I'm due to have my Auto on the 23rd, i.e. next week and looking at it realistically, perhaps pessimistically, as far as I can tell I am more likely to die as a result of the transplant (5-10% mortality) than I am to still be alive in ten years time. No matter how I look at it the people with ten years or longer survival and near normal lives are the minority with the majority of people with multiple myeloma suffering severe disability and dramatically shortened lives. The disintegration of my T4 vertebra has already had a severe impact on my life and due to the amount of damage (almost no bone left) can not be repaired. if further deterioration occurs they may be able to use rods and screws to prevent total collapse however this procedure involves risks of paraplegia or worse that the surgeons are not prepared to take. Without the surgery I will not be able to return to work or lead anything like a normal life.
Interestingly the financial institutions I am dealing with seem quite dismissive of my medical condition. In my never ceasing, extremely stressful, arguments with our bank, superannuation and insurance companies I tell them there is a 5-10% chance I will be dead in a couple of weeks, 50% chance in 5 years and a 90% or worse chance in ten years. I will not live until retirement age so why can't I access my retirement savings and insurances now to safe guard my families future and why, when there is so much insurance should I die or be unable to return to work is the bank so determined to force us to sell our house now as I am about to be hospitalised for the transplant?
The way I look at it is I have incurable cancer and a fractured spine, I will never work again, why can't I access my disability insurance now? These idiots seem to think I am going to get better and go back to work as if nothing happened once I have the transplant. I have been off chemo for almost two months but thanks to the spinal fracture I find getting the kids ready for school and driving them there writes me off for hours and sometimes I am not even able to handle the drive in to pick them up at the end of the day. I can manage alone with the children for an hour or two until my wife gets home from work but even then sometimes I just need to lay down (propped up as I can't lie flat) and let the kids fend for themselves. On bad days I can not even get up in the morning and my wife has to do everything on her own.
Last year I was completing the navy mechanical and electronic courses on the actual ships concerned as part of my new role with the contractor maintaining these vessels for the navy, now I struggle to walk around the local shopping centre. Several months ago I was seriously contemplating rejoining the Army Reserve or perhaps opting for the Navy Reserve instead, based on how well I did on the training and how enjoyable I found it, now taking the dog for a walk around the block is beyond my abilities. I thought I was going to see my kids grow up, thought I was going to travel, spend many years with my wife doing all the things we dreamed of, all the things we did without, sacrificed and planned for. Now instead we are in severe financial stress, have fallen between all the gaps and can't even access our own retirement savings. At least most of my medical treatment has been free, without that we would be even worse off as we would not have been able to afford any of it thanks to the insurance issues we have had.
Oh the joys of living in modern Australia.
Forums
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Not a good day, week, month or year
G'day Paul,
I guess at this point nothing anyone says will make you feel better. This whole process is adjusting wether you want to or not.
I'm going to ask the obvious question. Have you asked your treating doctors and specialists to write you a letter about your condition/s?
Superannuation companies have to allow you access to your funds if you can prove you will lose your home without it. Pretty sure that's a law. Maybe you could contact the ombudsman if they do not comply.
lastly anyone reading your post no doubt feels for you and your family. I know you are dealing with so much stress and pain and overall dissaray. Somehow you have to keep going get as much joy as you can from the everyday, and don't waste your time looking for a light at the end of the tunnel. Try to laugh still and don't push those closest to you away by being miserable. I hope you read this as I intend it. I'm no so good with tact. Lol
hang in there.
yours vic
p.s don't die before your dead.
I guess at this point nothing anyone says will make you feel better. This whole process is adjusting wether you want to or not.
I'm going to ask the obvious question. Have you asked your treating doctors and specialists to write you a letter about your condition/s?
Superannuation companies have to allow you access to your funds if you can prove you will lose your home without it. Pretty sure that's a law. Maybe you could contact the ombudsman if they do not comply.
lastly anyone reading your post no doubt feels for you and your family. I know you are dealing with so much stress and pain and overall dissaray. Somehow you have to keep going get as much joy as you can from the everyday, and don't waste your time looking for a light at the end of the tunnel. Try to laugh still and don't push those closest to you away by being miserable. I hope you read this as I intend it. I'm no so good with tact. Lol
hang in there.
yours vic
p.s don't die before your dead.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Not a good day, week, month or year
Had come off a couple of days of phone calls and e-mails trying to sort all this stuff out before my transplant and achieved basically nothing when I wrote this. I literally would have been better off not bothering and concentrating on resting, relaxing and spending quality time with my kids before my trip down south.
Super is not an option as I do not meet any of the preconditions or triggers set out in the regulations they work to, and insurance is just so slow, especially when they do pay out.
