Friday, 17 June 2011

pretty much the worst day of my life yesterday...

Found out that the lump in the other side is cancer as well.  I know this means both breasts come off.  I know this means my baby boys will never be able to wean when they are ready.  i know this means that I only have one more week of breastfeeding - ever.  I know this means I will probably never have more babies. I know this means Bastian will cry - something we don't do.  And I sit on the side of the road in the car with my husband holding me and my 3 children asleep, and I cry and sob as my heart breaks.  This is the first time I have cried about the whole cancer thing.  It's not fair, my babies have the right to be breastfed.

I worry that I don't know how to mother without breastfeeding.  How will I console them the way they need it?  How will I stop the middle of the night wake ups, without a nipple to offer?  How will I hold my baby while he nuzzles at a bare chest and still be able to meet his needs?  I feel like I am lost.  I worked with both of my last two babies, taking them with me everywhere.  To visits with clients, up to the hospital for births, to clinics.  Not for a minute were they away from me.  But they had to be lugged around and spend hours in the car, and be un-stimulated in the clinics, and the trade-off that made me feel like it was ok and I could manage was that I demand fed.  Totally and utterly.  I have no inclination to work and thanks to the support of my wonderful working partner and the supportive midwives up here I don't have to for a little while, but it really made me feel like I was an ok mother.  And now I have to find a new way - I'm sure I will, but I don't want to.  I want the old way.  I know what heartache is now.  It's not right.

And every time I feed and sing to my boys I cry and I try to make Raife understand what is going to happen but I'm not sure if he does.  And Bastian looks so happy and I will never have that view again - I'll never look down and see that milky face pull cheekily at my nipple then snuggle back in making piggy noises.  I'll never feel the milk let down and hear my boys gulping back the milk and think to myself what a wonderful thing the body is. It's not right.

And my poor husband can't change anything.  His wife is losing one of the most important things in the world to her and he can only watch and hold my hand and cry with me - it's not right for him either.

And today I cry as I try to get my son to take a sippy bottle of breastmilk halfway through a feed.  And I think he will by Friday, but it sucks.  It's not right. 

So, I need all you wonderful women who can give us milk to be ready.  I have a friend in Auckland who is going to be my breastmilk pimp and she works with Trans Otway, so she is going to get something sorted for us as we need to get some up here by next week.  So please, please email me with your contact details and where you live - and if you have probs getting copies of antenatal bloods let me know as i can get them from your midwife with your permission. 

It's not right.


  1. Nothing I say right now is going to make this ok or any better, Just know that there is a whole lot of Mama's out here on your side. I am expressing as much as I can for you and you can be sure of one thing - that even though it is not right and different and not ok at the moment we will keep you and your babes in milk. Its the least we can do. Much thoughts and prayers x

  2. So, so sorry for all you are going through. You are truly a wonderful mother and your boys know that. They will know that you are doing what you need to do so that they can have a mother. I am a rabid pro breatfeeding mom, too, but had lots of trouble with it due to hormonal difficulties. I had to stop early with a few of my babies and it is heartbreaking, but you WILL find other ways to maintain that connection and nurture your children. We are still sending prayers and love from Northern California for you and your upcoming surgery. Please look into iodine and Vitamin D for cancer prevention and treatment. Here is the link for iodine information and breast cancer:
    And lots of vitamin D information can be found on the vitamin d council website, just google it.

    Stay strong, much love, Chris

  3. No it is not right. At all.

  4. My heart is just breaking for you. I am so so sorry for what you are going through. Sending you lots of love and healing thoughts. If the only thing I can do to help is to donate milk then I would be delighted to do so. I am going to look into the protocols for it now but I was wondering, are you only accepting milk from Auckland? I am on the south island. I was wondering if you could post some general info for people wanting to donate milk to you so they know if it is possible or not. I thought it might be easier for you to post info in your blog where everyone can read it rather than replying to individual emails. If not, I will email you in a couple of days! Just need to know if it is possible to ship from the south island. Do you have enough yet to cover you for the immediate time as I will have to start building up a stash. Also, how old is Bastian? I think our boys may be the same age. Hugs and love mama! We will do everything we can to keep your boys in mama milk! I am only sorry that we cannot do more. And I would just like to remind you that you are a wonderful mama and breastfeeding is not the single most important thing you can do for them, your love and consistency and wonderful parenting is! So there is still so much that your children will be getting from you. Although I do really feel your pain over losing breastfeeding.

