First chemo

SpillsySpillsy Hobart Member Posts: 77
I think I must be a wimp or something, but I had a few okay days after chemo, and now it day 5 and I can hardly keep awake. I have no energy and have slept for most of the last 48 hours, I had all these plans of going out for a walk each day but I can’t get keep my eyes open, I can’t get my head around how I can be a mum, worker and wife and deal with this. 


  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,018
    Ah the dreaded 5th day, or night was my bugbear. It should be better once you get over that low nadir time.

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 2,469
    @Spillsy ; it is quite normal to feel really flat on either day 3 or 5 depending on when chemo treatment you are on. 
    Be gentle with yourself.... even a walk around the house if you cant get to going outside will help... on my really tired days both my 18 & 25yr old would drag me out of the chair and literally walk me around our 3 Acres to get me moving it did help. 
    how old are your kids ? 
    Are you still working ? 
    Do you have any assistance to get through this from family or friends? 
    Gentle hugs and energy 
    Soldier Crab 

  • SpillsySpillsy Hobart Member Posts: 77
    Thanks for your advice have just been for a walk, I have two boys 11 and 13, husband and circle of friends, most who don’t know yet as I was diagnosed the week before Christmas. I am off work since diagnosis, as had 1st chemo session, but should go back next week, as this is going to be a long road. 
    Don’t feel like me anymore, who was that person....
  • AnnskiAnnski Blue Mountains, NSWMember Posts: 43
    @Spillsy, it is so horribly true, you will never be the same, or that's how it seems to me. I was diagnosed in mid November, single mastectomy, after a lot of frustrating, confusing, infuriating messing around between hospitals and consultants I said no to chemo and am about to start radio soon. This thing takes over your life your feelings your emotions and put you in a different world, like you got in a lift thinking you were going to the first floor but when the door opens you find yourself off-planet. There is no way to plan, to know what the next day or month or year will bring.  I didn't want to tell anybody other than close family about my condition for quite a while but now I don't care ... they used to know that former person, now they can get to know this new person and if she doesn't appeal to them, too bad. Some women seem so calm and accepting and appreciate whatever good things they can find in their situation, and good on them. Hopefully this will come in time for me (and you). But this early in the process it is like a complete loss of focus, and never knowing how you are going to feel makes it worse. I had the stuff injected for the radio CT scan yesterday and spent four hours sitting on the throne with unrelenting diarrhea from 2.00 am. As for trying to go back to work ... could you get some more time off? I think that is a truly big ask, to manage all this and two young boys as well. You are going to have to treat yourself very kindly and insist on your right to your own time and feelings. You aren't the same now, and you need to find ways to fend off the expectation that you can just soldier on and manage everything as you did before. All we can do is send you our best thoughts and give you a place to vent your feelings, which is what this site is so great for (apart from the information and great practical advice).
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 2,469
     allocate things the boys can do to help you be it learning to put on a load of washing or hanging it out/taking it in. 
    Loading the dishwasher if you have one... I found cooking double batch of meals when I was ok. then freezing them helped me get through the bad days. 
    It is up to you about telling people about your diagnosis but it does help as some will do things like take the kids for a playdate per se and give you some space to breathe.... Christmas holidays are long at the best of times for young people. 

    Do you have a My Journey Kit ? 
    Do you have a breast care nurse ? 

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 2,469
     another thought is you could have inbuilt income protection in your superannuation.... Search on here the discussions about it and you will get some information regarding that. 
    Soldier crab 
  • jennyssjennyss Western NSWMember Posts: 317
    Dear @Spillsy ,
    I found that keeping a diary in an exercise book of my reactions to chemotherapy helped me a lot. I had a total of four cycles every three weeks from July to September last year. As I have learnt from this great network, we are all different in our reactions to chemotherapy. My drugs were Docetaxel and Cyclophosphamide. I had lots of information from my wonderful Breast Care Nurse, and the staff at the Alan Coates Cancer Centre in Dubbo where I was treated. 
    The diary was great for me because it helped me keep track of stuff as it happened, and to see a pattern in the cycles. It also helped  me to report back to nursing staff and the oncologist on what had happened and when. I took my temperature everyday too (LOL!) as I was worried I might get an infection (never did). Aches and pains, and fatigue may be the most common side-effects, but with any luck will ease off by day 8-10. 
    Best wishes from jennyss
  • SisterSister Adelaide Hills, SAMember Posts: 2,497
    I can't comment on chemo as I'm still waiting to find out what treatment I may have but as to the other stuff... I told immediate family and 2 key friends, asking them to tell other people.  I've since started a blog which has served the purpose of providing updates to people, and also to bleurchh (yes, I've decided that's a word) my feelings about what is happening to me.  My husband also told people that he works with in the community.  I've had nothing but offers of support and respect for my needing to bunker down with this.  My kids are 11, 12 & 15.  They've always done housework chores but they've taken on lots of other responsibilities since I had surgery, including cooking Christmas dinner.  I've had to let go of MY way of doing things a bit.  I've also told them that I will be completely honest with them about what is happening to me although I may not always share the what-ifs.  I think that taking on household responsibilities, although not always done with a smile, allows them to feel that they are contributing.
    Originally, I thought that I would go back to work as soon as term started but my GP insists that I don't as she says to concentrate on my physical and emotional health.  As reluctant as I am, and knowing that it will be very difficult financially, I'm coming around to the belief that she is right.  
    Look after yourself, @Spillsy.  You need to focus on getting through.
  • SpillsySpillsy Hobart Member Posts: 77
    Hi all, such great advice and information. I think I am still in disbelief stage, as a month ago I was having a ‘great life’ with so much to look forward to for 2018....
    My kids are being great and husband is being a tower of strength. 

