one day in bed since i started this horrendous treatment and now i feel like running away as I’ve still got 5 more months of this.
is any one out there feeling the same!!
lv Tillie
Dear Tillie
Firstly, welcome to the forums where I am sure others will be along shortly with support.
I am sorry to read that you are feeling this way and wondered if you have heard of 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 this and other support available to you 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>.
Best wishes
Lucy
Hi Tillie,
I am so sorry you are feeling so alone, but rest assured you are never that. I think to be realistic you need to ask the question who hasn’t felt like they want to run away at times. That is the thing about this journey we paint our faces on to show we are ok. No one really knows what goes on in our head. Sometimes at nite, when i’m sat removing make up I feel exactly that, that I’m taking the face off and inside I’m aching so much. It isn’t all the time. But when that feeling is there its horrible. It’s not easy babes but you will get there. I just think the bad days, when you have a good day you know its good!!!
Hope that helps, i’m not the best at posting
Keep in touch
The only place you need to run to is your computer some one will be here to give you assurance and a big hug !!!
Much love Trace (scottydog)
Hi Tillie
Sorry you are feeling so low, you are way ahead of me in your treatment, so I cant comment but I can say that once you have found this site you are never alone. There is always someone out there to say just the right thing, pick you up dust you down and set you on your way again. In need of a rant - rant away its what we all need at times.
By the end of today you will have so many new friends you will never want to run away and leave us.
Sending you a big hug
Karen
XXX
Hi Tillie
So sorry you are feeling so lonely - unfortunately it can be a lonely place. I have found, that no matter how hard they try (and not all even try!) unless they have been there themselves it is so difficult for those close to us to understand what we are really going through. This, coupled with the fact that for the most part we are constantly ‘putting a face on’ makes it doubly difficult.
You are also ahead of me in terms of chemo - i’ve had mastectomy and 3 of 4 chemos so far - with rads and a further 4 chemos to follow. I have days where I
am finding harder and harder to give the usual ‘yea I’m fine’ response to ‘How are you today’ - and have to confess that several times just lately I have responded with ‘I’ve got cancer and it could kill me - how do you think I am?’ - hasn’t gone down very well with most people because it’s not the “positive mental attitude” that they expect from me - but it’s the truth!! It’s onlly been family I’ve done that too - but I do find it gives them a ‘wake up’ call - this isn’t the flu’ !!
As other have said - whenever you feel the need to let off steam or rant and rave - this forum is a great place - it has helped me tremendously - there is always someone who has either been through what you’re going through, or can give the perspective from the other side of the fence (which is equally helpful if you have a non communicative family member!)
As Karen has said - you will have so many new friends soon you will be amazed!
Take care
Margaret x
Hi Tillie
could kick myself ! just spent ages writing a long post and its gone !!! well it maybe was a bit too deep and meaningful but basically to reiterate what everyone has said I’m glad you have come on to post as it is a great way to vent your feelings and not be branded a loon. You are quite far along in your treatment (I have had 4 of 6) have to say cruel as its sounds sympathy does wane over time . I have seen it myself too and although I dont want to have people fussing over me , as the treatment gets further along you do actually need it more .
I have gotten more detached from friends about it now and feeling as though I am leading 2 lives right now ’ normal ’ and chemo side . They dont want to hear about me all the time I’m sure and I dont want to drone on either and see them glaze over so i think i have gone more into myself about it all , apart from on here
.Everyone on here knows how you are feeling and you will get a sympathetic ear definitely .
take care
love Cally
Hi Tillie,
I’m so sorry you’rre feeling so low and alone. I really sympathise, as I’ve been there. I had a mastectomy followed by 8 chemos, 20 rads & am now on herceptin & tamoxifen. I remember when I was between chemos 6 & 7 I had a really low point. I didn’t want to go back to the hospital again, it just seemed too much to bear. I felt I couldn’t do it any more. But I did and I got through it and here I am posting to you feeling so much better. You will too a few months from now. At my low point I really started to tell others how I felt - when asked how I was I stopped saying fine and started saying how awful it was. I had some very surprised replies - they all thought I was doing OK! It didn’t make any difference to how low or alone I felt, but at least I felt a bit better for having said it.
It is a lonely journey we follow, only someone who has also done it can really sympathise. That is why this site is so good.
Take heart, you will get through this, and life will be OK again.
