Forum Discussion
Stressed, exhausted physically and financially
Morning Ladies,
My apologies in advance for the long read...
I am awake early (every morning, if I have slept much at all), I have another infection it seems. I finished antibiotics not a week ago (14 days worth). I have had enough. Post-op Seroma drained x 3 this will be infection number 2, started day 1 of 5 weeks of radiotherapy yesterday.
I know having the seroma drained is an infection risk, but when my breast was twice the size of the other one, an it was reducing my ROM in that arm and extremely painful, I had little choice.
Feeling just miserable. While on the antibiotics, it was the first time I had-for the most part-been pain free since my surgery date on the 5th of November. I am truly exhausted. Pain is back with a force in the night and am red and hot on my breast. Combine that with the hot flushes I have had since having to stop HRT at diagnosis and we have one hot bed!! (Not in the sense I’d like it to be that’s for sure!).
So I guess back to the Doctors where, as we have moved into another year and I no longer have my safety net threshold, I will have to pay for all of my services again.
I went private as we knew no better, the option of going public was not discussed and I have to say I was certainly naive about paying the ‘gaps’ that going private would mean.
Literally it has cost us a decent European holiday. Or at most it has cost me my ability to take some time off work. The approximately 8k (I’m too scared to count), so far we have spent could have allowed me some time off work. I have watched our bank balance decrease while our credit card has increased. Instead I have struggled to work because once I used up all of my sick leave and am now owe annual leave, I have no choice but to continue working.
Despite having an an infection and then radiation after work today(who knows how I will manage to get to the doc), I have to go to work today.
I wish I had known that private health cover does not mean that you are in fact covered. Or even that EVERY test, treatment that you have done has major out of pocket costs. The bills, including those I was never informed there would be a gap, keep rolling in. Yesterday I received a bill for the gap for my lymphoscintigraphy that I had on surgery day (5th November), another $198, and one from S & N $170 for the testing of the drained seroma fluid. A crazy $368 in one day-I can’t even pay for that with my days work!
It it should be compulsory for providers to disclose that there will be a gap and what that gap will be at the time of service.
What do I do now? I honestly can’t afford to keep going like this. Does anyone know if I can now be referred into the public system? And if that is not an option, would it happen if I start to refuse treatment based on the fact that I just can no longer afford it??
Its my 50th Birthday in 6 weeks and instead of celebrating in Bali as was the plan, I’m not even sure I will feel well enough to do anything. Definitely don’t feel like I have much to celebrate right at this minute. We have had to cancel the Bali trip as it is said to be just too risky for me and I likely wouldn’t be covered for anything that may happen anyway. We have travel insurance, but this will still be at a cost to us.
I feel like my life has changed in so many ways in the past 2 months, I can’t even begin to list them. I’ve had enough, I am exhausted yet there is still so much to go through. On top of that, I have this guilt that my treatment and cancer is not as bad as some, and that I should be grateful.
As we have all said many a time since this shitfest started-I WANT MY OLD LIFE BACK!!
Thanks in anticipation,
Michelle XOX
My apologies in advance for the long read...
I am awake early (every morning, if I have slept much at all), I have another infection it seems. I finished antibiotics not a week ago (14 days worth). I have had enough. Post-op Seroma drained x 3 this will be infection number 2, started day 1 of 5 weeks of radiotherapy yesterday.
I know having the seroma drained is an infection risk, but when my breast was twice the size of the other one, an it was reducing my ROM in that arm and extremely painful, I had little choice.
Feeling just miserable. While on the antibiotics, it was the first time I had-for the most part-been pain free since my surgery date on the 5th of November. I am truly exhausted. Pain is back with a force in the night and am red and hot on my breast. Combine that with the hot flushes I have had since having to stop HRT at diagnosis and we have one hot bed!! (Not in the sense I’d like it to be that’s for sure!).
So I guess back to the Doctors where, as we have moved into another year and I no longer have my safety net threshold, I will have to pay for all of my services again.
I went private as we knew no better, the option of going public was not discussed and I have to say I was certainly naive about paying the ‘gaps’ that going private would mean.
Literally it has cost us a decent European holiday. Or at most it has cost me my ability to take some time off work. The approximately 8k (I’m too scared to count), so far we have spent could have allowed me some time off work. I have watched our bank balance decrease while our credit card has increased. Instead I have struggled to work because once I used up all of my sick leave and am now owe annual leave, I have no choice but to continue working.
