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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Re: Not a good day, week, month or year

by Paul H on Mon Jul 21, 2014 12:12 pm

Thankyou everyone for your support, wishes and suggestions.

I am definitely going for TPD and if that comes through my family will be ok as when I was diagnosed I hadn't rolled my old super into my personal fund and my employer stuffed up and put me into their fund instead of the one I nominated. Basically this has left me with three funds each with TPD and Death insurance policies, one at the minimum level but two at much higher amounts. The policies my old fund are in dispute as they lapsed them without permission or even advising me of their intent to, but the other two are rock solid so there is plenty of money, I just haven't been able to tick all the boxes yet.

The biggest issue is my wife's salary is very good which has automatically excluded us from virtually all assistance as we are still technically a high income family. We were living within our means but that was when I was working and also earning a good salary and with my super fund lapsing my income protection insurance we have been left short.

Getting quite nervous and apprehensive as the transplant creeps closer, I suppose because its one of those things that once you've started there is no return, once the drip with the Melpalan starts, that's it, no going back.

No patches for me at the moment but they have been discussed. I am currently on 80mg Oxynorm (20mg 4 time a day), 120mg Pregabalin (at night instead of Panadol), Panadol and Tramadol for break through pain. I was on Oxy Contin to start with, it worked very well but I developed an allergy to it. I had an MRI on Saturday that shows there is nothing left of my T4 but my T5 seems to be holding out ok. Interestingly my S1 is also out of position, with bulged discs impinging on my spinal cord, explaining some of my inconsistent neurological symptoms, this may actually have been caused by a car accident November last year, before my multiple myeloma diagnosis, and not by the multiple myeloma at all.

Again sorry for the outburst. I usually cope ok but the reality of leaving my family to travel 3000km for treatment, knowing that I wouldn't see them again for weeks or, if the insurance doesn't come through, months just got too much for me. My worst nightmare is something going wrong with the transplant and me dying before they can get here.

Ironically we actually lived Adelaide, where I have gone for my transplant, until last year, we still own a house here but have tenants in it. A year earlier or a year later we would have been so much better off, extra time to establish ourselves in our new home, time to rebuild equity after buying a new home and most importantly time to consolidate my superannuation and insurances, as my wife already had done, including Trauma Insurance. If I had the insurances my wife has I would now be retired the mortgages paid off and a Porsche Macan in the driveway, we just weren't able to sort it all out with me having to start a new job with our move.

Sorry for the long ramble but I am actually finding this quite therapedic; typing, reading, reconsidering and re-typing etc and then reading your very kind, considerate, helpful and understanding responses. A day to go until the Melphalan, I'll see how I go and post when I can, hopefully I don't get too sick and aren't able to get online and annoy people :D

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

by NStewart on Mon Jul 21, 2014 1:12 pm

Paul-

First of all, I'm rooting for you for a successful transplant. The days before starting are really stressful when you don't know what the process is really going to be for you. When I had mine, I had arranged for my sister to fly in from her home 1000 miles away a few days before I probably would be discharged from the hospital. Then, when I had my stem cells harvested, it dawned on me that I really didn't want to be alone when I had the transplant because it really is a major procedure. She arrived the day I received my stem cells. Even though I had no major problems while in the hospital, it was comforting to know that my only family member left was there close by.

If your emotional roller coaster continues, I would suggest that you seek some professional help to get over the hump of diagnosis of cancer, stem cell transplant, and moving on with your life. You may not be able to do the work that you were training to do once you recover from the transplant and possibly have the vertebral problems addressed, but you very likely will be able to work again. I worked 4 more years as a physical therapist after my transplant and stopped because I retired due to age. I still do some teaching in the field and occasionally have a private client.

Also, see if there is a social worker, or other person at the cancer center, who can help you with all of the agencies and paperwork that you need to complete to get your finances in order. They know all of the ins and outs of applying for the different programs and getting the funds that you are due. I have no idea how things function in Australia, so I won't even begin to give you any suggestions other than what I just gave.

Know that there are a lot of people here on the forum who will be sending you lots of prayers, good wishes and healing energy over then next several weeks and months.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Not a good day, week, month or year

by Ellen Harris on Mon Jul 21, 2014 1:25 pm

Wishing you all the best with the transplant. I hope things are uneventful and very successful! The odds are on your side because of your age. Younger people tend to do better with it, and recover more quickly.

Ellen Harris

Ellen Harris

Re: Not a good day, week, month or year

by NZMum on Tue Jul 22, 2014 7:18 pm

Hi Paul,

Hope all is going well with your transplant and your financial problems resolve. We have had problems with banks and mortgages with selling rentals but, with the assistance of a good lawyer, things have settled for now.

I start my SCT in a couple of weeks and am hounding my partner to sort out our wills and have to stop myself from planning my funeral. That reads soo badly!! But there are better days when I can actually forget for a little bit that I have multiple myeloma and just enjoy funny stuff that happens with my kids after school. I can't work at the moment and have been told no heavy lifting due to risk of fractures and the days can be long.

You say you have a lot of pain. which I don't doubt. and back pain is debilitating, but was wondering whether they have chronic pain specialists in Oz? If they do, it may be worth considering seeing one, as there are new things happening all the time that may help you. Myeloma and orthopaedic specialists do know about managing pain, but getting a pain specialist on your team might make a difference.

Just a thought!

Hope you're hanging in there and sorry you are so far from your family. Here's me, the typical kiwi, whining at having to travel 100 km (60 miles) to the hospital. You sure put me in my place!!

Jen

NZMum
Name: NZMum
Who do you know with myeloma?: myself
When were you/they diagnosed?: March2014
Age at diagnosis: 49

Re: Not a good day, week, month or year

by vicstir on Sat Aug 23, 2014 7:35 pm

Hey Paul,

I was just wondering how you were getting on?

Yours Vic

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

by Shay on Sun Aug 24, 2014 7:05 am

Hi,

Just wanted to let you know that my T4 (D4) also totally collapsed 7 years ago. As you wrote, since no bone was left, the only solution was to make a fixation from D2 to D6 (five vertebrae altogether) with two long rods.

It was 7 years ago and since then, though I will always feel the area of the operation, I managed to maintain a very active life, even including cycling to the summits of the Alps and the Pyrenees. D4 is quite at the upper back with minimal movement.

Bottom line – it's not the end of the world. Find yourself a good spinal surgeon and there will be a good chance to maintain active life … cheer up.

Shay

Shay

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