Hi my name is Elizabeth and this is my first post:)

I was disgnosed with Stage 2 ovarian cancer in April at the and of 53. My sister died of breast cancer nearly 3 years ago at the age of 54 so after my diagnosis felt I was walking in her shoes towards the same end. All very scary.


I had surgery almost immediately after diagnosis and have just finished 6 cycles chemo. I was in Sydney when I was diagnosed so have been travelling to the Lifehouse for my treatment. My genetic testing came back positive to BRACA 1 which part explain this sad story.


I got through the chemo pretty well but I thought I'd feel a lot better now 4 weeks post but the fatigue and neuropathy in my feet is surprising. Infact I feel more tired now than during chemo. Also emotionally I feel alot of grief which is also spilling out every day. I think it's partly because I now have space enough to feel those feelings whereas during chemo, it's just head down.


Good to connect with fellow warriors. Thank you for your sharing


Lizx


 


 


 


 


 

Comments

  • Welcome Liz!


    It's incredible how during chemo you don't think, you just do.  Life is a never ending series of medical appointments.  I have found that you never celebrate finishing chemo until the side effects wear off.  6-8 weeks post chemo I usually feel normal.  I tested negative to BRCA but sometimes I wish it had come back as positive because there is a lot they can do with targeted gene therapy now.  To me it's an evil little blessing in disguise.  The first time I finished chemo it suddenly hit me and I realised the trauma I had been through.  People will tell you how brave and amazing you are for going through chemo and you think that it's not brave, your just doing what everyone does in this situation. It's not until you step back and think about what you have been through that you realise the physical and emotional trauma you have been through.


    Nikki

  • Hi Liz,


    Welcome to the forum.  You have been through a very tough time and I can understand your scary feelings, especially when you have lost your sister to breast cancer.  I am also a BRACA carrier, I have the BRACA2 gene mutation.  As Nikki says, it is an evil little blessing in disguise.  They are doing lots of research into gene mutations and I was on a trial for 18 months on a drug that targeted the gene mutation.  It is now 5 years since my first diagnosis.  A number of my family members also have the gene mutation and because of this knowledge they were able to take preventive surgery to reduce their risk of getting breast or ovarian cancer to a minimum.  I hope your family members are being proactive in this way.  There is a support group for BRACA called Pink Hope, they have a website and you may find this a useful tool to look at.


    It does take a while for your body to recover from the chemo, like Nikki it took me about 6 -8 weeks to recover fully.  You will feel normal again soon and you will just get on with life again.


    Take care Helen

  • Thank you for your replies and for the suggestions. My tiredness is also to do with me over doing it and not drinking enough. If there is one thing i have learnt from this it's to listen to my body more. If we are in more in-tune with it, then we  can give it what it needs and mine at the moment is screaming out REST!


    Hi


    I sometimes feel very lonely on this journey as no-one really understands unless they have been through it themselves and even then our journeys are so different. I also wonder why this has happened to me - does everyone ask those questions? I don't believe that my BRACA1 gene was totally responsible. I had infertility treatment in my 30's and also I mother died last July, plus I only just arrived in Australia from the UK 12 days before my diagnosis. I think stress had something to do with it.


    It's good to connect, thank you.


    Elizabeth x

  • I'm a big one for over doing it.  I feel fine so go into a frenzy of activity and wipe myself out.  I'm having chemo at the moment and one of the drugs is really rough of your heart so my pulse rate goes through the roof.  When that happens I have to stop, sit and breathe to get everything under control again.


    I try not to get caught up wondering why this happened to me.  My first diagnosis was 7 years ago when I was 30 and had my son and I've had 4 recurrences. I've just accepted that this is my life and I need to make the most of it.


    But that doesn't mean that you shouldn't let out all your worries.  That's what we're here for, to vent to.  We understand, we've been through it.  Now go buy yourself something pretty ?.


    Nikki

  • Hi Liz and everyone. This is my first post as it has been a whirlwind of medical intervention since my diagnosis. I am 65, have stage 2B ovarian Cancer and had a hysterectomy in Sydney 5 weeks ago. Last week I started my first round of chemotherapy and will have 6 treatments every 3 weeks in regional NSW.  I have had the blood test for BRACA (results not back yet) but have no history of breast cancer in the family.


    i am already hating the chemotherapy side effects and I am sure they are going to get much worse as I go along. Do the 2nd and 3rd weeks get easier before the next round or is it difficult all the time. I slept nearly all day yesterday with acute joint pain but today feeling pretty good. I am grateful that my children are all married and my husband and I can cope together.


    it is nice to know there are others to talk to, thanks.


    Chris

  • Hi Chris


    Great to hear from you. I finished my chemo 7 weeks ago now and I also had 6 cycles every 3 weeks in Sydney. The first was the worse for me  as my body went into shock, but after a few cycles it gets used to it. I always found the first 4/5 days difficult, more tiring but after that every day I would feel a little bit better. I made sure I drank lots of water to help flush out the toxins and I got back to my yoga as soon as I felt strong enough. I had a lot of neuropathic pain too mostly in the legs which was very uncomfortable but apart from that and the hair falling out, I didn't have any side affects. They say that you will feel worse as time goes on but I didn't but everyone is different.


    Just be kind and gentle to  yourself, eat lots of wholesome foods and meditate. Staying positive is so important. My brain went to mush as well and that's only just getting back to normal now.


    It's good that you have help, I pretty much did it alone which was harder but was doable. Friends started arriving from the UK in about the fourth cycle and then I realised what i had missed!


    Hope that helps. Let me know if you have any other questions.


    Elizabethxx

  • Hi Chris,  I just wanted to let you know that my worst lot of chemo was the first one, as I think it is such a big shock to your system.  I found that the I managed the next cycles of chemo a lot better and they didn't seem to be as bad as the first.  I agree with Elizabeth that the first 4/5 days are the worst and then you gradually pick up again.  The taxol didn't seem to affect me as much as the carbo did.  Drinking lots of water does help and when you feel up to it, going for a walk around the neighbourhood certainly helped me.  I have been fortunate to not get the tingling in my fingers and toes, so we are all seem to react differently to these chemo drugs.  Staying positive and getting support from your family and friends really helps.  Take care Helen

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