Best wishes
xx
hya it me tillie
i didn’t know that i would get so many lovely messages of support from you all, I’m really touched. i don’t feel so alone now as i no i can come on here. even though i ain’t to good at using this computer. at the moment it feels like I’m going it alone because him indoors is bad with arthritis and constantly complains about it, and although i do sympathise with him its getting harder, and to be honest i lost it the other day and said, I’m ill too, i have cancer, which is not like me to loose it, his reply was no you haven’t its the treatment that makes you feel ill, and basically that was the end of the discussion. i feel like I’m banging my head against a brick wall. people are in and out of my house and i end up making sandwiches and tea!! you would think that they would get off their lazy arse and make me tea!! sorry. to be honest after 32 years and married at 16 they are never gonna change are they?, and if they haven’t in the last 6/7 months i got no chance of a miracle happening. so I’m rally glad i got to find this website, by the way I’m looking like a baby budgie at the moment with bingo wings a big tummy and fluffy hair that’s trying to poke it way through my head. lol
Hi tillie
Nice to hear from you again - didn’t we all tell you you would have a ton of friends on here!! You are never alone on here - and you seem to be coping with the computer so don’t be a stranger.
I honestly can’t believe the reaction of your hubby - I’m so sorry you have that to deal with on top of the Cancer. As for the people in and out the house - STOP making tea and sandwiches for them and just sit on your backside, not matter how much restraint it takes !
I have this lovely picture of a baby budgie in my head now - so thank you for cheering me up - have to say we actually sound like twins lol can relate to the fluffy stuff on the head!
Keep well and take care - hope to hear from you soon
Margaret x
Hi Tillie and everyone
You are so strong and couragous to be so far through your treatment before you buckled, well done you, am sending you a cyber hug ((((((( x )))))).
There are so many strong ladies on this site its unbelievable, what we have the big ‘C’ and then the horrendous treatment you have to go through its amaxing there isnt a special loony ward just for BC patients.
We all do what women do ‘just get on with it’ but then people think we are ok, sometimes we are our own worst enemies. Tillie give yourself a brake you are a fantastic person and let others do things for you.
I am starting chemo this Wednesday so any tips you can give me so I can be as brave and couragous as you will be much appreciated.
GillMc
Hi Gill
I also start my Chemo this Wed so tips would be appreciated here too.
I am having 4x EC then the dreaded 4x tax, followd by 5 weeks rads.
Tillie you sound a wonderful person far too good for people who dont appreciate you, my answer would be go on strike, just look after No 1 and sod the rest
Take care
Linda
X
Hi Linda
Keep in touch it will be much easier for us to do it together, (((((x))))) cyber hugs to you.
GillMc xx
Hi Tillie
Just to say thank you for making me smile… i am also a baby budgie, not much fluff and not looking too hot right now either… i was feeling sorry for myself as i am single at the moment, then i thought lord i could have someone sitting on their backside demanding tea and sandwiches! though i am sure he’s good to you in other ways {i hope anyway). I’ve had one of those weeks where I forget everything…pin number, what i went shopping for, oh and my headscarf came loose in a restaurant and i nearly gave the next table the fright of their life!
Hang in there, you sound like you are doing amazing but there is nothing wrong with telling those who love you that you’re finding it’s a struggle… be honest and put yourself first for once and tell them to make their own bloody sarnies!
Take it easy (seriously). Carrie x
Tillie,
we all feel the same and it sounds as if you are doing better than most of us, I could not cope with an open house at the moment and anyone not sympathetic enough is subject to a sulk a teenager would be proud of.
Alot of people cant cope with illness they feel akward and dont know what to say, so they resort to “you look really well” and “your so brave”, I try to take both these with a large pinch of salt. I dont look well I look like a drag artist without the glamour and I am not brave, but terrified of everything, cancer, the treatment, not having the treatment, etc etc.
We will get through this dont worry about feeling down sometimes and let people see you a little vunerable, they may surprise you.
Lots of love and hugs
Tracey C
hya tracy c
thanks for the coments linda, i am 48 andi was diagnosed in july with bc and to be honest they really thought it was a cyst well so did i because i have had so many but when they tried to drain it they discovered it was bc although it never showed up on the mamagram which was quite frightening it only showed up on the scan. and if i am really honest i was in shock and denial were him indoors fell to peices and never listened to what they were sayin so it was a good job i listened. i suppose i am stronger than i thought, the way i am coping to be honest is denial i am going through this as if i have just had an op and i am trying to get better this must be my way of being in control. 7 months of cheomo is a long time and still more cheomo and radiotherapy till june 08, i know i have to be strong for everybody and myself, but inside i am broken but never let it show, to be honest i would like to be pampered for a week brekie in bed and dinner and t and just me time, fat chance of that happening lol!! i understand what u say is right some people cn’t hack it but couldnt they put their own feelings aside for the sake of us, lookin like a baby budgie wiv bingo wings is bad enough but has anyone seent he film lord of the rings well my grandaughter who is 11 said nana you look like gollum omg you really do. you gotta laugh or you cry! anyway hope ypou and everyone are ok, keep your chins up and dont look n the mirror or you might see gollum too ha ha, l
lv and big hugs
tillie
Hi Tillie,
Well done for posting and taking the first step in getting some friends who really do understand on board. I haven’t posted much my self as it has worked better so far for me to also, just plod on as if it were not really happening. Chemo three for me was a real downer; felt very depressed and unhappy and wondered how I could go on; or even why I should. Did though. Also sick of people telling me how well I look (feel like a fraud!) but it takes me !ages to get ready. One good thing is the wigs; always nice hair now! However without the wig my 5 year old told me I looked like Darth Vader when Luke skywalker takes the mask off!
