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Jacsbac's avatar
Jacsbac
Member
14 years ago

It's not all Kylie

I'm new to the whole blogging thing so excuse my ineptness. I was diagnosed with IDC (invasive ductal carcinoma) in Nov 2009. My daughter was 19months old and I was still doing the night time breast feed. My daughter was a much loved addition to our lives as my husband and I had 7 miscarriages before Georgie's conception. We were told we had less than 1% chance of a live birth and we had been trying to stay pregnant for 10 years. I was 42 when my daughter was born, so I was already part of a small demographic of being an older first time mother. The cancer diagnosis has been the most life altering experience of our lives. Not one area of our life has gone untouched. I had to fight ridicule from the radiographer that I had no reason to believe I had breast cancer, but on my insistence I had a scan after 3 mammograms and a doctors physical examination all indicating I did not have cancer. The doctor actually told me that she did thousands of examinations and she could assure me I didn't have cancer but since I was already at QE II(Brisbane ) I might as well have the scan i insisted on, I now make sure I tell other women to trust their instincts and have a scan. The more aggressive cancers are closer to the nipple and harder to find on a mammogram. I had 3 invasive tumors and 10cm of DCIS! I had a mastectomy 2 weeks later. At the time I asked how long I would need treatment in the worst case scenario. They told me 6 months - that was 2 and a half years ago! I just feel its important for women to know that its not necessarily a quick chemo session and your hair grows back and you return to life as normal. It can be like that and it's great if it turns out like that for you. However isnt like that for everyone. I've had a pretty rough ride and been super sensitive to all the treatments. My oncologist calls me 'the side effect magnet' and while we both joke about it - it takes quite a bit of energy maintaining a positive front. Trying to raise my daughter while undergoing treatment has required my 73 yr old mum to pretty much live with us for the last 30 months. If it wasn't for mum I don't know how I'd do it. I haven't been able to return to work because I still suffer from so many side effects! Tamoxifen is horrendous and I have to survive on pain patches( narcotic drugs), tamazipan, diazepam, anti- depressants and Xanax ( anti anxiety meds). It's ridiculous but it's what I have to do. I asked my oncologist if I could go off tamoxifen because it is destroying my life but he was blunt and said' you go off it and you will die!' so I'm on these drugs for the whole 5 years. I was a high school teacher and I have just had my total and permanent disability claim accepted. It was a very traumatic process to accept that I will never be able to return to my vocation. I still have to sleep everyday for a couple of hours, my memory is totally impaired, I'm in pain and fatigued every day and all the menopausal symptoms are amplified- I still spend my nights ripping my clothes off and then putting them on and ripping them off. I could go on and on- but I'm not writing this to whine- I'm glad I listened to my instincts and that I'm still here for my daughter and husband. I'm privileged to have a mum who has given up her life to be there for us! I just wanted to write this for those women out there who do find the 'journey' much longer than they thought. By meeting other women and talking to them I have discovered that it is comforting to know you're not alone if you feel that your on a harder track than you anticipated or you were lead to believe. Breast cancer at any age and any stage is hard- AND it's really hard when you have young children. Reaching out and asking for help has been my salvation. I also think so much attention is focused on the patient and often the impact on the partners is forgotten. It's been a hell ride for my husband! We've been married 22 years and now the whole dynamic has changed. There is a huge silence around the impact this diagnosis and treatment has on your sexual relationships. I get support from my friends and family but my husband doesn't talk about the impact on him. Sorry this is a bit of a rave- but if you are reading this I'd be happy to hear your thoughts. Our own journeys are always going to be unique but it does help knowing that others share similar understandings of how this affects all aspects of our lives. Sorry Kylie( and fans) but not everyone gets to disappear for 6 months- look good with a pixie cut and come out still looking and feeling great. And I'm sure Kylie doesn't always feel that way either. But it's not helpful for people to assume that once chemo is over that that's the end of 'the journey' - for many of us it's not. We all fight but some us have to fight a bit longer. Take care of yourself and take care of those that love you- being on the side line is often harder...

