Upon waking, the very next morning after receiving the "Virus still detected" result. I Set straight about the business of getting to grips with my situation & my options ! Usually there would be the walk to the kitchen, kettle on & so on. Not today, I reached out & grabbed the laptop, sat up crossed legged on the bed & flipped it open.
"Hmm, right let's think", suddenly Pongos "Hepc trust" came to mind, typed in the name & hit the link. Then spent some time just reading, sent them an email, with a brief outline of my circumstances & carried on reading. All of a sudden I began to realise I'd missed a vital part of any patients treatment or even diagnosis, process, "Information."
How foolish I began to feel, after the lessons learned, through looking after mother, researching our human rights, the patients charter & many other things, now when it came to my own plight I'd sat back & left it to the clinic.
Thinking well all there is to do is give my bloods, do the tests & take my med's, after that what will be will be, Right ! Wrong, within ten minuets of reading I discovered people were being offered extended treatment (tx). That in turn made me think about all that bother about going back to do another blood test at the clinic, after tx had been completed. A reply came in from the hep c trust," Sorry to read of your news, I'm in all morning if you would like to talk", Catherine Corr.
I rang them up & asked to speak to the person who'd replied. We chatted for some time, if ever anyone needed an understanding ear, now was the time. They Gave me a load of positives that boosted me even more, how my liver had at least had a rest, that there were new drugs on the way. The outpouring, the release was the greatest help & for that I will always be grateful.
Before I knew it nearly two hours had passed, still sat up in bed, my feet had yet to touch the floor. without realising it my come back had already begun. Time for a coffee.
On my way to the kitchen I woke up Jnr & told him how it had played out at the clinic yesterday, followed by my new insight into hep c tx & the new drugs & all the positives that your liver gets from completing tx. He never really let on how he felt about tx failing but he's like his dad, maybe even stronger. After making some what was by now lunch, I decided on a walk, it was another beautiful June afternoon, just what the Dr ordered.
Walking along the road, nearing the bridle path where I turn off into the forest, I noticed a person getting ready for a walk stood by an estate car, they opened the back to let out a labouradoodle, as I got alongside the pair, a voice called out " Peter," I turned to see my old pharmacist, she'd coloured her hair & looked quite different.
This lady was a saint, One of the nicest people I have ever met. Like my Dr she had seen me through most of the 10 years spent looking after mother & Jnr, I'd ask her about mothers med's. One time she even researched new dressings that used a honey from Newzealand & printed out a fact sheet for me. I'd met her parents. We were very good friends as much as a customer could be, but it was the way she cared, for instance if the dr had made a mistake in a script & I had to go all the way back, not only would she stay open for me, but she'd ring up the surgery & tell the staff that she would stay open for me, whilst asking them why it was taking them so long to see to me. This made me fell ten feet tall & gave my dignity a much needed boost.
We walked & talked, she had left the chemist & now worked nearby, we had kept in touch through the old girl who still worked there & so we passed messages through her. So it was, that I knew her sister had passed away some months earlier. As we talked we began to unload our emotional baggage, She remarked that she found this year harder than last when she'd lost her sibling, "that's because you were on auto pilot" I said, I knew all about that, after all it was barely 18 months since mother had passed. I'd been on auto for 10 years. We stopped & talked comforting each other.
I called the trust again a couple of weeks later & spoke to the same lady & told her of the events that afternoon, she like me had drawn the same conclusion, that we had been sent, each other, our meeting was no accident.
The clinics blood test request had also become clearer. They were thinking of offering me extended tx but why they didn't give me a bigger clue, I'll never know. Tough, when all is said & done I refused point blank their request to go back, so what can you do, shit happens. I made a lot of fuss during tx at times I had cause but my mental state during tx didn't help, I hope they understand that.
Everything happens for a reason , so it is that I sit here now, 16 months on from that still detected result & the afternoon walk with my old chemist. Only now I have redone tx, (12 months this time). I was virus undetected at 8-12 weeks & remained so all the way to tx end. That was 2 months ago ( I kept a diary of my months on Treatment on twitter).
All I can say right now is this time I covered every base, armed myself to the teeth with as much information clinical, medical, practical, spiritual, natural & sensible. Also picking up tips from people like me, who have shared their journey & advice learned. Learned in the best way possible, by "Experience."
This blog has been written because I'm still in the best place to share, as I could still fail. I have noticed The difference between the cleared & failed so my hope is that my words will be taken in the spirit offered. It's also written to keep me busy. Trust me there are some good tips in here, I learned from my mistakes last time. Come the final result I say, Win, Lose or draw, I can look in the mirror & say to myself, "Well kid, you did all you could." As results go they don't get to look much better than this at this point, the virus has been banished, through my own work & effort. The big question is where has it been banished to, some dark decaying corner of my liver or totally routed, April 2011 will be D-Day.
