If you want to chat? I just wanted to share what I have been through and learnt so far...*warning it
I have cancer. Yep. I am 39 and 11 weeks ago I was diagnosed with bi-lateral breast cancer? with secondaries in the bones and eyes —? the whole kit and caboodle type cancer. The type that when they send you for your first contrast test —you bones light up like a Christmas tree and the doctors look at you cause they think you only have months to live type of cancer. The type that when they get all the results back they go… Ahhh you have the breast cancer that only 10% of the population of the world have!... Awesome?—?after years of being and idea maker and a risk taker?—?I can even custom designed my own type of cancer! (Well we are going to prove them wrong.) Also it’s the type they say, there is no cure. It sucks.
I have been debating to write stuff, a blog, thoughts a book. What is my position on this? Where do I fit? I am not sure. I don’t even know if this is the right place to do it. But it’s one of those things that for me has been so private that it is hard to share what is really going on, I am not used to being vulnerable, needing a constant hand to hold, someone to look at because I am so scare or ask for help. But today I had to write some pieces for a project we are working on and well, I think I finally have processed where I am at and have something to say. So if someone out there reads these series of rants and random thoughts and it helps thats a good thing.
Nothing is what it seems. Everything is a blurr. Life changes in seconds. Don’t make any big decisions in the first 3 weeks. Words like?—?your so strong, you can fight this?—?chin up you got this?—?we have so much hope to me sound like fingernails on a chalk board. I've faked a lot of being OK?—?because being sick is really boring and it makes everyone else feel better. You say you won’t but you end up doing it. You realise that cancer is everywhere?—?on the radio, the TV, in magazines on your favourite TV show, referenced in every conversation. It’s like a bad boyfriend that just won’t go away. But cancer sounds really bad when you say it out loud and you have it. Try it?—?it does. Your life has changed forever. You’re that person.
Everything is just one more thing. From the day they say those three dirty little words…. there is always “lets see how the next thing goes.. and we will take it from there”. Life feels numb for a while. There is no more returning to normal. You think you will cry all the time. But you don’t. You think you won’t cope. But you do. You might not feel anything or understand what is happening. But you do go on and the puzzle starts to fall into place. You think chemo and losing your hair is the worst thing that could happen to you in the world, and out of all of it - that was without a doubt the most confronting thing for me so far, and then it’s not.
Facebook is your friend. Talking is hard. But Facebook messenger or Skype is awesome. No it’s not ideal to tell people you love via messenger what is going on, and there is all the social pressure to do it face to face, but do you know how bloody hard that is. It is to hard. So everyone needs to understand that you get to do this your way, and in my case it was Facebook messenger. I could sit behind the bright screen of my computer in bed, and cry and cry and chat and cry. I could just process how I needed to at my end. It’s ok to be selfish and it’s ok to do things your own way.
They say don’t google, but you do. You can’t help it?—?you need to know?—?and most of this is about the need for answers which no one can really give you. The doctors, surgeons and oncologists have no idea what you can handle, so they try to decide how soft to be with you….in my case I was like give it to me blunt and straight. Treat me like a colleague not a patient. I need to know everything so I can prepare mentally, physically and emotionally. But the best thing I did was stop googling. Every now and then I will look something up or research something?—?but the last time I did that it ended up in disaster?—?where this blog I found with this awesome chick who had a similar diagnosis to me was writing so frankly about her experience?—?and the I realised she had died, but died 2 years after she started her blog, she was 29. I lost it, and had to remember every situation is different. No more cancer googling for me.
Everyone has a solution, a friend and a cancer cure?—?it might be Gerson Therapy to Acupuncture to eating more kale and superfoods. But they don’t have one for you, your situation is unique?—?and even though having people tell you that a green smoothie will be so good for you, ask them to try it after 6 hours of chemo and your mouth feels like sandpaper and who knows what your taste buds are doing! Now I am not saying these things aren’t good to think about and great options?—?but at this stage there is no acai berry in the world that is going to help you over night?—?so you just need to breathe and take each day as it comes for you?—?and keep yourself balanaced for the work that is coming your way. If you feel like pizza?—?have it. There are enough poisons in your body right now?—?it’s not going to hurt! Work up to that choice of how you want to change your life, if you do want to! Plan for it when you are stronger. Don’t make radical changes over night?—?you need all the mental toughness you can get.
