If you knew then, what advice would you give to someone about to start Chemo? Im in Tassie

Nay86

Hi everyone. Sorry for the long post in advance..... sooo this is my story. Im 32 years old. I was talking in bed with my boyfriend and went to lay on my back and something pinched in my right breast. I felt a lump that was different to all my other lumpy breast tissue and the BF agreed. I see a chiropractor for realignment of my body and lymphatic massages every 4 weeks and noticed all the other lumpy breast tissue was broken down but that lump. After 2 visits and the lump staying i went to my Dr who sent me to have a mammogram (which friggen hurt) and an untrasound which i had to wait 4 weeks for the appt. I got in in the 16th Aug Thursday 2018, they scheduled an urgent needle biopsy the 20th Aug and by the 23rd Aug i was diagnosed with Breast Cancer. I went into surgery 5th Sept to have a lumpectomy and some lymphnodes removed and the specialist confirmed it started making its way into my lymphnodes. I've been diagnosed with Stage 2 Grade 2 (was grade 3) Ductal Breast Cancer Her 2 negative and oestrogen and progesterone positive. I have been using implanons in my arms for nearly 10 years and it makes me wonder if this has contributed to this. I had a Smart port inserted 28th Sept. I'm currently completing IVF before my Scheduled Chemo on the 22nd Oct. I have to have treatment every 3 weeks for 4 months.Then radiotherapy and hormone therapy. The sheet for Chemo says FEC part one of fec-d  and my second sheet says part 2 of FEC-D i hope you understand this.  So what do you wish you were told about Chemo? My hospital doesn't have the cold caps and has advised me my hair will go. I've been told to put on gel toes and nails as i will be sun sensitive and i have purchased soft toothbrushes for each chemo round and moogoo body wash, mouth wash, toothpaste and deodorant. 

arpie

Gosh, @Nay86 Sorry to see you here - but well done on finding the lump - the waiting for the appointments is a real pain - I live on the Mid North Coast & have had to wait weeks for many of my tests & procedures as well    

You've had the surgery & now have the game plan in place ...... I wish you well on your treatment path.   I was lucky & dodged the chemo bullet - but I am sure that others will jump on shortly and give you lots of advice re chemo. 

Just a thought - If you click on the little 'wheel' above your post - there is a 15 minute opportunity to 'edit your post' and you could add TASSIE to your 'headline' - then some of our Tassie members may spot the post & be able to help you with local info as well  

All the best xx

Nay86

Bummer. I think I've missed the editing chance. 

arpie

Bummer!! Hey, I'll see if @Giovanna_BCNA  may be able to add 'Tassie' to the title ..... as I am sure we have 2 or 3 members in Hobart - and hopefully have some in Launceston!!  

I visited Launceston last year & went Bream fishing along the coast there with some buddies, St Helens, Ansons Bay ...... GORGEOUS spots!!  I hope to get back there again for a 'dedicated fishing trip'!     (I am a crazy fishing lady - in kayaks!)  LOL

Nay86

Ok cool. Wow that sounds like it would of been alot of fun. i go to the Cancer Clinic every now and then for a new book to read or time out if needed. That helps.

Sarnicad

Everyone does chemo differently partly because chemo types differ but also because we are all individuals. My experiences on chemo may not be yours. For me it was brutal. I would be not great for 10 to 12 days after chemo - I had a 3 weekly cycle. Others manage to work right through. 

Find a a good nurse they are invaluable in answering questions providing advice on managing side effects and are great sounding boards. My oncologist has a nurse and she has been my lifesaver on many a day for my “dumb” questions, sorting out meds, advising me on what to take to deal with my latest side effect etc. 

arpie

@Nay86  That's Terrific - we all need 'time out' - my 'time out' is either out on the kayak or with my ukulele group!    

There may also be a BC group in town - sometimes it is nice to get together with others who've been thru it & you have common ground to chat about. We have a group here that gets together every month or so .... I get their newsletters but haven't attended yet!  Yep, I am really SLACK!  LOL

Have you received the 'Journey Kit' that BCNA has available to anyone with BC (whether members of the forum or not?)   Check it out here - there is a LOT of info in the kit that will help with dealing with family & friends & questions & answers - plus a really neat dairy that helps you keep track of appointments & costs etc
https://www.bcna.org.au/resources/my-journey-kit/  

And lots of booklets to check out as well ..
https://www.bcna.org.au/resources/booklets-and-fact-sheets/

And if you want anyone to 'receive notification' of your posts .....just put '@' in front of their name (like I did with Giovanna who is one of the Moderators on the forum) & a blue box will pop up for you to click on & they'll be advised of your posts.      YAY!!   Thanks @Giovanna_BCNA  - she has just edited your title!    

Giovanna_BCNA

Hello @Nay86
Welcome to the online network.  I have edited your post and added Tassie.  
Im sorry to hear of your diagnosis, great that you followed through and had the breast lump investigated.  
Dont hesitate to call our 1800 500 258 number if you would like to speak with a cancer nurse for information or support.
All the best with your upcoming treatment,
kind regards Giovanna

Sister

Welcome @Nay86.  I had a different chemo regime to you - AC-T - but I think the way it impacts you is probably similar.  You can ready diagnosis and treatment on my profile.  You've got the toothbrush - I used a toddler one.  I would suggest you get some Biotene mouthwash, Gastro-Stop, Coloxyl with Senna (many have Movicol as a backup), double strength Mylanta tablets, toilet wipes, disinfectant wipes and hand sanitiser.  Make sure you have paracetamol in the cupboard.  I also went through a lot of sparkling mineral water - with or without flavouring added.

