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Braveheart60's avatar
Braveheart60
Member
8 years ago

Dread of Chemo

Hello everyone, so glad to join your group with my first post. I live in Cairns and was diagnosed in Nov with ER+ PR+ HER2- and underwent lumpectomy for 4.5cm tumor and removed 7 lymph nodes. Outcome was 4 of 7 nodes were cancerous so my prayers to avoid Chemo went unanswered. I remain very grateful that I got away without having to have a full mastectomy. Further tests showed lesions in liver and lungs which have since been cleared as not cancer, what a huge relief. I had a port implanted which is very irritating and a constant reminder of the chemo to come. The waiting as you all know seems to be endless from the moment the GP says you have cancer to the day of your first Chemo. My first day is Tue 9th Jan and it feels like a dark cloud hanging over me, I almost cant wait to start so the anxiety of what is to come finally arrives. I've read that you all say it's different for everyone, so I guess I wont know how to cope until I'm in it. Any practical advise for my first date with chemo would help enormously. And, is it okay to be on your own at home after treatment? Also, how do you cope with what to expect following treatment? I don't want to sit around waiting for symptoms to emerge, what does everyone else do when they get home?

chemotherapy

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  • Braveheart60's avatar
    Braveheart60
    Member
    8 years ago
    Terrific advice, thank you everyone, I wanted to reply to each conversation separately, but can't work out how to do it.!! I don't have children, I only got married in March (2nd time) seems unfair to have to deal with this so soon after our wedding. I lost my first husband to mesothelioma in 2008 we were together 31 years, I cared for him for a year before he lost the fight, I never would have thought it would happen to me. I'm going to keep reading posts here and asking questions as a way to get through this. Thanks again xoxox
  • primek's avatar
    primek
    Member
    8 years ago
    Reading your post reminded me of my chemo. I was anxious to start and also so sad. I can remember crying in the shower that morning. Then I pulled it together and slapped on my big smile and off I went. It's okay to feel frightened, sad or nothing...as long as you turn up. 

    I felt very tired after chemo due to drugs so wasn't fit to drive. A number of hours later I just felt weird and thought I would be sick (I wasn't but felt it) it was scary for me. It was only a couple of hours for me alone but I recall feeling I needed someone there just in case.  So if you can have someone there for your first day would be good. Or at least someone you can call if you don't. The 1st one is very unknown, many people have no issues. I wasn't one of them and eventually required additional days if steroids plus 2 antinausea meds. I was on ACT-H. ...you certainly wouldn't be gaving the H.

    I had someone with me every chemo (not herceptin) so I had someone to chat to. My unit was small and no division between chairs  and same nurses so we often chatted and I got to know other patients so we chatted too. I often dozed but struggled with reading because of meds. Everyone is different. Colouring books can be good to pass the time. 

    Best of luck and let us know how it goes. Kath x
  • Sunshine0206's avatar
    Sunshine0206
    Member
    8 years ago
    Hi there,

    I’m 3/4 of the way through chemo - completed AC and finishing of taxol now.

    i understand your anxiety of just wanting to start. Wanting to know what it’s like. Getting on with it is empowering. Feels like control. I get you. I felt the same. 

    When it did start I was ok. Anxious and teary but ok. No nausea. Bit tired but I was still recovering from bilateral mastectomies (one elective/I’m 41)All things considering I felt good. Head hair  fell out about day 17 along with all other hair about day 14. I fell into the cycle of treatment. Feeling bit crappy for a week then 2 good weeks. It really was not too bad. I had no expectations so was never disappointed or surprised. 

    Talk to the nurses. Tell them your worries: they will make referrals if necessary. Be frank and honest. Trust your team.

    Maintain gentle exercise. It helps with fatigue. I swear it. Referral to exercise physiologist will help.

    Try some mindfulness practices. I was pretty anti that stuff but it has helped my type a personality settle down a bit. 

    Try to sleep well. Get help with that if necessary. 

    Ride the wave. Don’t fight it. 

    Best wishes.
    xx


  • socoda's avatar
    socoda
    Member
    8 years ago
    Hi @Braveheart60, I didn't have any chemo but just wanted to say Welcome to the forum and send you a big hug . Xoxo
  • kezmusc's avatar
    kezmusc
    Member
    8 years ago
    Hi @Braveheart60,

    Welcome xoxo.  And yes, the fear of the unknown is awful.  Once the first one's done and out of the way thoug you will be able to guage from there.
    Sounds like we have a similar story.  I too had lumpectomy, axillary clearance (5 out of 24 positive) chemo (4 x 3 weekly AC the 12 x weekly Taxol), radiation ER+ PR+ Her2-.  
    Side effects do vary greatly but some of us get through not too badly at all. Some not so much. Probably best to have someone home with you on the first one till you see how you go.

    Different drugs, different side effects with me.
    I just felt really tired/drained and  dizzy the afternoon of chemo with the AC so just laid on the couch and watched movies. I couldn't have driven home on my own with this drug, but the dizziness could have been from having my head frozen for hours with the cold cap, I don't know. Probably not though as I had none of that with the next drug. Day 2 and 3 had a huge boost of energy due to the steroids they give you. Hardly could sit down for a moment.  Then tired mild nausea day 4 then back to pretty good till the next one.  It was the same for me every time so was easy to work around.

    The Taxol I had almost no problems and drove myself there and back each time. Worked, did all my usual stuff etc.

    Definitely take something to do so you don't get bored.  Books, colouring,  ipad whatever It's boring as hell once you stop playing with the remote on the chair lol.

    I am sure there will be many helpful hints put up by all the lovelies on here.
    All the best and don't hesitate to ask any questions.


  • Afraser's avatar
    Afraser
    Member
    8 years ago

    Hi there

    Sorry, but waiting is an unavoidable part of the treatment - it is not possible to predict how you will react (or if it is, I don't know anyone who knows how to!). For a first treatment, it is useful if you have someone (a family member or friend) to go with you and to help you home if you feel unwell. What happens during and after the first treatment will give you some idea of what to expect thereafter, although if you change therapies (I had 3 months of A/C, then 3 months of Taxol) your reactions may change .I don't know if you are living by yourself, or mean is it OK to be home alone for periods of time (ie if others are at work). Again, it depends how you feel. I had no nausea or fatigue, some have nausea but are not frequently sick and have a degree of tiredness, some are badly affected by both. There does tend to be a cycle - you will get to know what that is, and then can plan better as you will know what days you feel better and what days you don't. Take something to do during chemo - whatever you enjoy - reading, crosswords, but something to occupy your mind - it can be tedious, and it doesn't help to sit fretting about what's happening. Most day oncology units will offer you something to eat or drink, but you may want to take something with you - It's another way to fill in time. If your chemo is likely to make you lose your hair, this may occur in about 14 days after you start. Scalp tingling and slight discomfort beforehand is normal. My day oncology had a small range of scarves and hats available (although I chose to wear a wig). It's almost impossible to shake off that dark cloud at this stage, but remember that every chemo treatment is one nearer the end of your chemo treatment, count them down!  Best wishes.