Hello lovely people. I just wanted to touch base with others as we head towards the New Year. I was diagnosed in September (‘straight to Stage 4’) and, after the turmoil of the first few weeks, am now on treatment and, I think, reasonably stable. However, I’m still really struggling with the emotional side of things. I wasn’t sure I’d make it to Christmas, but evidently did! Now, I look forward to the New Year … with a sense of determination, but also with huge worry about what’s in store.
I know some of you have been diagnosed for way longer and been through all kinds of experiences. I’d really appreciate any thoughts on how you cope with balancing out the reality of a pretty horrendous diagnosis with finding a ‘new normal’ and planning for the future.
Maybe I’ll feel better once the New Year actual starts … this is always a weird limbo time of year!
Hello SML
Sorry no one has replied it’s quiet here at the moment so u are stuck with me …I’m as much help as a chocolate teapot really BUT I do understand what you are going through… we all have a sell by date but only because we know …others could have a heart attack or get knocked over by a bus so no one knows what the future holds.
Xmas is the one time that makes us think …will we be here next Xmas etc …I got dx with extensive bone mets Oct 2015 …convinced myself Xmas 2015 would be my last …then I got Xmas 2016 and now this one so it’s a bonus and thanks to the treatments that are available. .hope I get a few more. …
We have ladies here that are doing well years after dx …it’s just a case of living for the moment …taking each day as it comes …I’ve been having a gin and tonic the last few evenings …I know the dangers of alcohol and have been teetotal for 14 years but thought sod it …live dangerous! ! I also eat chocolate and cake …once again know Sugar is bad but maybe in the new year will try the healthy way again …
You say you are feeling stable so enjoy that stage …think positive about it all but please visit again for a moan or rant …maybe you will get someone with better advice than me next time you post.
Just wanted to let you know you are not alone. I was diagnosed in Jan 2016 straight to Stage 4. I have a scan tomorrow and after a lovely Christmas with my beautiful girls and husband I feel totally overwhelmed by the worry of it all and just feel like sitting in a room and crying. Anyway I don’t want to drag you down, just keep you company xx
All the best for scan results …what a horrid time of year to be worrying about them but if they are good you can relax into the new year …
We are holding your hand here. .
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Maria and SML I was dx with mets 12 years ago the day b4 Thanksgiving. I knew my family thought it was my last Christmas. They put up every decoration we owned and bought more. The more they decorated the more miserable I was. I felt like I was being led around like Scrooge watching Christmas past, present and future and could only watch not touch my family or join in. I felt like I was allowed to just look through the window and they weren’t mine any more. Then I woke up and realised I needed to join in again, I needed to emo t whatever time I had. That being miserable and distant was hurting them and me. So I joined life again and got busy living. Thankful I did. I would have wasted 12 years.
Maria scanxiety is tough! Hoping for the best for you!
SML, Each of us handles this differently. I thought maybe my story would help.
SML and Maria I can’t offer any wise words but I can empathise with you and join you at this worrying time.
I was diagnosed with grade 3 BC in September 2014. After 4 scans within 4 weeks my oncologist told me just before Christmas that I have bone mets and booked an MRI for 20th Dec to confirm the extent. As he’s on holiday he promised to get a colleague to call me with results. I had lots of conversations via email and text with BCN but results weren’t available before Christmas.
I chased them up yesterday and was copied in (accidentally) on an email thread between consultants which included them sending MRI report to my onc on holiday. Today (Friday) I had a call from his secretary asking me to go to see him at his London clinic on Tuesday. I’ve got a local appointment with him booked for the 8th and asked her to get someone to call me as as he’d promised because we’d discussed all treatment options for 1, 2 or more tumours before Christmas so I am prepared for good or bad news over the phone, I just want to know.
I have heard nothing since that call at 2pm Friday and now fear the worst because he wants a face to face meeting rather than on the phone.
I am with you ladies every step of the way. It’s so worrying not knowing what the new year has in store for us, but heartening to hear from the ‘experienced’ secondary ladies about their coping strategies and treatment.
Hi SML and Riversidedawn, I can sympathise with you. I was diagnosed with lung mets part way through my radiotherapy a couple of months ago. I was completely blindsided, and missed that my Onco was so matter of fact. I spent 48 hours in a crying fit, which didn’t help at all! What has helped has been to talk about it. One of the district nurses called in to see me and although she was a bit clueless re secondaries, she was great at holding hands and listening. Maggies was my next port of call. The Secondary breast cancer lead took me through my diagnosis and explained everything calmly and clearly. She advised me to regard it as a chronic illness, albeit a nasty one. It’s not going away, but it is treatable. The bottom line is, I’m living with BC, not dying from it. My Onco was matter of fact because he has drugs to treat me. In fact, a great big bag full. He’s also got me onto a new one that NICE has just signed off on . I accessed some counselling from Maggies which was super. I went on a sleep management course for a few tips - you just can’t think for a whirling mind. I had panic attacks which have now stopped for the most part. I’m on a mindfulness course which I love. The meditation helps you to think and live in the moment, so treasure each day. I exercise more , attending TaiChi and Pilates which puts me in contact with others in a similar situation , as well as helping tone muscles and develop core strength . I also attend a support group which has made me feel quite humble. There’s always someone worse off, isn’t there? Maggies has been a place of sanctuary and support, and I feel very blessed to be so near a centre. Another thing I have focused on is my family. I intend to stay around as long as possible for them! PM me if you need to talk. I have found there are good days, and not so good, days and nights. X
Thank you so much, everyone, for your replies … I’m so pleased I posted the message, it’s really helped me feel connected.
