Hi Truffle -Shuff,
No wonder you are feeling low. Xxx. Actually, you are doing really well, this is a really difficult stage - . It feels like the other shoe is about to drop!
We all know this is such a scary place to be and that noone can give you reassurance yet...I know what you mean about being on the alert for non verbal clues from the team!
I do hope your MRI result contains no new surprises.xxx
Once they are satisfied that they have the whole picture they can really go hell for leather and look for the right drug to tackle these mets. And usually you will feel much better once you have an idea about what is happening. So glad you have a lovely family to support you,
love and hugsxxx
Thank you so much,
its put things in perspective ,your replys are so apt, all I seem to get from clinics, is the tilted head no comment approach, but then I am searching everones every move , every raised eyebrow, I must learn to calm down a little .
Bless all you ladies with wise words ,sending you all hugs xx your support is great
Truff, I think we are all afraid of the unknown. I went for a scan of my liver in Oct. supposedly to get just a base line. It had never been scanned. They only kept checking the piece of it that shows up when they scan my lungs. They also did a bone scan bc I hadn't had one in 10 years and one bone met was showing in my CT. I know I needed this done but would rather of played ostrich. Lol I have always been thankful it's not in my liver and is in my lungs. In my head in my liver meant really bad. My mom used to always say that's the end of someone when it was in their bones, so I used to think in the bones was the worse. I've heard others say they were thankful it isn't in their lungs. I had one friend who lived 12 years with liver mets. I know another lady who is in her 12th year of bone mets, and here I am with 11 years in lungs. I have come to the conclusion that it doesn't matter so much where it is, but how your body handles it and tolerates the drugs. Try not to panic over the scan! Best of luck! HUGS! FF
Truffle shuff....you are not a lost cause!!! so sorry to hear your news but you know we are all here for you. You are not being a burden on your family but sometimes it is better to share with s, the ones who truly know how you are feeling. Ak your nurse for anything that will get you through this awful waiting period. When you know whats what next week a paln can be sorted out and you'll feel much better, i'm sure. we are holding your hand all the way. Lots of love. xx
Yes we are , but I am sooo grateful for the shared events that are posted on here , and the strenght shared xx
keep well ,keep warm xx
Hope all is well with everyone this morning, just to say thank you for posting. I am at a real low , diagnosed with Bones, axilla and ? lung, now last week had MRI for ? liver. now this one is very scary for me , dont know why ? just is, get results next Friday, Sorry but not coping, although I feel fine , I feel as if im on the big converor belt ,and things will end soon. No good to family so think I will ask nurse for anti depressents and or sleeping pills . So soory to p**s n moan , in many ways I am very lucky but cant get my head round this one some how, putting all this worry and misery on my lovely family .
Am I a lost cause xx
enjoy your day xxx
OMG I have just come back to this and I can't believe the response. Up again, unfortunately, but thank you all sooooooo much for replying and yes it does feel so much better to know that my down days (or nights!) seem to be normal. Thank you thank you... xxx
how are you feeling now? Was reading back over your posts ? I think metastases do this to all of us...hopefully your new treatment plan has given you strength? I never ask re prognosis as I really dont believe they can predict. Am sorry your onc said two years...if its any help...16 years ago I was told it would be back within 2 years....I had over ten cancer free years...they cant tell. Travel hopefully.xx
hi Judy, just wanted to say Hi and welcome. As you can see from the posts you are not alone. I cant really add more than the others have said. I am also trying to take their advice and not listen to statistics. I have never been 'told a time' and i have never asked..i'm just too scared to hear the answer. I just kep taking heart from the lovely ladies on here...i hope you can too. Lots of love. x
You have had a lot to cope with over the years so, in a way, you've been here before but this is different. It's a frightening time but it's reassuring to read the experiences of the many friends here as an antidote to hospital information and to find out that there's a lot to hope for. My son is 32, told me he found it hard to know what to say, but I told him 'Just be there, it's the best thing you can do'. My daughter needs some support at the moment but she also supports me. My grandchildren just know I'm 'poorly'. Take one day at a time, take it in bit by bit and you'll find a way to live with all this. B xxx
Stacey, My mom's friend was dx with brain cancer and given 3 months to live. She lived 9 years! She had quality life. Only was real sick the last 6 months. FF
