Hi there
I have posted quite a few times but will tell you my story…
BC + liver mets together in 2002 then leukemia in 2004 ( that is now in remission).
I now have mets to the bones and lungs and having had sooooooo many chemios that I decided to stop all chemio treatment last Oct 2008 as it wasnt working and I was feeling so bad and quite honestly just kept going last year. My markers were at the time 250.
I saw the BC specalist last week and the markers had shot up to 2700 and it seems that the mets are on the move on the bones but not on the liver or the lungs for the moment .
We chatted about what I wanted and what the spec would give me and her answer was from the specialist point of view it was more chemio but she as a person could understand that I didnt want to go there again.
I have quite a bit of pain in the bones but she recons that she can help me with that . I already have zometa but that isnt working enough.
So I still dont want to do the chemio as she cant say that it will work and probably not as I have had so many sorts of chemio with the BC and with the Leukaemia.
I know that I have made the right decision for me… and my husband understands my way of thinking and supports me .
BUT…
Am I being selfish towards my kids ??? They are 29 and 31 so not little and yes they understand my way of thinking especially as my daughter is a paramedic and sees so may people who stick to chemio come what may .They say they agree with my decision and understand .
BUT there is a good chance that I wont be there for them if they have kids or just be there for them when they need me .
Should I re do the chemio to try and last as long as possible come what may.
Last year I did nothing and this year I have already been to Tunisia and am going to Portugal and Bruges in the next months .
I am alive and kicking and sod the cancer but is it fair???
AM I JUST BEING SELFISH AND THINKING OF ME
It so difficult to put it all into words and I need food for thought please
Thanks jANE
My mum stopped all treatment at the end of last year, it is hard but i think i would of made the same decision if i was in her position. All i want is quality of life of my mum. For the last two years we knew this was coming and we have used our time well with family hols etc. Now i am grateful for all our chats and hugs we have now. We all are going to die one day and it is up to us how we spend our time living. XX
Dear Jane
I can’t tell you how much it means to me to read your honest and heartfelt post. In a nutshell it sounds to me as though you are making the most sane, rational and right decision for yourself. I think it is hard decision for many reasons…particularly perhaps the pressure you feel that you are somehow being ‘selfish’. I think it is hard for those who choose to discontinue treatment to sit alongside those for whom taking every last treatment is symbolic of not ‘giving up’.
I am in a different position from you in that my cnacer has not yet spread as far as yours. I have an unusual pattern of spread with widespread regional metasteses in my neck and chest wall. I’ve had them for nearly two years nad in that time have had vinorelbine, xeloda, carboplatin, gemzar, taxol and vinorelbine again. The tumours are steadily grwoing still. There is a query on my lungs…otherwise last scan OK on major organs. The tumours have damaged my eye nerve and my vocal chords so I have a very weak voice. Chemotherapy makes me very tired and has considerably disrupted the possibility of holidays and nice times etc.
Basically vinorelbine is probably my last standard chemotherapy treatment (cancer triple negative) and though some of my tumours feel softer others don’t. I have had a second opinion at the Marsden and really the only option is possibly a PARP inhibitor Phase 1 trial. I know that phase 1 trials rarely lead anywhere, I don’t live near the Marsden and am not particularly keen.
I feel there will soon be atime when I will stop treatment. I’m not going racing round the world for options such as abraxnae, sutent, and avastin which ar emore commonly used in the USA and Europe because the trial evidence on these drugs doesn’t thrill me. I don’t see myself as giving up. I know cnacer is eventually going to kill me and want as much well time as I can posisbly get (my tumours cause back pain and this has got worse during chemo…I already resent the loss of walking as a pastime with my partner).
This is about me not you but I just wanted you to know that I am someone who is thinking along similar lines to you. Rarely on these forums does anyone ever discuss the average benefits from doing this or that chemo. Yes sometimes chemo is very successful…there are great stories of some tumours melting away on xeloda or taxol or…or…but mine never did that! For many people there is a matter of weeks difference, if that, in taking another chemotherapy rather than declining it. So your question about whether to take chemo and try to last as long as possible may not even be a relevant question if it doesn’t work. Sometimes people die quicker on chemo!
I know that some people find that chemotherapy relieves cancer symptoms and certainly for me the vinorelbine this time has helped my very bad lymphoedema (caused by cancer blocking lymph) so sometimes deciding not to have chemo does mean perhaps worsening symptoms…but as my onc says ‘other solutions’ can be found for those.
