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
Comments
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What a fantastic idea, hmm my list would be.
- Cut or shave your hair before it starts falling out as your head gets very sore
- Be prepared with some diahorrea stop medication, some paw paw cream and have some power drinks in the fridge. (just in case)
- Cream for nappy rash, with the constant hot sweats persperation can run into your groin and it becomes painful.
- Claratine for the constant runny nose through chemo.
I hope these suggestions are of help.
Donna
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Like Donna said, fantastic idea! Here is my list.....
- Take medication for constipation the day after chemo. Don't wait until you are constipated!!!
- Understand that Dexamethasone causes sleeplessness, so don't stress when you are awake at 3am.
- Buy the best products that you can afford for dry skin and mouth care.I like Biotene and MooGoo.
- Shave your head a few days before chemo.This way,you don't have to worry about hair falling out.It minimises an already stressful situation. My oncologist actually suggested this to me.
- Zyrtec or Claratine for skin rashes that can appear VERY suddenly.
- Having chemo is a non event. I am sure that many ladies are terrified the very first time. USUALLY there is no need to be. It is actually very boring!!
- My most important tip is...WALK EVERY DAY! Even when you can hardly move your legs, walking really does help with the feeling of fatigue.
Cheers Robyn xox0 -
Like Donna said, fantastic idea! Here is my list.....
- Take medication for constipation the day after chemo. Don't wait until you are constipated!!!
- Understand that Dexamethasone causes sleeplessness, so don't stress when you are awake at 3am.
- Buy the best products that you can afford for dry skin and mouth care.I like Biotene and MooGoo.
- Shave your head a few days before chemo.This way,you don't have to worry about hair falling out.It minimises an already stressful situation. My oncologist actually suggested this to me.
- Zyrtec or Claratine for skin rashes that can appear VERY suddenly.
- Having chemo is a non event. I am sure that many ladies are terrified the very first time. USUALLY there is no need to be. It is actually very boring!!
- My most important tip is...WALK EVERY DAY! Even when you can hardly move your legs, walking really does help with the feeling of fatigue.
Cheers Robyn xox0 -
this is fabulous thank you so much!!! :-) i wish i had of thought of the claritine ...runny nose all the time - i swear i thought I hada tap leak! I also had tha massive nappy rash tried soo many things finally worked it out by round 4 of chemo - it was so painful! x
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I had a giggle when I read your comments, I had diahorrea like a tap had been opened, imagine the mess I would have been in if I took meds for constipation in advance! We do have to laugh about things and now its all over I can see the funny side of the situation.
Shelli another thought, a big thing for me was the fatigue, when the doctors told me that I would experience fatigue I thought I'd be a little tired I was not prepared for being out cold for 3-4 days. The 1st time my huband left me sleep he thought it would be good for me, ahh no I got dehydrated and ended up in hospital. So be prepared for the levels of the side effects they are different.
cheers
Donna
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I had a giggle when I read your comments, I had diahorrea like a tap had been opened, imagine the mess I would have been in if I took meds for constipation in advance! We do have to laugh about things and now its all over I can see the funny side of the situation.
Shelli another thought, a big thing for me was the fatigue, when the doctors told me that I would experience fatigue I thought I'd be a little tired I was not prepared for being out cold for 3-4 days. The 1st time my huband left me sleep he thought it would be good for me, ahh no I got dehydrated and ended up in hospital. So be prepared for the levels of the side effects they are different.
cheers
Donna
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I had a giggle when I read your comments, I had diahorrea like a tap had been opened, imagine the mess I would have been in if I took meds for constipation in advance! We do have to laugh about things and now its all over I can see the funny side of the situation.
Shelli another thought, a big thing for me was the fatigue, when the doctors told me that I would experience fatigue I thought I'd be a little tired I was not prepared for being out cold for 3-4 days. The 1st time my huband left me sleep he thought it would be good for me, ahh no I got dehydrated and ended up in hospital. So be prepared for the levels of the side effects they are different.
cheers
Donna
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Hi - things I wish I had known re chemo:
- your hair gets REALLY sore before it falls out!
- I didn't know how badly my sleep would be affected - 12 weeks in and I have not had a full night's sleep since starting chemo.
- Fatigue - yes indeedy! It catches up as the whole chemo effect accumulates.
That's my little contribution!!
Tink xx
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I found mints worked well with the metallic taste0
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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!
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perfect - did you have a favourite brand or was any mint heaven? x
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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
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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
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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
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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
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