Chemo…I’m doing this shit, I’m having chemo. As I write this tears well and I don’t know why because it’s 18 months since I finished chemo, I guess the scar runs deep…invisible but deep.
*Please note this post has medical content that may be a trigger for some. I am not a medical professional so please seek professional advice if needed.
My first chemo infusion day had finally arrived (Dec 3rd 2012), a false start and another quick surgery saw me ready but can you ever really be ready for chemo? No, not really.
My mister and I travel to my appointment once again with uncertainty in our heads and hearts. We head up to the Oncology unit and we’re placed in the corner chair for privacy, the new kids on the block, that’s us.
For over an hour a chemo nurse talks us through side effects, care, treatment and so much more, it’s full on information overload and I’m feeling like I might like to go home now and hide. Folders of pamphlets are given to us, warnings given and it all feels too much. Too real and bloody scary. The nurses gown up, glove up and get started. I am given pre-meds and then walked through what to do when I get home, including when I might need my ’emergency letter’.
The emergency letter is bright orange and has a list of warning signs linked to high temperatures (apparently can be dangerous) there’s a paragraph in bold that is like a free pass to get me through the emergency department queues if I needed to present there. Side effects and warning letters sent my mind spinning…seriously there’s more to this shit than losing your hair and having a chunder…much, much more. We later laminated that letter and yes it did get used.
I still had the mega needle from port surgery protruding from my chest so after a flush the first bag of meds are pumped through and a bag of chemo hooked up…and then just like that I have poison being pumped into me.
I watch my mister…the love of my life as he sat head bowed reading literature and every now and then he gives me a reassuring smile. Even though he was smiling I could see the pain in his eyes. Geez was this what we meant when we said ‘in sickness and in health’?
Cancer treatment starts
Chemo doesn’t hurt. It goes in, the whirring and clicking of the machine are somewhat soothing until the beeping breaks in when the fluid backs up or the nurses come to change the bag for a different one. I can walk to the toilet with my Iv stand hooked up to me. There’s lots of fluid going in so I head off for a pee and totally freak out because my pee is pink, yes that’s right one of the chemo infusions is red and makes you pee pink…how bloody perfect for a breast cancer patient!!
The morning tea trolley comes and we choose biscuits to go with our cafe coffee and a few hours later the lunch trolley comes and we’re given sandwiches, yoghurt and fruit. Man the service is pretty good here and even though they are poisoning me they’re also feeding me, give n take baby! We watch tv, read, chat and wait…there’s lots of waiting with treatment…LOADS!
Yeah I know I look like I have a saggy boob in the pic below but it’s actually the fat roll from under where I had my breast removed… Weird!
We arrived at 8am and leave at 2:30pm, the first day is a big one with education and slower infusions to ensure I don’t react. Eventually I’m unhooked and the needle is removed…YAY! Ummm yes that needle was in me!
We grab our things and hightail it outa there, heading home to wait it out. I wonder when I’ll throw up, when will it hit? I’m nervous.
I feel weird…not sick but heavy and weird…and tired. When we arrive home I head to bed. We were lucky enough to borrow a medical type bed from the in-laws with a remote that raises the head and feet and gives a good massage. We chose to set up a space in our second lounge room with the bed and coffee table filled with essentials like medication, sanitizer, get well cards, candles, magazines a journal and a bucket, yeah the bucket is important. As I lay on the bed trying to sleep away the side effects my dog knows there’s something wrong, he sniffs me all over and takes up position at the foot of the bed unsure of what the heck is going on with his human.
I take the anti nausea medication and other pills I’m given by the nurses and don’t feel like eating. Strangely I feel ok…turns out it’s the calm before the storm. This particular chemo is once every 3 weeks for 4 rounds and then I did another twelve weekly rounds. This one is heavy shit and hits hard 48 hours after the infusion.
Fuck did it hit me. I had incredible burning pain in my gastric system, even drinking water was tortuous, my mouth fills with ulcers and all I craved was mash potato with gravy. My head bangs and I feel so sick. I wanna spew but nothing comes. The pills stop the spew from coming but not the feeling of wanting to spew. You know, trembling cheeks and that feeling in the back of your throat right before you hurl… Uhuh it’s constant and all I can do is curl up on the bed or the lounge and ride it out.
My eyes hurt, light bothers me and I have explosive diarrhoea so I sit on the toilet wanting to hurl while my arse is exploding…it’s not pretty. A few days later everything starts to subside but the pain in my chest is outa control and we try all the over the counter tablets but nothing works so I drag my arse to the GP and he prescribes a pill which does fuck all so I head back to hospital for something stronger. Finally some relief! Oh yeah and these drugs are bloody expensive, yup being sick is a costly business.
