Forum Discussion
Things you wish you had know!
Hi, I am Shelli,
For those that don't know me I am 39, stage 4 bi-lateral breast cancer with mets to the bones. Fun hey! Not really. I have just been though 6 rounds of Dotax, Herceptin and Perjeta.
I am currently on the Herceptin and the Perjeta every 3 weeks for the rest of my life until they wont work anymore so hopefully a long time, and also about to have a double maestecomy in December. It has been on heck of a rollercoater of a year.
But why am I here and asking! I am putting together a pocket notebook of all the things you wish you knew when you were starting out, (and not the medical hand outs and the long books and the marketing material you are given- the real deal stuff that can help you) especially from diagnosis to chemo, to share with people just starting on this journey.
There is so much out there for prevention and cure but not enough fo the patients that are in the thick of it! I found myself very lost and confused through the process, but also found some great things that I think have all been through that we could all share!
So, if you have anything from products, tips and tricks, things that happen to your body that no one tells you about, the things that scare you (like losing my hair was more confronting that having the chemo) and more.......
I would love to hear about them here! Also any of the funny stories...... I have one where my boob exploded gunk on the mirror - I was so scared at the time but now its actually quite funny....
I look forward to hearing all your stories - Please share!
LOVE Shelli xx
37 Replies
- keep a journal. Even if you only write in it when your feeling crappy it is surprisingly therapeutic To vent without judgement or helpful advice. Keep a notebook in your bag and write down questions for your medical team as they come to you. It helps with anxiety and forgetfulness. Just remember to ask at your appointment and to WRITE DOWN the answers lol ending up back in hospital is normal. Don't think you are dying or that they are going to stop the treatment. Temperatures, infections and neutropenia is normal and treatable. Set up Skype in case you do end up neutropenic or away and isolated from family. This really helped me when I couldn't see my 3 year old for a week. Be prepared for the bad days to keep coming back. Just because you think you have found your stride doesn't mean you won't be kicked back down again. It's ok, just take it, pick yourself back up and go forward. i agree with cutting off your hair early. I had no idea that it died so quickly. One day it was looking almost normal and I felt I wasn't ready to cut it off, I would keep it until it was falling out properly. The next day I had s bald strip down the centre of my head and crazy amounts of thinning on the sides of my head. This hit me hard as I went, in my eyes, from looking normal to looking like I had cancer. Emotionally it was like a re-diagnosis. Don't wait! have head scarves ready early. the wig you ordered online may end up looking more like the hair of Ridge Forester than that beautiful blond in the picture! have a bullet juicer or similar that you can blitz up nutrient rich smoothies in for those days where eating just hurts too much. Accept help from whoever offers. Sometimes it's hard but you don't know what tomorrow is going to feel like. Have a bamboo beanie to wear. A bald head can be very cold! I took a while to figure out why my head hurt and it was actually the cold. Ok this is the second time I have written this essay and hopefully it works this time! Hope it helps
Hahahaha I love the shopping bag boob! I can picture the half panicked search of the car looking for a fake foobie lol. I'm 35 years old and have grade 3 invasive ductal cancer with her2 positive and lymph node involvement.
My tips would be: To hunker down with your support people in the early days where you can and cry/scream/rock/pretend/laugh whatever it is your emotional self needs let it have but be assured that although the days and weeks after initial diagnosis are more like a nightmare than a journey your mind and spirit will work through the shock and trauma and you will find your rhythm and I guess your acceptance. I found that there is a lot of medical information available but the real issue is your emotions in the early days. Nothing will make that part of a cancer diagnosis easy so you need to give yourself whatever you need
Write a post on BCNA, the women in here will come to your rescue with knowing acceptance. the response from my first blog on here Helped me immensely
don't think round 2 of chemo side effects will be the same as round 1. I'm sure this goes for all rounds but it's best to go day by day and not assume that you can plan based on what happened last time.
ASAP link with a breast care nurse. They are invaluable for advice and information on everything breast cancer. I found when I was overwhelmed by pathology results and diagnosis etc that my nurse was able to translate the info into real language and to ease my anxiety and fears.