Despite having an an infection and then radiation after work today(who knows how I will manage to get to the doc), I have to go to work today.
I wish I had known that private health cover does not mean that you are in fact covered. Or even that EVERY test, treatment that you have done has major out of pocket costs. The bills, including those I was never informed there would be a gap, keep rolling in. Yesterday I received a bill for the gap for my lymphoscintigraphy that I had on surgery day (5th November), another $198, and one from S & N $170 for the testing of the drained seroma fluid. A crazy $368 in one day-I can’t even pay for that with my days work!
It it should be compulsory for providers to disclose that there will be a gap and what that gap will be at the time of service.
What do I do now? I honestly can’t afford to keep going like this. Does anyone know if I can now be referred into the public system? And if that is not an option, would it happen if I start to refuse treatment based on the fact that I just can no longer afford it??
Its my 50th Birthday in 6 weeks and instead of celebrating in Bali as was the plan, I’m not even sure I will feel well enough to do anything. Definitely don’t feel like I have much to celebrate right at this minute. We have had to cancel the Bali trip as it is said to be just too risky for me and I likely wouldn’t be covered for anything that may happen anyway. We have travel insurance, but this will still be at a cost to us.
I feel like my life has changed in so many ways in the past 2 months, I can’t even begin to list them. I’ve had enough, I am exhausted yet there is still so much to go through. On top of that, I have this guilt that my treatment and cancer is not as bad as some, and that I should be grateful.
As we have all said many a time since this shitfest started-I WANT MY OLD LIFE BACK!!
Thanks in anticipation,
Michelle XOX
11 Replies
- @Mjheke - It's seven years since I was diagnosed and I continue to have Hercepton infusions, scans and ultra sounds etc. My very sensitive and caring GP told me about the differences between Public and Private and I chose to go Public. Thanks to him that I did! Over a seven year period my only cost has been parking fees. As others have said you can elect to go completely Public or share Public and Private. BCNA will provide you with all the information you need.
- @Mjheke Glad you have a plan that you're comfortable with now. The frustration about appointment times is maddening. I don't work so would have been happy with any times during the day, but I emphasised that because I don't have good night vision I wanted to be home by dark. Two days they booked me for dusk. The other disappointment was one day when they were only advising people the day before that there was scheduled maintenance of the equipment the following day. One would have thought that if it was scheduled, they could have given notice, so one could plan in advance to do something nice that day instead of going to rads. Other than that, my rads people were lovely.
I hope it goes well for you from now on. - @Mjheke oh I’m so glad you got the costs sorted out and that the rad nurses are closely monitoring
I get you on the appointments so frustrating when they don’t get it re appointments I’m only work8ng part time atm but trying to get it through people’s heads that I want afternoon appointments after 3 i need to go to work 8n the morning when I’m at my best so I can do my best job in my l8mited hours and drs just have to be later. I often just say no that doesn’t work - Hi all,
Thank you so much for all of your support! My apologies for the late reply.....It has been a challenging week. I commenced radiotherapy on Wednesday and did have a discussion about cost. They were very amenable to cutting costs and I have now a very small gap to pay. I will stay with them as it is close to home and on the way home from work.
It really is all such an inconvenience this cancer thing. I have had to have so much time off work, I am hoping to work through radiotherapy. I'll see how I go. I got frustrated the other day when both my surgeon and the radiotherapy bookings wanted me to have appointments during work hours. I know sometimes it is unavoidable for them, however I reminded them that we all have lives that we need to continue with during this time. One of the appointments was in the middle of the day! Which meant I would have neither been able to work a decent few hours either side of the appointment due to travel time etc. I think it is good for those providing services to have a reminder of this every now and then....
@Flaneuse, @Zoffiel , @Brenda5, @arpie I am seeing my surgeon on the 14th of January, so will definitely be asking for a transfer to the public system.
@Sarnicad, Thanks for letting me know re the immediate redness from Radiotherapy-I think I maybe had a lingering redness from a bad infection the few weeks prior, I don't have a fever so they are holding off on antibiotics and the Rad onc nurses have taken photos daily to see how it progresses. Definitely red and sore and worse since I started rads. No worse over the weekend though,so maybe just from the radiation. I am slathering in MOOGOO at the moment.
