My 1st start date turned out to be the same day as my birth, a good omen maybe ? Listen, forget omens, statistics on treatment & research everyone is different, your end result is the only statistic that matters to you.
My actual start date was approx a year after Mother passed away. So I attended the clinic on a January afternoon. After going through the usual weighing, temperature, heart rate & blood pressure tests, then blood samples,(drawn with some trouble), requiring a Dr to go in either my Femoral (groin ) or jugular (neck) vein. This was to become the 1st lesson of my treatment protocol at the clinic & took a while for them to get a routine organised, much to my chagrin.
Next I met one of my specialist nurses, we sat & went through the ABC's of it, reminding me of joining a gym...here's your DVD on how to administer your jab, your AM & PM pill box, a trendy insulated, jab carry case complete with freeze bag, to place inside, A burn bin, A box of Rebetol, 3boxes of Virefieron & a bunch of booklets, my own tx goodie bag.
The nurse watched me do my 1st jab at around 4pm.They had me hang around for a while, in case of any adverse reaction...there was none. So I signed on the dotted line & that was it.
Arrived home, Cup of coffee, then waited to see how this would go, it was like dropping magic mushrooms for the 1st time, that same sense of expectation, "what was going to happen", ( I must add I hadn't read much about TX or hepatitis c, even, a big MISTAKE ). It started to come upon me late evening, slowly gaining momentum, until I had to take a paracetamol around 2am. No big mystery, the same reaction as a dirty fix or withdrawal symptoms. This may have been my first time on TX but I had been here many, many times before. Whilst I had a rough night, sweating, hot & cold shivering, this was pare for the course for a heroin addict.
The next day found me settling down, yet still out of sorts. I might have been used to such drug induced symptoms, but nothing could have prepared me for what lay ahead. This was to be the steepest learning curve faced so far in my life, in a game you better catch onto very quickly, if you want to be in the fight proper, you can't come unprepared & you can't get a late start. I had come unprepared & started too early. After all mum had only been gone barley a year.
Fact is, by the end of the time spent caring for Mother, circumstances had taken a heavy toll on me & my boy. I was so used to fighting the system,( social services ) & the care assistants, for mistakes made & here was another system that made mistakes. Meaning I'd got another thing to get to grips with, when really you just need to do your TX without worry or stress, ( I laugh now but the one time each month that I knew I'd be stressed, is when visiting the clinic ) along with a reliable, support framework. Of all these I had naught, apart from my loyal, reliable son.
The dye was cast, hold onto your hats we're in for a bumpy ride.
YOGURT & BANANAS
The end of week one brings you back to the clinic for your 1st set of treatment (tx) blood screens, this will continue every week for the first four weeks of tx, then once a month thereafter. This is so they can monitor your bodies reaction to the drugs & also to see how your doing in general.
My body coped with tx but only just. The effects of the drugs became more apparent with each passing week. Getting to grips with taking tablets 12 hrs apart ( in my case it was 3 x ribavirin 200mg in the AM then 2 more in the PM ), not only having to remember to take them on time, but also, having to eat with, to help them work & ease their toxic effect. Yogurts & Bananas...became the order of the day, washed down with as much water as a body can stand, this also eases the side effects, dry skin, cracked lips & helps to flush out your liver & kidneys. YOU MUST drink plenty of water !!!
My routine started to settle down, I noticed how tx was effecting my body, the trick is knowing when to rest & when to push your body. I soon learned that in my case Jab day would be followed by a serge of energy that, as it was summer, would push me out into the garden, where I would dig over borders, weed & generally overdo it. Then came the payback, after gardening, would see me with such a temper & totally wiped out, as much as I knew this & would say" right,this time I'm going to slow down", but did I...No, did I Eckers like. I'd find some way to overdo it, be it a walk too far, or carry too much shopping home, it seemed I would always succumb to the Jabs effect.
This part was very hard for my son, as he knew, what was to come each week. I know now he would stay out, working in the libreray at university (it's open 24 hours ) or stay in his room, out of my way, because of my temper after overdoing it.
Then came the Ribo-Rage, in my case it manifested in the form of a tendency toward manic behaviour, I would go on & on & on repeating the same gripe, whatever it was, retelling it, each time as though it were the 1st. I would stand in the doorway of his room & vent, then walk away, as if that was it, only to turn around & return to carry on the story...This I would do over again, then I'd finish & usually go & lie down,( bed also became the new settee, breakfast, lunch, diner & super table all rolled into one ). My son must truly have thought I was going Bananas. He feared the worst, that much I know.
Those first three months pushed my body to it's limit, Having caught flu, along with a shit load of stress from various orgs,( the council & the phone company ) the fact that I was still grieving my Mothers passing, these & more all reflected in my platelet, T cells & other blood counts All reaching their cut off point,( this is when tx is usually stopped ).
