Being Young

InkPetalInkPetal You are valuable, beautiful, extraordinary.Member Posts: 449
edited January 7 in Social Groups
On my 25th birthday I looked around at my friends and thought to myself, wow, I am mad old and have thought that same thing with every passing birthday. I was diagnosed just after turning 31 and as you well know, or will come to find if you've joined this group, the people around you on your breast cancer journey are all saying you're so "young".

Waiting rooms can be alienating, yours is likely the youngest face in there every time you walk in. @tree_knee called it the "sea of white hair". Even the professionals helping your treatment along are giving you a truly bizarre look. Our age takes our situation from being unfair, to being so unfair. We are the sweet tragedies and the such a shame's. Our lives are thrown into chaos, and changed forever, but we are resilient.

We are trail blazers.
Being a young woman with breast cancer will continue evolving as an experience and be very different from decade to decade. Not just in treatment but in context. This new rolling in of YWBCs are coming from emerging or digital native generations. We're dealing with new things like how on Earth to tackle "coming out" social media if at all, everything surrounding children and having them changes so quickly it's hard to keep up with it all, being without savings in this crazy expensive world and not being able to afford to be sick is just another one of those things that hangs over a lot of our heads, and what kind of age is this to be thinking bucket list!? Who could even understand that? If anyone, your peers, and if they don't, they're definitely there to listen.

I hope you will all join me in using this forum to talk about your experiences with other young women, if for no other reason than to know you are not alone.

Feel free to start threads on nothing in particular. Don't be afraid of being spammy, post as many pics as you want and complain at length about whatever. This is your space.
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Comments

  • HelloCarolineHelloCaroline Member Posts: 47
    Hi Ink Petal, I'm a volunteer moderator who's just starting out with the BCNA network. This group looks like a great initiative. Love your posts, attitude and creativity!
    Cheers Caroline 
  • ViviannaVivianna Member Posts: 22
    Hi InkPetal, love this group initiative! I am also 31 and have just been diagnosed with the big C. Feeling like the odd one out in waiting rooms is fast losing its novelty. Hardships I'm facing at the moment include the overwhelming number of tests/scans/injections/appointments involved in tackling this disease. I work in the medical industry and had no idea of the many different health professionals involved. Going through IVF has been an unexpected trial. I am so grateful for the opportunity to safe guard my future but I'm also crazy needle phobic and each injection adds stress to an already stressful situation. I'm also surprised and disappointed at the amount of misinformation being fed to us from people in this industry. I am lucky in that I know about much of the process and my options but for other people out there not in the know, so much conflicting advice can be confusing. My advice would be to question everything, even if its just to give informed consent when given different options. Can I ask a personal question? how did you cope with your hair loss? seems quite a minor issue for some but my hair is a huge part of my sense of self and I am really not looking forward to the day when I won't feel the weight of it on my shoulders, or be able to braid it. 
  • InkPetalInkPetal You are valuable, beautiful, extraordinary.Member Posts: 449
    Oh Gosh, it should be known that it wasn't my initiative. A Young Women's group existed when I came to BCNA but it was pretty inactive so in the move it wasn't replaced. This group has come to be because (over in the Activity feed) @pink_pen asked @Cosette_BCNA if there was a group for the younger people, and the thread went on to realise there really are a lot of us here now. I'm just the person who put up their hand to keep an eye on things. :heart:
  • InkPetalInkPetal You are valuable, beautiful, extraordinary.Member Posts: 449
    @Vivianne Vanessa That's a really good idea for topical threads to start, hairloss and IVF chat sort of hang-outs maybe? Haha. There is such a long answer to follow that from me, so I'll post a thread on hair loss when I get a chance (another thing about this whole ywbc thing, where did the time go, where is it, I can't find any of it) unless you want to start one before then :heart:.
  • pink_penpink_pen Member Posts: 10
    Hi all, so iv been a bit inactive the past few weeks. It's been a very physical and emotional draining month. Since having my surgery (skin sparing mastectomy and diep), i have had nothing but complications and am looking at another 6weeks recovery from now.
    On the up side my hair is growing back, and I haven't felt the need to wear my wig. @Viviannevanessa asked about how we felt to loose our hair. I know for me it was probably one of the hardest things for me. It felt like my identity was lost and that people that didn't know I had breast cancer would soon know because of my hair loss. I soon bet that feeling of being judged by just thinking how lucky I was to be hear and with the treatment available now am fighting this beast. I did prepare myself for loosing my hair by shaving it as it started to fall out, and got a wig fitted. No one could tell the difference, although it took a while for me to get used to it. Without my psychologist I don't think I would be able to talk about loosing my hair, but thanks to her and my great family and friends support, I could say that it was ok to loose my hair. And we are all here for you. Xxx
  • ViviannaVivianna Member Posts: 22
    Wow how inspirational to hear how far you've come. I'm sorry to hear about the complications with your surgery, im sure that was additional stress you didn't need. I think you've hit the nail on the head about the hair loss. For me I imagine that people will no longer see me but another victim of cancer. I haven't ttold many people and feel like once everyone finds out, ill no longer be seen for who I am. I know that when the time comes it's going to feel impossible but I take heart in knowing that strong, brave and courageous women here have done it and gives me hope that I too can reach the other side.
  • gurneysgurneys MelbourneMember Posts: 217

    Thank-you for inviting me to join this group. I'm probably a little on the 'older side' of young but still considered young by medical terms and cancer it seems. I was always the youngest in all the waiting rooms. I have two young children - 3 and 6 - and was diagnosed a year ago. Ooh, a year ago tomorrow in fact...

