Once upon a time...

[lizzie]

Sending positive thoughts to you and your wife.

Hoping all has a good outcome, and it is a blessing (and forethought) that you are in this position of not having to go out to work during this stressful time - means you can concentrate of your family.

Priorities certainly get sorted - for the better.

 

[HiEquity]

Thanks everyone for the well wishes - it's appreciated.

HE, so sorry to hear about your wife...... its a difficult journey, but I hope you and your family are finding good things in this awful time.

You might remember that I was diagnosed with lung cancer around 18 mths ago.
http://somersoft.com/forums/showthread.php?t=63614&highlight=curve+ball

Its certainly changed my life... in both good and bad ways. I have tried to take the approach of one day at a time. Every day is a good day and I try to make the most of it.

If you ever want some support or advice, please feel free to PM me. I'm a little cautious about discussing in too much detail on the main forums, because there has been one person on the board who has been extremely unhelpful in their approach to cancer and twds me... they were banned, but I think they have returned in a new persona.

I hope you have lots of supportive people around you, and I'm sure you'll also find support on Somersoft...

Hi Penny

Thanks for the note and yes I remember that thread. I didn't respond to it at the time because I felt I had nothing helpful to add. I never knew what to say to those people I knew who had a life threatening illness. I have known three people who have passed away as a result of cancer and it is to my eternal regret that I didn't catch up with them more often during the course of their disease. I hadn't had any personal experience of cancer at that time so didn't feel I could say anything of value and tried to take comfort in the fact that I thought they would be sick and not wanting to chat anyway. I was always disappointed in myself having that reaction - I guess at least I won't have that problem anymore!

We have had wonderful support by comparison to that which I used to provide the people I knew. We have a roster of around 40 mums from our kid's Playgroup and school who drop off 4 meals a week between them to take just one example. Some ringleaders organise that for us and while we are perfectly capable of cooking for ourselves it does actually help with so much time back and forth to hospital etc and so many people want to help but can't think how.

And yes, one day at a time is the only way to go. Full time care for 3 young kids helps immensely with that - we just don't get time to dwell on things for very long. Sometimes there are bad days and then there are good days.

I do hope your treatment is going well - must be about time to update that thread of yours?

 

[INVSTOR]

Thanks everyone for the well wishes - it's appreciated.



Hi Penny

Thanks for the note and yes I remember that thread. I didn't respond to it at the time because I felt I had nothing helpful to add. I never knew what to say to those people I knew who had a life threatening illness. I have known three people who have passed away as a result of cancer and it is to my eternal regret that I didn't catch up with them more often during the course of their disease. I hadn't had any personal experience of cancer at that time so didn't feel I could say anything of value and tried to take comfort in the fact that I thought they would be sick and not wanting to chat anyway. I was always disappointed in myself having that reaction - I guess at least I won't have that problem anymore!

We have had wonderful support by comparison to that which I used to provide the people I knew. We have a roster of around 40 mums from our kid's Playgroup and school who drop off 4 meals a week between them to take just one example. Some ringleaders organise that for us and while we are perfectly capable of cooking for ourselves it does actually help with so much time back and forth to hospital etc and so many people want to help but can't think how.

And yes, one day at a time is the only way to go. Full time care for 3 young kids helps immensely with that - we just don't get time to dwell on things for very long. Sometimes there are bad days and then there are good days.

I do hope your treatment is going well - must be about time to update that thread of yours?

HE - some of the comments you made to me about a friend and regrets you had with cancer a couple of years back has stuck with me (and everyone else who commented). Will ring my best mate now. Would love an update Penny! You've just got to ignore some people!!

 

[INVSTOR]

Quite a few people I know have been diagnosed with cancer lately. Unfortunatley/ fortunately my best friend with cancer with 2 kids had just decided to split with her huband. Cherish every moment HE.

 

[Lily House]

I, too, know people going through such terrible times atm - a couple of them involving children. Hang in there. I wish your wife the very best for a complete recovery.

 

[HiEquity]

Sometimes there are bad days and then there are good days.

And then there are the very good days! Yesterday we were informed that our PET scan (the main diagnostic test) is now completely clear. There is no longer any evidence of active disease - the difference between this radiologist's report and the last one is chalk and cheese... To say this is a huge relief would be a massive understatement - this is the best news we could have hoped for. Even our haematologist was holding back tears while cracking jokes (and giving me heaps about what I was wearing...) as he gave us the news - you could see this was the sort of thing that kept him going through some of the real $#&# he would no doubt have to deal with in his work. He had obvious pride in his work and we have a huge appreciation for what he has done for us.

