Friday, 19 August 2011

to chemo or not to chemo...........

The pressure is unbelievable.  We start chemo in a week, and not because I think it is the right decision but because of pressure from everyone else - particularly family.

 I'm not sure I believe it would have any real benefit - there is no way to test if it works, or even if there are any cells for it to work on.  The research  for one of the drugs is based on research done on a 'similar' drug.  There isn't research on their interactions.  There isn't any information on anything really.  One of them has the same chance of giving me a heart prob that can kill me as it does of improving my overall survivall. The onco said they have one lady who - 2 years after chemo - is only just getting feeling back in her hands and fingers.  I don't want to do it, but then who would.  It doesn't necessarily mean I wont do it.  I went and had my breasts cut off and I most certainly didn't want to do that.

And people are so naive.  They really believe that I will die if I don't have the chemo and so they ring me and say "I want you to be around" and "I want you to live, please do it" and bla bla.  Well actually it's not about what everybody else wants, it's about what I want.  And there is nothing that says that either I will die if I don't have it, or that it will work if I do.  But they don't want to hear that.  It challenges the belief that chemo will 'fix' it.  Which is kind of what I thought when all this started.  Now I know better.

I am sick of hearing what everyone else wants.  Then there is the guilt trip tack that people try and take which I find even more frustrating and low. "You want to be around for your kids".  How dare people use my children as a bribe to try to make me take chemo.  And how dare they assume to know what I want or that I need speaking for. And yet it is the most common comment I get.  The fact that people whould stoop that low is incredible.  Yet more unbelievable is the fear that drives those comments, and no matter how hard I try to explain to people that chemo is no sort of gaurantee of anything except side effects they don't want to hear it.

Now I know that this all comes from a good place and I know that people are actually trying to be helpful or express their concern and love for me but how about "I love you, do what you think is right for you".  That would work much much better.  I understand that people are having a hard time coping with how looking at the mortality of someone they love makes them feel (and I know that everyone wants to be able to hang out with me for as long as possible because basically I am super-wicked-awesome).

So I am going to do chemo not because I think it will 'fix' anything but because pressure from other people is pretty much the only tangible thing there is.  If I didn't have that pressure I would end up not doing it by default because I don't have enough information either way.  Is that bad or normal?  Sometimes I wish I had more faith in the medical system, unfortunately I work in it so I know all is not how it appears.

I will pump my body full of toxic poison and hope for the most side effects I can because that at least is a sign that the chemo might be doing something.  I will trash my ovaries and risk the possibility of having more babies because then other people will feel better about my breast cancer.  I will risk my life for the same chance of extending my life so that I can do the 'right thing' by my children.

God help you all if I get a sunburnt head.....  :-)


  1. You do need to do what is right for you. That being said, please take the chemo. I stumbled across this blog and have been following your story since before your surgery because it brings me some insight into my mother's journey. She died when I was 15 years old. I NEVER normally tell cancer fighters that but in this case I feel that you may need to hear it. She delayed getting diagnosed and treated for reasons I do not understand and won't because she is gone. Please please do the treatment for yourself. I know that it will suck and make you feel awful and I really do not want you to get a sunburned head, but it just might make all the difference in your recovery.

    Love from the daughter of a fighter

  2. You couldn't pay me enough to pump that crap into my body (and yes, I have kids). You're a braver woman than me.

  3. I get you are really stuck between two massive rock and a very hard place and you have every right to feel really pissed off. Jaynie you do rock and I guess you will do what you think is right in the end , people that know you will only be coming from a place of love no matter what they are saying Love and light Tracey

  4. Jaynie you Are super-wicked-awesome. The thing that I admire about you most is your incredibly strong instincts, and KNOWING.Your birth stories are such an inspiration, and I am constantly telling them to all who will listen. My frustration at how people are responding to your decision making process is beyond belief. Please try to shut your ears, your eyes and your mind and tap into those instincts that are so strong. Your answer is there, and whatever you decide to do will, then, be the right decision for you. I am really, really trying hard to trust the universe to make it all okay. Seems a much better option than trusting a DHB :) Love you loads Jaynie xxxx Victoria

  5. My mother fought (and won) Breast Cancer last year. The hardest thing I had to deal with was other people. People simply do not know how to support people with Cancer, or even support their family. Regarding Chemo, my Mum did it and while it was only "mop-up" chemo I think it gave her some piece of mind. She and I have both blogged about it if you're in to reading about other people's journeys. It will be hard at times but you seem so strong.

    All the best,
    Nicole X

    P.S No one told us that chemo patients get weird cravings, at all times of the day or night. Just thought I'd let you know.

  6. I have cancer and am incredibly thankful that the type I have is not responsive to chemo, it's a decision I would hate to have to make. I think this is a decision you need to make on your own, as someone said earlier, shut everything out and listen to your inner voice. I do think though that if you decide to have it you need to think positively about it and embrace it, if you decide not to have it embrace that decision too.

  7. I think you should do what you feel is right for you and not what others think you should do. I know I would not be able to do chemo because I would be so afraid of the side effects that it wouldn't do me any good. I'm a nurse and know several people who did chemo and actually died from the side effects- yes that is true- they actually died from the side effects!! The alternative clinics won't even take you if you have take chemo, because it causes so much damage. There is so much you can do for yourself to enhance your immune system and I think, overcome any renegade cells. I truly believe that fighting cancer is lifelong job that includes many avenues including lifestyle changes, nutrition, supplements etc, but not necessarily chemo...