Never say never, my failure plan is to take 5yrs out & live life, then take a look at what's available, what I can say is "there's still some fight in the old dog yet" !
Peace.
Judgment day...Treatments End
Treatment was finished, 24 jabs of Viraferon & several boxes of Rebetol (ribavirin), many gallons of tap water, boxes of yogurts & 3-4 banana trees not to mention the staple of homemade butternut, carrot, sweet potato soup mopped up with more bread than you could shake a baguette at !Chained to the alarm (my mobile) twice daily. Driven to the edge of madness along with very little left of a fine head of hair. The skin & appearance of a leper. Now all this was over & boy was I glad.
The month was June, talk about hot & bothered, the hospital wanted me to go back in for more blood tests & the memory of that phone call will stay with me for a while yet...
"Peter, we need you to come in & do your bloods again"
"No way, I'm done & dusted, I've taken my med's, done all my bloods, So what will be will be...sight you later. "The significance of that call would come to me later, but at that point I thought I,ve done everything I can & if it was vitally important, they would insist. They did not. They got the picture & we left it at that, well apart from the fact... I remember getting the sense that something was amiss, due to a previous phone call from the nurse who, upon my last visit had told me how to finish my med's thus ending tx.
"Do your last jab then take your usual dose of Rebetol for the following week & that's it"
"Roger, got that loud & clear "
After all that, she was called me back a couple ofweeks later, to ask me when I'd had my last jab ?
"when did I do my last jab ! you should know your the one who talked me through it."
"I do apologise Peter. I hope all goes well for you "
"Words just words ! "
My experience with the hep c clinic staff was by now fraught, to say the least. There was one nurse in particular, she had a habit of exclaiming...
" You have lost quite a lot of weight or your blood pressure is very high". I usually gave no reply, instead , I took to letting out a large sigh, to explain my feelings & that I was on to her the wined up. She will be referred to as nurse C, from here on.
Treatment was now 3 months past, I was on the mend & gaining in stamina & strength weekly. The 3 month point brought me back to clinic for the usual bloods & general debrief. I felt good, yet still mentally vulnerable to upset & quick to temper, but still in control. The visits to the clinic could pick me up on occasions when results were good. I'd elected a specific Dr to be the one to deliver the verdict in 3 months time, but decided on this visit that nurse C would do, by way of mending fences. She seemed quite decent that day.
Which was a far cry from the Tactless argumentative nurse I'd crossed swords with before.
They tell you, when you 1st attend the clinic..."we're always here call anytime, should you need us"
So when I called to tell them that, my dentist appointment was to clash with one at the clinic & I'd be late. That I thought it proper to call & explain, rather that just waltz in unannounced, with some old load of pony...NurseC replied "what do you mean turn up announced". Peter you can't just turn up when ever you please & on it went, she was really out for an argument, knowing full well she'd get one from me. I made an unofficial complaint to a nurse I knew would do right..."After the chat I've just had with nurse C & now I'm fuming , bouncing off the walls up here. I could imagine hitting the bottle if I was so inclined. That is no way to handle a patient on tx, so I'm marking her card, anyway I'll say no more, simply a word to the wise."
Six months had now passed post tx, time to return to the clinic for the result. I got dressed put on my Mothers gold ring, which had been altered to fit me, told my son I would text him with the news & walked out the door into a beautiful crisp summers morning. Such days are few & far between in a persons lifetime, one of those firsts, 1st girlfriend, 1st car, Most Memorable. With haircut short, tanned & freshly shaved I swaggered into the clinic, took my seat & was duly summoned by nurse C, all smiles we exchanged greetings, she telling me how well I looked as we took our seats, she leafed through my notes for a moment, then turned to me & announced that the virus was still detected...
"You see Peter, if you had come in for those blood tests."( remember that phone call, mentioned earlier )
"Hang on, I took my med's I did my bloods are you trying to say that it's my fault I failed ?"
"Oh no, no, not at all !"
My heart sank to a place visited once before, that being the time the surgeon told Mother & I how Father had passed away on route to the operating theater. That happened in the same hospital I know sat, putting the biggest front on since WWII. There was no way I would let this ONE see how deeply she had just pierced me.
As I remember it's amazing how quickly you seem to hit your default emotion overload switch & calm down, whilst they go into SOP...
"Well, your liver has had a good rest, the virus had all but gone at treatments end, we hoped it might have still cleared," along with the other pluses that they can throw you, by way of compensation.
So it was that I walked down the front of the hospital like so many times before, head full of if, ands, buts & maybes. Only this time feeling like the condemned man.