Michelle xox - Bugger Bugger Bugger! You've been thru the mill already, @Mjheke - I hope that infection gets under control ..... do the Rads people know about it? It may affect your treatment.
Definitely go public for your Radiation if you can swing it - Mine was public & was great. ......
Thinking of you & sending big hugs xxx - Hello@mjheke I am very sorry to hear you are feeling unwell and hope you can get to see the doctor asap to follow-up and see how you are responding to antibiotics. As the others have advised you can move across private and public health systems for treatment and it is important to talk to your health care team (doctors or BCN) about how this can be facilitated to reduce your out-of-pocket expenses which is a huge stressor for many people. Below is the link to the BCNA practical and financial fact sheet that you may also find helpful
https://www.bcna.org.au/resources/booklets-and-fact-sheets/#financial
Take care of you and as @Zoffiel stated please don't hesitate to ring the BCNA Helpline on Monday when the cancer nurses are back in the office for further support. - I started off privately and like you was amazed at the pop expenses. I think we probably hit close enough to $10,000. Due to complications I was referred to the public system, specifically a Peter Mac in Melb. Inititially I was a little concerned, but I cannot speak highly enough of the treatment I have received. One night after an appointment the doctor rang at 8.30 at night to let me know she had organised some further tests for the next morning. After walking out of my initial appointments and always paying an exhorbitant bill with a large oop gap, it is lovely to leave my current appointments without any hand over of monies. I have been really reassured of the quality of our private system. Currently midway through my rad treatment - appointments have always been on time, staff amazing and open to any specific needs I have regarding times. Will be interesting to see if the same tests are readily available once treatment finished or if there may be longer waits. No regrets about going privately initially as everything happened pretty quickly, but it was a ‘wake up call’ re the oop expenses.
i hope things pick up for you. I was first diagnosed mid Oct and those first 6 weeks were pretty horrible. I feel I am getting on top of things now, but like others say, I still have my moments. Try and just take one day at a time (sometimes easier said than done) - things will get better. 🌹🌹 - @Mjheke Ask for an immediate transfer to a public hospital in Brisbane. You need to do this for your wallet, your mental and physical health. Take a deep breath and start the process today. (I rarely advise people so firmly but you definitely need to do this.) As someone has already suggested, you could even just go to the public hospital and say you didn't realise how much you would have to pay by going private, and it's sent you broke and you can't cope any more.
You should be able to get your radiation plan sent to the public hospital, I would think - though I'm not absolutely sure about that. You may need to have planning again. But it would be worth it for the sake of your anxiety.
I was public for EVERYTHING and I've not paid a cent - except for parking. I'm an age pensioner but I'm pretty sure it's the same for anyone without private health insurance. The radiation people in the public hospital I went to are magnificent. And the oncologists. And the pathologists. And the medical imaging people. And the pharmacists.
Fran x - Tell your radiation oncologist that you can’t afford the out of pockets and then see if they will negotiate. My oop for private rads was $3000 which we paid weekly over 8 weeks but when I was stressing over it he said if we couldn’t afford it we could negotiate. If they won’t, then go public.
Check your pain meds with your gp- midway through radiation when my breast was as red as a traffic light an rwice its already massive size I was having nurofen and panadol as soon as I could and using ice packs to help bring the heat out of it. The radiation will make your breast red, hot and sore. I had the hot thing right from day one so check that this isn’t what is happening does your rads clinic have a nurse if yes see them today when you go in don’t rely on the radiation therapists to notice a difference, they will but unless you say something everyone will assume you are coping - Good news is yes, you can go public in your treatment. Don't let them bully you that they can't. As to work, don't think about tomorrow, just get through today. Hour by hour or minute by minute if you have to. Just focus on getting through that bit. Would cold packs help with the pain and swelling a bit? You shouldn't have to live in pain. Get up that GP doctor for some more pain meds or if they interfere with you working, Panadol can be taken more often than recommended dose rate. Consult your Doctor. If you can't get to one, try the emergency dept at the public hospital after work. When I had seroma during xmas and new year a few years ago, I rocked up to the emergency dept a couple of times for draining as my GP was away.
I have never paid for any scans, tests, or surgery as I went public with everything.
There is nothing wrong with a nice sedate 50th birthday but pencil that trip in as a goal to achieve after treatment and recovery. You need something to work toward. <3