Frame of mind is everything. You need to be at your best. Once your team is assembled. I have 14 on mine. You need to be at your best for them so they can do their job. Suck it up, no tears, make your own rules, let your medical team know those rules, learn to listen and ask questions?—?when you’re ready. For example?—?for me there had to be no news before I had radiation on my eyes?—?it is one of the most emotionally stressful things I have ever done and it took me hours of mental preparation each day to get into a Hannibal Lecter type mask locked down on a board for 20 mins while they poked laser beams through my eyes. So I begged them to not side swipe me just as I am about to walk through those doors. They were great, and it makes a big difference. Now everyone is different and don’t get me wrong I have had my share of meltdowns so far, but when you are about to face some scary stuff—?you need to let them do the best work on you they possibly can.
One of the greatest pieces of advice was from a nuclear medicine nurse?—?who I love dearly and without her?—?I don’t know what I would have done. She sat me down and said what’s wrong.. I was like I am so scared of this arm port surgery?—?she was like ok?—?let’s get this straight?—?never ever ever will we try to hurt you. We will never let that happen, some things might sting, and needles pinch?—?but we will never put you or leave you in pain. Nurses are so underrated. They are amazing. They were amazing to me. She was there for all 13 tests, she was there for my arm port surgery and she was there when I needed to ask questions. She called me after my first chemo to make sure I was OK, she took out my stitches from my port. They hurt, the sick kinda hurt and she told me it would. She may never know how much she meant to me. But I will never forget her. Nurses are awesome.
It might be radiation or chemo or both. It is a game of extremes and side effects but what they don’t tell you is that the side effects don’t last the whole time and they change. There is very little on the google machine that helps you about side effects apart from lists of them. This is something that I learn’t after round 1 of chemo. I had had 5 radiation treatments on my fractured shoulder and eye tumors and then went straight into chemo?—?was the worst 3 weeks of my life?—?my throat was at defcon5 tonsilitus and well my body felt like I had been hit by Optimus Prime. I thought I was never going to get through it?—?but as the weeks went on before R2?—?there was a day I woke up and said?—?OMG I am OK?—?it was extreme?—?from so sick to so OK, and OK felt so good even for a few hours! Then R2 and R3 you get better at it but your body is beaten, but it’s like pot luck?—?there is a different side effect every day. You just have to learn to roll with it?—?and not over think it. Remember though as the weeks go on your body gets weaker and tired. This medicine is the kind that makes you worse before you get better. You just need to be OK with it. People will think you should be getting better but by R4 it’s tough, remind them.. there is a long way to go yet.
The tip to winning is in the eating, drinking and resting. You have to do this to win no matter what. You might not be hungry or thirsty?—?you might feel like you are going to vomit, you might just be too sick to move?—?trust me there are days where it takes me 15 mins to move my leg to be able to think about going to the toilet?—?but you shove that stuff down your throat, flush your body of the toxins, fuel your immune system cause you need it to get better. This is not an option people, no matter how much you don’t want to.
….and to wrap this rant… try and get people to talk about something else. It really helps...
Comments
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Dear Shelli
What an amazing, strong person you are! You have been through so much. I have secondary cancer, but nothing like what you're experiencing-suddenly my lot in life" is relatively insignificant! I had a double mastectomy-twelve months apart, when they'd said the cancer probably wouldn't come back(yeah right!), & and have a small, stubborn bit of metastasised cancer in my lower back that hasn't changed size for 4 years.
The port is awful. They say it doesn't hurt, but it does. I got thru my chemo ok, the body just gave up between the second last & last one-I had to spend time in hospital and have two blood transfusions.
Sorry, just realized my comment came up when I hadn't finished!
Facebook is good, and I have a few of my friends from my breast cancer support group on there, but I do most if my ranting, whingeing and checking on new available meds on here. Also it's good to share experiences about specialists, and how different relationships between breast surgeon, oncologist etc affect you. I agree about the chemo nurses-they are the most unsung heroes!
I really feel for you needing to have treatment to your eyes-I cannot imagine what that must feel like-apart from very scary. At least you have a sense if humour! Isn't it amazing when this happens to us that we DO find an inner strength, don't cry too much, want to be independent etc. I was independent at the start, & got my poor sister, who wanted to give up her work and come and look after me really feeling useless. We remain very close, & eventually she understood why I wanted to go through the really hard bits on my own.