Ms lymph node clearance cases nerve pain in your arm, breast, back and side. This is normal and can last 6 weeks. Numbness can be ongoing for much longer but again it's normal.
Often surgeons and other medical professionals will not tell you much unless you ask. Things such as the nerve pain, what to do with your dressings, how long you will be in hospital etc. you won't always think of these things ahead of time so be ok with seeking out the answers after the fact. Use your breast care nurse. I had surgery last week to have a port put in to my chest for future treatments and woke with incisions in my chest and arm. Only yesterday did I find out that they changed their mind and put it in my arm instead! And that's only because I asked my breast care nurse what the arm incision was for!
Don't trust your bowels. Constipation can change to diarrhea quicker than you think. Keep some prune or pear juice in the fridge just in case but one lire if prune juice in an hour to too much too quick. I don't think you need the story for that lol
I am glad I found out about the Penguin Cold Caps through this network. I am on my third round of TCH and still have most of my hair. It has thinned a fair bit and I dont know if it will last the 6 rounds but I am glad to have hair at the moment as I am barely coping with all the other stuff. It just helps. The caps make chemo day fairly unpleasant but its worth it to me. I am a private person and I dont really want my BC to be public knowledge. My family dont understand this but if I had irritable bowel syndorme or any other condition it would be understandable if I didnt want to make it known. I dont know why it is hard to understand that I dont want people knowing about my health issues (if I can help it). The privacy issues and the small (but signficant to me) chance of permanenet hair loss due to taxotere spurred me to hire the cold caps.
I also ended up in hopsital due to mucositis and a related infection on my first round. Since then I have sucked ice cubes during Taxotere and have had no probs. The hospital offered me icypoles on my first treatment but try negotiating that with ice mits on!!
BTW. I realy admire the brave and beautiful women who are not afraid to wear their baldness and bc. Initially I thought I could be that woman but I now realise and accept that its just not me and I am glad I took time to refelct and make the decisions I have made.
Love and courage to all..however you choose to do it.
shat
- Those eclipse ones
Hi everyone
The comments made here in response to Shelli's post have just been wonderful, not only for Shelli but for me!!! I've been having an AWFUL time these last few days but reading everyone's posts have helped me realise that hey, everyone else goes through the same sh*t!! Yesterday I went to a lecture at the Choices Program here in Brisbane and cried when I got there - it was such a relief talking to women who have all been through the saga of breast cancer.
Stay strong everyone - we are all wonderful women!!!
Tink xx
Hi Shelli
I am 2 months post mastectomy and auxillliary clearance. Don't be scared. It's not half as bad as you think! My hospital supplied a bag for the drains plus a lovely pillow which I still use every night as it's so comfy. I was surprised at how little pain I was in after the surgery - I only needed panadol amazingly!!
Stay strong and you'll get through the op with flying colours!
Tink xx
This is perfect advice as I am going in for the double op chop in about 4 weeks and have no idea what I am in for! (and very scared) Thank you! xx
Donna, Oh the amount of "poo" issues is out of control! (haha literally) I call chemo the game of extremes or side effect bingo - what will it be today when i wake up! I think we need to be more open to talking about chemo and poo. I would say to my friends its either constipation or all the way to being a soda stream in there! ...and then all the other things that come with it!
I totally agree with the tired. I cannot explain or even other people cannot understand, its one of those things if you havent been through it - you can just not imagine it. That is awful about the dehydration - my entire focus was on the eating and the drinking no matter what - i shoved that in my mouth even if it hurt! :-)
xx
perfect - did you have a favourite brand or was any mint heaven? x
Hey Tink! I totally agree with you - i was totally not prepared for the intense fatigue - when i was told tired i was like sleepy - but not - i can not get out of bed at all. Agree with sleep - I found that I just rolled with it - if i was up I would find something to do and catch some zzzs when i could - and try to not adhere to the social pressure of when to sleep - its hard but when you let yourself go and roll with what your body tells you - you do so much better!! xxx Thanks for the contribution, if you think of anything else!