Judy m, My goodness you have had more than your share!!! I was dx in 1995 with primary bc. In 2005 l was dx with secondaries in my lungs and just about every lymph node in my chest. The middle lobe in my right lung had a partial collapse from the start. My oncologist told me it wasn't an immediate death sentence, that I had about 2 years! What I didn't realize at the time was that he was quoting statistics, it was not based on my personal case. At first I was filled with an instant loneliness. I live in the USA and I was dx the day before Thanksgiving. The day after we traditionally decorate for Christmas. My family was decorating like they were mad. They drug out decorations we hadn't used in years! They went shopping for more. You could tell they thought it was my last Christmas. All of this made the emptiness worse. I felt like Scrooge being led around to view Christmas past, present and future,only allowed to watch like a stranger from outside looking in. I felt like they weren't my family any more. Well, time healed that as I had to keep participating in life. bills need paid, meals need cooked, and life keeps happening. I still have bad days every now and then. I have been on this secondary journey for 11 years, almost constant chemo. My ride has been fairly smooth with a few pot holes. Chemo is pretty kind to me. Ask your onc if he is quoting statistics or basing it in you personally. Welcome! FF
thank you so much for that, middle of the night feels like the worst time, during the day I am ok and feel fairly positive but in the night all those fears that are there come from us to play!! It is so good to know there are people like u out there for support, I feel I have got to b positive for my family, we are very close and as I said this has hit my daughter much harder than the rest of us. She is struggling already with a broken relationship and recent diagnosis of Fybromyalgia so I guess this feels like the last straw when her rock and main supporter suddenly is facing this damned cancer again. I work 3 nites a week and want to continue if possible, my colleagues have been brilliant and there is talk of them dying their hair pink in support 😄. I work as a nurse and often nurse patients with cancer so it's odd to find myself in their camp so to speak. I know treatment has improved in the last 24 years as the chemo I had then was quite brutal and I didn't need it when I had the ducal ca. I can't tell u how much better your reply made me feel, and to know u r still here 8 yrs later I know that will b a help to my girl. The way I see it is we all have to take it a day at a time and hope for the best. I send love and healing. Thoughts to you and everyone on this forum and elsewhere who is going through this fight. Xxx
We all may only have 2 years, or two months, or two hours regardless of our health.
A few months ago I learned a women near me had been diagnosed with breast cancer. Two weeks ago I heard she died. I assumed it was either from the cancer itself or complications from treatment. I spent two weeks more down than usual. Turned out she had been on holiday, arrived back with bad abdominal pains and died within two days of septis from a burst appendix. She was 46. Not a happy thing I know ... but it just pointed out to me that both our birth and our death are beyond our control.
One member of my family had/has brain cancer. She was given 3 months to live. So she changed oncologists. She's now nearly four years beyond that initial 3 month prognosis and still going strong.
Take heart and pay no attention to statistics.
Hi Judy m
I just had to add some words of support when I saw your post, especially when I saw the time you posted - in the middle of the night! A time all of us secondary ladies are very familiar with unfortunately.
Firstly welcome to the forum. A place of support, advice and to shout out the unfairness of everything - particularly when you are diagnosed with secondaries.
One thing that is so annoying is that doctors are still quoting out of date figures for survival rates and even then they are only statistics, not about YOU. Survival rates for secondary BC have increased dramatically and it isn't helpful when doctors quote a general idea. I have been living with bone mets for over 8 years now (although it has spread to my liver 3 years ago). I am not in pain, live my life pretty much as I did before my diagnosis and have found the various treatments I have been on tolerable and at times really non intrusive. Not everyone is the same but it gives you an idea that all is not lost. There is a very active thread called Bone Mets please join in..... where many ladies, with or without bone mets, post. Sometimes it's about the anxiety of scans, other times about side effects and often just about living and what we have bought that day. Life goes on but it takes a while for the shock of the secondary diagnosis to lessen. We all need time to adjust and you are in the early days so take time and be kind to yourself. You have a treatment plan in place which is good and many of us feel more in control once you do have one. You have been through a lot of cancer treatment over the years so it seems so unfair but I hope you find support and advice from ladies in a similar position to yourself who can help with this next part.