You are so young!! I am going to be 58 this year and have a grown up son and grandchildren. I have his wedding to look forward to in December. I'm so glad I found you this chilly morning. I woke up hot (I'm sure you experience the same) and with pain at 3am, so got up, took drugs&checked out the happenings on here.
Please know you are in my thoughts-you are amazing. If you'd like to find me on Facebook I am Kathleen Taylor & have exactly the same profile picture as I do on here. Keep in touch. If I'm not good at much, I am a good listener!
Sending hugs
Much love for a new friend
From Kathleen xxxxx0 -
I just want to welcome you to the best place for support...the online network blog
We are all so different in our types of BC,where we are at,and our treatment plans,but we all have the one thing in common in that we have BC.I am very fortunate not to have any secondaries,and I feel distress for the ladies such as yourself,that do.I feel that any advice I can give will be inadequate,but I would like to say that your comment on taking care of your body with good food etc.is spot on!Our bodies do need the best nutrition we can give,especially at a time like this.Pure water,fresh air,lots of green and red food,and lots of rest without stress (if that is at all possible!)All the best with your treatment and please stay in touch.You write so well,and I look forward to reading your next post!!!!xox Cheers Robyn 0 -
I just want to welcome you to the best place for support...the online network blog We are all so different in our types of BC,where we are at,and our treatment plans,but we all have the one thing in common in that we have BC.I am very fortunate not to have any secondaries,and I feel distress for the ladies such as yourself,that do.I feel that any advice I can give will be inadequate,but I would like to say that your comment on taking care of your body with good food etc.is spot on!Our bodies do need the best nutrition we can give,especially at a time like this.Pure water,fresh air,lots of green and red food,and lots of rest without stress (if that is at all possible!)All the best with your treatment and please stay in touch.You write so well,and I look forward to reading your next post!!!!xox Cheers Robyn 0
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@kathleen - Thank you so much for the message- - I know my writing might be a little different and blunt to the norm - but i just felt that there might be others that feel the same way. I have added you on facebook - and if anyone wants to add me - https://www.facebook.com/shelli.whitehurst. Oh the nights - I am wit you - up down, hot cold, take pills, don't take pills. Too much thinking time. If I am online - please always pop on over to facebook and say hi!!
@Robyn - thank you for the message - it i s so nice to have founda friend or two already. This is now a lifetime journey for me and this was a big frst step. :-)
I just wanted a thread where i cud chat to people about anything! :-)
xxxxx
-- I will not be defined by a number --
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No advice....no concept of what you are going through...just wanted to say you write beautifully!...... sending you cyber hugs and let you know you are never alone on this site!
Jenny xx
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thank you jenny. that is so lovely xxxxx
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Yes, I think the others will agree when I say that you are going to be an asset on here, Shelli! You write so well, most of us can relate so well, and I know I am getting a lot from your story-mostly strength, graciousness and candidness. Keep it coming-on all our threads!
You probably aren't aware that, blunt or not, this type of communicating is a most wonderful way of sharing and allowing others to put perspective into their own stories!
Thank you so much
Xxxxoooo0 -
Yes, I think the others will agree when I say that you are going to be an asset on here, Shelli! You write so well, most of us can relate so well, and I know I am getting a lot from your story-mostly strength, graciousness and candidness. Keep it coming-on all our threads!
You probably aren't aware that, blunt or not, this type of communicating is a most wonderful way of sharing and allowing others to put perspective into their own stories!
Thank you so much
Xxxxoooo0 -
Yes, I think the others will agree when I say that you are going to be an asset on here, Shelli! You write so well, most of us can relate so well, and I know I am getting a lot from your story-mostly strength, graciousness and candidness. Keep it coming-on all our threads!
You probably aren't aware that, blunt or not, this type of communicating is a most wonderful way of sharing and allowing others to put perspective into their own stories!