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  • such_is_life's avatar
    such_is_life
    Member
    14 years ago

    Just wanted to say thank you so much for taking the time to put all this thoughts and opinions out there, I went back today for a tissue expander fill, and ended up having to have multiple ct scans just to find the ports, apparently only happens rarley ( but that is my luck ),  i had bilateral mx 6 weeks ago and one margin wasnt clear and the surgeon will not even discuss this issue, I mean hello why even do the pathology if you are not going to take it into account, I also got the you are only a public patient line from her, well  I am now 44 worked since i was 15 years old nearly everday of my life, caring for my patients a lot better than  her, just because I couldnt afford to pay 10 thousand or so for private op doesnt make you a less worthy person, I have had to fight to get every one of the tests or ops done, and to have an MRI if you have already been diagnosed with cancer, $400 no medicare rebate, the criteria to get a rebate on these is nearly as much as to get genetic testing done, I am sorry to hear about your loss of body image, I feel the same way, but I wouldnt know what my hubby thinks as he really hasnt said more than two words about my cancer or treatment since I was diagnosed, keep blogging and putting it out there if it helps, I for one love to hear eveyrones stories, just makes you feel that little bit less alone

    Cheers Narelle

  • Jacsbac's avatar
    Jacsbac
    Member
    14 years ago
    Hi jaci, as you'll see I wrote a humongous response back to Annie- so much STUFF to get out there. Yes I agree with you the concern you feel for the I effectiveness of mammograms. According to my oncologist if I hadn't been diagnosed I would have been dead- DEAD- in 18 months, cos the cancer was so aggressive. This is a fact I want women- young woman under 50 - to know!!! I think the focus on the successful early diagnosis makes younger women complacent, if they self exam, get a clear mammogram they think they're safe. With so much publicity around breast cancer 'survivors' people forget that breast cancer STILL is the biggest killer of women under 50! We can't bury our heads in the sand if we want a cure- vigilance is the key! I tell my friends to demand a ultra sound! And listen to heir bodies. In response to ur 'Olivia newton John' centre- I also take issue with that too. After you've been thru the harrowing chemo, rads etc and you feel like you just need to go away and be nurtured for a while, well just make sure your financially well off! The ONJ centre at Byron costs $1000's. Celebraties do get the focus on BC but they don't necessarily have to face the same issues. The costs associated with treatment is financially draining and psychologically it adds another dimension to everyday woman's experiences. Thanks for sharing your thoughts jaci Jac x
  • Jacsbac's avatar
    Jacsbac
    Member
    14 years ago
    Hi Annie, thank you for reply, it inspires me to keep going with blogging or writing about me experiences. Your frankness is also refreshing- like you I had given up on sex. My vagina has completely atrified- the 6 monthly pap smears are agony- I mean biting down on the pillow so I don't scream! BUT after 2 and 1/2 years I finally mentioned this issue with my oncologist( who looks to me like a cross between Christopher plumber in 'sound of music' & Daniel Craig) so really easy to bring this subject up when I've put on 8 kgs that I can't shift, and I have a saline skin expander in that only was supposed to be in for 2 years- so now it is rock hard and painful. I have slight lymphodemia and woke up one night with circulation in ring finger cut off- trying to get my 40 th birthday diamond ring off- I was panicking that I'd have to go to emergency to cut it off. These are things I don't even tell my husband because it's so much. But my oncologist recommended I use a product called Pjur - silica based. I had to go to an 'adult shop' to get it. Fortunately a friend came with me and the lady serving was very helpful! She also suggested reading the now much discussed '50 shades of grey'. I appreciate your honesty about he sex thing cause NO ONE talks about it- & I'm so over 'helpful' friends telling me 'well there's other things you can do' they have no idea of how hard it all is a package- menopausal, weight gain, scars, pain, fatigue and the fear of how long your new husband will be ok with not having intercourse. My husband is 18 months younger than me. Like you we thought that after all the treatment things would go back to normal! That I think was the biggest blow. During all the chemo, radiation, herceptin we thought I'd get better. Not the case at all.it has put a huge strain on our relationship- my husband in a vulnerable moment said , " so will I never have sex again , I'm only 44?" my heart broke for him- I have tears in my eyes just saying this. He also said things have changed so much that I'm such a different person now - he loves me but with all the changes he doesn't have the same desire.i know this is a VERY personal thing to put out there on he net!!! And some close friends have been mortified and think its so cruel of him to say that. However I pushed him into talking about it- the silence and non communication was another barrier to overcome. I knew he felt this! We've been together so long, I cd feel his pain. I said I look in the mirror and I can see too the changes. My breasts were my best feature. I loved them!!! He loved them! Annie if I've learnt anything it is that women being frank with each other and giving your partner the opening to express their grief, their loss can help the healing process. Unless you've been in our place it is so hard for others to understand. Wow - I've got so much to say! I'm having my reconstruction in 5 wks! And again it isn't a great chance to get a tummy tuck and a great new set of boobs- which is what I was to D over and over and over again by people when I was first diagnosed. People would do the whole ' I know people who've been thru it and they have new boobs and a flat tummy, it'll all ok' - I won't tell you how I wanted to respond to that!!! I'm sure you can imagine! Im not able to have that option! I'm having the surgery where they take my back muscle and swing it under my armpit. I thought and was told that if I got skin expander I wouldn't have to use muscle. Another false hood because like you my tumors were more than 5 cm so 6 wks of radiation - which ruins your skin and I need skin to hold an implant. I'm not allowed to get my portacath out because dr thinks chances of recurrence are so high:-(. Another reminder - 8 weekly flushes for the next 4 years at least. I totally relate to how you now feel self conscious. Being told 'but you look so good' just drives me nuts because ' whatever' - I don't feel like me. I look in the mirror and an 80 yr old looks back at me. I look SO different. I feel SO different- and I do remind myself that at least I'm here! Its our own personal challenge to embrace our different selves and that takes time. When life doesn't just magically go back to normal,mwhen we can't work, when we're struggling with self image and our sexuality then it will take time. Annie hang in there. I hope the Pjur tip helps, I haven't actually tried it yet cause my husband put a disc out two days after I bought it... Funny in a totally black comedy way! Take care and sending my best wishes Jac x
  • magicmum's avatar
    magicmum
    Member
    14 years ago