Hi, I had ovarian ca 24 yrs ago, then ducal cancer with mastectomy12 yrs ago and have just been diagnosed with secondary cancer in some lymph glands and my sternum. I saw my consultant this week and am to have chemo and Herceptin I am so frightened after being told I may only have 2 years, my daughter is devastated and lives 400 miles away, my youngest son is 33 and is trying so hard to be strong for me, I have ten grand babies who I adore but most are too young to be told and would be so upset. I feel I have to b strong for everyone but I feel very alone. I have been given written info but have only been able to bring myself to read bits. It's not like m e to put my head in the sand but I feel so out of control sometimes, it's like a nightmare I know I won't wake up from, did anyone else feel like this sometimes I feel so alone xx
It must be incredibly hard for both of you to have cancer and still be a support to each other. Maybe you do good day, bad day in turn? I shamefully admit I'd feel envious of his better prognosis.
My hubby is incredibly positive, I can't really work out if he fully understands my prognosis but I go along with his thinking that I've got years to go.
I go to my trial appointments on my own (out of choice) so I suppose he is not in the loop but his positivity helps me cope. Also home is my sanctuary, no letters, phone calls about cancer allowed!! Reading the forum is ok because I can control it! Maybe we are all control freaks when life is so precarious xx
Oh lisad, so sorry to hear of your troubles but you are not alone,believe me. No one can go through what we do and not change in some way. It is also tough on loved ones as they feel hopeless and helpless, i'm sure. We are another couple who dont really talk...i keep things to myself in order to protect him and others and because of that he thinks i'm ok. I was one of these people who had control of everything...money, household, the lot. My husband didnt know what it was to clean, see to finances, even go in the loft or put the bins out, He did do the cooking when he was off shift. I always put everyone else first and i dont think it went down very well when i had to make myself the priority and needed the workload sharing. My husband moans that he comes second, third etc etc to my daghter, the cat anyone and the more he does this the more i resent him. He has no friends to speak of and so has no outlet. He also has his own health issues so things arent exactly plain sailnig here and i'm sure everyone on here could tell you a similar story. You will get through it i'm sure...i think he probably blew up out of sheer frustration that this has happened to you and he cant do a damned thing to make it go away. Stay strong and think of yourself before anything and if you need to rant and rave, we are all hear to listen. xx
Just had the most crazy row with my partner he says that I keep picking on him and underminding him and says that I was never used to be like this etc etc, and I told him that I was so sorry for having got breast cancer, so sorry for having to go through having my breast cut off and so sorry for have to go through the horrible treatment of chemo I seem to have to be justifing my feelings what is wrong with people !!
It's his 60th Birthday on Tuesday and in his rage he said you can forget about any thing you may have planned! I havn't planned much but hope things will have clam down by then.
Not sure how I can put this right and is going to get worse going forward??
4.30pm update - he went out to calm down, asked if I was ok, peeled the potates for dinner, so hopefully the rant is over with and we can pretend this episode never happened
Carolsav, the denial tactic works for me too. I haven't "put my affairs in order" and still plan to be around for 10 years at least. That said, my trial keeps wanting scans done which I hate, another on Thursday ....eek!
Hi everyone, yes, us cancer ladies can often get low. Part of it is that we are in such a lonely place...non cancer ladies really cant understand as they havent been tnere!
Marirose, you are right. I havent any kids tho.Bonariensis posted on my Tips for anxiety thread That
HEAD SPACE has now got a meditation path just for Cancer...might be worth a look.
headspace is an online meditation prog which is free at the first level. Helped me with controlling those monkeys which flit around our brains painting anxious thoughts !
