How do they React??

I have had two days where i feel so down, weepy and not feeling well. Ofcourse like most of us i get all worried and fearful.
My families way of coping is by telling me I am fine aught to get out and work more, and they keep saying you shouldnt feel like ‘that’ your fine now.
I know they mean well but all i want sometimes is a big shoulder to cry on and someone who i can tell how much i am struggling and scared.The way they react makes me feel they minimise what i have been through.
How do your families react to you??
Hugs welcome!!

Rx

Hi Liverbird

I have only been posting on this site for a couple of weeks and my first post was to say that I keep feeling really down and miserable and cry for no apparent reason. My hubby is very supportive and gives me lots of encouagement as do my friends but after a while they say the same, “your’e fine, get out more, get engrossed in your hobby etc”. Sounds very lame doesn’t it. I just sometimes want to scream home truths at them, how can they understand the awful fear thats with us constantly and never goes away. Have become a dab hand at pushing it to the back of my mind but it always surfaces, its like squashing a pillow into a pillowcase thats too small, sooner or later it will burst open!!!

I am sending you many ^hugs^.

Love Jan

Hi guys

the simplefact is - they do not and cannot understand…Lucky them!!!

However, my hubby set up the ‘wifeograms’ - a series of e mails that were factual and open, all contained full (and I mean FULL) detals of all my treatment and also links to useful sites for those that wished to know more. This kept everyone we e mail in the loop - and the feedback was excellent.

I feel they at least know more than they did!!! He has now set up a blog for anyone that is interested.

I too push it to the back of my mind, and now nearly two years on and on no treatment i find the days are better. I always remind people that ask that cancer is never ‘gone’ and that ‘it may come back’ - but the dark thoughts are for me (and occasionally) my other half.

I feel it is important to educate people on this disease as we go through our experience, only from that can we continue to move forward.

Best wishes - and hugs -to you both

Janxx

WANAS, what a good idea. Its so hard to describe how one feels without sounding sorry for ourselves. I don’t think any of us actually feel “sorry” for ourselves or appreciate anyone’s pity, it really is the “scare” factor thats the problem. Its not like having a tooth out and the problem has gone away for good.
Wished we could send a hug symbol, my son is able to do this on MSN.

Love Jan

My problem (one of the many) is that I have no-one to talk to…my poor family have been through so much worry that I dont feel I can bother them more with all my fears and my friends - tho v supportive last year - want to change the subject if I say anything and I can almost hear them sigh, oh God, not this again. I was telling an ex about it the other day, knowing he was quite good when faced with these things but he just told me to “chill”.

So I am now at the 1st year anniversary and facing 1st mammo with great terror as I fell unable to “move on” yet but cannot tell or cry to anyone close to me
Laine

Hi

You may find of interest Breast Cancer Care telephone support groups, they give you an opportunity 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. For more information on telephone support groups and other Breast Cancer Care support services see link breastcancercare.org.uk/content.php?page_id=44 or telephone 0808 800 6000.

Kind Regards
Sam
Moderator
Breast Cancer Care

Hi Laine

Don’t ever feel alone. There are so many “friends” on this site who really do understand exactly how you feel. Its only the girls that have actually gone through this that appreciate how awful - mentally and physically - this disease can make you feel. I am 3 years down the line, have just had my 3rd annual mammogram two weeks ago and awaiting the results. I think as time goes on the yearly mammos bring everything to the forefront again and the yukky feelings are speeding around our bodies having fun winding us up even more. Given time you will move on but it will never completely go. Try to learn to accept that you will have many good days but now and then a few bad days will creep in. This is perfectly normal so just come on here and scream and shout to get it out of your system. We are all here for each other. I never thought I would join in a “forum” such as this but I am so pleased that I plucked up the courage. It is so easy to really vent your true feelings without embarrassment or ridicule or people telling you that your being silly etc. Anytime you want to chat just get typing.

Love Jan

Love Jan

Thank you so much Jan.
I just feel that I am a walking timebomb and if it doesnt happen this year then it will next or the year after. To be honest tho I can’t shake off the feeling that it will be sooner rather than later.
A part of me wishes it would be now to get it over with, I cannot put it into words really.
I did try counselling but they cannot tell me that I will be ok can they? I am such a wuss.
I thought this week - god, a year ago I was happy and fine. I know I have to learn to live with this -what if I do live another 20 years? What a waste.
So, pull my socksup, pin the smile on for another day, but only we know that the life we once thought was forever has gone for good.
Love to all Laine

Hi Laine

Yes the life we all once had has definitely gone for good but it has been replaced by another one that has taken us all in a different direction. I can empathise with you 100%, I too feel that it is only a question of time before it returns even though my prognosis is good. I give myself a good talking to frequently in that I try to live life to the full, cope with the bad days as best I can when they come, and if the BC does return, then I’ll deal with it when it happens. Try to think positive in that “today I am OK, today I feel good and today I am going to …” do something you enjoy, do something you have’nt done for ages, or doing something really silly to make yourself laugh. As long as your walking timebomb is still ticking, then everything is on your side.