  5. Hi Jaynie, Jen rang me a couple of days ago and I have been trying to hunt for this blog in the gaps of my crazy midwife life. I am ever so sorry that you are going through this. My heart breaks to read your words and I can only imagine what it would be like to have to think about mothering your babies without breast feeding them. It has been such an essential part of my children's lives. But I have been lucky enough to meet you and some of your lovely family, and know that you are a very lovely dynamic woman who will gain strength from these challenges, especially with all your family and friend's aroha. Jen asked me to spread the word about your need for breast milk, so I hope I haven't spoken out of turn by letting our local home birth group, La Leche League group and Bay of Plenty NZCOM chairperson know, so they can try to find milk donors. Arohanui Karen Donald/Van der Leden (Taupo midwife)

  6. Nope. Not right. Not right at all. Makes no sense. Wish I could do somethin', say somethin' that would make it change, go away, be better. Alas. Sending you hugs and good vibes & love.

    I'm going to say, though, that you sound like an awesome Mama. So loving & kind and all that good stuff babies need. And you're always going to be that wonderful Mama for them! That won't change. I'm sure about that!

    Much love.

  7. Jaynie. This is about the saddest thing I've ever read in my whole life but you still made me laugh out loud with the breastmilk pimp comment.

    You rock.

  8. yeah not right but.... I almost hate to say this.... better a not-able-to breastfeed any longer -mother and- thanks- for- all- the- feeding- you -gave -us mum than no mummy at all.....

  9. Oh my gosh! A friend just sent me a link to your blog. For the second time since my diagnosis with bc, I'm crying uncontrollably. Next month marks the two year mark since my diagnosis. I did not have to wean my children as they were already weaned and older than yours, but I breastfed for years and tandemed as well. Your story heartbreaking. I can't imagine....years and years and years in when I first got online in of the most influential long time nursing, gentle parenting mamas I met was diagnosed and had to abruptly wean her youngest after many years of nursing. Sadly, her personal story did not end well; however, her posts (and had blogs existed at the time, the blog she didn't have) were heart wrenching. Her children seem to have grown up and become solid citizens through it all, though. More recently, a close friend of mine had to wean her 2 yr old abruptly when she was diagnosed. She's about 3 years out from diagnosis, and doing well as are her children, I'm happy to say. I will share your blog with her and perhaps she'll contact your. I can say that my youngest son, who nursed for about 5 years, is still very much drawn to my breasts (such as they are these days) for comfort. My friend's younger son is as well, and also takes comfort in the "softness" of her tummy, since her reconstructed breasties don't feel quite like he'd like them too. So, although you won't be able to provide the nurishment, you will still find ample ways to provide the nurturing and physical closeness.

    Your children are very young and it appears that slinging is very important to you. I'd be very, very clear with your medical and rehab team that you'd like to recover to be able to continue with that practice, if at all possible. I, if need be, could sling a toddler or preschooler now, wearing the sling on my right shoulder. I so rarely used my left, which is the side that I have the most (minimal) complications with, so I don't know if I could, but I do manage to carry heavy book bags on that side for periods of time when I'm at work, etc.

    Please know that I'll be keeping you in my thoughts. And, although I'm older and have older children and didn't go through this with young'uns, I'd be more than happy to be of any type of support I can be.

    Feel free to check out my blog if you wish.
    The early months were more a day-to-day living with this cancer shit on a physical and emotional level kind of thing. It's kind of morphed since then into a more social commentary type blog, relating to cancer.

  10. No, it's not right Jaynie. Thinking of you and your boys. Hold them all tight.
    xx Charlotte

  11. Worth a look into since they have had good results with breast cancer patients....

    You will make it through this. You are a survivor.

  12. I am so sorry for your tragedy. I can't even begin to know what to say or how to express any support... Just know that there are people whom do not know you around the world today and tomorrow giving you love and support and positive energy as you embark on this journey. Your children will be supported by you despite the lack of breast to cuddle and feed from. As you hold your children look into their eyes knowing that you will be there for them tomorrow and forever and that itself is more than you could ever wish to give them.

