Home Now what? The highs and lows of survivorship



Questions to ask 'Post Surgery' of yourself - to your Specialists - Tick Sheets - Self assessment

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  • iserbrowniserbrown Regional VictoriaMember Posts: 5,203
    @Garnet7

    Scroll back to the first post of this discussion by @arpie.   At the end of that first post are 4 documents that you can download.   The second one is titled Questions to ask post cancer 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,359
    Bumping this one so everyone sees it again .... I have my Year 4 MG/US and check with my Rad Onc next month ..... so will be going thru these docs myself, to see what I want to raise with her.

    I hope everyone is going well in this ad world we live in.

    Take care xx

    Make sure you click the docs AT THE BOTTOM of the post - the ones 'in the post' are just sample pages. xx

    Print them off & tick or write in your concerns .... and take them with you!!  Do 2 copies - one for you & one for the Drs.
  • DellaDella Member Posts: 35
    thank you @arpie.

  • DazzleDazzle PerthMember Posts: 13
    Thanks @arpie
    I have to go alone to my follow up. Fam and friends either sick or  use. These tick sheets will be a great help.  I am trying to decide whether to go public or private for rads. SCG in Perth sounds excellent and is public. The other one is ICON. do you have any knowledge of ICON
    Cheers

  • iserbrowniserbrown Regional VictoriaMember Posts: 5,203
    Cost of radiation is a deciding factor - so before committing to either facility check what your out of pocket expenses will be

    Take care
  • arpiearpie Mid North Coast, NSWMember Posts: 6,359
    @Dazzle - That's a shame you can't have someone with you to support you - do you have a breast care nurse? They may be able to attend with you?  Definitely worth asking ..... and definitely RECORD THE MEETING on your phone, so you can go back over it later on - as it is difficult to remember everything that is said at the time.

    I went public for my Rads and could not fault the Rad Onc or the Rads team - they were all just so good - very caring.  I could not fault their care & treatment.  I had a really bad day one day when 'the wheels fell off' (due my husband having an accident at our accomodation during the Rads) & they got the Social Worker in to talk things thru with me & were a wonderful help ..... so if you are having a bad day any time ...... mention it!  xx

    To be honest - you should save big $$ by going public - you can use those $$ to 'treat yourself' to something really special after your active treatment finishes (I went to Norfolk Island!) with the money you have saved. 

    I had (and still have) the same TOP Rad Onc looking after me - I actually have my 5 year mammogram & ultrasound in a few weeks - so I will be seeing her again probably in Nov .... I've virtually had a 'call back' EVERY BLOODY YEAR so far .... so am sort of expecting it again this year too!!   ggrrrr

    There is also the Otis Group too (who arrange free holidays to those who've finished active treatment) ... with Covid, only 'local state destinations' are available (I believe) - but check out the site & see the house at Guilderton that is available ....
    https://www.otisfoundation.org.au/directory/65/moore-time

    take care
  • DazzleDazzle PerthMember Posts: 13
    Thanks @Arpie
    Yes, I am leaning towards public. Closer to my daughter who can come with me sometimes. I will definitely check out that accommodation. Moore River and Guilderton a great place to recuperate. Its so good being able to talk to others on this side.
    Cheers
  • DazzleDazzle PerthMember Posts: 13
    Sorry others on this site!
  • CoraCora Member Posts: 104
    arpie said:
    I know that after my own surgery, I didn't always quite know what questions to ask of my surgeon and 'the team' that we all see regularly for the first 5 years following our treatment - so I set about looking for 'tick sheets' that would help me, as these appointments approached!

    I came across some really interesting files.   They are all 'multi paged' so I've put a 'sample page' from each document to give you an idea of what is in it.

    The first booklet is available at most Cancer Clinics and was put out by the Cancer Council - 'Living Well After Cancer'.   It is a good one to give to friends & relatives to read as well - to give them an idea of the longterm affects of cancer even after successful treatment - as they often think that once you've had your surgery, chemo, rads & tabs - that you are now 'well'.  We all know that that is NOT necessarily the case!  :(   It really is a lifetime sentence.