If you don’t mind me asking, how old are you? Are you single or married, have a best friend, got kids etc. What kind of BC have you got?

Talking it all through will help.

Love Jan

Hi Liverbird

When treatment is all over and you are supposedly “better” it is really really really hard, I find. It is cosy being a “sick person” but hey, you get sick, you have the treatment, you get better. Don’t you? No, I never was sick, so the treatment has made me much much worse than I was before (and I didn’t have rads or chemo I’m just talking about the surgery, so the rads and the chemo make you even worse) - but, you “recover” from the treatment. Then there’s life. That’s the hard bit. Some days I feel like the undead, like I’ve been sent to limbo, like I’m not dead, but I’m not alive either - not dead, because I’m alive, and well, even; yet, still, not alive - because of what has been taken away from me, this has put me, I feel, into a place where you are prepared for death. So it is a bit like being a dying person when you’re not dying. I am a dying person because I wonder everyday is this the beginning of the end. I don’t expect a future. I live the pain of parting from my children, while they are right here, happy because they don’t know what I’m thinking. And I am a dying person because I have lost something that is so important to the living, like an old old person facing the end - as you age you gradually lose those things important to the living - mobility, strength, libido, sex. BC treatment takes some of this away from you suddenly instead of gradually, and while you’re still (relatively) young - so you’re in this limbo, and it’s not obvious from the outside.

But how can you explain all that to friends over dinner, or acquaintances in the supermarket, or well-meaning vicars who enquire after your health? Or even to tired, busy, kind, well-meaning family? Or husbands? I do force my poor husband to listen to me harping on sometimes, but one doesn’t wish to bore…and it just sounds like wingeing, which we don’t do, do we.

Family are often poor listeners with all the love in the world: they want to encourage so they make encouraging noises, but what we really need is acknowledgement, understanding. We don’t actually want someone to say “Don’t feel like that, feel like this it’s nicer”, we want someone to say, “I see, I understand, yes, it is serious, it has been traumatic, it is a great loss, it is not trivial, it is a terrible thing.” My dear husband does do that (because I tell him to), but I’m afraid it doesn’t go away just because he’s said that. This has been the biggest trauma of my not trouble-free life, and I can see now it’s gonna take years…(off my life?)…Interesting, isn’t it?

So - to Liverbird - maybe ask hubs to tell you that he can imagine (a bit) what it would feel like, being here. I find that helps. And from me - I say, scweam and scweam until you’re sick, you have every right, I’m listening and saying go girl.

xxx snowwhite

To Jan
I do try to do as you advise and manage it ok I think…I work full time which helps, but BC is still the last thing I think of at night and the first thing in the morning.Dont get me wrong, I dont feel alone. I know that everyone who posts here ( and those who dont) dreads the mammos, dreads the results, worries that each pain heralds the start of something and that absolutely nothing can make it all go away. Sometimes I think its like a bad dream and it hasnt really happened…
My prognosis was"good" but I have read here that that is not always indicative of ok times to come,often a less than good prognosis can be better in the long run. I am 52, with good friends and close family and laugh a lot with them. To be honest, I’m not even afraid of dying - just not yet!! I had the ductal kind, no spread and know that it could have been loads worse - god knows how scared I would have been if prognosis had been poor!!
I know that all the research tools etc have to go into finding better treatment but I wish someone would come up with something to lessen this daily fear.
Love to you, thank you again for understanding, Laine

Dear Laine and Snowwhite

This dreaded disease affects us all in so many different ways. I posted a new comment this morning “my posts coming back to bite me” which the event hit me hard. Life is so precious (have a severely physically disabled son who was not supposed to live past 5, told he would not make it through the night twice but he is now almost 21) and can so easily be taken away and I do try to take my own advice, easy when everything is running smoothly but when things go wrong its like the whole world falls around my shoulders. I think we have all learnt to live with BC and cope as best we can with the day to day things. Thank goodness for this site, I have become a daily reader and poster to it because its somewhere to talk to other understanding people. I no longer have to make my family and friends worry, or feel uncomfortable or make them anxious on my behalf.

Keep the courage going girls

Love Jan

Arh
just read some of your postings so helpful just to have people who are in the same boat and can empathise with you.
Snowwhite you really have said exactely how i feel and put it so well. Thanks.

I have signed up for some phone support but it starts in Oct i think with BCC.

Right off to do a walk now and try and shift this weight.

Keep ploddin on kids and enjoying the times we feel well and may we all have many more of them.