    i couldn't agree more about the celebrity. It's great that some instant publicity pushes more women to be scanned and maybe people to donate to research, but they all look so fit and well and healthy fter what seems like minutes. And we know that for some of our sisters that is SO not the case.

    (I am feeling fortunate - I may be a lucky one who will suffer less from chemo. I'm only 3 days out of #1 so I'm not whooping it up yet, I may suffer later in)

    The impact on partners and families is another thing altogether. My gorgeous husband and 19 year old son have totally taken over the house - I can still do it, but they insist on minding me ! But this tells us that they love us - and wouldn't we do the same for them ? Look for ways to show them that you know how hard it is on them, spoil them somehow, whatever you can do.

    I hope you lovely ladies get to see your kids at 19 and 29 and married with their own kids - just keep fighting girls. My thoughs are with you all.

     

    Nothing wrong with your blogging, keep it going !

    Keitha (magicmum)

  • Jaci's avatar
    Jaci
    Member
    14 years ago

    Amazing the number of comments on this site about particularly younger women who have a feeling regarding potential breast problems and are discounted by doctors and others.  Also disappointing the number who memtion mammograms that do not pick up the signs.  Really need to get something going about this - loud and clear - the old breast screen needs a shake up.  This concerns me as many friends have snuck back for a check up after my diagnosis and I am not encouraging them to self-exam self-exam and if anything seems wrong to demand better testing.

    As to the "It's Not All Kylie" theme - I agree totally.  It is good that celebrities speak out to highlight the problem, but when it is all glitter and gold and coffee shops with sunnies and head scarves, it somehow makes it all seem even glamourous and doable.  They don't really get into the hard yards, or that they were the very luck ones - although need for vigilance is always there ever after.

    Recently saw a piece on TV about the Olivia Newton John Wellness and Cancer Centre opening in Melbourne (why are they all there??) and the fact that $190million was raised just to build, fit out etc.  Was another physical space such as this really required and where would those dollars go if put into research instead. 

    Don't want to sound ungrateful but our local public hospital has fortunately a regional Institute of Cancer and I feel they struggle both financlally and staff wise with State Budget cuts on the way with the staff doing a splendid job and always smiling.

    Don't know the answers, but some good coordination and suggestions are required so that the precious dollars given are spent in the best ways and to the best effect.

     

    Cheers, Jaci