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lovemelrose's avatar
5 years ago

Stop the ride...going too fast

I found the lump on Saturday15th August. They kept saying cyst. By Thursday I was told over the phone buying a box off nappies it was cancer. 
The bad news kept coming from there. 
It was triple negative. It was grade 3. It looks to be the Angelina Jolie gene one. 

I had 2 surgeries last Tue and Thurs (lucky I found it early and small but it was in 2 nodes)

I am seeing the surgeon again tomorrow then the oncologist later this week. 

All this terminology is a new language that I have yet to discover the meaning for. 

I don't know if I'm stage 1 or 2. Just that its TNBC and Grade 3. Likely 6 months of chemo, they've said radiotherapy and the dr was hinting a double mastectomy and reconstruction. 

I am 38. I am exhausted. I'm confused. I'm scared and I have 2 little girls who need me. They keep saying not to google but it's all I can do. I am terrified. 
  • Taking something to occupy the time is a good idea, whatever you most enjoy. It can be a bit slow especially on a busy day. You may feel sick but then again, you may not. I never felt sick through six months of chemo. My neighbour couldn’t make it home without nausea. It varies a lot. You’ll be given anti nausea meds with the chemo and also meds to take at home if you need them. I gave them up entirely after four treatments, but they can be immensely helpful if nausea is a problem. You will work out after a couple of weeks how your own cycle of side effects works - many people experience fatigue, usually in the middle of the cycle but it’s not invariable. Once you know your own reactions, it’s much easier to plan for good days and not so good days. Most day oncology centres offer snacks and tea/coffee. Best wishes. 
  • Hi again,  regarding tips for chemo there are some on the site here. I have 4 chemo rounds to go (3 after today). I have never been nauseous which is grest. 

    I have found having meals prepared ahead helpful if you can do that or have a friend make a couple for you.  Handy for days when you may feel a bit weary.  

    I drink lots of water to help my veins on the day before chemo and my chemo day especially. I think it helps me as i have gone through chemo without a port.  

    Exercise really does help. I walk most days and try to do some pilates type exercises as well. As much as I have plenty of tired days I do find that exercise makes me feel better. 

    Until you start chemo keep busy. Chemotherapy is a scary word when you don't know what it involves. I try to tell myself each time I do that the chemo drugs are like a healing light that will destroy any random cancer cells and not affect my healthy cells. I use meditation and relaxation techniques to visualise the chemo healing me.  I also try to tell myself that chemo drugs as re just like any other course of drugs used to make people better. For example we take antibiotics and finish the course to ensure the bug doesn't come back. So we do the chemo to treat the cancer and make sure it doesn't come back.

    Be kind to yourself and try to rest as well. We are all going through a big deal and it's ok to take time for yourself. I hope you have some supportive people around you to help at home and with your girls. Sending hugs x


  • Nice @Cath62, I love the visualisation method 👌🏻. I did the same with radiotherapy. I think it helps a lot 😊
  • My best tip for chemo is to request a port. Your team may have suggested it,  but if they haven't, enquire. Chemo like pro, none of the endless stabbing and jabbing. A caveat here, they don't always work like they should, but having done the shit show with and without,  I can't recommend them highly enough. Good luck. Mxx
  • Hi @lovemelrose sorry to see you here.   The ladies on this site have wonderful tips and suggestions.   I was diagnosed in April 2020 and many times I have said to myself it's like a rollercoaster I want to get off.  But I have found taking one step at a time helps me.   Write down your appointments and any questions you have because so much information comes flying at you so fast.   I hope you have a support network at home to help you.  Sending you hugs xxx
  • @lovemelrose I did have a list from when I did it - collected from advice here - but I can't find it.  As @zoffiel said, have the discussion about a port.  I hated mine but was so glad that I had it as it saved my veins and that's pretty important when you can only use one side for tests.