I don’t think you are being selfish and even if you are surely this is the most funadmental thing to be selfish about. It sounds like you have wonderful understanding and support from your husband and daughters…I hope you can have as much good time with them as possible and sod the cancer.
And thank you for helping me feel a bit less alone in my thinking.
very best wishes
Jane x
Jane,
You are not being selfish at all. These are difficult choices but it is important that you do what is right for you.
I think you are very clear what you would like to do so I wonder why you are asking for the views of others. Is it because you want someone to tell you to keep going with treatment and not close the door on therapy? If someone tried to push you into having further treatment, would your decision be easier? Maybe you would then become more determined to do what you feel is right for you. Maybe everyone is being too understanding?
This disease is horrible because it forces us to make decisions that we would rather not have to make. It is the finality of each decision that is scary.
For all of us, quality of life should be important. If you feel that yours has been compromised enough by having to endure all the treatments you have had, I’m sure anyone would understand your choice to refuse further treatment.
Your children will be ok, they will appreciate the fact that you are living the life that you want, rather than sitting for endless hours in the cancer unit with side effects a worry. I hope you become more comfortable with your decision and enjoy some really lovely days on holiday!
Anne x
Dear Jane again
I can understand why you are asking for views even though you have pretty much made your mind up. I think the prevailing thinking in cancerworld is to keep taking tretaments…indeed to not do so is talked about as ‘giving up’ which is horrible…and untrue. I know I feel empathy for your decision, it helps me, and it is so good to hear of it because most people who use on line forums don’t seem to take your decision.
And it is possible of course to change your mind later!
best wishes
Jane
Hi Janes,
First of all, I hope I didn’t seem to be challenging the need to seek the views of others. That was not my intention. I was hoping that my considered questions would help you have more confidence in your decision such that the choice you make is a very positive one for you and your family. As Jane RA says, ‘giving up’ shouldn’t come into it.
I too am very glad that you have put on this honest post to start this very important thread.
Best wishes
Anne x
Daviel,
Your post says it all.
Anne x
Hi there girls
thanks for the support and ideas and dont worry Anne th as i challenge myself all the time and I think we need to .
Thanks Jane RA as I too am glad that you are out there to share thoughts .
As you all say I have really made up my own mind as to what I want to do but I still thinks its good to knock other ideas aeound.
As you said I can always change my mind and go back to chemio but I doubt it. I want quality time now with hubby and the kids and tend to get it .
I am still afraid but its ok.
A big thanks to Daviel as I needed to hear a daughters point of view.
Lets all keep in touch and …kick cancer…
Luv jANE
Hi Jane
I don’t think you are being selfish at all - you really do sound as if you have thought it all through very clearly and discussed it fully with both your husband and your children. I really hope that when I reach the stage you are at (I am currently one of those that xeloda is working very well for) I too can be as clear about things and that my family are as supportive of me and the decision I reach, as yours seem to be of you.
Enjoy Portugal and Bruges - and here is to quality of life which for me is more important that quantity! Though, as JaneRA says. we are always entitled to change our minds.
Good luck Kay x
I think there is always more guilt about this, when you are a mother. After all we are always supposed to be there for our children, help them through difficult things, and we find ourselves causing them more pain and suffering with our illness then anything else. At least this is my dilemma, and it sounds like yours too. After a lifetime of putting others needs first, it’s difficult to locate our needs much less satisfy them. After all it once was, when they were younger, ‘if they were happy you were happy’.
However if i’ve learned anything in recent years it is this. They are not happy unless you are happy, and believe me (if they are like most loving kids)they do not want you to do things for them out of guilt. They want you to be happy, whatever that may mean. Granted with either decision you are not going to be happy, but if you do what is right for you, I daresay you will be less troubled. Above all please do chuck the notion of selfishness out of the window. Only you can choose what is right for you here, and if they love you, and they clearly do, they will understand.
I am not in your situation, but I am concerned that the chemo may help the pain you are currently experiencing in your bones, I’m not talking about life extending but life enhancing - that seems to be the question.
I hope that your holidays go as well as they can, and it will give you an opportunity for rest and relaxation.
Take care
…please don’t think i am saying that it is worse when you are a parent, but this post reflected difficulties with children specifically. I just think the issues are different whether you are a parent or not, not better or worse just different.
I have completely deleted this post in the light of the comments which follow.
Feel really upset by your comments celeste and Anne.
