Hi Everyone,
Well I have suvived the weekend…just!! today I have been quite tearful. I go for my scan tomrrow,so will be glad to get that out of the way!!
I do hope everyone enjoyed the Eastr break.
Maryxx
My primary cancer was back in 1996, with mets appearing to pleura, liver and bones in 2007. I was just getting to the stage of thinking that I was one of the lucky ones…then bang.
There is no easy answer to this huge crisis. But I can reassure you that you will find a way to carry on and manage to build a new life around this new normal. After the mets diagnosis, I spent 4 days crying and staring at the wall. Then I got up, and carried on. Determined not to let this impact on my life-and that of my family and friends-any more than it has to do. It’s a strategy which works for me-along with taking a day at a time. It somehow makes it all slightly more manageable.
I’ve been on treatment now for 29 months (gosh…just counted…,) and there is no doubt about it. Life has changed, in ways I couldn’t imagine. But overall, my quality of life is good, and I’m determined to battle on as long as possible-until such time as I run out of options, or can no longer handle the side effects to the treatments.
I seem to now be at the stage of having quite long periods of not even thinking about the cancer-unless it is triggered by some physical symptoms+/problems. For me, acceptance of what had happened was a hugely liberating step. I accept that cancer will cruelly foreshorten my life-but today is good, and I’m grateful for that. I tackle problems when and if they arise-not easy to do, but something I would suggest you try-otherwise you can tie yourself in knots, worrying about every ache and pain. Scan time also brings huge anxiety-but somehow we pick ourselves up and carry on-we really have no other option.It may never be “easy”,for us from now, but it does get easier. I would have found that very hard to believe when I was first diagnosed with mets…but it is true.
Mary
hope it goes ok tomorrow. Big G and T tonight and choc for tomorrow. I was told to drink cola after scans, helps with reblancing the bloods. Not sure if true but gives you some energy to get home ! 
Elain, thanks for sharing your story, I was reading a bit in the sunday mail yesterday about a girl who had been in our boat, she said that she was ready to stop pushing the pause button and start pushing the play button, great way to start thinking about getting on with living the life we have. Just cant wait to get to the point its not the last thing I think of at night , 1 st thing in the morning and in the early hours when you wake!
Victoria
xoxo
Lol-I actually meant to add that point in…“it’s no longer the first thing I think of in the morning, and the last thing at night”-so it can happen! Hope you can get some undisturbed sleep soon too-it’s amazing how therapeutic that alone can be. Conversely being awake during the night can be challenging-I have steroids with the chemo, which keep me awake for hours at a time, so I tend to get out of bed, make a hot choc and read for a while. But these are the moments in which I do find the thoughts can creep back-perhaps because it doesn’t feel right to be awake when the rest of the house is asleep. Usually a good book can help restore equilbrium at that point-unless there is any nausea/pain, when I’m more likely to brood and get upset. But I try to keep reeminding myself that tomorrow is another day-and if one day has been bad, then maybe the next will be better.
Thanks ladies, it is so good to come on here and be with people who understand exactly how I feel.I can’t imagine getting to the point when BC is not on my mind 24/7!!!
I hope you all have a peaceful night,catch up with you soon,
Maryxx
I had over 5 years between my primary diagnosis and secondary diagnosis.
My primary diagnosis was in February 2003 at the ripe old age of 33 when my son was only 5. I couldn’t believe it when I was diagnosed with secondaries to my pleura, lungs, lymph nodes and mediastinal space in November 2008. I thought that was it if I’m honest but the chemo, herceptin and letrozole did wonders and my chest disease has been classed as “stable” over the last year.
Unfortunately I was then diagnosed with one large brain met last month which was removed via surgery a few weeks ago. I sometimes feel like this disease is marching through my body.
I find I am very up and down, some days full of optimism and determined to see my now 12 year old son grow up. But I have to admit to having some dark days where I am convinced that the cancer is going to win. Sometimes I just look at my family and feel so much guilt at what I am putting them all through which I know is irrational as there is nothing I can do about the shitty predicament I am in.
I have had people say to me recently how brave I am or how inspirational I am, but that is complete rubbish really. I haven’t got a choice. Having neuro surgery was the most terrifying thing I have ever had to go through, there was nothing brave about it, it was a case of have the surgery or die, what would anyone have done.
I find when treatments are going well I can get to a point where breast cancer isn’t the only thing I think about but then there is a set back and I am back to square one, scared witless and unable to focus on anything else.
Mary - good luck with your scan. I hope you don’t have to wait too long for the results.
Take care everyone
Paula X
Hi,
I was diagnosed with secondaries in lungs and lymph nodes in February 2009. This was just three months after treatment for primary.
Most of the time I have been so positive, almost in denial.The real scary time is when there is progression, however small, this journey is such a roller coaster!!
Last year I had six cycles of Capecetabine which left me with slight progression to lung mets, followed by a three month break, my scan at the end showed more growth and new mets to lung.