    I always went in to the treatments with books and tablet and phone but generally found that I was too distracted to concentrate and would end up talking to people or flicking through magazines.  And wear something comfortable (and whichever method is used to access the vein, the nurses will need to get to the area easily).

    From memory, what I got in to have in the house during chemo was:
    Sorbolene for dry skin
    Colyxol with senna
    Movicol (I never used this but I know many have needed it)
    Toddlers toothbrush
    Biotene mouthwash
    Baby shampoo (I tried the cold caps for a couple of treatments)
    Hand sanitiser and disinfectant wipes (and we weren't in Covid times, then)
    Toilet wipes (sometimes it's gentler)
    Sick bags (never needed them but kept one in the car, anyway)

    There may have been other things that I can't remember.

    With regard to the dreaded hair question, don't go rushing out to buy expensive wigs or head coverings - I only wore a wig when I really wanted to fly under the radar and you can hire them in many cities fairly cheaply (if you put your general location on your profile, someone may be able to give you tips).  I was fortunate enough to have head covering giving to me and honestly, op shop scarves work really well, too if you feel the need to cover up.

    I'm not sure if they are running the "Lood Good, Feel Better" workshops at the moment but worth investigating.

    Also check with your clinic about recommended exercise programs with a rehab centre - exercise is really worth doing during chemo but you need to be with someone who understands cancer treatment. It helps with getting the chemo through your body, it helps with immediate recovery, and it helps with long-term recovery.

    Keep a notepad handy at home so you can record how you're feeling, what time you took any meds, temperature, etc.  This not only helps you to keep track of things on a daily basis but will also give you (and your onc) a picture of what you can expect during treatment.

    Don't suffer in silence - if the meds sent home with you don't work as well as expected, ring up the clinic and let them know. I learnt this the hard way not realising I didn't have to go through a whole weekend feeling so lousy.  They only give you the minimum medication and some people need a bit more.  For me, better nausea medication and something for reflux and I could manage okay.

    Another suggestion if you have time before chemo starts, is to find a lymphoedema specialist physio and get scanned.  It should be done before surgery but almost never is, but it will give you a baseline if there is ever any concern.  Again, if you put your location on your profile, someone may be able to advise if there's one near you.

    If people want to help, it's good to have an idea of what help you may need.  Often friends turn to making meals for you which is nice, but no point have a freezer full of things that no-one in the family really likes.  You may have real things that you need help with - taking care of the kids for a couple of hours when you've just had treatment or picking them up from child care (school, whatever...), driving you to treatment...  For me, it was the stuff with the kids that was important when I couldn't do it.  One time, a childless friend drove across town, picked my daughter up, then took her miles away to the other side of town so that she could take part in a school sports carnival while I was in chemo.  That meant the world to me as I knew how disappointed my daughter would have been not to go as it was a pretty big deal.  I mention it as an example because it was really hard for me to ask my friend (absolutely not what she would choose to do with her day) but she did it because she cared and it was something concrete she could do for me.


    I hope that what I have posted doesn't cause any anxiety as that's not my intention - rather to give you a working list of things that I discovered at the beginning of my rollercoaster ride.  And I did find it helpful to have things to "check off" before treatment began.  Chemo is certainly not something that anyone would choose to do as a fun activity, but for most of us it's not as bad as we expect - mainly a long haul.

    Oh, and get ready for some intense streaming - when you run out of energy, that's always handy.  Take care.
  • hello @lovemelrose @sister mentioned the Look Good Feel Better program, its a great program and they are offering virtual and face to face workshops https://lgfb.org.au/workshop/ which you can view via their website
  • Best wishes @lovemelrose. So much information to take in all at once.  As already has been said it's hard but it's doable. Get all the support you think you need and ask for help when needed. Your medical team is there to help. And always use this site to talk to someone who listens at any time
  • @lovemelrose I hoping your doing ok...can I ask you was your cyst painful...they found a cyst in my bc boob at 12mth mam...but 2yrs down and I find it hurts now...anyone else experience that with a cyst? Take care @lovemelrose xx