The first few weeks are lonely, we see no family but have a handful of friends who turn up night after night with meals or flowers. Some bring wheat bags, hand creams, ulcer relief and lovely scented candles, they rub my back and we laugh and cry together. Half way through week two I start to feel like I can face the world again and the cruel twist is I have to bat up for this again in just over a week…seriously?! I feel shithouse and weak and broken.
Chemo breaks down all your fast dividing cells, obliterates them to kingdom come and it’s a mega shock for the body. Eventually the body and immune system can become very comprised and weakened…this is what’s happening, my body is under attack. Ironic right, that we have to be broken before we can be fixed.
The days and weeks are long and I’m experiencing so much that is foreign to me, physically and emotionally but I have no choice, I keep going. I’ve got this.
Teresa says
March 6, 2015 at 6:40 pmWow!! I had my best friend go through chemo but she shared so very little about exactly what it was like or how she truly felt.She mainly did the process alone and after reading what you have written i really wished she didn’t.She kept a lot so private so reading your experience makes me feel not only sad for you but incredibly sad that she chose to go alone.I could drop her off & pick her up but she didn’t want company even though she had the most supportive Family & me her friend..I can only guess it’s because she didn’t want to be a burden,but for my selfish reasons i wish after reading what it’s kinda like i coule have held her hand xo….So happy you are in the space you re in now xo
Jenni says
March 6, 2015 at 6:44 pmYes Teresa some do go it alone, it’s their coping mechanism. I hope your friend is well now xx
Teresa says
March 8, 2015 at 12:20 pmSadly my bestie passed away 11 years this year (she had the worst kind of cancer you could get :'( …She made sure we wouldn’t ever forget her though (as if we could) for she passed on the 11th day of the 11th month of the 11 hour of the 11th minute…11:11:11:11 Amazing!!!! i often see 11:11 and i know it is her saying Hi 🙂 xo
Jenni says
March 8, 2015 at 12:31 pmIm so sorry Teresa, you must miss her terribly. What a councidence (or is it) the date and time of her passing…she never wil be forgotten xxx
Rachael says
March 6, 2015 at 8:24 pmAs a young curvy girl myself, I find you so inspiring. I stumbled across your blog on a friends Facebook page, and was instantly drawn in!
You have a way of writing that makes me feel like I was sitting right there with you. I can feel the fear and the emotion. I love the honesty in what you write.
Thank you for sharing something so personal with us all, Jen. I’m looking forward to following the rest of your journey.
Jenni says
March 6, 2015 at 8:46 pmRachael you just made my night! What a lovely compliment, I just write like I’m having coffee and cake with you all…a chat amongst friends. I’m crap at punctuation but meh, it’s about communicating. Thankyou lovely for reading and joining in. X
Sammie @ The Annoyed Thyroid says
March 6, 2015 at 9:56 pmAnd I thought being radioactive was bad! You are so brave. I nearly cried when I read the bit about your mister. That’s just how I felt when I looked at my hubby. He was strong on the outside, but his eyes said it all. Friends later told me that he looked more ill than me! I agree, being sick is an expensive business, but if it gives you back your health, it’s priceless. Thanks for sharing, as always you’re keeping it real! Mwah xx
Jenni says
March 6, 2015 at 10:47 pmUgh I did 32 rounds of radiotherapy Sammy, burnt red raw it was awful. Good hubby’s are worth their weight in gold. So bloody hard for them to watch xx
Sarah says
March 6, 2015 at 10:06 pmAhhh the red death. My sinus burns and my stomach churns just thinking about it. You have done such an awesome job putting the experience into words.
Jenni says
March 6, 2015 at 11:33 pmYes red death! Freakin awful, I can smell and taste it still, ewww! Hard to put into words, so much still goes unsaid xxx
Mary-Anne says
March 7, 2015 at 12:16 amI am in awe of what you and all the other BC girls have gone through. Someone that I was close to went through chemo and radio but never wanted anyone around except her amazing husband. As you said it’s whatever works for the individual.
Thank you for demystifying this, I think you are amazing.