    This booklet covers a lot of areas that concern us all - and may be able to help answer questions in many situations that we face.
    (sample page)


    The 2nd one is:  "Questions to ask 'post cancer' " - a 'tick sheet' - these questions could be spread across the whole team - your surgeon, Onc and Rad Onc as well as GP.  Tick the ones that are relevant to you in the lead up to your individual appointments.
    (sample page)


    The next is "Self Care Specific Symptoms" - this sheet could also be for any of your team - with the 2nd section relating more to mental health issues that may impact you.
    (sample sheet)


    And finally - a Survivorship Care Plan - virtually a ''Self Assessment Yearly Checkup'' sheet .... which has more specific symptoms that you may be concerned about and also has pages for noting yearly checkups required re Dexa, Mammograms, Colonoscopy, MRI etc - almost a 'diary' to keep re future appointments.
    (sample Pages)


    Write down the dates you've had them, and when the next one is.  Add any other exams that are not already there


    You can use any or all of these documents to track how you feel you are progressing - date them & further down the track, you can compare them to see how you are travelling.

    Take care & I hope these sheets help in tracking your health - both mental and physical.  xxx







    This is really helpful, thank you for sharing
  • arpiearpie Mid North Coast, NSWMember Posts: 6,359
    Terrific @Dazzle & @Cora ......

    Going public so your daughter can attend with you would be wonderful, Dazzle!   Plus you have more $ in your pocket.  How far away will you be from the actual Medical Facility?  Keep in mind that if you have to travel (a set number a Kms a week) you are able to claim back on the WA PATS scheme (Patient Accommodation & Travel Scheme) for those who live rural or regional ..... if you have family or friends who have to travel big distances to appointments/treatments, make sure THEY are aware of that scheme as well. xx. There are forms to fill in by the GP/Specialists ...

    Anything that helps appointments, specially early in the diagnosis/treatment ...... maybe get a folder to keep these tick sheets in (print them off) - as after your active treatment has finished, you'll be seeing one of your team, usually once a year after your first year, every 3-4 months, so you see 'someone' on a regular basis - your surgeon (usually on the anniversary date of your surgery,) your Onc (in charge of your Hormone Suppression and/or chemo) and your Rad Onc (if you have radiation - usually after you've had your annual mammogram/ultrasound.)

    Dazzle - re your correction of 'side' to 'site' .... when you look at your post, you'll see a 'wheel' above the date .... if you click on that - you have 24hrs from the time you posted it, to make any corrections/additions ..... If you find something you want to change AFTER the 24hrs, just send a Personal Message to one of the Moderators & they should be able to make the alteration xx 

    Both of you - don't forget to add your 'general location' to your profile ..... it will help with other members engaging with you, if they are local & have specific local knowledge that may help you. ;)   Just click on your name, then on the little person next to the 'avatar' .... and click 'edit profile'.


    take care xx
  • CoraCora Member Posts: 104
    Cora said: Hello again arpie, I have tried to search for this booklet on the internet. Do you by any chance have a link I can maybe reach it that way. I really would like this check list. It all makes sense. Thanking you again. Cora
    arpie said:
    I know that after my own surgery, I didn't always quite know what questions to ask of my surgeon and 'the team' that we all see regularly for the first 5 years following our treatment - so I set about looking for 'tick sheets' that would help me, as these appointments approached!

    I came across some really interesting files.   They are all 'multi paged' so I've put a 'sample page' from each document to give you an idea of what is in it.

    The first booklet is available at most Cancer Clinics and was put out by the Cancer Council - 'Living Well After Cancer'.   It is a good one to give to friends & relatives to read as well - to give them an idea of the longterm affects of cancer even after successful treatment - as they often think that once you've had your surgery, chemo, rads & tabs - that you are now 'well'.  We all know that that is NOT necessarily the case!  :(   It really is a lifetime sentence.

    This booklet covers a lot of areas that concern us all - and may be able to help answer questions in many situations that we face.
    (sample page)


    The 2nd one is:  "Questions to ask 'post cancer' " - a 'tick sheet' - these questions could be spread across the whole team - your surgeon, Onc and Rad Onc as well as GP.  Tick the ones that are relevant to you in the lead up to your individual appointments.
    (sample page)


    The next is "Self Care Specific Symptoms" - this sheet could also be for any of your team - with the 2nd section relating more to mental health issues that may impact you.
    (sample sheet)


    And finally - a Survivorship Care Plan - virtually a ''Self Assessment Yearly Checkup'' sheet .... which has more specific symptoms that you may be concerned about and also has pages for noting yearly checkups required re Dexa, Mammograms, Colonoscopy, MRI etc - almost a 'diary' to keep re future appointments.
    (sample Pages)


    Write down the dates you've had them, and when the next one is.  Add any other exams that are not already there


    You can use any or all of these documents to track how you feel you are progressing - date them & further down the track, you can compare them to see how you are travelling.