To be honest, while loving Christmas, I’ve always found New Year tricky - as a time of looking forward, but also looking back and reflecting. This year it is especially hard as my diagnosis brings so many unknowns. When I look forward, I feel like my life telescopes in an out … one minute fearing it will be very short, the next confident and determined I’ll be here for many years to come. I particularly struggle as we have two relatively young kids (12 and 14) … which, while fueling the determination, adds an extra dimension to the fear.
I particularly feel for those of you awaiting scans or results … hard at the best of times, but extra hard at this time of year. I send you love.
And I agree about accessing all the help that’s available. We’re very fortunate to have a brand new Macmillan Centre here with lots on offer. However, there are still some days when I just want to curl up in my shell and just get through the day.
Thank you for your replies, support and hand holding ladies.
I have found very little support here in Bedfordshire, it must be good to have maggies and Macmillan centres close by Anniej and SML.
SML - I too have children of 12 and 15. The first time round they were only 9 and 12. The schools were fabulous with them and once again have offered support and understanding. My son will be taking his GCSEs in the summer and I really don’t want my diagnosis to impact on his studies. He’s pretty level headed and grew up very quickly with my original diagnosis. He’s having a couple of years where he’s been able to relax and be a teenager!
New year is always an odd time for me. My dad’s birthday was New Year’s Eve. We lost him at Christmas 2013 so he never knew about my bc.
My friend and neighbour is throwing a party tomorrow and I fully intend to thoroughly enjoy myself!!
Hope the daylight hours bring more comfort and normality to everyone. Bright and sunny here, I’ve just finished yoga and now going to take the dogs out and blow away the cobwebs.
Like Bon …I was online reading the threads at silly o clock this morning …sure the hormone pills we pop turn us into night owls. …but I didn’t feel I could add anything else to what has been already posted …but remember there are loads of ladies that read and don’t actually post so you are never alone …
Hugs xx
A warm welcome to the forum. You have come to the right place for support.
I felt the same back in 2009 when I was diagnosed from start with breast cancer and bone mets. Had myself written off but as time as gone by you learn to cope. There are alot of treatments you can have.
I can understand it most be so hard with having children that are still so young. I was fortunate I suppose by the time I got diagnosed my children had grown up and saw them both married.
Try and stay positive. It is awful waiting round for scan results lije I had a scan nearly 4 weeks ago and won’t get results till 8 January.
I have carried on as before had holidays. I used to drink before this happened and once treatment finished in 2010 I have carried on as before. The way I look at it life is living.
I don’t take steroids or anything but letrozole and calcium tablets so I’m sure it’s them !
Before I got dx …I could literally sleep for England. .maybe 8/9 hours in one go but now it’s a couple of wees, look out window, fidget and fidget the rest of the time !!
It’s horrendous here in Devon today too …very windy and wet …love Brighton but never escape The Lanes without a new handbag and piece of jewellery! !
Hi all, this is a very difficult time of year for a lot of us. I love Christmas & having all my family around me but I could really see Hogmanay/new year far enough. Dec/Jan is my usual time for scans, results, etc so I’m alwYs worried sick about what im going to be told. I usually just plaster the smile on my face & join in with everyone else, but underneath I’m worrying about what the coming year is going to bring & this year is no exception.
I was diagnosed initially dec 2010, then rediagnosed with secondaries in spine & liver Jan 2015. I’ve been on letrazole & capecitabine since then but beginning of December I found out there are more lesions on my liver & ?skull. At the moment im kinda in limbo as I’m waiting to hear if I’m being accepted for clinical trials & have been taken of treatment meantime. So tomorrow night when everyone’s wishing each other “happy new year” I’ll have my smile painted on again!
Don’t get me wrong, I’m not all doom & gloom. I consider myself to be otherwise fortunate & tend to just get on with things & Lead life to the full. I’m 48, my health is otherwise good, I took early retirement this year so have more time to spend on my family, I play saxophone in 2 bands & gig regularly. My boys are now 18 & 12 & are doing fantastically well- they were 11 & 5 when this all started, so have pretty much grown up with their mum having breast cancer. My oldest has just started university & his brother is at secondary. I have a fantastic family surrounding me who are there when I need them.
That is what keeps me going & I’ll deal with whatever the New Year brings when it happens.
Hugs jx
Welcome to the secondary site. .it’s a real shock to hear the words “secondary” but we have no choice but to face it all …
We all hope that bc will be treatment and then move on but a few of us are unlucky and we get a second visit from the little blighters …
Happy new year xxx