    Again I am sorry

  13. Reading your story breaks my heart. I could never understand what you are going through but I feel your pain through your words. Even though I do not know you, everything I have read tells me that you are an amazing, brilliant mother and after your surgery you will continue to be an amazing, brilliant mother. While losing the gift of breastfeeding is going to be a terrible loss to you, it pales in comparison to what your children COULD lose. Be strong and know that there is a world of mothers out here rooting for you and supporting you, even if only with our words.

  14. Big, big hugs. I weaned my daughter (my 2nd child, aged 3) by mastectomy & chemo 3 years ago. The emotional pain was indescribable (way worse than the cancer treatment!), and I recognise so much of what I felt in what you have written here. If it's any help, your chest will still be your childrens' space, you will still be able to hold them in your arms in the same position you did when they nursed, once you have healed. It will still be a familiar position for all of you, and comfort will still be found there. I strongly recommend finding a good physiotherapist who can help with the physical strength and healing and regaining full use of your arms. You will be able to use a sling again. Give yourself time - it won't happen instantly. When the time was right, the kids had lots of fun with temporary tattoos! Perhaps consider getting an upper-torso cast of yourself done before surgery, if you can find someone to do it where you live? e.g. - "Other Casts" page. My husband also connected with the husband of another woman who had gone through this quite young, and he found that support very helpful too. All the best - I'll be thinking of you lots in the coming months. Liz

  15. I am so, so sorry. There's nothing I can say to help make this better for you but I wanted to let you know that you have people praying and sending good wishes for healing to you and your boys. Your mama heart will get you through this. Much love from the other side of the world <3

  16. I am so very sorry.. it is not fair.. life is not fair.. I am writing this through a stream of tears. my heart aches for you and your little ones. I will pray for you and your family.
    You are so brave.
    My tears will not stop... I am grieving for you and what you have to face.

  17. I am not able to be of use with milk (I am in Ohio in the US) but my thoughts and prayers are with you. KellyMom posted a link to this blog post through Facebook, in case you start getting a lot more traffic from far flung places. I am a mom of 3 myself (eldest just turned 7, youngest just turned 1, middle will be 4 next week) and aspire to live as healthy as you've been living (my births were all unmedicated, only eldest not born at home, and I breastfed the elder two into the subsequent pregnancies when my milk dried up - so I was informed by the toddlers who were verbal enough to complain "empty!" - then have tandemed infrequently). My youngest is asleep in my lap after nursing as I type this. I am actively planning at least one more child, possibly two, and can't imagine having to wean between before the baby's 2nd birthday much less as young as it sounds like your littlest is. They will always carry the gift of the milk you were able to give them on so many different levels, and WILL have their mother to learn all kinds of other wonderful aspects of humanity from for MANY years to come. Believe that, as you believe in birth. You WILL heal, and your sons will recover from the loss of your milk.

    On a practical note, have you looked into those breast-shaped bottles that are made entirely out of silicone, and fully breast-shaped (like a dome)? Perhaps one of those would help side-lying at night at least? I remember a big debate about them not too long ago, how lactivists (which I count myself as!) were up in arms because it being "as similar to the breast as possible" might encourage women to try exclusively pumping out of squeamishness with direct breastfeeding, only to be set up to fail (especially in the US where we have no universal paid maternity leave policy, I know many women who have had to go back to work before they've even stopped bleeding in the early weeks after birth). It seems like a device that may be extremely appropriate (if your children would accept it) in your particular situation and may make all this easier on all of you - it's possible you could rig it to be on over your bandages early after surgery. You mentioned in an earlier post considering an SNS and this may be an alternative they will accept quicker, while preserving the positions they are used to better.

    Also, take pictures of the faces your son is making while nursing NOW. Video if you can. It may be unbearably painful to look at soon after your surgery, but it is better to have the images tucked away and accessible if you want them later than to not capture them now and wish you had them later. Follow the path of least regret. I am a chronic pain sufferer (I have a genetic condition that combined with various life incidents has had me in daily pain since I was 10, I am now 34 and have joints that partially dislocate at random like my knee did yesterday when I was trying to dance to ONE dance at the wedding of some very dear friends). You WILL find a way to cope with all that life throws at you, and your sons will learn such strength from you because of this. They will always be so proud that you are their mother!