Now the focus is on relapse prevention so there are still 3 more cycles of chemo to get through and a 2 year wait to see whether this thing stays away. But the response to therapy has been excellent which is a positive sign... not counting our chickens yet though by a long way.

So I'm a pretty happy chappy today despite being charged with looking after 3 young kids on my own for the week while the wife goes back in to hospital for more chemo...

 

[pennyk]

And then there are the very good days! Yesterday we were informed that our PET scan (the main diagnostic test) is now completely clear.

Fantastic news!!!! Hope you have planned a celebration dinner...

 

[our obsession]

And then there are the very good days! Yesterday we were informed that our PET scan (the main diagnostic test) is now completely clear. There is no longer any evidence of active disease - the difference between this radiologist's report and the last one is chalk and cheese... To say this is a huge relief would be a massive understatement - this is the best news we could have hoped for. Even our haematologist was holding back tears while cracking jokes (and giving me heaps about what I was wearing...) as he gave us the news - you could see this was the sort of thing that kept him going through some of the real $#&# he would no doubt have to deal with in his work. He had obvious pride in his work and we have a huge appreciation for what he has done for us.

Now the focus is on relapse prevention so there are still 3 more cycles of chemo to get through and a 2 year wait to see whether this thing stays away. But the response to therapy has been excellent which is a positive sign... not counting our chickens yet though by a long way.

So I'm a pretty happy chappy today despite being charged with looking after 3 young kids on my own for the week while the wife goes back in to hospital for more chemo...

This is so good, I just wanted to look and requote it again because I am so happy for you all...we have had similar good news for my brother (N H lymphoma). The last few rounds of treatment was a challenge, a spring cold from the kids put him in hospital. Those clear PET scans are indescribable moments. Go the HiE's, just go the HiE's!!!!

 

[BMan]

great news!!!

 

[redwing]

Great News Hi-Equity

Glad you are having good days as well, we sincerly wish you and yours all the best

Thanks for the update

 

[Dazz]

Great stuff mate - pleased for all of you.

The palpable strain on your face last week was that of a man carrying a heavy load indeed.

I'm glad the news has lifted some of that strain.

Thank the Lord for 2nd opinions !!

Big stuff transcending property matters.....health.

One excellent blow for the good guys !!

 

[jaycee]

Fantastic news, wishing you all the best.

 

[wobbycarly]

Good to hear of some positive progress.

 

[lizzie]

Now that IS good news ...

 

[starbright]

Fantastic news.

I wish you all the best in health.

 

[HiEquity]

Thanks everyone for the well wishes. Yes it is fantastic news - considering where we have come from I can hardly believe it.

Fantastic news!!!! Hope you have planned a celebration dinner...

Nope - the wife went straight into hospital for another round of chemo straight after that appt. We'll be lucky if she is out by Sunday. And then she will probably have to go in after another week for transfusions etc to deal with the impact. This happened last time - because we were all sick at home at the time she then had to go stay at an aunt's place because a common cold would have put her straight back in hospital as well. It's not for no reason our haematologist asks before every chemo cycle "so, are you ready for us to poison you?".

But right now we're definitely not complaining! Whatever it takes...

 

[HiEquity]

Thank the Lord for 2nd opinions !!

Indeed Dazz - this is something I wanted to elaborate on.

We have always had private health insurance but, not knowing much about the health system, I always thought it was a bit unnecessary and the benefits were only really confined to having a nice hospital room with the latest decor which I could easily do without. I assumed (incorrectly) that there would be no real difference in medical care.

Now while I imagine most on this Board wouldn't need to be convinced of the merits of private cover, for those who may be considering doing without it (particularly given the current govt's &$%* removal of the major tax incentive to have it), I thought I should highlight our experience here.

Our first treatment regime started at a major teaching hospital in the public system. There were advantages to this in that all the major testing equipment was close at hand and for the first week there was just a barrage of tests to get a proper diagnosis. There was also emergency care required when she had trouble breathing and her blood pressure dropped like a stone due to the lymphoma impeding her heart function.

