Hi
I haven’t stopped working at all just had 4 weeks off in October for the infarct and the Xmas break
I only do 3 days a week but it’s in an operating theatre and on my feet the whole time
I don’t have a support team as such just a haematologist that I seen in November for initial consultation and see again at the end of this month for review
I’m in Australia and we don’t seem to have the support you have over there
I wrote to the cancer council here to get some answers and they just sent a link to read I was a bit emotional at that time and was just hoping it to be a bit more personal
Nothing here I can find about work or financial support
I hope I’m wrong and I can find something one day but it seems to sink or swim unless you have a traditional cancer
Regards
Sharon
Oh @Shaz1 it must be so, so difficult for you.
Please do keep posting how you are getting on.
Be very kind to yourself
I keep on with you guys as it’s a form of comfort
I have sent the cancer council here another Email asking if they have any support for work or financial hopefully they will write me back something and not just a link to click on and if no happiness there I will try and call them to see if I can speak to anybody directly about the situations Although on the site it says we can direct you to a Solicitor or someone to speak about accessing your super etc. But all in all I feel I’m on top of things at the moment except the not feeling quite my normal self and the fatigue which is horrible cause I’m used to being so active and on the go 24 7.
Thanks for your support. I appreciate it.
Have you tried the Myeloproliferative neoplasms (MPN) Alliance Australia who may be able to help as to what may be available to you.
https://www.mpnallianceaustralia.org.au/
Myeloproliferative neoplasms (MPN) voice although UK based runs a Myeloproliferative neoplasms (MPN) specific forum on Health Unlocked which has a lot of users from overseas who may be able to help with what is available to you in Australia.
Thanks for that I’m finding it a helpful read and will look at groups and research
Can’t find much on work related help and rights though but I’ll keep onto the searching side of things and some one my have an answer
Thanks so much for sharing that Australian blood cancer organisation @Jonpd. It links to The Leukaemia Foundation and this interesting research about a new iron regulation treatment for Myeloproliferative neoplasms (MPN): Iron link offers new treatment hope for incurable blood cancer | WEHI
Would this Australian blood cancer support be useful for you @Shaz1: How we can help - Leukaemia Foundation
Hi, yes, I’ve been doing a bit of reading and it’s definitely good to have some information to go on
Hello @Shaz1
I’ve been having a read through this thread, and have tried to find outher sources of possible support for you, but I think you’ve already been signposted by the others to most of the larger organisations that could help. I am not sure if you use Facebook at all, or if you’re already a member, but there is a page I came across: MPNAustralia/FBgroup that you may wish to join, and ask others their experiences around work and rights.
I had another thought, that it might be helpful to record your symptoms (if you don’t already), this could be used in the future as ‘evidence’ if you’re trying to have work adjustments etc. It’s also helpful for your haematology team to be able to see how you’re managing day to day or week to week. This link to Myeloproliferative neoplasms (MPN) voice gives more information on something called the ‘Myeloproliferative neoplasms (MPN)10’ keepingtrackofsymptoms/MPN and also they have this link MPN10/novartisform to the actual symptom form that you can print off, or fill in online or there is other forms, for example: MPNscorecard/australia.
If I do come across anything else I’ll let you know.
Take care, Heidi.