Thank you so much
Xxxxoooo0 -
Shelli, I am similar position. BC with secondaries in liver. Currently going through a foul, very strong chemo treatment. I am do over people telling me how long I have to live and a counsellor actually advising me that it was all down hill from here. After I questioned her on this she said I had to be realistic. I also have 3 gorgeous children with 2 still in primary school. I am very scared but I think I have to learn to be fearless and have a lot of faith in myself that I will live for many, many years. I too put food in my mouth for the sake of keeping my immune system in some kind of order. All food tastes like nothing; drinking is worse, I have not yet found any beverage I can enjoy the taste of at present. I'm tired all the bloody time. I want my life back( but apparently this isy life for the moment anyway. Thanks for your comments; they inspired me to write.0
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I am so glad to have found you - and that I inspired you to write - there are not many of us on here (the secondaries) I don't think - but the ladies on here are so lovely! I am new and getting to know them - but Im getting there! It's really hard isnt it. Like strange hard....I actually have no idea about what is real and what isn't anymore. I have decided my mantra is " I will not be defined by a number" and that being my age, how many years I have left and more... it's all so much to take in and I just don't want to constantly be looked at like I am about to die! There has to be more - even if it isn't the longest time! Right? I have faith that I will be here for a while and where I can really help other people and share and maybe solve some problems along the way that I wish were there for me. I am setting up a blog ihavecancer.co and it's going to be a place that I hope you will enjoy when its launched! It's a totally different take on this journey - I just need a place where we can be more than this life sentence and everyone constantly using the words "hope and pray" ....arrrgrgrg...
Food is crap - what chemo cycle are you on? My world revolves around toasted sandwiches. BUT I try to get things in like lasagne (simple simple version), baked potato, chili con carne with rice....when I have good days - I stuff all the goodness I can in - to boost my immune system - I also find Swisse Ultivite + Energy good (as i am tired all the time as well and my bones hurt) it's one of those fizzy tablets.
Beverages... well it's a massive issue - Diet Coke, Appletiser, Solo and Raspberry Cordial is a winner for me - i know - sugar central - but just do it now to get through... another thing that I have been working on is iced tea... what temperature beverages can you handle? mine vary... but I am serious about finding things that work! Water even tastes so different i can now pick the different waters from a bottle! I have a mate who is working on some beverage options - so as soon as I have them i will share! :-) I would kill for a glass of champagne but again tastes crap and makes me feel really sick!
OH.. and try this - crush up ice with watermelon and mint in it - it worked when i had the worst throat in the universe ... and water melon and mint work... the crushed ices is nice as well....you can make lots of flavours....if you can do cold.. and lastly - the only Tea i can drink is peppermint!
I want my life back too, i have really bad nights about that, and when my friends say i can't wait until life goes back to normal for you after chemo.. i just breathe on the outside and cry on the inside and realise that it will never be back to normal. So I have to work on a new normal. I have my 5th round of Chemo today - as you can see I can't sleep from the pills ..... Sxxx
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I read your blog with tears in my eyes, what we live through and our experiences are all so different and yet all connected. I think we all like the blunt writing, there is no sugar coating of cancer and yes we all pretend and fake it so often with our family and friends that on here we need to be open and honest and raw with our emotions.
I so related to your comment about just forcing stuff down your throat, I hated drinking, it all tasted like crap but you must flush the rubbish out of the system, its all so difficult.
I wish you well and will watch for future posts from you.
Donna
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I read your blog with tears in my eyes, what we live through and our experiences are all so different and yet all connected. I think we all like the blunt writing, there is no sugar coating of cancer and yes we all pretend and fake it so often with our family and friends that on here we need to be open and honest and raw with our emotions.
I so related to your comment about just forcing stuff down your throat, I hated drinking, it all tasted like crap but you must flush the rubbish out of the system, its all so difficult.
I wish you well and will watch for future posts from you.
Donna
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I read your blog with tears in my eyes, what we live through and our experiences are all so different and yet all connected. I think we all like the blunt writing, there is no sugar coating of cancer and yes we all pretend and fake it so often with our family and friends that on here we need to be open and honest and raw with our emotions.
I so related to your comment about just forcing stuff down your throat, I hated drinking, it all tasted like crap but you must flush the rubbish out of the system, its all so difficult.
I wish you well and will watch for future posts from you.
Donna
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Hi Shelli, hope you went allright with the chemo today. I am on TAC what they introduced to me as their "golden" treatment; I had no idea what they were talking to me about at the time. And then I give myself a white blood cell injection the next day supposedly cause it's killing all mine. I also have a finget issue; swollen fingers with hypersensitive fingertips - they don't know what it is but I have just started some medication which we hope reduced swelling (quality of life ain't that flash); plus my eyebrows are practically zero which makese look a little scary. I have to have some type of humour because otherwise I would be constantly crying and boy am I sick of crying. I will try some of your food and bev ideas especially the peppermint tea. I can't seem to find a tea I like and I was a bit of a tea drinker. Again hope you are ok and I presume the chemo side effects will hit you in a couple of days - everyone's different apparently. Take Care.0