I then had Vinoralbine, finally success, I was scanned after three cycles and had considerable reduction to lung mets, I was on such a high, I have just finished another three cycles and am starting a three month chemo break.
Then guess what? A huge swelling has appeared under my arm, my onc. said the swelling isn`t tumour but he thinks my tumour has grown, I am waiting for a c.t. scan.
Paula, I know what you mean about feeling guilty about putting the family through this. I haven`t told my daughter about my latest development yet, she worries more than me.
So sorry about the rant, feel better now, Im off to play golf in the rain, I havent let any of the members know about my secondaries so I can escape for a few hours!
Good luck Mary today…fingers crossed for a good result
Take care everyone,
Love,
Janx
Hi Ladies,
Just a reminder incase you’re not aware, BCC run two live chat sessions for people with a secondary diagnosis if you would like to join in. These sessions run Tuesday evenings from 8.30p.m. to 9.30pm and Wednesday morning 11.30am to 12.30 here’s the link to more information if you’re interested:
breastcancercare.org.uk/community/live-chat/
Take care all,
Jo, Facilitator
Hi everyone, I hope that you all managed to have a good easter. Jan, sorryto hear about the latest development and hope it gets sorted quickly. I have finished chemo now and had CT last week-will be getting the results next week, so am keeping myself busy until then.
Love, Nicky
Hi everyone,
I was dx prim + bone secs about 2 weeks apart in June, 09 - just I was getting my head around the BC dx, came the bone mets dx. I was in completely denial, putting the stiffness and aches to work related because I sit in front of a computer all the time.
When chemo started and showed good results, I calmed down a lot. I switched to Tamoxifen after 6 months of chemo and have managed to enjoy life a bit more. However, it looks like it won’t last very long because Tamoxifen is now showing clear signs of failing. Just had 2 scans today to check exactly what’s going on inside me. I’m getting the results tomorrow, so the next 24 hours won’t be easy.
Paula: I think sometimes people just don’t know what to say. I had people telling yesterday that now chemo is over and everything is OK!!! Well, I was stressed out with the scans today and if the new treatment plan fails, too, I’ll need more chemo.
Mary: hope your scans today went OK, too and you don’t have to wait too long for your results.
Nicky: hope you get some good results, too.
Take care all xx
Hi everyone,
Nicky,Hope you get wonderful results after your chemo… fingers crossed, the wait is just horrible, hope we can get together soon.
m1yu, Good luck with the results, its so good that you dont have to wait so long, I have both fngers and toes crossed for ypu !!
Take care,
Janx
Hi Everyone,
I had a call from my onc’s secretary yesterday about the results of my bone csan, it seems that I have got it in my ribs, and I am being called back next week, to see onc and to start radio. when I went for the scan I was having pain in my right ribs, but since yesterday I have really bad pain in my left ribs!! I am feeling really low and imagining things getting out of control!
I was expecting this news, but just to hear it confirmed,has plunged me into a quivering jelly!
Maryxx
Dear Marychris,
I am sure the other forum members will soon be along to offer you support again, but please remember you can also talk to one of our trained helpliners during this diificult time.
The Helpline is open Monday to Friday 9.00am-5.00pm and on Saturdays from 9.00am- 2.00pm. The number is 0808 800 60000
Very best wishes
Janet
BCC Facilitator
Hi Mary
So sorry that the pain in your ribs has been confirmed as being bone mets. It is so devastating when we know it has spread, from what I can tell from your posts you already have bone mets? Hopefully a new treatment plan will be effective and different hormone medication can make all the difference as can the various chemo’s that are out there. I hope you find out soon what the next stage of action is, after rads or ‘just’ rads’, and this allows you to feel more in control of the situation.
Take care
Nicky x
hi everybody,
Mary, I’m sorry you had your fears confirmed but hope that you get a treatment plan quickly.
Jan, have seen another post re tyverb from you. Fingers crossed that you get funding for it and that it really works for you.
my last scan shows breast tumours shrunk and stable disease in my lungs, so the chemo has atleast halted progression. I’m now considering having a mastectomy, which seems as bit bizarre 3 years after diagnosis, but if it may prolong my life, needs considering. I’m being discussed at the next MDT meeting so will have to see what they think.
love to you all,
nicky
Good news Nicky (India 1), you must be relieved !! Interesting about the mastectomy news…
julie x
Great news, Nicky so pleased things are stable.
I had considerable reduction after three cycles of Vinoralbine and then another scan after the next three cycles said considerable progression… just praying that I am at worst, just back to square one!! I will find out more on Monday.
Take care,
Love,
Janx
Hi Jan.
fingers crossed for monday for you. Hope all is well and you will soon be back on the golf course. weather here has been perfect for it. I have donated my clubs to my stepson now. I cant put my coat on without assistance so doubt very much I will be swinging a club again he is very happy with them though so that’s my bit for recycling this month.
Nicky - Glad to hear things are stable for you. Interesting that a mastectomy is being offered after all this time. Its a really big decision for you but they must think it will be of benefit. Good luck with whatever you decide.
Hope everyone is feeling well today
love to all
Julie x