Rx

Some words of encouragement from a 68 year old grandmother and the wife, mother and mother-in-law of doctors. I was first diagnosed in 1990 and this April I had a recurrence in the same breast. On both occasions I was very disappointed and angry particularly at my husband’s reaction. The first time he went off on a 3 week fishing holiday and this time his attitude is well you dealt with it very well last time… Not once has he put his arms round me - if I had been his patient the concern would have been totally different. My daughter and her husband were good initially on a professional level. My other son never mentions it. Looking around at my friends and family for the second time I do feel that a lot of people are apprehensive and just do not know what to say. Some people just cannot cope with illness and I should not judge them for this but accept them as they are - even though I could hit them at times!!. And some people seem to choose to have short memories. Once they see you apparently coping with your daily life they assume you are fine and being the strong character that I am, they do not realise I am living in the constant shadow of BC. Unless you have had it nobody knows what goes on in your mind and how you deal with it. So…I decided in 1990 that I had to look after myself as best I could in what I hope is not a selfish way. I have done and am still doing all the things that are on my wish list wherever possible without neglecting the family. I have to do these things while I still can. There is good quality of life after BC (except for the time around the 6 month/annual checkups) and I mean to make the most of it. I wish this forum had been around in 1990.

Hi Olivia

Reading between the lines, perhaps your family are able to show concern to their patients because they are not emotionally involved, whereas when it came to yourself they probably knew too much medical information and didn’t know how to deal with this on a personal level. My husband spent the night of my diagnoses down his workshop with a bottle of wine. He had far more of a problem accepting my BC than I did. My Dad was brilliant (he himself at the moment has terminal cancer, doctors are amazed that he is still with us), my mum was only concerned with how she felt, my brother just cried, my sister-in-law avoided me for a while, my best friend was very positive but the best one was my mother-in-law. Just sat and held my hand and hugged me whenever she could and still does - 3 years down the line.

I quite agree with you too, there is good quality of life after BC, just in a different way. I think we all appreciate the finer things, sitting in the garden watching the birds and the bees, just gazing at the flowers and taking the time to enjoy, something I think a lot of people take for granted.

I send you a big hug and admire you for your optimistic approach.

Love Jan

Hi all

Can I echo a lot of the sentiments expressed in your posts? I was diagnosed last year and am coming up to my first mammogram since diagnosis and my operation. I have kept well and have returned to work full time. I really enjoy my job. I know I look well, but for the past week have been really tetchy and feel sometimes as if I my head is going to explode.

I know what is causing it (check-up and waiting for mammogram). I know that everyone means well, but the next person that says to me – glad to be back to normal? or you look well, I may well get done for murder!

I have brilliant support from family, friends and work colleagues but unless someone has been there they cannot get inside your head. Everyone says I have been really strong for the past year, I know I am a strong person, sometimes I wonder how I came through it all (faith and prayer was a tremendous help) along with all the support, but I feel I am wishing the days away until my check up. I feel as if that will be the first milestone over and I can move on at least to the next one.

I am a half full glass person (particularly a wine glass) but will be glad to get over this hurdle.

Being able to share feelings with others on the forum relieves a lot of the stress because everyone is in the same boat and understands.

I find I tend to say more of what I am thinking now – with out offending people I hope! I just don’t have the patience for some of the petty things that people say and do to others. Life is too precious.

