Preparation

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KayB55
KayB55 Member Posts: 75
edited July 2019 in Day to day
I was diagnosed last Friday and it has been a rush of appointments, tests etc. I think I am in shock and just going through the process but the reality is that I will start chemo next week. I have been reading the advice in the paperwork I have. There is only me but I am well supported by friends. Are there some day to day things that I need to be doing now before treatment starts which will make life simpler. I am not a good housekeeper, should I do a big clean in the house or get a professional cleaner in? I know this is a pathetic question.
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  • Afraser
    Afraser Member Posts: 4,388
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    It’s all a bit of a blur at first isn’t it? Sorry you have to be here but it’s a good place to ask questions and get some honest and caring answers. Do what you feel you most want -if that’s to sit back, do very little, let the spinning slow down, then do that. If cleaning makes you feel more in control, go for it. Until you start chemo, it’s extremely hard to know how you will react. Some people get knocked sideways, some find it not too bad, most are somewhere in the middle, with good and bad days. It’s daunting at first but chemo doesn’t go on for ever. It’s hard not to try to plan ahead but for the first few weeks, step by step makes a lot of sense. After a while you will know much better how you feel (physically and emotionally) and will make better decisions about what’s important to you. And there are never any pathetic questions! We’ve all been there, worrying about little things because we can’t quite get our heads around that one BIG thing. Ask away, accept help when offered, one step, then the next one. Best wishes.
  • KayB55
    KayB55 Member Posts: 75
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    Thank you most sincerely. I got a new kitchen installed during the school holidays and have not unpacked etc. so I think I need to get all those things done this weekend (with help from some friends) to reduce the dust and clutter. Step 1.  Regards
  • Sister
    Sister Member Posts: 4,960
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    You really won't know how you're going to travel until you've started - once you've had the first one, you'll have a better idea of how it's going to affect you and the pattern of it.  By all means, clean your house if that's what you want to do as you may not feel up to it during chemo but I guess it depends how much you care about things being spotless.  Personally, if I could afford a cleaner, I'd have one :-) .  If friends ask how they can help, then it's always good to have specifics so some help with cleaning might be one if you think they'd be up for it.  You may want to investigate online grocery shopping if you don't already do so but then again, getting out might be what you want to do.  As for what to buy beforehand - as @kmakm says, you may not need everything but it's good to have on hand if you do.  Of this list, the only thing I didn't use was the Movicol.

    Biotene mouthwash
    Really soft toothbrush (toddlers)
    Coloxyl with senna
    Movicol
    Gastrostop
    Toilet wipes (it can get a bit tender)
    Disinfectant wipes (good if you're concerned about cleanliness out in the world)
    Hand wipes 
    Hand sanitiser
    Sorbolene (chemo can make your skin dry)
    Decent thermometer

    If you're having cold caps, get some baby shampoo and a wide toothed comb.  If you're not, you don't need to rush out and spend a fortune on a wig.  See if there's anywhere you can hire one if that's what you want to do.  And check out op shops for nice scarves - there's lots of YouTube demos of how to tie them.

    I had Crown Mints instead of Fruit Tingles - same purpose.  I also found that I struggled to drink flat water so maybe have some sparkling on hand.  There is a discussion on here somewhere about best meals during chemo.  The one thing I found was that what worked during one part of chemo, didn't do it for me later so just be aware of not preparing too much.

    Have you got someone to take you to and from the chemo treatments?  It's a bore but at least for the first one, you shouldn't rely on being able to drive home.  I would be asleep by halfway home - not sure if it was the chemo, the other drugs given, or the after-effects of anxiety.  Don't worry - anxiety is normal but generally not needed.

    Make sure that you know who to ring if the meds they send you home with don't work well enough.  I went through a couple of days of sheer hell because I didn't know any better and it was the weekend.  A phone call on Monday sorted out a script faxed to my local pharmacy and all good.  For most of us, there's no need to suffer badly but you do need to know what to do about it, particularly given you're on you own.

