Hi all, bizarrely for me I am feeling very very low today - normally I am just great but the last few days I have literally nothing left in my tank. I have lung mets and have been on capecitabine and PARP trials since I was diagnosed in September last yr, neither worked, so started gemcarbo last week. I had FEC for primary BC in 2009 which I found pretty vile but there was an end in sight so I just got on with it, knowing it wouldn’t be forever. Now I just keep thinking, is this it? Just drugs and machines forever? I’m 31 and I really don’t want to live my life like this any more, I have been feeling a bit flattened from the chemo the last few days but I think I had also conveniently forgotten what it was like and now I am remembering.
There is a small part of me, that’s getting louder, that says I don’t want to do this any more and if life is going to be a constant round of drugs then it’s not worth it. I can’t say this to anyone else, least of all my parents or boyfriend (who I have only recently met) as I know they’ll be devastated and I don’t even know if I really mean it. It’s just all this ‘keep fighting, stay positive’ business that’s getting a bit tedious. I am trying but like I said there is a part of me that doesn’t want to any more, and would rather just take off round the world in the time I have left. Then I feel guilty for not trying hard enough!
Anyway sorry to ramble, just wondered if anyone else sometimes feels the same … or has even made the decision to stop treatment entirely?
I really am very sorry to read how you feel, and if I’m completely honest, I think there but for the grace of God go I, because as I also have stage 4 I’m aware that this is what the future could hold for me as well. It must be so exhausting to be caught up in treatment that seems endless.
I can’t tell you what you should do, because only you can decide what is right for you - and actually, I can’t even say what I would do, because I don’t know how I would feel under the same circumstances. The only suggestions I can make are that you talk to your medical team, about whether a treatment break would be in order - or maybe more localised treatments for the lung mets (such as surgery, or stereotactic radiotherapy, such as Cyberknife or TomoTherapy). The other thing is, when you feel low, post on this site, because maybe venting your emotions will help.
Whatever you decide, I wish you the very, very best.
Hi Frances, so sorry to read you are in a dark place at the moment. Yes I have had friends who decided enough was enough and they stopped treatment and chose a shorter life but hopefully a better quality of life. I always thought I was one of those ‘throw everything at me’ girls but now my thoughts have changed. Right now I want proactive treatment but if things change and I have very little quality of life I would certainly consider stopping active treatment.
It is utterly cr*p that you have had to deal with all this at 31. Don’t ever feel guilty, many have had the very same thoughts and I hope you find Gem works well and things can get better. You take care…Love…xxxx
I don’t usually post the ‘pink & fluffy’ stuff, but your post really moved me.
I have nothing to add, as I was a primary diagnosis: ‘This too will pass’, was my mantra, but there was many times that I thought chemo was worse than death…and then you have good days again. I have no idea what I would do in your situation. Lemongrove has given very good advice regarding talking to your medical team.
I do know a few people who have gone down the extreme, alternative health approach and it has worked (even for pancreatic cancer), this is not for the faint-hearted though.
All the very best, try to enjoy every bit of happiness that comes your way, hopefully this new treatment will help.
xxx
Hi Francesca
Sorry to read that you are feeling so low, in addition to posting here it may help to talk your feelings through with someone in confidence, our helpliners are here to support you on 0808 800 6000, the lines are open weekdays 9-5 and Sat 9-2
Take care
Lucy
HI Frances, good for you for posting about this -I hope you get lots of different thoughts and helpful comments. I quite understand about not talking to those nearest and dearest just now - its maybe a bit like you need to test out what you really feel about taking a treatment break or stopping. I just wanted to say that I used to work in a hospital and some doctors are great at talking about treatment breaks and ending treatment to get quality not quantity of life- BUT some really aren’t good at it - some docs are just keen to treat treat treat cos its in their psyche - So I wondered if you could find someone else to also talk to , like a Macmillan nurse or your BCN.
also my OH is an Onc and is very very keen on people having breaks when they feel like it and stopping when they want to ,
finally my friend Julia Darling who wrote lots of poems about having breast cancer had a stamp made…it read
" I know my body better than you do"
she used to stamp it all over her notes!!! Hee hee…but it put me in mind that this is your body, your life, so fine for you to check out whatever suits you…
very best wishes Nicola
Nicola, re Julia, I’ll send you a PM.
Hi Moorcow, I appreciate what you say, because I trained as a nurse many years ago, and know that some doctors don’t know when to stop. However, I think if francescap29 is going to discuss something like a chemo break, or the possibility of more localised treatments, such as surgery or stereotactic rads for the lung mets, then it is more appropriate to speak to the person responsible for managing her treatment.
Hi there fancesca
so sorry you are feeling low. You have been through an awful lot at such a young age+ are bound to have low points. I think the secondaries road is more frightening for us triple neg ladies as our treatment options are much more limited. But you have several chemo options still to try- platinums and taxanes included, which often have great results. I’m sure the thought of iv chemo again is utterly depressing for you but you will get through it. I’m coming tiwards the end of 6cycles of carboplatin + it hasn’t been too bad. I had a piccline inserted + recommend it if like me, your veins are shot from the fec. I’ve heard the parp treatments are very intensive so if yu managed that ok, then standard 3weekly chemo should be a breeze. I felt I couldn’t face chemo before I started in January-I think it was partly fear as several oncologist warned me that my cancer might be chemo resistant so I was on a downer before starting. Thankfully my mid treatment scan showed no progression + significant reduction in target Nodes 
Im sure you will feel more positive once you get started + once you get news of how it’s working.
I too think about how much treatment I can take but for now I’m happy to keep going as I feel pretty well + pretty normal most of the time. More importantly, I have a 2yr old who keeps me going + I want to be here as long as poss for him. I think I will give it more serious thought as and when I start to feel poorly.
Have you had any counselling? I’ve had one session + it helped to open up about my fears- although I did feel a
bit of a downer. I’m going to book some more sessions for next month after my chemo.
There is a thread on the living with secondary bc section called ‘triple neg recurrences/ secondaries’ that you might like to join. There are quite a few tn ladies on there now at various stages in their secondary journeys and I’m sure you will get support + advice there. Obviously you can pm me any time if you want to chat too.
All the best
tina xx
Thanks everyone - yep I’ve been having regular counselling which, up until now, has been great as I’ve really been fine. Still working full-time, still trying to get a (lovely) new relationship off the ground, still seeing my friends and doing all the things I used to. I don’t know where this bleakness is coming from! Tina, re parps - they were easy peasy, am finding gemcarbo tough, a lot tougher than I thought and I also forgot how the anti-sickness stuff sent me a bit mad as well. I have a portacath fitted so the vein thing is no prob.
But thanks to everyone for their help and suggestions, I think it’s possibly time to have ‘the conversation’ I’ve been dreading with my oncologist, been putting it off for long enough. Urgh.
Hope you are all well!