  8. I am so sorry that you are going through this. My heart sends you love every day even though you don't know me. I had a close friend die from breast cancer and she did everything the doctor said. I would NEVER do chemo and to hell with all the uneducated people who pull their guilt trips. I have done a lot more research than they did. They know NOTHING yet feel the need to pull you into the mainstream line. If your instincts tell you to do the chemo, that this is your best chance, then please do it. You will need it to be your decision though, because you will need the mental fortitude to get through the crappy feelings and to convince your body that it is healing. Otherwise you will feel resentment the whole way, not a healing mindset. So horrible, people should just be supporting you, giving you positive energy for whatever you feel is right. Not putting stress on you if you decide something that might not be the most popular idea. You will have to be very in tune with your heart now, and your heart will guide you to the right answer. Start wearing a badge or label that says "Opinions are NOT wanted. Support only please" if that helps.

    I went through that with my birth. I was super overdue and resisting induction if there was no sign that anything was wrong. Yet people kept saying "don't you want what is best for your baby"? Duh, no, I just carried him for 9.75 months and now I don't give a stuff. No, dumbass, I am going out on a very scary limb here because I think this is what is best for him. I am protecting him with everything I have. Grrr. People are so dumb sometimes. Anyway put on your best advice repellent coat and let it all slide off you or I am serious about wearing a sticker saying what you want and don't need, people do want to comply if they know!

    There are a lot of alternative health things out there to support you. Here are a few great links: this doc is apparently curing cancer without side effects. i think you can watch it for free if you look on utube.

    and here is a link for homemade baby formula as spoken of by NOurishing Traditions and the Weston Price Foundation, an amazing health group. How are the BM donations going?

    And there is another movie, I can't quite remember the name of it right now, about a clinic curing cancer that moved over the border into South America as anyone who challenges big pharma can't practce in the states, they do juice fasting and colonics and supplement with iodine and a few herbal things, and apparently they have an amazing cure rate too. There are lots of things that can be done to heal and nourish and strengthen your body. It can heal itself! You did great wtih the surgery, sometimes you do have to take the difficult piece out. But unless cancer is chomping at the bit, maybe you have some time now to heal... I am sorry that you are feeling stressed and pressured, you need to totally relax now as that is what you need for healing. Another sticker "I just need healing warm thoughts now please"?... or People don't know what you want as they have never been there. So tell them and then trust your heart. If you want help researching alternatives just post here. In any case, I totally support you whatever your decision. If you would like team rosy pink, people who offer nothing but support, then just say! And if you want support so you can feel good about taking the road less travelled, then I am totally there for you. Hugs, a stranger called Melissa

  9. My heart goes out to you and your family,I know they mean well BUT go with your gut feeling, I was on Dialysis for 17 years sent home to die ,get my affairs in order have a holiday they would keep me comfortable, I was sent an amazing product from USA in 1995 and in 1 mth I weeks back to normal so I am out there helping people to feel well. My wonderful sister gave me the gift of life nearly 6 yrs ago Yippee!
    If I had not had followed my gut feeling I would not be writing this today.No one knows what you are going through only you my dear.
    Oh I saw on TV in Perth this week Major break thru on Tumeric well thats what I took back in 1995 and every other day since. I know a few alternative DR's around Australia if you would like to know, Pauline WA

  10. Wow your family love you. I think that is wicked awesome.

  11. You are most certainly super-wicked-awesome!!!
    You are a strong woman, you know your own thoughts, and while it might be hard now trying to figure out which is best for you, i remember a woman who knew what she wanted. Dont let the cancer change who you are. You will make the right choice for you, you know you will. Listen to your own inner thoughts and follow your own instints. You and your family are the ONLY ones who matter during this process in your life. Cancer is mearly a story in your life, it is not your life, dont let it control you. Regardless of what you choose, our thoughts are with you always

  12. Having been through chemo, and all the effects of it, I question whether destroying the body's immune system is the way to go. Luckily I have not had a recurrence, but I wish there were a better way than chemo. I will be thinking of you, whatever you choose to do. Remember, this is about YOU and not what anyone else thinks.

  13. Here is a great link!!!

    There is a link to the movie The Beautiful Truth which discusses the Gerson Therapy, a remakable and effective natural healing therapy for cancer. It rocks!!!

    There is also some other great info there, like stack up on vit D! You can do this girl! Trust your heart, you know the best way to go. Defy society if you have to, they are just scared and it is automatic to look to authority figures when scared. But your heart knows the best way, so do not compromise it! You will find more love and support than you ever felt possible. Embrace this amazing journey, it will take you to some incredible places... The Force is with you...

  14. Sometimes you may feel like there is pressure coming from everyone and you seem alone in this journey. But everyone will be there going through it with you and are as scared as you are.
    You may need to open up and listen as there will be things you are listening to and taking on as negative and things that you are missing because of this.

    They are all trying to support you but maybe have little experience?

    What would you want them to do if your positions where switched?

    Try not to get caught up with researching I know from personal experience this can drive you crazy and you can never know what information is correct.

    Listen to your partner as well. This will all effect him, your life decisions are also his life decisions.

    We wish you well and hopefully works out for you.


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