    Take care & I hope these sheets help in tracking your health - both mental and physical.  xxx







    This is really helpful, thank you for sharing

  • arpiearpie Mid North Coast, NSWMember Posts: 6,359
    edited September 28
    Hi @Cora -

    Were you after the Living Well After Cancer booklet from the Cancer Council in particular? Or the 'tick sheets'?


    All the documents shown  in your post above can be downloaded on the first post of Page 1 .... including the tick sheets.

    Click on the link at the bottom of the first post on the first page ...... (don't click 'here' as this is just a photo of the links ....)



    take care xx

    There are specific Breast Cancer booklets put out by the Cancer Council, as well as others ....
    All their booklets are available as PDFs here for free:
    https://www.cancercouncil.com.au/publications/understanding-cancer-book/

    All the BCNA publications are available here:
    https://www.bcna.org.au/resources/booklets-and-fact-sheets/


  • CoraCora Member Posts: 104
    Cora said:
    Cora said: Hello again arpie, I have tried to search for this booklet on the internet. Do you by any chance have a link I can maybe reach it that way. I really would like this check list. It all makes sense. Thanking you again. Cora
    arpie said:
    I know that after my own surgery, I didn't always quite know what questions to ask of my surgeon and 'the team' that we all see regularly for the first 5 years following our treatment - so I set about looking for 'tick sheets' that would help me, as these appointments approached!

    I came across some really interesting files.   They are all 'multi paged' so I've put a 'sample page' from each document to give you an idea of what is in it.

    The first booklet is available at most Cancer Clinics and was put out by the Cancer Council - 'Living Well After Cancer'.   It is a good one to give to friends & relatives to read as well - to give them an idea of the longterm affects of cancer even after successful treatment - as they often think that once you've had your surgery, chemo, rads & tabs - that you are now 'well'.  We all know that that is NOT necessarily the case!  :(   It really is a lifetime sentence.

    This booklet covers a lot of areas that concern us all - and may be able to help answer questions in many situations that we face.
    (sample page)


    The 2nd one is:  "Questions to ask 'post cancer' " - a 'tick sheet' - these questions could be spread across the whole team - your surgeon, Onc and Rad Onc as well as GP.  Tick the ones that are relevant to you in the lead up to your individual appointments.
    (sample page)


    The next is "Self Care Specific Symptoms" - this sheet could also be for any of your team - with the 2nd section relating more to mental health issues that may impact you.
    (sample sheet)


    And finally - a Survivorship Care Plan - virtually a ''Self Assessment Yearly Checkup'' sheet .... which has more specific symptoms that you may be concerned about and also has pages for noting yearly checkups required re Dexa, Mammograms, Colonoscopy, MRI etc - almost a 'diary' to keep re future appointments.
    (sample Pages)


    Write down the dates you've had them, and when the next one is.  Add any other exams that are not already there


    You can use any or all of these documents to track how you feel you are progressing - date them & further down the track, you can compare them to see how you are travelling.

    Take care & I hope these sheets help in tracking your health - both mental and physical.  xxx







    This is really helpful, thank you for sharing

    Thankyou arpie I've decided to go home & cancel all appointments. I am very despondent. Big medicine mix up in the hospital. I'm sick of this 4 operations in 4 months. It's worn me down. 😞 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,359
    edited October 2
    @Cora - so sorry there was a meds mixup .... are you OK?

    Please ring the helpline tomorrow (number at the top of the page).

    Chatting with someone who is familiar with what we go thru will help with your worries - and hopefully put you on the path to recovery & feeling better.

    Rest up, don't overdo things today - you are still very much in recovery mode & bits may still be hurting ..... do you have family & friends who you can chat with today?

    If you feel REALLY CROOK at any time - call 000 xx

  • CoraCora Member Posts: 104
    Hello arpie, Ive made a formal complaint to both the hospital and my surgeon.  I intend to take this matter further as I was treated as an imbosile in hospital.  The fact that a single male nurse leant over my body just to check my wound, with a strong pungent smell of colonge in the middle of the night made me sick.  This is just one instance of the shit that took place in this supposedly reputable accredited private hospital. Im ready for a fight. But I still have this stupid drainage tube, which I have to have removed, apparently by my surgeon, who I have sacked. So im thinking of taking it out myself.  Sorry I just couldn't get to the tick sheet you mentioned.  Ive tried a number of times. Probably because my brain is in a fog. 
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