Love and hugs to everyone

Take care

Thistle

Hi all,
I need to share this with people who understand and feel that this thread suits the type of help I need.
I was tearful today when I was consulting my GP about my present condition and you need to know now that I was diagnosed a year past in February.Invasive tumour, Lumpectomy, triple neg., no node involvement, chemo, rads and all clear at 1st year mammo. This March I was fit enough to return to work and although still very exhausted from the treatment I was getting stronger every day and feeling as others on this thread have described. i.e. It may come back. I will spoil myself and live life to the full and appreciate the sun and the flowers and my family. I’ll try to put it at the back of my mind…if I can. etc etc…
There was much to be hopeful about. I started to concentrate on getting fit, improving my diet ( five a day and all that,) planning a garden makeover, planning to travel Oh the possibilities!!!
I started to suffer from back pain and reported this at my next checkup in May. I had to have a bonescan. Long story short,12 weeks ago after waiting ages for the scan and getting really worked up about the results I was told I have no cancer. I have a spinal crush due to osteoporosis. This means my back is broken because one of my vertebrae has crumbled. Painkillers are prescribed and I’d to return in 3 weeks. So I assumed that meant that after 3 weeks I should be better. I’m in more pain, the doc at the breast clinic asks about my meds, makes no comment and tells me to return again after a further three weeks.
I, in the meantime, research osteoporosis and decide to be proactive in dealing with this condition. I do Yoga to strengthen my bones and I attend a chiropractor in the hope that he can take away the pain because the painkillers are not. My life now revolves around painkillers, clockwatching to take them at the right intervals. I can’t get a decent night’s sleep as the pain is worse then ( all things are worse at night as you all know only too well) My husband is telling everyone I have the ‘All Clear’ and people are delighted for me?!!!
I return to the breast clinic after three weeks and at last see my consultant, a known face after so many strangers. The pain is still bad and here comes the painful bit.
He tells me he needs to refer me to an orthopeadic surgeon because he is thinking I need to have an operation to put metal poles in my back!!!
I’m sorry this is a bit of a saga but I need to ‘download’ it all
That news was given to me four weeks ago today and he told me not to do Yoga and that the chiropractor won’t help (He goes to a chiropractor himself for a rugby injury so he’s not against them)
Gutted!! To say that the rug was pulled out from under me is an understatement!
He prescribed morphine for the increasing pain but when I used it I was sleeping all day, no way to exist. I tried a lower dose but it wasn’t controlling the pain so I returned to my other meds and suffered the daily pain and the sleepless nights.
Three weeks on and I haven’t heard about my referral and I have had the most horrendous weekend with pain so bad that I am crying so I phone the consultant’s secretary. She doesn’t have a sympathetic bone in her body! “Mr Murphy has been on annual leave…Mr Campbell (orthopeadic surgeon) has requested your notes…Mr Murphy will talk to Mr Campbell this afternoon…no you won’t be called back today . Mr Murphy has a meeting and a clinic…” I could feel her horse getting higher and higher as her voice did, (My God I was only asking if I needed to stay near the phone) What beggars belief is that Mr Campbell and Mr Murphy are in the same hospital. Perhaps Mr Murphy took my notes on holiday with him for bedtime reading(??) She phones the next day (OK?, I thought Mr Murphy couldn’t phone me 'cause he was busy. Perhaps she holds his hand while he’s working and that’s the reason she couln’t call me yesterday) “Mr Campbell can’t do anything for you and has advised referral to Mr Reece” Aaarrrgggg, three weeks on and no further forward!! I phone my GP to discuss pain control.I now know what the phrase crippling pain means. I can hardly walk. She prescribes morphine. Not the kind that is slow release and knocks you out. This one lasts 4 hours so I can decide if I want more or not. And a stronger anti inflamatory. I could have kissed her, instant pain relief.
That was last Tuesday and today I went to her surgery for a review of my meds and I cried
Why?
Well…I turned 50 in the best of health with a very exciting future ahead. After working full time for thirty one years, as did my husband, to support and raise our children I had stepped back to part time and vowed to travel, something I have always wanted to do but couldn’t afford. The diagnosis of cancer 6 months later served to make me determined to do just that, all I had to do was get through the treatment, regain my strength and the world was my oyster.
Hey! How God laughs at our plans. I now have a body that won’t do what I need it to do and I’m now well into my second year of hospitals and treatments. I now feel that I sound selfish as I know many of you reading this will have gone through worse on your bc journey. But that’s why I cried. You see the treatment for bc is swift and well planned. You soon know what your treatment plan is and, although far away at first, you can definitely see that light at the end of the tunnel. This condition is one of old age usually experienced by elderly people who’s bodies have already slowed down. There is no treatment plan. There is no visible light at the end, just this dark tunnel. I feel robbed. This is especially hard for me after my bc has been successfully treated.
It was Snowwhite’s post about being not dead but not alive that made me post here because now I have a double reason to feel just exactly like that. I want life. I want mobility,strength, libido, sex and just as they were within my grasp at the end of the bc tunnel they have been snatched away again and this time I don’t know if they will ever come back.
I’m on a real downer.
Ali

Hi Ali

If I could hold your hand or give you a hug I would be there. Sometimes I think God tests us for something only He knows about in the future but doesn’t it make things really hard in the here and now. Why some people sail through their lives with hardly any problems and then others get everything including the kitchen sink thrown at them I do not know. It always seems to be all at once too. Just try to think that tomorrow is another day and hopefully it will be a little better, if not then there is the day after that. Sooner or later you WILL get it sorted, you WILL feel better and you WILL do the things you want to, maybe not as you wished but in a different way, just keep pushing and pushing until you are happy with what is being offered to help you. When you hit rock bottom there is only one way to go and that’s UP. I am trying to send positive thoughts to you - keep talking to us it really does help.

Love Jan

Hi Ruth,
Thanks for your hugs and thoughts. I knew you would understand the frustration I feel.
Love Ali

Hi Jan
Yes, I know God’s plans will become clear eventually and I search for peace there. I know there is light at the end of this tunnel, I just can’t see it yet so in the dark I reach for your hand and find comfort in your positive thoughts.
Thanks
Love Ali