Then we came to the proposed treatment regime. We were assigned a consultant who stated the brand of lymphoma we had and the proposed treatment of both chemotherapy and radiotherapy. By this stage I had done enough google medicine on lymphoma to question the proposed treatment and ask whether a more intensive chemo treatment without radiotherapy should be used as I had seen better success with this in some of the studies out there. But my concerns were brushed aside due to their being not enough evidence either way for our consultant and it was made clear we didn't have any choice within the public system (even as a private patient). One of the registrars wouldn't even look us in the eye when we were challenging him on the proposed treatment - he could only say that "it's the consultant's call". It was clear he didn't agree with it and it was a source of friction within the team. We didn't need this...

We were keen to avoid radiotherapy though if at all possible (there are a lot of risks with irradiating the chest area, particularly for a woman) and pulled a lot of strings to get a second opinion from a private consultant. This second consultant basically said "I wouldn't continue with that treatment if I were you" and pretty much verified every concern we had. He recommended the more intensive chemo on the grounds it had a better success rate on the (albeit small) data available and didn't involve radiotherapy to the chest. He had also used it before with success. We were dealing with a grey area in the profession and it was ultimately up to us which way to jump. We went with the second consultant (even after already having to start the other treatment with the first due to time constraints) and have been very happy with the care. It was clear to us that this second consultant was all over the subject matter at hand (significantly more than the first) and didn't have to answer to anyone else so was able to just back his own judgement call, which was ultimately what this was all about - a judgement on which way to go. I've seen the same differences of opinion in my own profession and was more confident going this way as a result.

My point in all this is about having the choice. More often than I realised there are judgement calls required in this stuff and ultimately we are all responsible for our own health and need to make the best decision we can for our family with the information available to us. Having private health insurance gave us a choice in this case and let us make our decisions without having financial or other concerns interfere with our thinking. As a result I can only wholeheartedly recommend it...

 

[Aaron Sice]

Great stuff mate - pleased for all of you.

The palpable strain on your face last week was that of a man carrying a heavy load indeed.

I'm glad the news has lifted some of that strain.

Thank the Lord for 2nd opinions !!

Big stuff transcending property matters.....health.

One excellent blow for the good guys !!

hear! hear! you looked positively stressed i was going to ask what the matter was....

i'm sincerely very happy for you and your young family. i told my wife about your situation and she was almost in tears - we have three as well....

 

[INVSTOR]

Indeed Dazz - this is something I wanted to elaborate on.

My point in all this is about having the choice. More often than I realised there are judgement calls required in this stuff and ultimately we are all responsible for our own health and need to make the best decision we can for our family with the information available to us. Having private health insurance gave us a choice in this case and let us make our decisions without having financial or other concerns interfere with our thinking. As a result I can only wholeheartedly recommend it...

That's fantastic news and thanks for that fantastic post and expressing your experiences with private v's public! I have started a couple of threads previously about good friends of mine with breast cancer. The first instance - my friend was diagnosed and using the public system. A relative was diagnosed a couple of days later went through the private hospital system. I know that the many types of breast cancer can vary greatly, but the patient with private cover seemed to have a much more urgent response than the waiting lists of the friend using the public system. More recently, another friend has been going through public system. She was told by oncologist they could do no more for her and they wouldn't continue with any more treatment. Her brother is a doctor and has been researching more avenues. Although she has no private cover and doesn't have much/any money, they decided to go private. Her new oncologist in the private hospital suggested a treatment that commonly cures the type of cancer she has that the public system failed to ever try. I think it is definately worth going private for cancer. Even when I broke my leg I went through the public system and the surgeon didn't believe it was broken (hadn't seen any x'rays results at the time) He got two nurses to hold me down while he tried to straighten my leg. Tears were rolling down my face and he said, "I get you woosy girls all the time who won't straighten your leg when their is nothing wrong with it." Totally different story when I saw him again and he had my results and saw how much damage I had! I didn't understand the trainee doctor/public hospital thing at the time, and used to think people went privately for the comfy stay. I have another relative too who had DVT and PE (life threating) Public hospital gave her a script for nurofen and warfarin and told her to rest. When she took scripts to her chemist where she worked he told her you couldn't take the two together. She had private cover so went and saw the private hospital who admitted her immediately.

 

[pennyk]

what I really like is that I can combine both private and public, depending upon what I need. I see an oncologist at the hospital clinic, but do chemo privately.
I think its really the best of both worlds.....