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i have had enough

tismetisme Member Posts: 133
edited June 2019 in General discussion
only into my secodne week of radiation therapy, as the radiologist said im a beginner, i was told it would be 5 weeks of it but possibly more. and that contact type stuff they use just comes off .   I  its a long trip by mini bus to the rbh and back specially with spinal /hip /shoulder issues .  my issues read like a shopping list.  anyway,  now the NDIS  my daughter and I both qualify but i just cant deal with it , meanwhile niether of us get any help and daughter continues to do nothing.  I was talking about needing transport to medical appointments etc and ozcare and centacare both said they couldnt do it god only knows why.
I am worn out /burned out and I hurt that bus trip is agony, and to top it off this last weeked i spent battling the flu  I darent ask what is gonna go wrong next



  • TonyaMTonyaM Member Posts: 2,705
    Hi tisme, radiation is exhausting for sure,especially so if you have other health issues.Have you asked about seeing a social worker at the hospital where you are having radiation? A social worker could arrange the help you need- that’s their job.Perhaps it’s time to ask family and friends for help? We are often too proud to do that or don’t realize how tough radiation is going to be.Hope you get the help you need.xx

  • tismetisme Member Posts: 133
    I have no family cept an autistic daughter , and friends I thought I had , ...................... i dont  a social worker and a psychologist were supposed to be organised but not heard anything.  i met one social worker years ago ( worked for centrelink ) she was useless.  another , an oncology social worker , nothing she could do , seems to be the story of my life what I need i dont qualify for or ..................... i battled flu over the weekend no im ok so long as I dont move or cough etc then i hurt

  • TonyaMTonyaM Member Posts: 2,705
    That flu can last for weeks- you poor thing.You might be too unwell to go to radiation- have you rung them? It’s a sad fact but some friends will show their true colours when you are low and some will step up.Is there a Breast care nurse you could talk to?
  • tismetisme Member Posts: 133
    to unwell for radiation ??  ive got a cancer care nurse at the RBH i can email and talk to .,  im on antibiotics for  other issues but they don't help with flu the bus trip doesnt help god my back etc. doc tried the ambulance transport but  u have to be ready 3 hours before the appointment.  I have only had one week of radiation so far ( this is week 2 ) I was tired before but now .............................

  • Giovanna_BCNAGiovanna_BCNA Member Posts: 1,848
    Hello @tisme hope that you are on the mend and feeling better after your flu.  It can feel like ages and you can get very tired from radiotherapy.  Try to take one day at time and keep your medical team informed.
  • tismetisme Member Posts: 133
    the trip to and from the RBH is wearing me down ( all of us , ) catch the bus at 8.30 am ( for example ) get there an hour or so later , appointment at noon or later , 5 days a week.  not able to sort out home stuff............ ndis or what ever cant even get in to see a gp and its only week 2

  • MiraMira I live in my computer .... Member Posts: 678
    Hey tisme, that would wear anyone out!  Be kind to yourself.  The NDIS is tough to navigate.  It took me 18 months from my application, through a review, and I finally got accepted 2 weeks ago.  There are advocates who will help you, or if you can find a social worker they should help.  I know a lot of the advocates, social workers etc  around here are run off their feet with it lately, they have a lot of people asking for help.  

    If you can put it off while you aren't well that might be a good idea, it takes strength.

    Hang in there, things will get better if you just keep plugging away.  Can you listen to mediations or podcasts while you're on the bus?  They can take your mind off things. 
  • tismetisme Member Posts: 133
    agnosed, 3 types of arthritis, breast cancer , then I get flu , that leaves me wth sooore eyes that I still have  , the trip to treatment has left me in agony. the house is a mess, ive left lists for daughter but she needs someone there i had one of those back /support cushions that i put on the bus seat to ease the pain , only to discover that Id left it on the taxi so I can kiss it goodbye. i seem to roll from one thing /disaster to another . i was dropping for sleep at 8pm tonight now im wide awake. i just finished week 3 of a 5 week or more treatment session . the days are long , takes all day to get there and back from a 30 minute treatment. maybe if the hospital cancer care doc organises the social worker and psychologist i asked for i might get some help but ive asked before. last night i was in so much pain i was seriously thinking about not going to treatment anymore.
  • kitkatbkitkatb Member Posts: 442
    Hang in there @tisme just stop for a minute and look at what you have achieved.  Wow you have done 3 out of the 5 weeks already so pat yourself on the back for that.  None of this crap is easy and the least of your concerns at the moment is your housework. Just prioritise what you have to do first which is get rid of this bloody disease them in a couple of weeks when the rads are finished just have a look at what is next most important thing to get done.  Small steps and you'll get there. ( you will ) . Also there a lot of organisations out there of women who do sewing for those that need support like the Zonta Pillows which get done. Give them a call and see what they can do or post to you re support cushions.  Be kind to yourself and see how much you have achieved already.  
  • tismetisme Member Posts: 133
     yeah but wen the landlord turns up and sees things , i wonder what he is thinking specially as he just fixed the garage door which hasnt worked proper in months.  also the lease is nearly up .............................

  • kmakmkmakm MelbourneMember Posts: 7,973
    You are so close to the finish line. Put one foot in front of the other and keep going. You will get there. And please don't worry about the housework. An extra two week's mess isn't the end of the world. It can get you down, so just promise yourself a lovely big tidy up in a fortnight. You are doing the best thing for yourself and your daughter by having this treatment. Hang in there, K xox
  • tismetisme Member Posts: 133
    sposed to go to radiation treatment today but I couldnt , daughter was nasty sick , took her to the doctors vomitting and dizziness  good timing , was sposed to have my rescan today too.
    Im really wondering if I should bother at all , maybe this is a sign not to  will be having friday off as well they are having maintenance on thier machines, so that means I can get to the local xray place for ultra sounds Im sposed to have. to hopefully sort out other problems
  • tismetisme Member Posts: 133
    well saw the gp yesterday, had the ultrasound today, radiologist said I had fluid build up under the scars, and i said they wound was a long one and she agreed.  anyway 24 hours n i can see the doc who wont be there by then so if they have any docs over the weekend i will see one of them   over did it yesterday , here there and everywhere paying for it now , painkillers arent helping, waiting to see the physio at the RBH

  • ZoffielZoffiel Regional VictoriaMember Posts: 3,221
    The fluid is not unusual. It's a right pain in the arse (or boob as if maybe) and can appear some time after surgery. Its something we are not always warned about but, for most people, it gets better without too much having to be done. The  physio will probably help. 
    Hang in there.
  • tismetisme Member Posts: 133
    its certainly a pain and a panic , god there is stuff they dont tell us about but they should like creams etc
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