Forum Discussion
shelli
11 years agoMember
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
- shelliMember
i completely understad the privacy issue - it is only after i have been through the tough times that i was ready to be more open about it. How you want to process and be is your choice. I always said - having BC was not a secret, but it is private. x
- shelliMember
Great Suggestions and I LOVE an essay when it comes to this! :-) x
- shelliMember
hey Tink! Hope you are doing OK and I am hoping that this project that I am working on will help us, and all future ladies that have to go thorugh all this - I have worked out that the majority of us go through the same thing so lets get all that info together and make it easily accessable to everyone! x
- shelliMember
Oh Nicole - how are you going? I know there is just nothing about - so our project will hopefully help patients in the thick of it - i think we have all been thorugh the murky waters of Whattt??? and finding stuff -t hese are great tips and I agree BC is an ordeal - its not a journey, there is nothing easy about it and its hard - and also I am a prepare for the worst and hope for the best - it has done me well from you are going to die to - guess what - we think you have more years! :-)
- shelliMember
Amazing Tips!! Thank you... We are just putting the book together this week - will make sure I share it! :-) x
- JuliMemberThanks ladies I love this site, it has some great hints. Cheers Juli
- Jane221Member
Just wondering if you've gone in for your operation yet? I hope all is going well and that you are recovering comfortably.
This is a great thread, I've just got a few extra points:
- The hardest thing I had to do in this ordeal was to talk to both my kids (then 8 & 13yrs) about my diagnosis. The Cancer Council's book, Talking to Kids about Cancer was invaluable and helped my husband and I to work out how best to tell them.
- Both my children's schools provided practical help (meals, hampers, child-minding) as well as checking in regularly with both kids to see how they were going. This was a great support, especially during those tough months of chemo and radiotherapy.
- Learning to accept help is difficult but was the best lesson learnt and now I can pay it back.
- Learning to pencil in eyebrows is a new skill which unfortunately I still need to practise as mine are still pretty much AWOL even after 18 months of active treatment.
- Deep purple nailpolish hides all sins.
- Chemo stole my brain so am much more forgetful these days and sometimes struggle to find the right word for something. Am doing crosswords, puzzles, reading and writing to try and find it again.
- I found the Encore Program to be helpful after treatment as it gently improved my movement through water and other exercises, gave me an opportunity to talk with others in the same boat informally about bc and was done in a private session at the local hydrotherapy pool at the hospital so I didn't feel self-conscious about my lopsided swimwear.
- Weird side effect: iris colour has gone from "polluted blue" to "murky green". My eye colour always went green after a couple of wines, now they seem to be permanently that shade!
- Despite our best efforts, crap happens; eg after my first chemo I was hypervigilant about hygiene, temperature checking, sanitising everything etc only to have my son come home with chicken pox and so I landed in hospital for a week!
Jane x
- Jane221Member
Just wondering if you've gone in for your operation yet? I hope all is going well and that you are recovering comfortably.
This is a great thread, I've just got a few extra points:
- The hardest thing I had to do in this ordeal was to talk to both my kids (then 8 & 13yrs) about my diagnosis. The Cancer Council's book, Talking to Kids about Cancer was invaluable and helped my husband and I to work out how best to tell them.
- Both my children's schools provided practical help (meals, hampers, child-minding) as well as checking in regularly with both kids to see how they were going. This was a great support, especially during those tough months of chemo and radiotherapy.
- Learning to accept help is difficult but was the best lesson learnt and now I can pay it back.
- Learning to pencil in eyebrows is a new skill which unfortunately I still need to practise as mine are still pretty much AWOL even after 18 months of active treatment.
- Deep purple nailpolish hides all sins.
- Chemo stole my brain so am much more forgetful these days and sometimes struggle to find the right word for something. Am doing crosswords, puzzles, reading and writing to try and find it again.
- I found the Encore Program to be helpful after treatment as it gently improved my movement through water and other exercises, gave me an opportunity to talk with others in the same boat informally about bc and was done in a private session at the local hydrotherapy pool at the hospital so I didn't feel self-conscious about my lopsided swimwear.
- Weird side effect: iris colour has gone from "polluted blue" to "murky green". My eye colour always went green after a couple of wines, now they seem to be permanently that shade!
- Despite our best efforts, crap happens; eg after my first chemo I was hypervigilant about hygiene, temperature checking, sanitising everything etc only to have my son come home with chicken pox and so I landed in hospital for a week!
Jane x
- doonaMember
ouch ouch ouch ,suffering with jock rash (i think )on my bits,wondering if over the counter stuff will sort it ,any advice appreciated int his heat (
- nicole_hMemberJust a couple of things to add to the abovementioned great suggestions: ? suck ice or icipoles whilst having chemo helps to retain your taste buds ? see your dentist before chemo & have a clean & polish & checkup then just gargle bicarb after every meal. This prevented all mouth ulcers for me. ? be prepared for the worst and hope for the best. (Staying positive is rubbish) ? bc is not a journey but an ordeal Don't know if I'm qualified to offer any tips as I have a lot of treatment to go but I would have loved a starter kit with all this good advice direct from the source. It's been exhausting finding all the information myself.