Small steps for the tea and coffee. Leave the jars and cups out on the side and just say “if you want a cuppa honey the stuff is on the side!: mines a…” they might appreciate being able to do something for you; just ask.
lots of love, understanding, and kind thoughts
xxnina
thanks for that nina, hope everyone out there is ok. i must admit somtimes the days do feel so long and cos you dont have the energy or inclination (big word for me) to move it hard, and as for getting dressed most times i dont, i dont i stay in my pjs all day when i know i wont be getting out of the house after the treatment, but to be honest i dont care and people say things like get dressed you will feel better, put your make-up you will feel better, i think whatever, i suppose it makes them fell better because if we do that we look better, but it for their benefit not ours eh! and yeah i do get loads of people saying oooh you do look well, i think mmmm not so i’vi ve seen meself in the mirror. i got myself a wig but it itchy, so wear a scarf when i go out, look a bit like b=n la==den. lol!! most of the time i tottle around like abig baby budgie getting fatter all the time, lol!! cant fit in my clothes so bought a size bigger alright when i sit down, but got a saggy backside when i stand up, ha ha, have to try and laugh about it but gets harder to see the funny side of some of the things people say, jus wanna scream at em sometimes, ahhhhh!!
love and big hugs always
tillie xxxx
hya it me again,
hope you all ok,
sorry not been in touch , gillmc, the only tips i can give you are, wear thermal gloves before you go for your tratment as the veins in your hand will hide, drink lots of water as the quicker it flows though your system the better,suck on an ice lolly while you have your treatment it helps not get a sore mouth, ginger biscuits are good for the sickness ans also sea bands from boots the chemist, you wear them on your wrists, as does the anti sick pills take them even if you dont feel sick as they do work, ( i been lucky i havnt been sick). mind over matter helps too, i no avoidence is not always the answer but i suppose i in denial so it helps me get through this, i shaved all my hair off as it was coming out on the pillow so i wear scarfs when i go out but nothing around the house,you turn into a bit of a lizard so invest in some really goood moisturiser,
keep you mouth really clean and avoid mouthwashes with alchol in them, chew gum or sweets to keep your mouth wet as when it dry thats when you get the mouth ulsers,let your food cool down a bit before you eat it as you can taste it better , (that worked for me),than when hot , same with drinks, i’ve gone off t and drink flavoured teas now and green t, also lots of fruit and veg and dark fruits like blueberies and such are good for you, hope these tips help you , and thanks for the lovley support.
lv hugs n rainbowsxxx
Hie Tillie
I know exactly how you feel, I feel just like you. I had a mastectomy and currently on chemo cycle 3 and 3 more to go and then rads for 6 weeks. At the beginning I was determined to be positive and continue on with my treatment and just get through it all. But 4 months down the line, I AM FED UP. I keep screaming in my head I WANT MY LIFE BACK!
I have always worked full time and I have a boy who is 4years old and a husband and we are all used to being hectic. For the first time in a long time i feel useless. I am not motivated to do anything at all. I roll out of bed at 8.30, brush my teeth, get my son ready for school, drop him off, come back home and straight back into bed until 3pm when I have to pick him from school. I just feel my life is so monotonous at the moment. I can’t get excited about anything, i just cannot be bothered.
Friends and family have been fantastic, they come and visit take me out but they can’t be around 24/7. My husband was great at the beginning but after a while its like he has forgotten why I am at home full time. We both have jobs around the house but he has began to slack of because he feels I am at home all day, so i should be able to cope with it all.
I do go out occasionally on my own, but all the things I used to really enjoy, I am not into at the moment. Since I began chemo, my sense of smell has been really heightened and I get nauseous just walking though the mall from all the perfumes, so shopping is not my idea of fun or being around people with all their lovely perfumes!
Sometimes it feels like its never going to end that this feels like my forever and ever and that scares me. I am a spiritual person and a greater believer that everything that happens has a purpose, but lately I have trouble believing it.
The posts on this website keep me going and reassure me that its ok and and that it can and it will get better.
Love and hugs
Heather