  • MollygirlMollygirl Brisbane Member Posts: 213
    It's ok to feel that way @Spillsy, it's the shock of life being turned all upside down and round about. I said all the way thru chemo I didn't feel like me, look like me so this wasn't happening to me right!? You just keep putting one foot in front of the other and just do what you can manage. If you're able to go for a walk, great. If not, don't beat yourself up. The fatigue is real and it's accumulative I'm sorry to say. And PS you are so not a wimp - cancer sucks as does chemo and it's shitty side effects. Massive hugs xxoo
  • AfraserAfraser MelbourneMember Posts: 1,630
    Your emotional and physical health are connected. Your perfectly understandable sense of disbelief may well affect your energy levels, although chemo can do that really effectively all by itself! It's infuriating but you need to (temporarily) abandon your practical, juggling habits and take one day at a time. As others have said, many women experience a cycle - feel OK, then awful, then increasingly better - until the next dose. Knowing your cycle will help - then you can plan for your good (and your bad) days. Is your work adaptable in terms of hours at all? Can you work from home? It's hard on all the family but your young boys now have a wonderful opportunity to develop domestic skills that someone will love then for later in life! Let them help. Ditto friends. Many people have no idea what to say or do. Letting them know that a small thing (a cooked meal, a lift) would be helpful helps them too. As you are at home and sort of upright, you feel you should be doing a lot more, but what if you had a different type of illness and were hospitalised?  Every one starting chemo feels that this is how their life will be from now on - but it does actually pass. You are doing something you have never done before, unwillingly and probably fearfully. Of course you don't know how to do it!!  But if you can be a mum, a worker and a wife, you sure can learn this one too. It'll be hard, there will be tears, but you will also have (slightly ridiculous) moments of achievement, flashes of insight and (what we all want) a life to look forward to. One step at a time is frustrating, but it's effective. Best wishes.
  • kezmusckezmusc Member Posts: 621
    Hi @Spillsy.

    Chemo is a shit of thing isn't it?  But the ladies are correct of course.  It does get better.  I had 4 x AC and then 12 xwkly Taxol.  The afternoon of and day 4 of the AC were bloody awful.  Day two and three I had heaps of energy, from all the steroids I guess, so I used to do as much as I could on those two days and plan nothing for day4 ,then things improved again Once you work out which is your worst day you can plan around that. I worked but I was lucky I could change my shifts around what I knew would be my crappy days. The Taxol was a lot easier to handle for me.  Almost no fatigue/nausea at all.

    I had a calender on the fridge that I could put a big red cross through after each session was over so I could see each time that I was closer to the finish line.  Was I excited to put that last cross on.   
    One foot in front of the other and soon it will be over then you can mend and get back to being you. 

  • SpillsySpillsy Hobart Member Posts: 77
    Thanks all, such great advice from people who have been there. It's good to know you all got through and thinks you did. I think today was a big shock as I felt so dreadful most of the day and couldn't really interact with my family as I kept hopping into bed. I don't know what I would do without this discussion board, as if I try to explain to non cancer people they seem to not get it.  I am not pleased about my new life but with little choice have to get on with it. 
  • primekprimek Broken HillMember Posts: 4,418
    I had ACT-H chemo regime and I was wiped on 1st day...but okay after then by day 4 uuugh. Nauseas. Exhausted. And tired for another week. Then finally good for 1 week...then it all starts again. Perfectly normal.  I got a decent lounge chair,  sheepskin and netflex and settled in. 
  • SpillsySpillsy Hobart Member Posts: 77
    thanks all, felt so much better today, was such a shock to feel so bad. wrote down in my diary, for future reference and attempt to work in between chemo cycles!!!
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