Jenni says
March 7, 2015 at 9:09 amThanks Mary-Anne, I write to lift that veil of secrecy. My hope is that it allows other patients to be able to share and for the community to be accepting and informed. Lots of cancer patients share but many cant, or don’t know how. It’s definitely a spiritual and personal growth journey too. X
Alison says
March 7, 2015 at 8:21 amAmazing reading, thank you so much for sharing a story that needs to be told! My good friend had Hodgkins Lymphoma when we were 19. Straight out of high school, I kept her company and tried to keep her mind off the bad stuff (a remember a weekend were we cut her hair, shaved stars into it, before cutting it all off). I would sometimes drove her chemo and her parents would pick her up. I think being so young, I knew it was bad, but I never really knew how bad and she was so strong on the outside. Loving the stories Jenni xo
Jenni says
March 7, 2015 at 9:06 amHi Alison, I’m sorry about your friend. It must have been difficult being so young and sharing something so life changing and so personal. It’s not an easy path but how wonderful to have friends like you support her. X
Nancy | Plus Ate Six says
March 7, 2015 at 11:22 amI had a friend went through breast cancer and I had no idea it was so horrible for her – she wouldn’t let anyone go to the hospital with her or stay with her. I wish now I’d just turned and rubbed her back for her. Powerful words x
Jenni says
March 7, 2015 at 12:05 pmHi Nancy, my favourite saying is ‘when you know better, do better’. It’s hard to help when you don’t know or understand. That’s why I write, when you’re frightened and sick it’s hard to ask for help. Give get a hug next time you see her x
Jo @ You had us at hello says
March 7, 2015 at 12:00 pmThank you so much for sharing Jenni. My mum had both chemo and radiotherapy for Hodgkins over 20 years ago. I knew it was bad but your description really made me realise just how tough it must of been. My Dad was Mr Positive and never showed a wink of doubt she would beat it! She fraught back, regrew her hair and got back on track. 5 years later my Dad got cancer and sadly didn’t make it. I’m so glad these days it’s ok to talk openly about checkups and colonoscopies and anything that was once seen embarrassing. The more we know the more we are aware for ourselves and loved ones. Super dooper post lady xx
Jenni says
March 7, 2015 at 12:08 pmWow jo, two parents hit with cancer…that must have been tough for you all. I’m sorry about the loss of your dad. Cancer is everywhere and it’s hard to see the reasoning behind who makes it and who doesn’t. I’m so pleased your mum is doing well, love and strength to you x
Laney@thelaneyfiles says
March 7, 2015 at 8:01 pmWow Jenni I am so sorry you’ve had to go through this, what an ordeal. I never knew what chemo was all about and really appreciate your insight. I wish with every bit of me for you to live the ret of your life happily and healthily. Your blog is really gorgeous.
Jenni says
March 7, 2015 at 8:08 pmI plan to make old bones
jess - A Little Part of the World says
March 8, 2015 at 8:21 pmThanks for sharing your story Jen. I five never been through it you don’t know the ins and outs. You know it’s tough but don’t really get it. Thanks for giving us insight to the world of fighting cancer. I love your honesty. Inspiring. Jx
Jenni says
March 8, 2015 at 10:32 pmThanks Jess xx
Fleur @ Our urban Box says
March 8, 2015 at 9:41 pmThanks for sharing Jenni. I imagine that would have been hard to write and relive it all again. As someone who hasn’t been faced with cancer or chemo, I appreciate the insight you have given so honestly. You are amazing x
Jenni says
March 8, 2015 at 10:31 pmThanks Fleur, these posts are always a little difficult but I hope they help someone, sometime x
Nat says
March 9, 2015 at 8:17 amWow! I’ve just found your blog and after reading this, I want to read more of your posts. Your writing is amazing.
I haven’t experienced chemo, but I’ve been radioactive as part of thyroid cancer treatment when I was 19…your honesty and bravery made me cry. I remember the looks on the faces of my nearest and dearest, and their eyes really do show the fear they feel even though they try to be so brave.
Jenni says
March 9, 2015 at 9:37 amWelcome Nat! Aren’t those sad eyes just the hardest to look at?! X
Karin @ Calm to Coniption says
March 13, 2015 at 10:06 amThanks for sharing your story Jenni. Even though I have had people close to me go through treatment I haven’t been aware of the actual facts. Thanks for going back there to educate me. I can see how hard it would be, being such a horrible time.
Jenni says
March 13, 2015 at 10:24 amThanks Karin,hopefully my words might help in the future. I think when we understand and know better then we are able to be better equipped, x
Chrissy says
March 15, 2015 at 9:40 am32 rounds…6 months of chemo…I think you should be known as Jen the Brave x
Jenni says
March 15, 2015 at 10:25 amThanks Chrissy, it’s fairly standard treatment…I think all cancer patients are brave xx