Survivorship questions and resources

Zoffiel

I'm helping my hospital put together an application for the Vic Stage II survivorship grants. 
I'm sure many of you who are based in Victoria have come across or participated in the Stage I programs and I am wondering if anyone has any thoughts about things they would have liked to see included which weren't covered.
The criteria is quite clear that exercise programs are a no and that has been done anyway.
To give you an example, I would like to see professional HR advice given to survivors who are returning to an existing employer about what to tell their boss/company to expect post treatment. Even more important is help preparing for interviews when you know you have to fess up to a potential employer that you are going to have ongoing medical commitments.
I'm not asking for details, but I would love to hear if there is something that you wish was available or mentioned that wasn't.
Think outside the box ladies, and feel free to message me if you want to go into more detail. Marg

melclarity

Hi Marg, I think this is a great idea, whilst going through treatment you can't think straight as to what you need or when. Post treatment putting the pieces back together is tough! I did the Enhance Program through the Epworth Hospital in Victoria about 4 months post chemo. Enhance is delivered by an extensive clinical team including specialist rehabilitation physician, breast care nurse, exercise physiologist, psychologist, dietitian, social worker, occupational therapist and physiotherapist. It was invaluable and ran for about 6 weeks. The Occupational Therapist was excellent in helping with return to work. 

I think too something that was difficult finding advice/support with was entitlements and assistance with sourcing individual needs. It took me a year from diagnosis to find one of my Superannuations had an Income Protection component built in. Worked out well as it was a 90 day waiting period and so I got backdated, its been invaluable! 

Definitely need more resources to help getting back on your feet. The other thing Ive got through my insurance is an Exercise Physiologist which is following on nicely from rehab. This has been the best thing in my recovery and something thats not promoted, they just say exercise, but thats not correct at all. Im so glad Ive done it the right way, I couldnt have done it without a Professional. Im on the mend working muscles I didnt know I had LOL. Melinda

Zoffiel

Thanks Melinda. I'm plotting a program targeting people more than 6 months out of their treatment.
 I know from past experience that when that umbilical cord is cut between health services and you as a patient the whole landscape changes.
Post here indicate that waiting for test results even years down the track can be incredibly stressful. Is that a time when a consult with a trained clinical nurse attached to your GP (rather than a hospital) could be useful? keep things in house and ensure you get a bit of one on one to prepare for your appointment so both you and your physician getbest value out of limited time. Once again I am aware that some people manage well and turn up for appointments with a list of questions but many folk get flustered and walk out without addressing some issue that has been plaguing them. Some GPs have schedules that allow for extended appointments, many don't.
Asking for funding to duplicate existing programs rarely pays off and this stream is very focussed on sustainability and capacity building. I've got a few ideas but it always pays to 'consult the stakeholders' They have the inside view. There are no silly ideas and sometimes off the cuff suggestions provide the missing piece of the jigsaw.

Zoffiel

The bit about super is a good idea. I missed out because I was made redundant three weeks before diagnosis. Grrr. Maybe a voucher to see a financial advisor could be helpful. These services are sort of available on line and reasonably easy to access in the city. If you are not tech savvy or live out here in the sticks it is a different story.

melclarity

A trained Clinical Nurse could be useful yes. I was 6 months out by the time the course got off the ground so it was great timing. Financial advisor would be great, I worked full time but am also a single parent and Centrelink were a NIGHTMARE!!!! and they deemed I had to spend at least $7000 of my own money before they'd give me sickness allowance! Disgusting!!! worked all my life and couldnt work because I had CANCER!!!! 

socoda

Hi Zoffiel, I'm not in Victoria so I don't know whether it is the same there but I do know that the information and any type of help in relation to cording is sadly lacking in my personal experience. I also have a friend who also received little to no information and I think with sentinel node biopsy becoming more prevalent this is an area where even further information could be provided. Thanks . Xx Cath

Zoffiel

Thanks Cath. Cording is an issue that I have raised with our breast care nurses. It's such an unpredictable condition and no-one seems to be able to establish what causes it. 10 years ago out of sheer desperation I had to beg one of the physios to try friction massage because it was driving me crazy 3 months after my op. That seemed to help but we both cried. This time around I couldn't get anyone to do anything that violent, it's all about stroking lymphatic pathways now (maybe no-one likes the crying)

In your experience how long post treatment does the condition persist? I'm looking at requirements for people once they have gone through the first part of their treatment and are looking to rejoin the kingdom of the well rather than plodding miserably through the land of the poorly.

socoda

Thanks Marg, I still have cording (two very minor cords) and am 7 months after surgery. I am lucky enough to have the full range of movement in my arm and when I feel it starting to tighten I have a little massage to try and loosen it up. My Lymphoedema nurse tried breaking it for me at the 4 month mark but it didn't work. Prior to that I had not been told about cording or how to deal with it and it was through this network and looking up you tube that I found information.I just tend to think I am incredibly lucky with it and I know that others are not so lucky.  

melclarity

I just wanted to say I developed cording from Chemo not from surgery, whilst on FEC. I have full use of my arm now but it looks unsightly at the irrepairable damaged vein.  They offered physiotherapy, but honestly it wasnt necessary, I continued stretching it daily and its come completely normal. 

iserbrown

Hi!  Education based around sentinel node removal, after effects - my physio tells me that it can take up to two years for everything to settle and the burning, wet feeling under armpit, pressure on where the drain entered the breast, pec muscle et cetera  We are told at the time that it is necessary for removal, and who would argue, however, we are left to our own devices to come to understand the discomfort that is associated with same can be annoying and debilitating, depending on frame of mind and what stage of active treatment you are at.  The physio tells me that the lymphatic system is trying to make new tubes to run around the body as it's normal route has been interrupted by the removal of the sentinel node and the guards.