Hi all. Met my oncologist yesterday and discussed options for me. As some may have seen I have been feeling really ill, been in hospital with neutropenia, now got problems with mobility. Spread and growth in liver, lungs, lymphs, bones, surface of brain, a bit riddled I would say!
Anyhow we took the decision last night to stop the chemo & any more treatment. My body is just not strong enough to cope with anything else, having had 5 or 6 different chemos since 2012.
I feel surprisingly ok about the decision taken. Sure I’m scared, who knows how long I have left, the onc. says could be weeks unlikely to be months. But I feel more in control of my own destiny. (Even though I’m not!) I am determined to spend as much time at home as I can but don’t want to be in pain or distress so intend going to the hospice at that point in time, after all that is their area of expertise.
Just thought I’d share my difficult decision with you, I have lived with secondary cancer for over 10 years (primary in 2002) mainly with a good quality of life so for you newly diagnosed ladies you could have many years ahead of you especially as new treatments come onto the market.
Hoping everyone is as well as they can be
Much love
Smartie x
Oh Smartie what an awful decision to have to make my lovely. However I would want to be able to make that decision like you have. My ex father in law did the same several years ago with oesophageal cancer and watching the way the treatment affected him he definitely made the right decision. Wishing you all the very best for the coming weeks and hope you get to do as much as you want to make lots of special memories. I have been thinking about you lots and logged on today to see how you are getting on.
Loads of love and gentle hugs xxxx
Hello smartie
It’s nice to hear from you but in a way its a sad posting but I think you have to decide at some point how much chemo you can cope with and look at the quality of life etc.
I was dx primary in 2004 and had eleven clear years with a lot of holidays and great times …including three grandchildren etc.
I was dx with bone Mets October 2015 and can cope with letrozole etc at the moment to try to control it all.
I hope that you will enjoy some lovely family time and your body will enjoy not being filled with toxic drugs !!
I’m sending loads of hugs and positive vibes
Hugs xxxx
Hi Smartie
A sad, difficult but understandable decision. Hope you have a bit of time now feeling better for no drugs. Thank you for sharing your experience of life with sbc, it gives some of us hope of some good times still ahead.
Thank you for sharing your decision with us and you have been a warrior and always so brave.You can now forget about all the awful chemo and rest your body and mind while with your family now it your precious time X thinking of you and us Grandma’s get given such amazing rewards don’t we xx
Hi Smartie, I have been following your posts & many thanks for sharing your story in such a positive way.
Wishing you all the very best in your decision to take back control of your future.
ann
xxx
Dear Smartie
We too are sad to read your post and thank you for the support you are still offering others and sharing your decision with others here on the Forum. If there is anything we can do to help please contact us moderator@breastcancercare.org.uk or call the Helpline 0808 800 6000 if you would like to talk to someone.
We also have our fabulous Secondary Live Chat service which if you dont already use I know that you would be a very welcome addition.
Best wishes
Anna
Digital Community Officer
Hey Smartie
You brave lady.
Thanks for sharing.
Much love LouBoo xxx
For Smartie ((((((((((((((((((((((((( gentle hugs ))))))))))))))))))))))
thinking of you and your family
Stillhere xxxx
Hi Smartie,
just caught up with my reading on this site. I cant really add anything, it has all been said. But I wanted to say thank you for all your helpful posts and sharing your experience.
i do totally understand your decision, I sometimes fantasise about opting out of treatment…some of it is really unpleasant. We are all on the same train, if in different carriages and that binds us all together as buddies in a way.
Lots of love and hugs to you
Moijan???
Smartie, just wanted to echo everything anyone has said before, In tears marvelling at your bravery. I just hope i can be like you. Sometimes i still dont believe and cant accept this is happening but i suppose there comes a time when you just know what decision you should make and which road you should take. I wish you peace, love and happiness. xx
Feeling a tiny bit stronger every day. Can now get up the stairs on my own albeit slowly. Am eating much better although stomach has shrunk so it is little & often & trying for calorific items. Have managed a glass of wine, first alcohol for 9 weeks. Have walked into town from my apartment & had a coffee. Feel like progress is really slow but at least things are heading in the right direction determined to enjoy things whilst I can. Hospital bed proving to be comfortable - thinking about going to visit my sister in a couple of weeks, just a bit worried about sleeping in a normal bed again, will have to see how it goes. So all in all, not too bad, no pain, no new symptoms still got lymphedema in legs but right leg a little improved. Feel like it’s a slow improvement but when I think back just a week ago I have come on somewhat, from feeling like I was at deaths door to now is a big step forwards. Hickman line coming out this Thursday - having blood transfusion on Wednesday its last use (HB only 88). Thanks for your thoughts, will keep you posted.
Smartie x
Oh smartie
How nice to hear that you are getting a little better day by day.
Little steps …
The weather is beautiful so it’s good to get natural vitamin d …
Keep in touch with us as we like to hear from you.
Xx
Oh yes. hi Smartie, have Missed you…sounds like you are feeling better in yourself and taking time to smell the roses, so pleased to hear how you are doing. Yes, little steps and enjoy the success each time…good you are going to see your sister… Keep us posted
much love, Moijanxx
Lovely to hear from you Smartie. I check in every day to see how you are. Hope you can get to see your sister. Maybe the local hospice to her could lend her an air mattress to go on her bed base for you xx
Hi Smartie
Pleased to hear you are getting around better. All that chemo poison will take some time to get out of your system I do hope your Blood Transfusion will give you a boost and make you feel even more energetic although you seem to be doing really well. Please keep in touch and thanks for updateing us.
Sending you loads of love and (((((hugs))))) xxx
Hello smartie
I expect i will b the first of many to say hello to you today.
It’s so nice to hear that you have been away and staying with your sister.
The weather is still gorgeous here in Devon and hope u are enjoying some vitamin d too!!
Hugs Carolyn xxx???
Hello Smartie
So good to hear from you sorry you have the shingles as if you haven’t got enough to cope with. I am glad you managed some quality time with your sister.
I had folliculitis last year I was having 2 ulcers dressed at the time and the nurse said it looked liked shingles it itched like mad. After a few weeks with it the onc decided it could be cancer related antihistamines seem to get shut of them.
I do hope your shingles soon disappear and your health stays good. Sending you cyber (((((hugs))))) xxx
Hi Smartie, was lovely to hear from you but not the shingles bit. I havent had them but i know they can really take it out of you for quite some time so rest up and take good care. xx
Hello smartie
Just seen yr posting on the other thread. How are you? Have the shingles cleared up now and you have obviously now had your port removed which will be more comfy.
Keep in touch with us as we love to hear from you.
Carolyn xxxx