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Your writing touched me too Archer I am sorry for your loss and relate to some of your feelings.
I must admit I was scared of any tx after my last experience too. Thankyou for saying it out loud. Yes Pat1 I agree it's good to take a break sometimes to just chill this is overwhelming I think for us all at times.
Given this feeling, I have deactivated my Facebook for the duration of this tx and golly gosh what a release thats been l was sick to death of people liking pictures of waves and surf and even me with stuck on hair (I lost 2/3rds of my hair to peg/inf) and really just needed to chill away from the mad world of social media.
I like this forum. It's real. Aren't we fortunate to be able to share not just the quantitative and qualitative stuff but also some of our feelings in good company

Very sad to hear of your loss.

I have had a few dramas since we last spoke, basically I now have no Spec or help from my local hospital as they have said nothing they can do. My choice to tell them to shove it as I have had a gutful, I hope no one has to suffer what they have done to me. They have offered to give me meds to ease the pain and try to keep me as comfortable as possible.

I have started my 2 nd go at Sof and Del on Boxing day and hopeful this one is successful, I have 10 months worth so hoping I prove them wrong. Hope you start feeling better and be strong.

Barry

Ariel

Hi Barry
I was pleased to read that you have a new doctor and this specialist is working with you. All the best for treatment.

How are you doing Archer?

To everyone who responded to my post; I thank you for your kindness.

In truth, had I remotely imagined that it would invoke such concern, I would likely not have written. I think my condition seems to be improving - I can breathe better. I was helped by an exceptionally caring doctor and am grateful. I was also offered alternate medical counsel due to the intervention of another member. All these individuals actively engage with Buyer’s Club forum – reflecting its generous spirit & exceptional human service.

Barry, thanks for your reply, Christmas since we last spoke. Iv’e watched you for some time now mate, other side of the outback – doing it real tough. You’ve never spared yourself – with complications & hard news – picked yourself up & fought on – I take my hat off to you. Family first, I know – so do what you have to - but lighten up a little, you endearingly stubborn bugger – be kinder to yourself. At least you’ve got the meds now – I hope you feel better, and as it goes, have whatever you need. Often think of you & the family. take care.

There are many angry – who got warehoused by the beaurocratic bullshit. Did it not occur to them to implement some strategy even at cost, for most at risk - whilst they did their wheeling & dealing. Meanwhile we waited & watched out for each other – and hoped to last the distance. Had a call last week for advice from Adelaide. How long & silent has been this epidemic till the tsunami began to break over us – yet still how little people know about HCV and how it proceeds. A friend with young children died last year – her husband told me - don’t wait – keep trying – or they “will” just wait till each crisis – and eventually its too late.

So it may have seemed surprising, when my first post disclosed that I balked when I finally got the meds – but with my HCV gone so far - I feared that even the treatment might overload my liver. Which is why whenever I even begin to have more complications (like last week) I am perhaps overly cautious. Cirrhosis can go to shite - very quickly. Thanks to the Buyer’s Club selection and testing protocols, (excluding life’s statistical outliers) there seems little reason for an “informed” person to become so advanced with HCV, that the treatment might pose a significant risk.

So here is the missing link – an “informed” person. The bureaucracy has now done its dealing – treatment is available. But how well informed are the public – about their diagnostic probability, the trajectory, complications & treatment of this disease. For years I saw nil health medium addressing HCV and more recently - poorly disseminated. Given the life threatening potential of this disease - How many undiagnosed people out there are really sufficiently informed?

Life and circumstances can change in a second. Do we yet know enough about what damage the virus is doing even in its earlier stages. Personally; Even if I was an early F1, F2 or F3 and the SVR numbers on Buyer’s Club treatments stack up – if I was well informed about HCV – and could conserve the funds from other life expenditures – I might not wait in the Public treatment queue - I would be inclined to purchase the treatment and eliminate this virus from my system at the earliest opportunity.

Yours is a gracious response and I am really glad that you did take the time to reply. I admire your determination and spirit. It was pleasing to read that your symptoms had abated somewhat. You asked the question '.But how well informed are the public...' This is still a hidden disease and when I told my sisters recently that I had hepc they were completely unaware of the ramifications. Despite being told to wait for new medications over the years and with the announcement of the recent PBS listing I even now would not change my game plan. The Buyers Club has transformed mine and many lives.

