It's not all Kylie
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...
Comments
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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
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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)
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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 x0 -
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 x0 -
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
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I have no libido at all. In the beginning I'd make an effort for my husbands sake, but we have gotten to the point where neither of us bother any more! (my poor darling)
In regards to the celebrity thing, they suffer physically, emotionally and mentally just as much as we do. Don't forget that we only see pictures of them looking glamorous because that's all they choose to share with us! I'm sure they have all had days of looking grey and feeling crap and miserable and vomiting and being constipated and very unglamorous. Belinda Emmett did a lot for awareness of breast cancer in younger people and lost her fight. Jane McGrath has done so much for women with breast cancer with her foundation and the breast care nurses. And every time someone famous gets the dreaded disease, it raises awareness not only for the public but for all the medicos out there who don't see it every day. They may have money and fame and all the trappings that go with it but they still get sick and can die just like the rest of us. Money can't buy you life.
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Hi Keitha,
I wrote a reply to you but as I can't see it on this site,does that mean you didn't get it or does it go to private sight.
Can you let me know if you got it or if it disappeared into cyber space.
It does my head in when I don't know how to figure out technology- I was always slightly impaired in that area - now I should get a special ' tech disability badge' .
In fact I need a badge in general- I bump into people's trolleys in the shopping centre all the time, I have to do 55 point turns to get out of a carpark( or get in). I am sure I did write back but did I push the send/ save button. I started replying to 'what sex' below and then went to read it my husband and then it was gone!!!
I know you haven't done the chemo yet- and I have my figures crossed for u it all goes well - but side effect number 751- ( for me- not everyone gets this) my fine motor skills are also impaired, so typing actually causes pain, but these posts are worth it.
I said to cherish all that love and support from family. I hope it continues and I appreciate your encouragement .
PS I think my other reply was better but I can't repeat myself cos I forgot what I wrote:-D
Best wishes
Jac0 -
Lol- I agree I make jokes all the time so that I don't cry! My 4yr old rolls her eyes in a very comical way whenever I watch or hear something sad, cos then I'm blubbering and she says in the cutest voice" Not again mummy- here's a tissue for your nose and one for your eyes" .
I tried some lube stuff- cant remember what it was; based on kiwi fruit( I think) OMG'!!!!!! I really was screaming- it felt like acid burn and I was whincing and biting my lips when doing a wee for the next couple of hours.
Onc told me to put Pjur on a pad & wear it for 3 days to give moisture back to area- told my hub & he was so"well that's just such a turn on!" had to agree:-)
My GP asked me to ask my onc if I cd use a topical estrogen before pap smear- Im not allowed to have it cos my( I love owning it) cancer is too estrogen receptive(85%) but maybe ur onc will let u- worth asking the ?.
50 shades of grey- too funny!!
Good luck - I think it's affirming that I'm not alone and you're not alone in the far reaching impact on you AND your husband! X0 -
Hi narelle, Thank you so much for your response and everyone else who has responded so positively- its only taken 2& 1/2 years to get to this place where I can take the time or have the energy to respond or even be on line. I totally empathize with your trauma at feeling you're being dismissed in the public system. It is so hard. There is no denying that this journey is a costly one if you take the private route.
I had written in a reply I just lost to someone else( can't risk looking her up - cos I may loose this post:-D) that we're out of pocket about $30 000 and that's without reconstruction!!! All the pathology cost a fortune and I asked if I could swap to public because of the cost but after some enquiry I was convinced that I had better options on private side. Not sure if that is true but I decided I had to stay in private.
Honey I so get your point about feeling ripped cos you don't have $1000's to spend. We are lucky to have public health in this country but no one should ever feel that if they could afford it they may get better care. Actually I have to say I have felt very supported by the 'chicks in pink' but not sure if the help is offered to public patients. As per the BCNA guidelines I won't get bogged down on my opinions on that! It's too upsetting.
I so hear you with the 'lucky one' - my friends call me the 1% - before BC, I'm sure I'll mention this again numerous times in different responses, but I seriously fall into that category. I get all the 'rare' stuff! It's got to point that I hate updating friends when it's more bad news.
Here's a snippet of just one of the 'rare'things that have happened on 'this' journey! After I had MX it was over Xmas 2009, I had to go back for 3 weeks getting breast drained. I have a hand written letter from the plastic surgeon who put skin expander in dated 25/12/09 telling me I had aVERY rare infection, and since I'm allergic to penicillin she had included a script that she hoped would work cos VERY FEW people have A bad reaction to the antibiotic. Well 3 days later I'm on my rug in our lounge unable to breathe! Of course I had to stop taking the antibiotic and hope that the infection didn't get worse. It didnt so that was a positive, but I think it did alert the surgeon to the fact that I really do have weird reactions to things!
I won't even go into the reaction to herceptin - that apparently has very few side effects- unless your me- in short I am now under care of cardiologist!
Hey I'm just watching 'silence witness' as I'm writing this - they're talking about fentinal ( the pain patches I'm on cos OxyContin stopped my bladder working and Norspan caused skin allergies) and saying fentinal is 80x stronger than morphin and people can die from having a reaction!! That's just freaky!
I don't know how far down your journey you are, but my husband wouldn't talk about it either for the first 2 years. I think it was so traumatic. He stuck to doing all the paper work and was initially validating of the side effects because he'd research them. But when things just kept being 'challenging' it got harder and harder and he kind of( well not kind of) he shut down. Again I'm sharing this publically because I think this is the unspoken experience of many couples. Women reach out and men close inward( big generalization I know). My husband has had more days off in the last 2 years from being ill than in our whole 22 years together. He internalized it all. And it didn't help that last year his dad was diagnosed with lung cancer and we nursed him from the day he was diagnosed til he died. It was very confronting for all of us
My husband has had no councelling- I've availed myself of heaps. Grief does horrible things to people. I'm sending a big hug to you and I hope you and ur hubby can find a place in the future where you can talk about how it is for both of you.
