Forum Discussion

Nay86's avatar
Nay86
Member
7 years ago

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

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. 
chemotherapy-side-effects

29 Replies

Show More
  • Nay86's avatar
    Nay86
    Member
    7 years ago
    @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? 
  • Sister's avatar
    Sister
    Member
    7 years ago
    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.
  • Giovanna_BCNA's avatar
    Giovanna_BCNA
    Member
    7 years ago
    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
  • arpie's avatar
    arpie
    Member
    7 years ago
    @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!  :)  

  • Sarnicad's avatar
    Sarnicad
    Member
    7 years ago
    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. 
  • Nay86's avatar
    Nay86
    Member
    7 years ago
    Ok cool. Wow that sounds like it would of been alot of fun. :smile: i go to the Cancer Clinic every now and then for a new book to read or time out if needed. That helps.
  • arpie's avatar
    arpie
    Member
    7 years ago
    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's avatar
    Nay86
    Member
    7 years ago
    Bummer. I think I've missed the editing chance. 
  • arpie's avatar
    arpie
    Member
    7 years ago
    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