I don't know how or why, but when my 3 month results were assessed, I was deemed well enough to continue...So I did.
MID TREATMENT NIGHTMARES
Having received my 12 week blood results & being given the go ahead, I should have been chuffed that it had lowered my viral load to the point that suggests treatment (TX) stands a chance. Though the Hepatitis c virus was still detected. The fact I had so much stress in my life, along with the TX drugs causing such a battle inside my system, combined with the errors in the clinics methods, didn't inspire the fight in me, though there was no way I was going to quit,( after all this was my big chance. A new beginning ).
Like the morning I opened an appointment letter asking me to attend the cities major cancer hospital. There had been no mention of it at clinic, what was I to make of this, apart from the very worst. Now I don't know about you guys who've done TX, but, myself I prefer not to ring the clinic if I can avoid it. I just try & put my fears to one side & sort it when I next attend. Now this appointment was for a scan & they were to inject a dye into my bloodstream. I arrived on time & was shown to the MRI dept.
There I found two nurses who had no confidence in inserting a cannula into my arm, ( I sensed this & told them of my need for a Dr to gain access via my femme or jugular, they told me a Dr wasn't available & that was an end to it. So a valuable hour of the MRI was wasted & I wandered out into a cold winters night no nearer the reason for this palaver, I can admit I wasn't far from tears, as I walked down the road alone with my fears.
I blew my lid at the clinic on my next visit, their forward thinking regarding my needs was 0. I kicked up a fuss about it. for not explaining to me why ! or preparing me for this procedure, all wasted because they didn't think it through, they knew I had poor IV access. As I mentioned earlier, I had such issues with, district nurses & had done for many years, when I cared for mother, that my faith in such people was poor at best. [update 19.05.12, please understand this blog was written whilst I was on treatment & not myself, though I tell it how it is from my side ]
Anyway, turns out the reason they sent me for the MRI at the cancer hospital, was,that their own MRI was unavailable. They wanted to inject a dye into my vein to monitor the flow through my liver, it never did get done. I'd like to think they learned from that little episode & others with poor IV access have a Dr in attendance for that procedure, let's put it this way I brought it up enough for them never to forget it !, but I wouldn't hold my breath. ( I must say these people have a lot on & we should try to remain on good terms whenever poss ).
[ Update 19.05.12; The cancer hospital have created a system for dealing with the canula insertion using a mini ultrasound scanner that is mounted on a trolley. They have also trained nurses to use their own machines, one of which is now in use in my hepatology clinic. ]
My treatment was to be six months, after the 3 month tests my reaction to the jabs seemed to calm little by little, but your worn down. My hair was falling out, lips were always cracked & sore, there was a rash on my legs that made me scratch them something awful, it even effected the roof of my mouth & tongue, which made eating a big problem, anything salty or sharp like toast, in fact the crust had to be cut from sliced bread. So you adapt, find other foods, form a new routine. We found fresh ginger, mint, lemon & honey, steeped in a cup of boiling water, helped quell the saw mouth, combined with mouthwash prescribed by the clinic & brushing teeth twice a day ( very painful ).
There was also a big issue with dry mouth during sleep, my dentist prescribed a saliva substitute, your teeth are at risk in these dry hours, as bacteria has a field day, it also is associated with the menopause. So there it was, treatment was nearly done, it would certainly be completed, there was everything to play for. The very worst was over & I was able to manage my side effects another month or so & I'd be done with it. The biggest problem was my manic behaviour, this was no better, whilst not violent, there were worries, but hey aren't there always !
JUDGEMENT DAY
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 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 called me back a couple of weeks 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 ! " Why on earth was she ringing me back to ask when I'd done my last jab, with hindsight I now see it was probably to offer extended tx, after all why else ?
My experience with the hep c clinic staff was by now fraught, to say the least. There was one nurse in particular, the Irish one, 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.
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 the Irish one would do, by way of mending fences. She seemed quite friendly 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...The Irish one 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 the Irish one & 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."
You see if a person, in fact anyone who serves you is treating you badly, regularly, then every complaint is a black mark on their record. Whereas if it's a one off then no worries, that's why I did it unofficially 1st time, it's still noted but not on record. We in the UK seem to think to complain is wrong, an embarrassment...This applies to everyone who serves us, it's only wrong if your making it up.
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, Driving test...Most Memorable. With haircut short, tanned & freshly shaved I swaggered into the clinic, took my seat & was duly summoned by the Irish one, 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 that Irish lot be my undoing, I'll show her my true caliber !"
With That thought firmly in mind, 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.
[ Update 19.05.12; I must now add that due to my state of mind during tx made things very hard regarding my relationship with clinic staff. As I later found out these people put up with a ton of shit & are still there for you regardless of issues around who likes who. Our NHS is truely something to be very proud of. ]
Rabbit.
Peace...
Peace...