Did have a hint of good news, though. The company that stuffed up my income protection cover have forwarded their response to my complaint to their directors for sign off. This doesn't happen for refusals or rejections but, as a rule, only occurs when they have determined that they are liable and that it is in their interests to settle before it goes to court. Fingers crossed on that.
Anyway, I have vented my spleen (as my mother would have said) and feel better for it, sorry if it offended or upset anyone on here. It all gets too much sometimes and there are so few people I have to talk to and even fewer, sometimes none, I can tell how I really feel.
Super is not an option as I do not meet any of the preconditions or triggers set out in the regulations they work to, and insurance is just so slow, especially when they do pay out.
Did have a hint of good news, though. The company that stuffed up my income protection cover have forwarded their response to my complaint to their directors for sign off. This doesn't happen for refusals or rejections but, as a rule, only occurs when they have determined that they are liable and that it is in their interests to settle before it goes to court. Fingers crossed on that.
Anyway, I have vented my spleen (as my mother would have said) and feel better for it, sorry if it offended or upset anyone on here. It all gets too much sometimes and there are so few people I have to talk to and even fewer, sometimes none, I can tell how I really feel.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Not a good day, week, month or year
I hope everything works out for you quickly, and best wishes with the transplant!
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Not a good day, week, month or year
Hi Paul,
I'm sorry to hear about your diagnosis and the financial struggles you're going through.
One thing to keep in mind is that most people (which includes those who work at financial institutions) have never heard of multiple myeloma, so they simply don't know what you're dealing with. However, it seems to me that they should be able to understand how disabling a disintegrated vertebra in your upper back is - especially if you provide doctors' statements saying you're XY% disabled.
That being said, what struck me most about your post was the claim that "the people with ten years or longer survival and near normal lives are the minority with the majority of people with multiple myeloma suffering severe disability and dramatically shortened lives".
I looked up the statistics when my boyfriend was diagnosed with multiple myeloma in January and was devastated when I read that the median survival was only five years. However, statistics are just numbers and numbers can't tell you what course your multiple myeloma will take.
As someone living with a multiple myeloma patient I can tell you that only one thing is certain at this point: that your life has changed forever. It takes time to accept the diagnosis, to go through treatment, to recuperate from treatment, and to adjust. Try to be good to yourself and to your loved ones throughout this process - and involve them in it.
I know exactly what Vic is talking about when he says "Don't die before you're dead!" because my boyfriend refers to the time before his surgery and diagnosis as "before I died". It hurts so much to hear that! I understand your anger and frustration and fear, but try not to do that to your family.
To cut a long story short: I hope your treatment will be successful and you will still be posting here one, five, ten years from now! My best wishes to you and your family!
I'm sorry to hear about your diagnosis and the financial struggles you're going through.
One thing to keep in mind is that most people (which includes those who work at financial institutions) have never heard of multiple myeloma, so they simply don't know what you're dealing with. However, it seems to me that they should be able to understand how disabling a disintegrated vertebra in your upper back is - especially if you provide doctors' statements saying you're XY% disabled.
That being said, what struck me most about your post was the claim that "the people with ten years or longer survival and near normal lives are the minority with the majority of people with multiple myeloma suffering severe disability and dramatically shortened lives".
I looked up the statistics when my boyfriend was diagnosed with multiple myeloma in January and was devastated when I read that the median survival was only five years. However, statistics are just numbers and numbers can't tell you what course your multiple myeloma will take.
As someone living with a multiple myeloma patient I can tell you that only one thing is certain at this point: that your life has changed forever. It takes time to accept the diagnosis, to go through treatment, to recuperate from treatment, and to adjust. Try to be good to yourself and to your loved ones throughout this process - and involve them in it.
I know exactly what Vic is talking about when he says "Don't die before you're dead!" because my boyfriend refers to the time before his surgery and diagnosis as "before I died". It hurts so much to hear that! I understand your anger and frustration and fear, but try not to do that to your family.
To cut a long story short: I hope your treatment will be successful and you will still be posting here one, five, ten years from now! My best wishes to you and your family!
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Nico1908 - Name: Nico1908
- Who do you know with myeloma?: My boyfriend
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 47
Re: Not a good day, week, month or year
Hi Paul,
Your post really moved me. I feel bad for the physical pain you're in and the financial stresses you're under. Having multiple myeloma is no picnic (not sure if that's a phrase used in Australia, but you get my point, I'm sure!).
My main message is simply -- hang in there. I know that alone doesn't solve the problems you're facing. But I want you to know we're thinking about you and rooting for you. Rooting for you both in your treatment and in your battles with the financial institutions.