    @Vivianna - in regards to hair loss, that is certainly one of the hardest things to deal with for a lot of women. Have you considered the scalp cooling caps? I used them during each of my chemo treatments. Not the most pleasant of things to wear as they're so cold but they certainly reduced my hair loss. I had really long, thick hair before chemo and whilst it still thinned out, the cooling caps preserved enough so that the average person didn't notice. Hair still covered my head, just thinner. And the rest grew back super fast and super thick! They are not available everywhere, however, and they are certainly not for everyone.

    @pink_pen - I had the same surgery. I'm sorry you have had further complications. I hope you're on the improve now.

    Sherril

  • ViviannaVivianna Member Posts: 22
    Oh what a great idea, any chance you know where I could get one of these from?
  • gurneysgurneys MelbourneMember Posts: 217
    They were available at the hospital I had chemo at. So some hospitals have them. I chose my hospital based on that but not everyone has that luxury due to location etc. Your oncologist may know of a location.
  • GerrybGerryb LauncestonMember Posts: 102
    I feel robbed and so angry. My husband and I were considering another ivf cycle the month of being diagnosed with bc. Children are now not an option. None of my friends understand as they all have kids. A counsellors suggestion was change your friends, while appreciate the advice it just brings me to tears. I too walk into the oncology clinic and it is awash with older people. I have been lucky to contact with a few breast cancer survivors under 50 through my breast care nurse. I start the next regimen on Tuesday paclitaxol. I shaved my head during the first round of AC, as it was starting to come out in the shower. I miss my hair everyday.
  • InkPetalInkPetal You are valuable, beautiful, extraordinary.Member Posts: 449
    edited January 22
    Oh @Gerryb :disappointed:.

    I don't know how you've been talking with your friends about this. Is it quite deep or more "well, I can't have kids" and the conversation moves on, or more that they more the conversation on?
    In my experience people tend to close down/shy away from talking about it in much detail because it makes them feel bad or they simply have no idea how to respond. It would be difficult for them to even begin to understand, because they may not even want to think about it. In your situation I'd be tempted to drop dealing with infertility pamphlets in their handbags :angry:.

    Have you considered adoption? There may be a darling soul waiting for you somewhere, your destinies entwined and you don't even know it yet. My partner and I have had this discussion and decided to adopt if our reserve fails and I can't naturally conceive now (a huge fear of mine). It wouldn't be that same genetic duty fulfillment we all seem driven by, but it would be the same purpose, the same role, the same love, and a great life for us all.

    My heart breaks at stories like yours. All my love.
  • GerrybGerryb LauncestonMember Posts: 102
    Thanx hunny. Adoption has never been considered. Hubby has grown children and had the snip before us meeting
  • GerrybGerryb LauncestonMember Posts: 102
    Nuts my post is not in full, it auto saved but then did not post properly. 

  • ViviannaVivianna Member Posts: 22
    Wow Gerryb im so sorry to hear about the difficulties you are facing! Your big C must have been an aggressive one for them not to offer you fertility preservation? As InkPetal says, adoption may be an option, I wouldn't rule anything out or stress yourself out worrying about those options, for me Im finding that tackling one day/hour/moment is enough, and if I focus on anything more long term than that it all starts to get on top of me. Ps- I know now is truely the only time we are allowed to be selfish but ive found that it is sooo much tougher on those around us, although we don't have much control over what happens to us, we are still able to make decisions and are generally alot better informed than most of our family and friends. Thats not to excuse bad behaviour but I guess what I'm saying is that we all have to look out for each other.
  • ViviannaVivianna Member Posts: 22
    Gurneys, a new friend ive recently met who has just gone through our journey and who is almost through to the other side said that her oncologist says that the caps really have no evidence behind them working and may preserve some of your hair for a cycle but not to bother with them. Ill have a chat to my oncologist when I finally get an appointment and try to find fact from fiction. In the meanwhile, I just got back from my egg harvest- I got 11 eggs!!!! That wasn't expected so I am really hopeful that at least half of them will make it to freezy stage! Now one more day to breath then ill be going in for my mastectomy and recon on Friday. Im trying not to freak out/over think things but at least I've been able to have my "last super" if you will
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