A possible inclusion for the My Journey kit
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~Millie~
Member Posts: 61 ✭
I think the My Journey kit is great, and it was a fantastic thing for my hubby to read as well. Helped him to get answers to questions he didn't know he had. But, I was thinking, maybe it needs a bingo card for some light relief!! Instead of numbers, it could have:
- That's unusual
- Everybody's different
- There's no data on that
- Only a little prick
- Can't get blood from this vein
- Maybe you need a mental health plan
- Your referrals about to expire
- You need to get a new referral
- This machine isn't working
- Can I have a look?
- The Doctor is running late
It could also have a time frame. Who could complete it the shortest number of days?
xx
- That's unusual
- Everybody's different
- There's no data on that
- Only a little prick
- Can't get blood from this vein
- Maybe you need a mental health plan
- Your referrals about to expire
- You need to get a new referral
- This machine isn't working
- Can I have a look?
- The Doctor is running late
It could also have a time frame. Who could complete it the shortest number of days?
xx
11
Comments
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@MillieMoo
I can add another.
We forgot to send your appointment letter.
True this happened to me this week.3 -
Very GOOD, @MillieMoo
Oh Dear, That was a shocker, @Annie C - I would have been spewing after waiting for nearly 6 months!! I hope you somehow manage to get seen asap (difficult tho I know!)
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@arpie
Not yet, however I am patient. I am going to bide my time. On my next visit to the oncology clinic in Perth I will ask for a referral to the respiratory clinic at the same hospital. I then won't have to bother with the physicians who "visit".
Given that the next physician visit is late January 2019, what's another 4 months. Gives me time to organise both clinic appointments and the best bit -all at the same hospital.
I doubt if anything serious will happen in the meantime. I am too mean to die. Not going to give the townsfolk the satisfaction.3 -
Grrrr .... Be vocal @Annie C ... VERY vocal!!
It is not good enough really .... It is just more shit that rural patients have to put up with, being hours away from ‘normal’ services!
It annoys me a tad when I read that others have their ultrasounds, mammograms and biopsies within days of detection, (sometimes on the same day!) yet rural patients have to wait 6-8 weeks +++ for the same services! It was just over 2 months for me from detection to surgery. It really mucks with your mind!
6 months wait for a missed appointment and now another 2-3 months wait due to incompetence, really isn’t acceptable.
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I’ll add:
”Fingers crossed” when waiting for the most important results of your life.
What does that mean when an intelligent, educated professional surgeon says that to you?? Am I reading too much into it?
1 -
@Wonk I think they’re probably trying to say something comforting, but it doesn’t necessarily come across that way. I got told after radiation I should be good for around 10 years. I’m 42! I was hoping to get much further than 52. But, on the flip side, I give zero thoughts to my minuscule superannuation balance now 😆.
@Annie C that’s terrible. For all the people involved in our care, there is still a fair bit that falls through the gaps. I popped myself off to my GP this week, no particular problem, just a check up and chat. She was shocked that nobody had done any bloods, and that if it wasn’t for my self motivated appointment, no one would have discovered my blood pressure has gone up dramatically.
Xx0 -
@Millie I had a similar 10 years comment too, very early in the piece. It was also said in a light hearted way but it was shocking to hear. As in I felt my body react with shock as I realised this was the timeframe that I was living in now. Not the best joke my lovely BS ever made...
Worst of all, hands down and by a country mile, was my PS who told me, twice, when discussing reconstruction, that I'd "never look good naked". This was two weeks after I'd been diagnosed. In whose reality did he think that was a good or helpful thing to say to a newly diagnosed breast cancer patient??? FFS!!!
I might add that my husband, god love him, begs to disagree!0 -
@kmakm I feel your pain. These types of comments can cause a lot of mental trauma and sadness. Especially when you’re still trying to process that you’re now a cancer patient. Like, how the hell have I ended up here? Apparently my odds of BC were 0.7%, so now I pretty much roll my eyes when anyone gives me outcome numbers. I’m obviously perfect capable of scoring the crappy end of the stats.
Not sure if it was a comment, or something I read, but apparently apart from removing the tumour, the acceptable outcome from surgery is that you look OK with clothes on 🙀😕. It’s a lot to process that’s for sure.
I’m lucky I have an awesome husband too. Bless them.
xx2 -
My BS clearly works out and looks after himself. My PS is a rather thin and weedy specimen...1