Please let us know how things go for you with the SCT next week. Two bits of advice on that, that I'm sure you've seen elsewhere in the Beacon: (1) chew lots of ice chips before, during, and after the melphalan injection, and (2) exercise as much as possible during your recovery; be active even if you don't feel like it.
BTW, I think your numbers may be a tad pessimistic. Before I had my auto SCT last year, my doctor told me the current figure is a 1% mortality rate from that procedure. And the latest multiple myeloma median survival number I've heard, assuming use of novel agents, is 9-10 years. So here's hoping we're both talking to each other way past then!
Good luck, mate!
Mike
Your post really moved me. I feel bad for the physical pain you're in and the financial stresses you're under. Having multiple myeloma is no picnic (not sure if that's a phrase used in Australia, but you get my point, I'm sure!).
My main message is simply -- hang in there. I know that alone doesn't solve the problems you're facing. But I want you to know we're thinking about you and rooting for you. Rooting for you both in your treatment and in your battles with the financial institutions.
Please let us know how things go for you with the SCT next week. Two bits of advice on that, that I'm sure you've seen elsewhere in the Beacon: (1) chew lots of ice chips before, during, and after the melphalan injection, and (2) exercise as much as possible during your recovery; be active even if you don't feel like it.
BTW, I think your numbers may be a tad pessimistic. Before I had my auto SCT last year, my doctor told me the current figure is a 1% mortality rate from that procedure. And the latest multiple myeloma median survival number I've heard, assuming use of novel agents, is 9-10 years. So here's hoping we're both talking to each other way past then!
Good luck, mate!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Not a good day, week, month or year
Hi Paul, good luck with the stem cell transplant and also with the repair of the vertebrae. Nowadays the SCT is not too dangerous, but of course we have to adhere to all of the guidelines to avoid infection after that. That is why one would be prescribed antibiotics, antivirals, anti fungal drugs, and also have to take precautions with what we eat...mostly cooked food. I know that Australia has an excellent health care system also.
In Canada, if one were to be disabled, it is possible to apply for an early 'disability pension' from the Canada Pension Plan. Normally CPP benefits are available anytime after age 62 (it is prorated if one applies before age 65). Is that the same in Australia, and if so could you apply for a disability pension through your federal gov't. Just a thought. Best wishes to you!
In Canada, if one were to be disabled, it is possible to apply for an early 'disability pension' from the Canada Pension Plan. Normally CPP benefits are available anytime after age 62 (it is prorated if one applies before age 65). Is that the same in Australia, and if so could you apply for a disability pension through your federal gov't. Just a thought. Best wishes to you!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Not a good day, week, month or year
Hi Paul, I'm in Melbourne, having treatment, and have been thru exactly what you write of. I was a 70 hour a week manager, ready for a few more years of the grind, then off to Queensland with my wife, caravan and dog.
Multiple myeloma has cut me down to walking to the letter box, loads of Foxtel, and reading. I thought I was going ok in the first year, but a chat to my hospitals psych people certainly helped. The last 2 years have been just ok.
I have been thru the Centrelink process and superannuation support system. All sorted now with a small pension coming in, but the super side of things is well worth chasing -- income support, then a TPD payout which us multiple myeloma patients qualify for.
I layed awake for 8 months dissecting how I could keep the family going, what was going to happen, how would we manage, but it is do-able .. make some calls.
I really think there is a huge issue here for men who get something like multiple myeloma. Getting your head around what is happening to you and letting go of the steering wheel are major parts of getting somewhere with the whole treatment process.
All the best and stay in touch
Alex
Multiple myeloma has cut me down to walking to the letter box, loads of Foxtel, and reading. I thought I was going ok in the first year, but a chat to my hospitals psych people certainly helped. The last 2 years have been just ok.
I have been thru the Centrelink process and superannuation support system. All sorted now with a small pension coming in, but the super side of things is well worth chasing -- income support, then a TPD payout which us multiple myeloma patients qualify for.
I layed awake for 8 months dissecting how I could keep the family going, what was going to happen, how would we manage, but it is do-able .. make some calls.
I really think there is a huge issue here for men who get something like multiple myeloma. Getting your head around what is happening to you and letting go of the steering wheel are major parts of getting somewhere with the whole treatment process.
All the best and stay in touch
Alex
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Alex
Re: Not a good day, week, month or year
Hi Paul,
When I was diagnosed 5 years ago, multiple myeloma here in Australia was still considered a terminal condition (I was treated in Ballarat & at the Austin & Alfred in Melbourne). My Ballarat oncologist at the time ticked the box that says "not expected to survive the year" for my insurance company and superannuation.
