Forum Discussion

Beaglemum's avatar
Beaglemum
Member
6 years ago

Finally Reaching Out

Hello to this wonderful community, I was diagnosed in early September and have been reading this website and online forum almost daily since then and for some reason didn't have the courage to join in, but have received much comfort from you all (albeit indirectly) already so thank you.

Summary of my "journey" so far - had open biopsy following mammogram, diagnosed one week later with cancer, had lumpectomy and SNB  within a week - received clear margins and clear nodes - started to breath again!  Was advised i would need radiation and hormone therapy but Chemo was the unknown as ii was in a "grey area".  Was advised about the Oncotype DX test and that it might be of benefit to me.  On my first Oncologist visit we discussed the chemo and it was quite likely that I wouldn't need it based on averages/numbers.

Maybe its because I'm a numbers person I don't like averages - like to deal in real numbers and also grey is such a dull colour -  I opted to go for the Oncotype DX - thinking long term "what if it returns and i didn't do everything I could at the time'   It was a long 3 week wait and anyway i was sure it would come back confirming I wound't need chemo - well as I have found out there are no certainties with this beast, based on my results it was decided I did need chemo after all. - that was last Thursday.

I have cried every day since - usually when no one was around to see me -mostly in my car driving home from work - I thought I was dealing with it all - but the chemo was my breaking point I think.  Thought of hair loss, sickness, time off work etc was scaring the bejesus out of me.  Yesterday I had my first chemo session and it wasn't as bad as I thought it would be.  Waiting for the side effects to kick in, but so far so good.  I am having the cold cap in an attempt to minimise hair loss - but will wear a wig/scarf if necessary - am booked in for a look good feel better session on Monday.(Yes I a a bit vain!)

So sorry to ramble on so much on my first post- maybe if I'd logged on when I first started reading this site it would only be a short lines with catchup information.  Anyway I'm glad to have finally reached out as I think you are all inspirational. xx
  • Lynnie1974's avatar
    Lynnie1974
    Member
    6 years ago
    @Beaglemum, before you know it you'll be on the other side of chemo. It's a tough journey but like others have said, it's doable. You just have to take one day at a time and be kind to yourself. Do whatever you need for you to survive mentally. Lie in bed and watch Netflix all day if you have to! I had days when I would poke my head out the front door then slink back inside, which is a big change for me as I'm someone who likes to be out and about every day. But hey, I knew it wouldn't last. Oh, and go and speak to a psychologist if need be. 

    Like you I was (and still am) 'vain'. Although I prefer to think of it as just having pride in my appearance, afterall, we all feel better when we feel good about how we look. I did the Look Good Feel Better program and it was great. I also looked up lots of stuff on Youtube. When I eventually lost all eyebrows and eyelashes I drew eyebrows on every day and used false eyelashes ('Glam' brand from Chemist Warehouse - not too expensive). Check out eyelineherblog on Youtube. She's amazing, she has Alopecia and does lots of videos on how to do eyelashes and brows, even how to give the impression of lower eyelashes when you don't have any and can't use falsies. I'm jumping the gun when you've only just started but keep it in your 'kitbag' of tips if need be. Oh an I also used fake tan on my face and neck every day as it made me look and feel healthier. There's nothing wrong with caring about how you look. 

    Sorry, don't want to overwhelm you with info! 

    Take care of yourself, you will get through this and will be able to look back and say 'wow, look how I bloody nailed this chemo/cancer thing! How awesome am I?!'
  • Sister's avatar
    Sister
    Member
    6 years ago
    Welcome @beaglemum.  Like @kezmusc I had AC-T but I know there's many on here who had TC (@kmakm?) .  You'll know if the cold cap works for you - just make sure it has good contact all over the scalp for the whole time.  Wow! just think...you are a quarter of the way through!  For me, Maxolon was rubbish and the doc prescribed me Ativan for nausea (the added bonus is that it makes you very sleepy and I slept through the toughest parts) and Somac, later changed to Nexium for the reflux.  What works brilliantly for some, doesn't work so well for others so don't be afraid to speak up and say you need something else.
  • kezmusc's avatar
    kezmusc
    Member
    6 years ago
    heheeh. Maxolon vs the good stuff ondansetron for nausea
  • Beaglemum's avatar
    Beaglemum
    Member
    6 years ago
    Hi Again

    Thanks for bringing me into the group so quickly, Yes chemo is the big bogey man - wish I'd looked under the bed earlier and he might not have been so scary. 

    I'm on TC - docetaxel and cyclophosphamide - only have to have four rounds (3 weekly) so not really that bad considering what I have read and what others have endured.

    Have taken pics of my hair pre starting - want to be able to show cooling cap works (if it does for me) for others should they be thinking about it and to send to my family who all live in UK.  

    Kezmusc what are the cheap drugs so I know if I'm having them or not  :smiley:
  • shs14's avatar
    shs14
    Member
    6 years ago
    Hi @Beaglemum Its a big shock, but once you start treatment you get into a rhythm and from someone who survived 16 chemo treatments I can say it is very doable. Great you are feeling okay after your first session. I think you need to cry some days too, so you can be brave on others!
    p.s. If you are having Paclitaxel I recommend considering cold therapy which I talk about in another post here on tests and treatments.
  • kezmusc's avatar
    kezmusc
    Member
    6 years ago
    Welcome @Beaglemum,

    Sux to be here for sure,  but great that you decided to join us. There are so many awesome people on the forum.
     Yep, chemo is the big bad nasty of the trip and it's horribly scary before you start because everybody reacts so differently.
    What chemo regime are you having?
    I had the standard cocktail ACT.  I used the cold cap and it was bloody brilliant.  
    One thing I like to suggest is to take a lot of photos along the way of anything fun (or even just the normal things) you do.  That way when you look back at this time of your life it's not all about the treatment.
    Fingers and toes crossed for you that the side effects stay calm.  If they don't let them know.  
    All the best lovely. xoxoxox

    P.s.  Make sure they give you the good drugs not the cheap ones! :)

  • Afraser's avatar
    Afraser
    Member
    6 years ago
    Chemo is such a bogey-man - and for good reasons. It’s pretty horrible for some people, but much easier for some of us. And most are in between. Finding the first session less than you feared is a good start. One of the side benefits of bc (you can learn to look at it that way!) is that many of us end up doing things we never thought we could. Do whatever it takes to keep your spirits up and focus on the future, not the past. Best wishes. 
  • strongtogether's avatar
    strongtogether
    Member
    6 years ago
    Sorry you have had to find us, but glad you have.
     Don't despair. Chemotherapy is awful but it is doable. Ask for help and make sure you get help. Stay in top of how you are feeling and get medical attention when you need it. There are good drugs that will help with the side effects. 
    Love yourself and allow the people around you to love you.
    Hugs