Hi Geraldine
sorry to hear you are in the same boat! I have found lots of answers on this site we may never get a chance to meet our cyber buddies but they have become as important as many of my family and friends. I think the best tip is stay positive, ask questions and make notes at all appointments, eyes may roll but I am so glad I have my little book! I don’t know if you have lost your hair before I found this really sad the first time so after my third taxol I took control and rang my hairdresser and he came and gave Ian and me matching cuts I must say he looked loads better than I did and his is growing really lovely I look like Gollum from Lord of the rings!
Love Debs x
Thnaks for all your comments, I got a lot of questions answered by the stand in onc, as mine was on holiday, I am waiting on an appointment to speak to my own onc about this which should be next week. There are many new questions I want to ask now I have had time to think about the meeting. I will keep you up to date.
Diane
Good luck Diane - I feel I am just going with the flow at the moment and taking what is being offered, I need to take control of the situation but just don’t know how to. I am being offered Avastin and Taxotere - which appears a good option but am concerned that all the big guns are being used early - if they don’t work what’s left?
I still have a great sense of despair which I guess will take sometime to shake off,
You are still relatively new with your diagnosis - are you working? are you resting? I want to keep busy but I’m just not sure what to do!
Hopege
There are still options after the ‘big guns’ of tax and avastin. I had 8 sessions which knocked the cancer back a bit and now am on Arimidex which (touch wood) seems to be keeping it dormant at present. And I can also assure you that the quality of life is MUCH better. After that - well it varies from case to case but there are more hormonals, more chemos - even the same chemo again if you were still responding at the end of the treatment. I won’t say don’t worry - we all have those moments of lying awake and thinking about the future - but don’t despair, there is still life left to live.
Incidentally I saw your other post about working with secondaries. I didn’t work during the tax+avastin chemo as my onc didn’t want me exposed to infection and my job involves quite a bit of travel, but I’m back at work fulltime now I’m on the hormonals and coping OK. How you feel with chemo varies enormously but I confess that for the first 6 of the tax+ avastin treatment I felt fine except for a few days a month. I decided to stay in touch with work and went to occasional meetings (if they were ones that interested me) but was able to ignore the stuff I didn’t like. The positive thing about this was keeping in touch with people and not feeling like some sort of cancer hermit. I also started doing some of those things I have been meaning to do for ages - lots of gardening (with gloves on), learning to sketch and watercolour (still rubbish, but love it!) and also allowed myself the luxury of lounging about with a book more than I usually do. I did find that my concentration was zapped by the chemo though, so couldn’t do too much which involved thinking. So my advice, for what it’s worth, is keep as busy as you feel able to be with things you enjoy - but don’t allow yourself to be pressured into doing more than you are comfortable with.
All the very best.
Barbara
I am planning on going back to work, my work are happy for me to do as little or as much as i can when on treatment which is a real bonus. It’s not for financial reasons because I have a policy that would provide me with a monthly amount it’s more about me trying to get some sense of normality back into my life even if it is a ‘new norm’
Diane
Hi Diane
I’m in the same position - I have a work policy which will give me 3/4 of my salary if I have to give up because of illhealth and some mornings getting creakily out of bed I wonder why the hell I bother. It is about normality, keeping in touch with people, being stimulated and stretched and believing it’s still possible to have new experiences and learn new things. My kids are grown up and I think I would probably feel very differently if I had small children but to give up while I can work and without something to focus on at home seems too much like sitting back and waiting to die. On the other hand if either of my daughters presents me with a grandchild in the near future that’s it - fulltime granny.
Barbara
Hi Barbara, Geraldine
Same here…thank god I have the comfort of that policy. but at the moment I have chosen not to take it…like you I sometimes wonder why I am doing this, but when I get here I think OK- this is normal, I like my colleagues and I can forget for the moment about cancer. Mind you I do get these wierd moments standing by the photocopuer thinking - what am I doing!!!
Take a bit of time - its a horrible shock and you need to be thinking a little clearly before you take any decisions based on it,
take care
cathy
Thanks
I’m felt a bit a downer the last two or three days, I got my chemo last Wed so Thursday and Friday i was absolutely hyper from all the steroids. The I feel absolutely exhausted and am finding that it is taking me the best part of a week to get over the taxotere. I feel really miserable and fed up today - I just keep thinking that this is how my life is going to be now! To be honest with two girls age 9 and 6 I would take it 10 times worse that this forever if it meant seeing them grown up (which I hope to do)
I am triple negative and really struggle with the fact that after the chemo we do not get any drugs to slow the cancer down etc - is there anybody else that has has secondaries and is triple negative that may be able to brighten my spirits a little, I’ve been fine for a couple of weeks but for some reason today and feeling terrifed about everything again!
Diane
Sorry you’re feeling so down - I’m on the up - steroids and having started chemo. My cancer is midly hormone positive but obviously tamoxifen didn’t keep it at bay! It is my children that break my heart - I agree with you I would do anything to make sure I am around for them!
I’m sure there will be lost of highs and lows as we go through this - Take Care.
Geraldine