The month was June, talk about hot & bothered, the hospital wanted me to go back in for more blood tests & the memory of that phone call will stay with me for a while yet...
"Peter, we need you to come in & do your bloods again"
"No way, I'm done & dusted, I've taken my med's, done all my bloods, So what will be will be...sight you later. "The significance of that call would come to me later, but at that point I thought I,ve done everything I can & if it was vitally important, they would insist. They did not. They got the picture & we left it at that, well apart from the fact... I remember getting the sense that something was amiss, due to a previous phone call from the nurse who, upon my last visit had told me how to finish my med's thus ending tx.
"Do your last jab then take your usual dose of Rebetol for the following week & that's it"
"Roger, got that loud & clear "
After all that, she was called me back a couple ofweeks later, to ask me when I'd had my last jab ?
"when did I do my last jab ! you should know your the one who talked me through it."
"I do apologise Peter. I hope all goes well for you "
"Words just words ! "
My experience with the hep c clinic staff was by now fraught, to say the least. There was one nurse in particular, she had a habit of exclaiming...
" You have lost quite a lot of weight or your blood pressure is very high". I usually gave no reply, instead , I took to letting out a large sigh, to explain my feelings & that I was on to her the wined up. She will be referred to as nurse C, from here on.
Treatment was now 3 months past, I was on the mend & gaining in stamina & strength weekly. The 3 month point brought me back to clinic for the usual bloods & general debrief. I felt good, yet still mentally vulnerable to upset & quick to temper, but still in control. The visits to the clinic could pick me up on occasions when results were good. I'd elected a specific Dr to be the one to deliver the verdict in 3 months time, but decided on this visit that nurse C would do, by way of mending fences. She seemed quite decent that day.
Which was a far cry from the Tactless argumentative nurse I'd crossed swords with before.
They tell you, when you 1st attend the clinic..."we're always here call anytime, should you need us"
So when I called to tell them that, my dentist appointment was to clash with one at the clinic & I'd be late. That I thought it proper to call & explain, rather that just waltz in unannounced, with some old load of pony...NurseC replied "what do you mean turn up announced". Peter you can't just turn up when ever you please & on it went, she was really out for an argument, knowing full well she'd get one from me. I made an unofficial complaint to a nurse I knew would do right..."After the chat I've just had with nurse C & now I'm fuming , bouncing off the walls up here. I could imagine hitting the bottle if I was so inclined. That is no way to handle a patient on tx, so I'm marking her card, anyway I'll say no more, simply a word to the wise."
Six months had now passed post tx, time to return to the clinic for the result. I got dressed put on my Mothers gold ring, which had been altered to fit me, told my son I would text him with the news & walked out the door into a beautiful crisp summers morning. Such days are few & far between in a persons lifetime, one of those firsts, 1st girlfriend, 1st car, Most Memorable. With haircut short, tanned & freshly shaved I swaggered into the clinic, took my seat & was duly summoned by nurse C, all smiles we exchanged greetings, she telling me how well I looked as we took our seats, she leafed through my notes for a moment, then turned to me & announced that the virus was still detected...
"You see Peter, if you had come in for those blood tests."( remember that phone call, mentioned earlier )
"Hang on, I took my med's I did my bloods are you trying to say that it's my fault I failed ?"
"Oh no, no, not at all !"
My heart sank to a place visited once before, that being the time the surgeon told Mother & I how Father had passed away on route to the operating theater. That happened in the same hospital I know sat, putting the biggest front on since WWII. There was no way I would let this ONE see how deeply she had just pierced me.
As I remember it's amazing how quickly you seem to hit your default emotion overload switch & calm down, whilst they go into SOP...
"Well, your liver has had a good rest, the virus had all but gone at treatments end, we hoped it might have still cleared," along with the other pluses that they can throw you, by way of compensation.
So it was that I walked down the front of the hospital like so many times before, head full of if, ands, buts & maybes. Only this time feeling like the condemned man.
My first clear thought was for my son & how to break the news, impossible. My second was of getting stoned, Out of the question. Then came the 1st positive out of this disaster...
"There is no way I'm letting nurse C's news be my undoing, I'll show her my true caliber !" I guess she was in fact the perfect person to hand me the bad news. It all sounds a bit immature but my world evolved around hospital & home & those within, add the state of mind tx created for me & that's it.
I headed home, climbed into bed, curled into a ball & stayed there. My son came in late on, "No Good" I called out, he acknowledged & went to bed. Words were of little use to either of us at that point. "Shell-shocked" is the only description that fits.
Tomorrow was another day, let's see what it brings & with that thought I fell back to sleep.
Peace
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