Thanks for your reply Take care- your not alone:-) Jac
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Yeah well no libido here either:-)
Just wanted to say don't get me wrong I think Jane m and Belinda did and have done so much for breast cancer! AND I feel that the exposure and high profile of breast cancer has now misled lots of people. Before my own diagnosis I was like many others and just thought breast cancer was breast cancer - I had no idea of the difference types and stages. That's why when 3 days after the diagnosis I was in the plastic surgeons office asking for immediate reconstruction. She kept saying she couldn't do it because the cancer was 'invasive'. In my mind at the time, I was thinking why does she keep saying 'invasive' - all I was focussed on was loosing my breast!
I guess my husband and I are just weary of the input of 'well meaning' friends, family and colleagues who we have to KEEP telling ' No I'm not in remission, NO I'm not better yet, No I haven't got a great long term survival prognosis.' Flippant 'you just have to be positive' and 'you'll be fine , they've come so far with cures'. I think people still find it so confronting to acknowledge that people do die! Even if they are positive!!! I'm sure Belinda and Jane were positive, but positivity is a way to live life AND it doesn't necessarily assure survival.
I admit I have felt very validated by my oncologist who in a joking way told me he has seen the most positive people die and the most bitter twisted survive. He tells me to drink wine, enjoy life and that the journey for some women is worse than others. In the beginning I thought he was too dismissive and joked too much but now after all the stuff I've been through I see that this is his way of coping! When I asked when I could get my portacath out, he did what he always does when he has to deliver bad news; he runs away and then pops his head around the corner and says quickly," chances of it coming back for u too high- u need it" and then he's gone and I'm crying and the nurses are pulling curtains around the HOCA chair.
I want to shout from the roof tops- its not over til it's over! Your observations are of course right that everyone whether rich/ famous/ high profile still suffer - and they can still die! It's more the issue for me that the everyday person seems to forget this and focus on the survivors( not always a bad thing) but they also could validate the FACTS that not all of us will survive.
I don't want to not be here for my daughter. She is an amazingly intuitive soul.The day the onc told me he couldn't put me on amotose inhibitors because my sensitivity was too high and I would probably kill him or my husband ( his joke) if he put me on them, he also told me then that it means I have a 1 in 3 chance of not making the next 4 years, if I make 10 he feels that will be a great outcome and 15 will be amazing. My daughter will be 18. That was 2 years ago.
G was only 30 months old. That night she got me to sit down and she sat in my lap facing away from me, she wrapped my arm around her and looked up into my eyes and said" mummy you 're going to die aren't you." I hadn't said anything to her about the dr appointment. Of course my eyes welled up and I said" everyone dies honey, but not today and I'll do anything I can to be here with you as long as I can" Her response was " it's ok mummy, because I love you very much and it'll be ok" I still cry when I remember that.
If I didn't have G I would go off the #*+# tamoxifen and take my chances but I will endure and fight and encourage others to be vigilant, because no child deserves to be without her mum!
Sorry I'm a bit verbose- I wrote you a completely different response early tonight then I lost it/ deleted or whatever. Thank you for your feedback and money or love or positivity can't buy life and the last 2 things can make life meaningful, purposeful and money can help make it fun! Let's focus on what life gives:-)
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I didn't get a private one - I do that sometimes too Jac, they just wander off into cyberspace never to be seen again ! It's ok. Annoying when you KNEW you had put down some really good stuff and then you can't remember it.
I have spent my whole life bumping into things and ppl so if that gets worse !! OMG. You have to laugh.
My chemo was ok, but I have a migraine today (now I ask you, is that fair ?) so I feel like crap from that. I may be getting thrush in my mouth too so I'm treating in case. Otherwise feeling blaaaahhhhh.
I guess as far as the other stuff goes, we just have to count ourselves lucky that our husbands love us enough to hang round. I know some don't. I couldn't do it on my own
Take special care of yourself.
loads of love
Keitha
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Hi just wanted to say thanks for the reply I know it seems a bit morbid but when you hear of others maybe not sailing through and having a few problems it sort of makes you feel less alone, weird I know but that is how I feel, sorry to hear of all your awful reactins, I have had a anaphlatic reaction to an antbiotice went blind for a short time and couldnt breathe, thought I was a gonner for sure.
Cheers Narelle
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Hi Keitha I read your blogs and can see you're at the beginning of the journey. I'm so glad you have so much love and support- you will need it. I do remember saying to accept whatever people offer to give. You'll feel bouyed by the steroids for a couple of days and then you'll be tired. Each chemo is cumulative. Keep sharing your experiences cos there's a lot of info out there that helps. So many things to encounter but others have walked on your path and they can perhaps help by giving info.
How annoying that my 1st MSG is lost- bumping into people will get worse:-).
Hey has anyone told you shave your head before hair falls out? It really helps you take control for yourself and stops drains being blocked!!
Take care x0 -
Not morbid- just reassuring that ur not alone! The whole purpose of my first post was to put it out there that the road is rougher for some than others - it can be so crappolla and unless u've been there it can be hard to understand. I'm fortunate to have a few close friends who just listen to my raves, hear my truths and hold me their understanding- I wish this for u.
Hugs jac x0 -
That's what is so marvellous about these blogs. Being able to share stories, and compare notes - and to find out you're not alone. "...a trouble shared..."
If we keep on talking to each other and voicing our fears andour dreams and sharing the good stuff too we have half a chance of getting through this nightmare intact - whether that means surviving or not isn't necessarily relevant here, just getting through it.
Keep on keeping on girls
magicmum
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