  18. I think you are amazing !!!!! and have such empathy for what you are going through-you're story has me so emotional.I imagine this happening to me and my heart physically ACHES for you <3 It is beautiful how you are preparing ahead of time despite your sorrow to ensure your loves will continue to be nourished by milk instead of doing the easier thing and giving formula....Just hold dear all your sweet memories of nursing and just think it is better to celebrate and cherish all the moments you have had than to eclipse it all with this time of loss.I think nursing is so intimate and close to the heart that in a way this is the death of something and so must be mourned....there is no getting around the pain but only through it and you will come out the other side <3 I wish for you peace through this time in your life.Peace and Love~sarah

  19. Oh goodness, this is so sad, I'm so sorry you are having to go through this. Hoping your surgery goes smoothly and that all your treatment goes really well.

  20. I am sad to hear this. I don't know if you have seen this video that dr. mercola shared but today is the LAST DAY it is available online. It is worth a shot! Call this guy! Best of luck to you!

  21. I have been sitting here nursing my youngest while reading through your posts. My love and hope to you and yours. Please, check out the video I shared before. Surgery and radiation are not always the best way.

  22. My cousin had four children. She nursed all four. With the fourth one, right after baby was born she noticed a lump, doctor said it was just a clogged duct- 10 months later she was given the diagnosis of cancer, by a different doctor.
    She was heartbroken to wean as well, as she nursed all of her children till they were ready and she had to wean her baby at only 12 months.
    I can tell you what I told her ( I had MY baby the day she was diagnosed) while I looked down at my sweet baby I told her "there ARE worse things" And everytime she got her treatment that is what she repeated.
    Many hugs to you for your journey is just begining.
    Fight good, fight hard.

  23. Have you looked into Antineoplaston therapy by Burzynski in the USA. There may be other places (closer) around the world that are also using the technique. You can also try drinking significant quantities of Beet Kvass, Kombucha and raw milk Kefir. I am not of the mindset to simply give up to defeat when cancer never equates defeat unless you choose to let it win. Don't give up hope.

    Honestly, you don't need breasts to console and comfort a child, you develop other skills. But if you choose a full double mastectomy and radiation, you will have to stay away from your children. While they promote radiation/chemo as "safe" it is not, and your children should not be exposed to that energy especially since they put their heads close to mother's chest.

    There are other ways. DO YOUR OWN RESEARCH. You are your own best physician. Medical professionals are merely consultants. If you forget that.... you accept the full risk of letting someone else make your choices for you and to your detriment. It makes me totally sick what hack science doctors promote as the "ONLY" option.

    Take a stand for your breasts. If you want to keep them... then you Fight to keep them and help them to be healthy.

    Good luck.

  24. Hi Mama,

    I also had to wean my baby far before he was ready, for medical reasons. It was medicine or death, when my little one was only 6 weeks old. I didn't lose my breasts, but I did lose that very special act, and felt its loss terribly. I felt terrible guilt and feelings of failure... and found only forgiveness and love in my son's eyes.

    Dead mommies don't make milk. Mommies are more than a pair of breasts.

    To answer some questions, because I asked the same ones -

    *How will I console them the way they need it?
    I bottle feed with a bare chest, or did as soon as I was physically able. My son still suckles near my breast, but not on it. He doesn't mind one bit. At first, he rooted for the breast, but as long as he found a nipple (even a fake one), he was perfectly happy. Skin-to-skin contact is, in my experience, almost as good a soother as the breast.

    **How will I stop the middle of the night wake ups, without a nipple to offer?

    Again, skin-to-skin contact and a bottle. No, it's not the same... but my son doesn't mind and doesn't seem to care. At first, when he was adjusting, my husband helped with the night-wakings to disassociate sleep with my breast. We did not stop co-sleeping; I could not take that away from either of us, so he still sleeps in my arms. :)

    **How will I hold my baby while he nuzzles at a bare chest and still be able to meet his needs?

    With love, courage, and tears. What he needs is YOU. Your breasts are only a small part of you as a mother. Your children need your smell, the sound of your voice, the feel of your fingers smoothing their hair. There is SO much more to you than the milk you make.

    Your babies know you as their only, special, awesome and amazing mommy. They will love you the same, even if you do not have milk to give. Only a child can love this unconditionally - and they will.

    Luck, prayers and strength to you and your lovely family. You can do this!