I’m not brave

It is a horrible place we find ourselves in. I so agree with you, sometimes I think the brave thing is to say no but it is so tempting to cling to hope rather than the alternative. I have just started my first round of a new chemo (Folfiri) I feel like crap and I feel I am trading my relatively symptom free good health for chemo hell without the reassurance that I will have good times again. A longer life is not necessarily a better life but I don't know if I will have the guts to say no when the time comes.

I am not yet where you are as I have a few alternative treatments left, but in my opinion there isn't a right or wrong answer or even a brave answer really. You just have to go with your gut instinct, and if carrying on with treatment because it gives you a sense that you are trying or this isn't the end yet, brings you comfort, then this is as valid a reason as any.

Don't see it as brave or not, just as us being human with all the associated foibles, and choose what is right for you. Making a conscious choice is liberating as long as you put yourself at the centre of the decision making process. You need to be happy with the choices that you make.

Oh I agree, we don't get superpowers along with our diagnosis. When people tell me I'm braver and stronger than they are I realise that it's mainly for their own benefit.

I went from feeling well to being completely miserable on oral chemo. Before long I was having medication to manage side effects from the medication prescribed to manage the side effects from the chemo....

The dose was halved and once things settled I refused to go back on the full dose. I don't regret that decision because I had another 6 months with a much better quality of life. 

Although it was disappointing to go back on IV chemo when the time came I was grateful to be offered it. The survival instinct is still very strong but there are limits.

I think as Nicky Nosher says it's probably more a gut feeling, there's no right answer but a decision that's right for you. I do think it's very important that you talk to your Oncologist about how you're feeling and what they're hoping to achieve with any further treatment. 

Good luck tomorrow.

xx

Heya,

I agree that on the whole it isn't brave to do what the doctors are telling us throughout our journey's. As Tina says, it's the survival instinct that makes us do what we need to, to live as we wish to. Anyone with a diagnosis will take those steps, sometimes after a wobble, sometimes with a stiff upper lip, and every reaction in between. But just about everyone put in this situation will do what they need to.

Where bravery comes in isn't just in saying no to treatment and taking what comes, but also sometimes in saying yes to trial, experimental or new treatments, or long standing treatments that might make you worse without making you better.  Sometimes it's in logging on here and admitting how you are feeling, that you don't feel as strong as you/society thinks you should be, that you are scared, that you are angry.

There are all sorts of little things that make people brave in their choices in life, and sometimes, even just living is being brave.

Lass

xx

Hi When I started on the journey and people said to me just what they are saying to you, that I was brave and they didn't think they would be able to face it. I used to say that I'm not brave at all,  what choice do I have and that all I was doing was trying to live one day at a time. When I was told I had stage 4 terminal cancer there was no mention of treatment. On my next visit I asked if there were any trials for new drugs or anything similar I could at least try, so that I was giving it my best shot. A few weeks later my oncologist told me I could go on a trial drug! As, I think it was Lass who said it's brave going on a trial drug or new chemo as you don't know what's ahead. Everyone here have given you good replies or advice but I know for me the time will come IF again they say there is no treatment available including trials etc, THEN I will be devastated! I also had to reduce the dose of the new drug due to side effects and refused to go back on the full dose because I was so ill with it, that wasn't living. So we do have control to say yes or no and I think either are brave decisions. These days, I never use the word terminal because although I am incurable, there are now treatments out there that I can try  if /when the cancer returns so I am treatable. 

As someone else said, you should have this discussion with your oncologist at your next appointment, I'm sure you will feel better for it.   I wonder have you and your husband discussed it? I have with mine!

Hi thanks for all your supportive words.yes I have discussed things with my husband he says he will support me whatever I decide.i just wish this damned virus would go away and we can all get on with the life we have .i need my friends and family for them I can put on a smile and everything is OK.

today I see oncologist so hopefully I can get back on track

Hi there, I’m sorry to reply to your post so late, I was in a similar dilemma in February about treatment and it is very difficult to make any decisions I know.

take your time with any decisions you make. And good luck with the consultant today, I hope you get good options ahead. 

as regards being brave, I always think a lot of cancer patients have a quiet courage, whether it is to carry on with often hard treatments, or say no and take what comes.  It’s often not what’s called bravery, as we have no option really but it is courage none the less.

best of luck today xxxx

Hi

Oh yes. The old “you’re so brave” chestnut. I think you’ve had some wonderful replies from people in this group. Brave has many faces, and I’m sure you show more than one of them even if you don’t feel it.

I think people tell us we are brave because we are facing something that they dread, and they do wonder how they would cope. Sometimes they don’t know what else to say. I don’t think it’s actually my job to help someone know what to say, but I do try to be kind when I reply. I just say thank you, that’s very kind of you, but I don’t feel especially pray. I feel as though I’m doing what I have to do.

I don’t think it’s actually my job to help someone know what to say, but I do try to be kind when I reply. I just say thank you, that’s very kind of you, but I don’t feel especially brave. I feel as though I’m doing what I have to do.

The issue of whether to continue with treatment is quite another matter altogether. I’ve recently been working through something similar myself. I’ve reached the end of clinical trial options, after the failure of the third trial I have tried there is nothing left for me at the trials unit.

My consultant has offered me some chemotherapy. My daughters are against me going ahead, based on their experience of seeing me go through it three times. I have my doubts myself. Will it simply make me feel worse for very little gain?

Because I’ve been treated at the trials unit, I’ve been lucky enough to have some really good doctor time with the chance to explore the options thoroughly. I find that in general doctors are unwilling to give you outright recommendations. I do understand it, outcomes are uncertain and they can’t be held hostage to fortune. So I try to ask the clever questions. I try to listen very carefully to what I’m being told.

For me, the killer question is not around statistics or Numbers. It’s will this do me more harm than good. I’ve listened very carefully to what my doctors have  said. I’ve been able to reflect this back to them and ask “I think I have heard you tell me that this will do me more good than harm, I think I have heard you tell me that I am too well to give up now. Am I right?” My oncologist was able to tell me straight: yes.

So I will be going with a heavy heart info another summer of chemo. Is it brave? I don’t think so. The alternative is hardly more attractive. Will people tell me I’m brave? Oh most assuredly they will. And I shall smile 

xx

Daloni your words are so true.we say what people want to hear.like you say it’s asking the oncologist the right questions.

yesterday Oncologist recommended another course of chemo I agreed but then she said you don’t have to decide now Think about it and I’ll phone you next week and then you can let me know!!!! So a week of swinging between yes and no.

i think even the breast cancer nurse was surprised she said she would book me in for chemo the following week anyway as it could always be cancelled.

this oncologist is new and has yet to win my confidence I had so much faith in the last one.living in a rural area we have to take what we get.

stay safe all

xx

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