Hi Archer,

I have only just come across your posts, I'm SO GLAD you posted.
I've been so hoping you would, as the people here, as you've now found out, are so supporting.

You are a very strong, determined woman, you've been through so much, please keep posting, it does help to know there are so many who care.I know everyone will be wishing & hoping for you to come out of this hep free!

I also didn't realise Barry was on this forum now aswell. Glad he's got some orals, hope it helps him.

please call me any time you want, you know I'm here for you if you want to talk.
Don't get frightened & then be alone. please.
No one should be alone with their fears.
Yours are very real, but I do think these meds will help you.

Don't ever stop the meds, you're going to win Archer, I know it

Love Cindi xo

Recently a friend suggested we might have judged the PBAC too harshly for initially denying approval of sofosbuvir – that we may have underestimated the negotiations needed to broker a deal sufficiently cost effective to treat so many HCV sufferers. Greatly respecting my friend – I gave this due consideration.

After all, I have been banging on about the immorality of a bureaucracy which approved the less costly simeprevir – but appeared silent on the warehousing of patients intolerant of IFN/simeprevir - seeming to leave them to die. I deplored a seeming failure to establish contingencies for those most at risk - succumbing to HCC, life-threatening complications & end stage disease.

Two weeks ago a very dear friend lost his battle with cirrhosis. After nearly four years of hospital visits, TACEs, and suffering – the wake celebrating his too short life was held only six days ago. During this time I received an interstate call about a friend whose symptoms were also becoming worse. Hospital admission & days of countless tests to determine why more than two months following his TACE, he was becoming so rapidly ill - They found more HCC and he too passed within days.

Two of several friends - who should have much earlier received the DAAs. I can find no rationale for such loss whilst treatment negotiations were being conducted. Maybe the prejudice with which we are “stigmatised” has generated some disregard for our welfare. There are cancer sufferers being given treatment matching Gilead’s costs simply to buy them more time – yet we were denied equal resourcing for a cure.

Surely the costs should not have been prohibitive. If the Buyer’s Club could get affordable pharmaceuticals from alternative sources – then why could the Government not have sourced, tested and provided safe treatment for this group of patients. Should Free Trade provisions bind a Government, when an avaricious Corporation is holding its citizens’ very lives to ransom.

For what seems as long as I can remember - this is the twilight endured by sufferers for whom IFN was ill advised. Now there is rejoicing – and rightly so; because the DAAs are approved. Thankfully humanity and sanity amongst all parties has finally prevailed.

But the casualties amongst those who were denied treatment when most at risk – are still mounting. They have not yet magically disappeared with the advent of DAAs. The “silent” legacy of the current health ministry.

Ironically, in the midst of such a tragic week - I received the news that I am UND. I feel grief for the many lost – yet also for the first time a tenuous daring to hope - that if I am very lucky - I might possibly survive. But however this crap shoot turns out - to be given a last throw of the dice - would not have been possible without the courage and tireless work of Dr Freeman & the Buyers Club.

Dear Archer, there's so much pathos in your words it's hard to find my own.

But I have to say it. CONGRATULATIONS on becoming UND.

Ironically, in the midst of such a tragic week - I received the news that I am UND. I feel grief for the many lost – yet also for the first time a tenuous daring to hope - that if I am very lucky - I might possibly survive. But however this crap shoot turns out - to be given a last throw of the dice - would not have been possible without the courage and tireless work of Dr Freeman & the Buyers Club.

Hey Archer, so pleased to read your good news and I also feel your grief for those who did not access the medicines before too much irreversible damage was done , more than you can know.

Hi Archer,

I'm so happy to hear the result of UD for you, really happy for you.
I agree with you how we were just left to get sicker & sicker by the Gov.

But now you will find yourself healing more & more.
It is wonderful news
Hang in there girl.

Love Cindi xo

Archer, I agree with your every word and feel the sadness of knowing that others have not survived the ramifications of this insidious virus and even now are still struggling. It was wonderful to read that you are now UND. For me, It was a strange feeling to learn of a similar result for myself and I am still to absorb the implications fully. Surely now is a time of hope for all.

Totally agree Pat,
Sadly too late for some, but for others on the brink, a life saver.
x

Hi Archer,

Hope you see this, I know you get so busy with work, but how are you going?
I'm sure many here also wonder too?

Hope you're doing better.

Love Cindi x