I’ve not been on the forums for a long while, as I have been trying to lead a ‘normal’ life… Just recently though, I’ve found myself in dark places in my mind. I hit the 3 year survivor in July of this year, and I feel myself very lucky to have gotten this far. My brain is now refusing to quit thinking, well…3 years is good, was that the good 3 years and now it goes downhill? every ache and pain i fear is a progression of my bone cancer… I try and stay positive, but the darker days are now getting more and more frequent…
Just reaching out and hoping I’m not alone in this and that someone can tell me it’s natural to be angry this far down the line…
Hi
Your definetely not alone. I’m going to be hitting the 3 year mark this year in december and i must admit the fear of the future and unkown is awful. I was speaking to me hubby sbout it today as mu MIL told me i lost weight so i fear the worst. Ive been having a fuzzy head, on and off headaches over the past week and feel a bit nausiated and fear the worst keep on thinking i should go to the docs but i think she might think here we go again!.
i dont think the fear will ever leave us but its just how we deal with it. i still think 3 years is still relatively a small period of time and a lot has happened to us in the that period. i know some people can put it behind them easier than others but its an individual thing and we mustn’t beat ourselves up over it.
take care
sukes
Hi
I too have just reached the 3 year mark in September. I have more dark days now than I did when first diagnosed and undergoing treatment. I feel my safetynet has gone and every little ache and pain makes me think the worst. I can’t speak to my family about it because I don’t want to them to worry about me. I’m triple negative so I hope if and when I reach the 5 year mark I’ll feel more positive.
Best wishes
Jan
On the 22nd of October, I’ll be very quietly celebrating “I’m Not Dead Day” – seven years since my liver & bone mets dx. No, the fear never goes away, and as I’ve been quite ill recently & lost more weight, I’m also seeing increasing distress & sadness on my partner’s face. But sometimes – if only for brief relief – I chuck the fear behind a nice cupcake, deep inside a laugh with chums, or under a new pair of shoes . . . Sorry, not really words of wisdom, but sending you love & strength.
Hi Poannie (and everyone)
I’m just passed my 2 years mark and I also think - how much longer? I try to draw strength from everyone on here who has lived with a mets dx for much longer than me and hope that I too will be around for a long time to come. The problem is none of us knows which way things will go in the short term and that’s the scary part. Especially when we read about other forum members who have died (particularly this morning when I read about BikingGirl). I guess it’s the extra baggage that all of us with a secondary dx (as well as our families) have to deal with and it’s the pits. I try to keep positive, although I appreciate I am lucky not to be feeling unwell at the moment, which makes it easier for me to do so, however I do have sad times. I agree with Marilyn that any dark thoughts I have I try to sort out with some sort of treat or happy time. Again, no words of wisdom from me, just support, and I hope anyone dealing with these dark places right now is able to come out the other side, whatever it takes.
Nicky xx
Hi poannie and all, yes me too, I feel exactly the same 8 years on.
I still find strength from everyone I’ve met who are no longer here. They all went through so much and still found the courage and strength to meet up and live their lives as well and as full as they possibly could.
How sad it was to read of BikingGirl.
The best thing I’ve done for myself recently is to stop posting here and to visit here just every few days…(I just could not let your post slip by though J. )
I’m so sick of ‘it’ bored of ‘it’ and not posting here has helped me move on a bit…well as much as you can move on with mets.
Marilyn I wondered how you were, been thinking of you.
Joan, Marilyn and Nicky I’m waiting for you all to catch me up, let’s all get to double figures at the very least!
Take care all…Lots of Love…xxx
I too hit the 3 year mark in July this year, and still worry and wonder when things will start to change. I have down days, black days and happy days. My babies keep me going, but I fear for them and worry what will happen to them and my hubby when the worst happens. They are only 3 and 6.
You are definitely not alone in the anger stakes, I am so often in bad moods and angry about it all. My hair is falling out again now, as on weekly taxol, and am struggling to deal with it again. My 6 year old is having counselling at school now, to help with any fears she has, although she doesnt know too much just my hair going to fall out and I have to go hospital every Tuesday now.
I have also stopped posting too much on here, read every few days, but took a step backwards.
Take care Poannie and lets hope we will all still be here in another 3 years.
I got to the 2 years since dx in June sometime (I’m hopeless with detail!) and definitely began to feel more vulnerable, but then my onc said some really positive things to me and I really have been able to push the cancer more to the back of my mind. It helps to have a nearly four year old at home who manages to keep me focussed on the moment!
It’s my birthday on Tuesday and I really wasn’t confident that I’d reach it when I got the sec dx, so I’m so happy to have reached that landmark. Every significant day for me now is one to celebrate.
Thank you all. I went to Christies today and I have to go back in the next few weeks for another full body and bone scan. My neck and shoulder are now hurting, and although they think it might be the cold getting in and me not sleeping right, they’re going to check me over again. If need be, they’re going to try me on examestane again (it gave me migraines last time so they can try and give me something to combat that) or they will admit defeat with hormone therapy and put me on capectabine and see what happens with that… I am scared of leaving hormone therapy behind too soon - I don’t want to be reliant on chemo for the rest of my days…
Hi poannie
I hope that the scans don’t show anything abnormal and that examestane works for you and any side effects are dealt with by (even more!) tablets - that’s if you are put back on it. Good luck - I think I’d feel the same about relying purely on chemo when we expect to use hormone therapy as well, however some of these newer chemos do seem to work well for so many ladies, with fewer side effects (from what I can gather).
Take care
Nicky x
Hope the scans go well. I to had horrendous headaches with examestane, so I hope they can deal with that if you do end up taking it again. If that doesn’t end up being the case, I have taken Capcetabine and am now on Vinoralbine and have found both these tablet chemos very user friendly so maybe it won’t be such a bad thing as you think.
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