Keep a notepad somewhere easy so that you can record how you're feeling and when you've taken what.  It's useful so you know when you can take meds, as a guide to getting to know how you are likely to respond each time and to enable you to keep your onc informed.  I would type up a brief diary before each appointment and any questions I had.

My last advice is to not suffer in silence.  If the meds you are sent home with don't cut it, don't hang around - ring up your clinic and tell them!  I went through a ghastly first few days because I didn't think that I would get anywhere on a weekend.

Apart from that, you will only know how it affects you when you start - you may sail through it!  Fingers crossed.

Nay86

@arpie yes i did receive my journey kit and post surgery bra. Went into a local bra store and bought some comfortable no wire bras. They are going well so far. Just have to keep ontop of arm exercises from surgery.  @Giovanna_BCNA thank you for that @Sister thanks yes i have somac for heart burn and i have soda water, hydralyte icypoles, moogoo toothpaste,  mouthwash, deodorant, body wash. I was given an oncology pack. Its safe to use and really nice. I also have hand sanitiser. Are the wipes for home use or public or both? 

Kiwi Angel

@Nay86 I had a different cancer and a different chemo to u and everyone does react differently and u can react differently each cycle. Just don’t be afraid to ask for help and never suffer in silence if u r sick or in pain. Sending u big hugs xoxox

Sister

I used the disinfectant wipes when I was out and about. The toilet wipes were for when the bottom got a bit too sore!

Nay86

@Sister Aaaah ok no probs xx

Afraser

On a slightly different note, I didn't stock up on much and didn't use much. No steroids after the obligatory ones with my first treatment (I had A/C, then Taxol and Herceptin). Salt solution managed my mouth, no ulcers, normal toothpaste/brush. Normal hygiene, didn't get any infections. No nausea (burped a little for a day after Taxol), no fatigue. Lost my taste buds on Taxol, so it didn't matter too much what I ate as I could only taste about 4 things (but still, no nausea!). Switched to MooGoo deodorant (which I still use). Good to be prepared though, here's hoping you have a good run. Best wishes.

kezmusc

Hi @Nay86,

Welcome to the forum lovely.   You already have some awesome advice from the ladies (as usual).

Trying to work out what caused it will do your head in.  There really is no rhyme or reason to it by the looks.  Just plain out bad luck being the 1 in 8 winner of the booby prize.

I had a similar rotten thing as you by the sounds.  Stage 2 grade 2  ER/PR +, HER2neg.  Lumpectomy, Aux clearance 5/24 nodes involved, 6 mths chemo (different regime, I had ACT) 30 rounds rads, 10yrs hormone therapy.

What I wish I had have known at the start??  I wish I had have known that my brain was conjuring up a lot more of a horror story than what it actually turned out to be.  It would have stopped a lot of anxiety, tears and worry.
 
I wish they had told me that when you need to pee, you better run fast. There is not much time in between. It almost got very embarrassing a couple of times.. That one is not on the list of side effects.

Definitely get the nails done.  I just used gel polish and had no issues with my nails.

 I had a reasonable run with the whole thing I guess.   Kept my hair (sux they don't have a cap for you to try) never caught any bugs or colds. Minimal fatigue and just tried to carry on as normally as possible.  There were crappy days along the way but a lot that weren't.

Very few problems with rads, apart from it being a pain driving there everyday.  Moo Goo is awesome stuff.

One thing I do suggest is to take a lot of photos of the fun things you do along the way with family and friends.  It gives a great sense of achievement to see what you managed in amongst treatment. Plus that way when you look back that time in your life is not all about the cancer.

xoxoxoxo

Karenhappyquilter

Sorry about your cancer but great you found it and now being treated.  Lots of good advice above.  I had FEC.  Important things for me were:

you might be given maxalon for nausea and some people have a bad reaction to Maxalon, I did, I had Parkinson’s disease like shaking in my legs.  If you have this reaction stop taking Maxalon and go to emergency, they have an injection they can give you and the shakes wear off eventually;

which leads on to saying there are much better drugs for nausea than Maxalon which you can have, you don’t need to suffer nausea;

i found out out by accident that my oncologist answered emails promptly, this was wonderful if I had a query;

you might not be able to read a novel when having chemo, my brain just couldn’t cope, but I could read and enjoy short stories and newspaper articles; 

tv is also great, I watched lots of call the midwife and great British bake-off;

You might be surprised by other people’s reactions, some people will be great and very supportive and others who you expect to be great, are disappointing;

there is a theory that fasting around each infusion makes the chemo work better and also have less effect on healthy cells, it’s a theory only; 

managing your bowels is important, sometimes you might need medication for constipation one day and then the next day, medication for diarrhea, always drink lots of water;

excercise is very helpful, so long as you can do it; and

it ends eventually and you move on. Best wishes. Karen