Lots of love and warm hugs to everyonexx
Hi goldie Karen Stacy and coolgirl
Welcome to our forum I do hope you will find some salvation here and good tips and fun.
As far as depression goes I think my other mates have said it all but I like coolgirl's attitude regarding putting a brave face on it and remaining happy with people. I have always tried to stay my cheerful self when I meet up with people friends and especially old work mates I don't work anymore I retired through poor health MS and then C. But i do envy those amongst us that can still work even if it is part time. I am involed with other things were I meet people cancer group MS therapy at one branch and social at another MS group also coffee morning with friends.But I am finding it difficult with so many hospital apps I have weekly chemo right in the middle of the week.Don't look too much into the future make the most of the here and now and what you can achieve you will feel so proud of yourselves some people call it a bucket list. Enjoy the time with your children they are important.
Love and (((hugs))) xxx
Hi Goldie, just wanted to say hello and welcome and just echo what the others have already said. No one knows this disease and how it affects your total life until they've lived it. Well-meaning friends, visdit to the coffee shop etc all lovely but whats in your mind never goes away. I'm not sure if i've learned to live with it or am i denial that its even happening??? rest assured we have all beenwhat you're going through and often re-visit that dark place but we are always here, through good and bad. Wish you hadnt had to join us bt welcome aboard!!.x
sorry you are feeling so low. Sometimes people comment that us old timers sound so together and calm about things...maye a lot of the time we are...but often we have the very same as you do..
My problem when im feeling sad is gorging myself, tonight ive had some fudge...quite the wrong thing and im not hungry! I dont sleep very well either, so thats another thing to tackle. I do hope you feel better soon....we are all here with you, and are like youxx
Hi goldiecat, just also wanted you to know that others of us with SBC feel the same way. In fact I think I over compensate at work sometimes by acting happier than my colleagues who don't have so much to stress about. I too feel guilty for having a glass or wine or two ....won't tell you the size of my glasses!!! My excuse is it keeps me sane. It IS hard dealing with this and also knowing that it'll never go away. I often visit this website as it helps reading other ladies post just so you realise you're not alone in this (thanks ladies). Hope your treatment is going well . Best wishes.xxxx
Hello Goldie. As the others have said we know how you feel and do understand. People do ask how we are when we know that they don't really want to know. Like me you probably say "oh I'm okay" but then quite often they go into a long list of THEIR complaints, which I sometimes think is a little thoughtless.
I don't smoke and I have gone off of alcohol a bit - mainly because I have reflux and it really seems to affect that these days. - doesn't mean that I don't keep trying though, I do enjoy wine with meals and Baileys in my coffee (and by itself in a glass!!!)
I do 'comfort' eat though and have put on loads of weight since Dx - mainly around my middle which I know is the worst place to have it. I actually buy treats and hide them so that my hubby won't see how much I am eating.
whereabouts do you live? I go to the BCC secondary meet ups and find them helpful, there may be one local to you.
I don't smoke, but if I did I would have a cig in my mouth 24x7. I am drinking to much too and to be fair I'm not bothered by it anymore.
I agree people do not understand. If wish people would stop asking me how I was feeling because they don't really want an honest answer, do they? I too am going through the motions of doing all the things I did before I was diagnosed when what I really want to do is stay in bed all day. However, I am sure if I didn't force myself to go out that I'd feel much worst than I do now.
I've started on antidepressants and they have cleared my head a bit. I don't feel completely dysfunctional anymore. The hardest part for me is looking too far into the future. Other people look forward to their lives improving or doing fun things; whilst my perspective is the opposite.
My only advice is to ask for all the help and support you can get. I'm glad you posted.
secondary breast cancer and feeling it today... drinking and smoking too much.. people don't understand..I do normal things, act normal, work really hard.. but noone know whats underneath... sorry to be deep and meaningful.. but would soooooooo like to meet others like me.. x