    Even if you're not a daytime telly-watcher, you may find yourself bingeing on it so iview or Netflix is a good investment.

    You don't say where you are, but you may be able to access an Encore class.  They usually start at the beginning of term but you will need your doctors written okay.  Other than that, see if your oncology clinic has any exercise classes they offer or refer to.  It's important to keep up the exercise as best you can - it helps get the chemo through your system, protects your heart during it, and aids to recovery afterwards.  But don't expect to be able to run marathons.  Immediately after each treatment, walking to the letterbox might be all you can manage and that's okay.  If you include the region where you live on your profile, other members may be able to steer you to local classes.

    Just remember - while this is not fun, it is doable.  You will get through it.
  • KayB55
    KayB55 Member Posts: 75
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    kmakum, Thank you for the advice. Shopping I will go today after today's round of blood test, scan, education program - well perhaps on the weekend. 

  • kmakm
    kmakm Member Posts: 7,974
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    You'll be right. It's grotty but it's doable. Big hug, K xox
  • KayB55
    KayB55 Member Posts: 75
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    Sister, thank you so very very much for all of this information. My shopping list is quite long now but I can do that tomorrow. I will check out exercise classes (not that I do exercise) because I know that will be really important. Still in the phase of telling friends, then colleagues but I'll leave telling students to someone else because this is not as easy as it sounds to do. 
  • Sister
    Sister Member Posts: 4,960
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    I found it quite difficult keeping everyone updated - sometimes you don't want every conversation to be about cancer.  With hubby's help, I set up a blog and gave family, friends and colleagues the address so that they could see what was going on.  It also often helped with my mental state to write things down and has turned out to be a great journal of a time that I find hard to pin down.
  • Afraser
    Afraser Member Posts: 4,388
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    The journal (that no-one has read except me) was a really good activity for me too. It was one way to record my progress but also allowed some feelings and thoughts to air productively, without scaring anyone else! 
  • KayB55
    KayB55 Member Posts: 75
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    Is the journal in the My Journey Kit,that sounds just perfect for me. I need to get a specific diary to record everything down so I can keep track of what is happening. 
  • Afraser
    Afraser Member Posts: 4,388
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    There is one - I found it was too focussed on treatment and appointments for my purposes, my simple word document could do that but also accommodate as much or as diverse writing as I felt like. A file for your appointments, reports, anything at all you may want to refer to or check is invaluable. Keeping them in one place (a file/box with separations works well) saves time and hassle. 
  • sallylovestosing
    sallylovestosing Member Posts: 31
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    Yup, @Afraser is quite right - aplace to keep all your reports/results etc is a must. A blank journal - I wrote a few lines in mine every night, as much to make sense of things and keep track of what was happening to me as anything. The best gift I got was from my kids - they bought me a sodastream because ordinary water tasted so awful when I was having chemo, but sparkling was lovely, especially with a squeeze of lemon!
    Doing a mad clean and tidy before everything kicks off will at least keep your mind off what ifs and make you feel as though you're achieving something
  • Sister
    Sister Member Posts: 4,960
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    I bought a zipup 2 ring binder from Officeworks (then upgraded to a similar lever arch file as it wasn't big enough) some coloured dividers and some plastic sleeves.  Everything went into that so it was both filed and it could be taken with me to appointments if necessary.

    I also used to keep a notepad on the kitchen bench and record meds, temps, how I was feeling and any questions.  Before each appointment, I would pull out the relevant information and pop it into a word doc - a brief diary, a list of symptoms and whatever questions I had.  Onc added these to my file.
  • KayB55
    KayB55 Member Posts: 75
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    Many thanks. I have my list of shopping I need to do tomorrow before chemo and I'll get that diary to record everything because my brain is definitely not working well and I think I will stop answering the telephone.
  • Blossom1961
    Blossom1961 Member Posts: 2,396
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    I stopped answering my phone too. I got tired of stupid statements.