Jane
Maybe I’m wrong, but I thought this was a request for ‘food for thought’ an opportunity to ‘kick ideas around’, I think that was acknowledged and varying views were offered. I don’t think anyone was of the view that this was 'giving up or ‘selfish’.
However I do think JaneRA there is a subtle and significant difference from this discussion, to ‘keeping a thread going for those of us deciding not to pursue further treatment (or those…sensibly viable ones’).Forgive me if I’m wrong, but this feels much more of an imposition of your view on this thread than a discussion it initially was.
Personally I think It would be more appropriate to open a separate thread, for those who feel the same. I do feel Jane may have made her decision, it may be newly formed, either way, I do not feel she should necessrly have the pressure that your last post may have inadvertantly placed on her.
Have to agree, I’m afraid. This thread is not the place for politics or influence. It’s about Jane’s honest, heart-felt and personal decision to enjoy life as she chooses and as much as she can.
Anne x
I feel very very angry about the last two posts. I have deleted my post so celeste and Anne your comments won’t make sense. I will contact the other Jane privately.
Jane
I am sad that there is upset and anger resulting from us trying to express our feelings about forthcoming death… but it is such a difficult thing to talk about (let alone do online) I suppose that it may be inevitable for people to be passionate and to disagree.
For my part I can fully understand a decision to stop the sort of invasive treatment that we have to endure. Especially as there is so little certainty that such treatment is indeed prolonging life. I suppose that many of us will have to take the decision whether to stop treatment at some stage.
I get the impression that my oncologist is increasingly getting me accustomed to the knowledge that further treatment is ‘speculative’ and there is doubt as to whether it will help or not. I don’t think this is entirely a cost benefit exercise! there does seem to me a path whereby accepting a (more or less) natural progression towards death (albeit a fully medicated death)is the best decision.
I think the threads about recent articles in the press are really interesting … maybe it is better to discuss these things based on articles rather than a specific case.
Lottie ( at risk of sounding like trying to be preachy, but I have been thinking about this exchange all day)
Hi there girls
Please please dont fall out over me .
It was my way of thinking out loud as I have no one here to talk to as all my friends have decided that I just want to give in and die…
No way …I made my decision last October and having seen the specialist again a couple of weeks ago for an up date I know that I / me / myself have made the right decision but I needed food for thought to see if I was being selfish.
I would have found it hard if my kids had shouted at me to continue with chemio but I think I would still have kept to my way of thinking. NO chemio .
Its probably the first time that I have come face to face with the fact that this bloody cancer will win in the end but by hell it will be a fight.
I can understand people who do chemio till the end and mine was a very personal decision . Am I right?? I will never know but I feel strong now and hope it keeps up as long as possible .
I need all of you to be there for me wether you agree with my decision or not and hope I will be there for other people and we should be able to talk about everything here.
Death is not easy to put into words but for me I have to think about it now and need to talk about it.
Thanks for all your replys and lets stick together
Bye and luv jANE
Hi everyone,
it just goes to show, we may all have cancer but there the similarities end. Our cancers are all different and the way we respond to treatments are different our opinions are very different so let’s embrace that. The one thing that we will all experience is death, whether we are ready or not. If we choose to pursue the miracle cure, take what is given or decline what is available that has to be our personal choice and I for one respect the opions that have been expressed on this thread.
It is times like this I wish I was more eloquant and had paid more attention to Miss Horridge.
Love Debxxx
Well Jane,
Glad you came back, I was a bit worried that you would think that the website was plagued by squabbling idiots!
It is really tough thinking about end-of-life choices and it brings out a rawness in us all. I for one have been panicking about this myself lately but to be honest, it is too soon for me to be making myself think about it again. At diagnosis, I had to think about it hard. I realise that I have a few treatments in the bag yet, so as long as no complications or transformations to a more aggressive disease occur, I should try and live in the moment. So, I may only manage sporadic contributions on this thread. I will keep an eye on it though to hear what you’ve been up to though!
Life is for living, be it for a few weeks, months or years so we’d better seek as many things along the way to make us happy and enjoy the ride and let go of the stuff that makes us miserable including, at a time that’s right for us, treatment.
Anne x
Hi Jane,
Don’t worry, we may all cross swords from time to time, but I think we all know that life is too short for any falling out to cause permanent damage.
Is your decision right? Well Jane it’s yours so how can it be wrong. I’m sure all of us will here for you - given of course that you don’t out live us!
~Take care Jane