It was pretty confronting at the time, and my oncologist told me that it would be when I actually saw that tick. I am not sure if they (insurance companies and superannuation) have changed the definition of multiple myeloma from terminal to "treatable". But to get the money, the oncologist needs to tick that little box. (I have lived more than that 1 year and I am not giving the money back)
Okay, so the multiple myeloma is never going to go away. But we can still live, we just need to adapt and to be aware of our limitations (sometimes I get a bit frustrated and do things perhaps I shouldn't). So I put on my "GRRR face" and don't give in - and it has backfired at times. Like the time I walked down our back hill and couldn't walk back up again. I was stuck there 100 m from home until my husband happened to bring the car down and picked me up. That experience didn't stop me from walking again, I always take my phone with me now in case I do get stuck. When I was growing up my mother would always call me stubborn
.
Are you on fentanyl patches for the pain from your fracture? I can't remember how long I was on them, but the pain from the fracture does decrease considerably with treatment and medication. It used to take me ~10 mins to walk from the bedroom to our kitchen when I was first diagnosed, and we don't have a big house. Yesterday, I got stuck in the rain as I was walking / running from the Prahan market back to the Alfred hospital. A couple of years ago, I wouldn't have thought that possible.
You were diagnosed in February - it is such a short time to try to take everything in about this disease. So it is probably difficult at the moment to see how you can ever work again. But you might. My multiple myeloma journey has been truly a "special" experience for me and I am left with permanent reminders of this cancer (at least 3 spinal fractures - I don't know whether that uncoordinated dance move my husband and I tried in the kitchen a couple of weeks ago resulted in another fracture or shifted one that was already there
) and its treatment.
Having said that, now 5 years on from diagnosis and 3 years from my allo, I am doing things that I love to do (not everything that I would love to do). For one, my "work". It has only been this last year that I have had the strength and inclination to be able to do it. Is it perfect? No. Would I be doing it if I didn't have multiple myeloma? Possibly not. I have centered my "work" around me, I "work" from home and if I feel tired I rest (sometimes
and I am there to drop the children off and pick them up from school.
All the best,
Libby
When I was diagnosed 5 years ago, multiple myeloma here in Australia was still considered a terminal condition (I was treated in Ballarat & at the Austin & Alfred in Melbourne). My Ballarat oncologist at the time ticked the box that says "not expected to survive the year" for my insurance company and superannuation.
It was pretty confronting at the time, and my oncologist told me that it would be when I actually saw that tick. I am not sure if they (insurance companies and superannuation) have changed the definition of multiple myeloma from terminal to "treatable". But to get the money, the oncologist needs to tick that little box. (I have lived more than that 1 year and I am not giving the money back)
Okay, so the multiple myeloma is never going to go away. But we can still live, we just need to adapt and to be aware of our limitations (sometimes I get a bit frustrated and do things perhaps I shouldn't). So I put on my "GRRR face" and don't give in - and it has backfired at times. Like the time I walked down our back hill and couldn't walk back up again. I was stuck there 100 m from home until my husband happened to bring the car down and picked me up. That experience didn't stop me from walking again, I always take my phone with me now in case I do get stuck. When I was growing up my mother would always call me stubborn
. Are you on fentanyl patches for the pain from your fracture? I can't remember how long I was on them, but the pain from the fracture does decrease considerably with treatment and medication. It used to take me ~10 mins to walk from the bedroom to our kitchen when I was first diagnosed, and we don't have a big house. Yesterday, I got stuck in the rain as I was walking / running from the Prahan market back to the Alfred hospital. A couple of years ago, I wouldn't have thought that possible.
You were diagnosed in February - it is such a short time to try to take everything in about this disease. So it is probably difficult at the moment to see how you can ever work again. But you might. My multiple myeloma journey has been truly a "special" experience for me and I am left with permanent reminders of this cancer (at least 3 spinal fractures - I don't know whether that uncoordinated dance move my husband and I tried in the kitchen a couple of weeks ago resulted in another fracture or shifted one that was already there
) and its treatment. Having said that, now 5 years on from diagnosis and 3 years from my allo, I am doing things that I love to do (not everything that I would love to do). For one, my "work". It has only been this last year that I have had the strength and inclination to be able to do it. Is it perfect? No. Would I be doing it if I didn't have multiple myeloma? Possibly not. I have centered my "work" around me, I "work" from home and if I feel tired I rest (sometimes
and I am there to drop the children off and pick them up from school. All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Not a good day, week, month or year
I don't have any good info to add, just wanted to send my good thoughts and prayers to you and your family.
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gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57
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