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Elizabeth's Treatment Diary

Elizabeth is the partner of Max who was recently diagnosed with hepatitis C. Max has decided to undergo treatment and Elizabeth has kindly offered to keep a diary that may serve as an insight into the emotional and psychological impact that treatment can have upon the family and friends of those doing treatment.

It is important to remember that many patients have quite different experiences with treatment. The Hepatitis C Trust aims only to offer impartial information and does not necesarily endorse the opinions held by these blogs. However, we wish Max and Elizabeth all the best and thank them kindly for sharing their experence with us.

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Week 12 Indiscernible. Imperceptible. Undetectable
30 April 2012
The walk from the car park to the hospital waiting room had already taken its toll on Max who was breathless as we arrived to book in at the reception desk. We were ushered to the waiting area and scanned the room for vacant seats. In the corner of the waiting room, the well-dressed woman devoured the pages of her book quietly, whilst the man next to her slumped against the wall snoring, mouth agape. Every few minutes a doctor would bellow the name of a patient and they would dutifully drag themselves off the seat from which they had temporarily welded themselves to and shuffle towards the appropriate door. To my right, a heavily tattooed man repeatedly crossed and uncrossed his legs impatiently, as his phone rumbled to announce a string of message alerts.
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Week 11 Moody Max meets Naughty Night Nurse
20 April 2012
It is often only right that women receive such bad press for their erratic mood swings during their 'time of the month.' Within a stereotypical male-female relationship, the long-suffering 'other half' resigns himself to anticipating and then implementing strategies to deal with the occurrence of such irrational, monthly hormonal imbalances which predictably manifest themselves. However, I think it is high time that those on HCV treatment also received bad press for their moody behaviour. I'm sure I'm not alone in dealing with this. I shall provide an example. I was only this week attempting to capitalise on some alone-time with Max, without the kids being around, or other distractions or interruptions, when i suggested we 'go upstairs' (you know, wink wink - I wasn't asking him to help me clean the bathroom or hoover the bedrooms).
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Week 10 - Better out than in
11 April 2012
It's 2am and I'm awoken from my slumber by a vigorous shaking of the mattress of seismic proportions. By my calculations, it can only be a six-point-something on the Richter scale. I patiently await any aftershocks but none arrive. Once my heart rate has steadied itself somewhat, after establishing that yes, I am indeed alive and intact, and yes, the house remains sturdy on its foundations,
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Week 9 - When red mist descends...
3 April 2012
Max had his consultation with doctor yesterday following completion of 8 weeks in treatment. I recall the doctor starting to ask Max the question, "So, have you been irritable and...." The doctor cut himself off, turned to me and re-phrased the question, "So, has he been irritable and difficult to be around lately?" I wasn't sure what to say. Although I'd noticed his impatience and irritability, it hadn't been as bad as I'd been expecting. Little did I know it at the time, but his words would haunt me later that day.
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Week 6 "Say hello to my little friend..."
12 March 2012
"Yes, seems like a particularly nasty little bug, doesn't it? Must be really awful for those that have it," screeched the woman within earshot, during the coffee break at a conference I was attending this week. Yep, I thought to myself, what an incredible understatement. Delegates were discussing blood borne viruses, and specifically HCV, commenting on the increasingly alarming, global infection rates. I was momentarily stunned at the misconception and ignorance of professionals within the health sector. I believed they would be better informed on the subject. I tried to keep up with the flow of conversation from across the room, aching to be involved in the discussion. Without wanting to march over indignantly and gatecrash their conversation, I resolved to temper my frustrations by digging my fingernails into my forearm, and instead, allowed my mind to wander elsewhere...

You'd be forgiven for thinking that I'm a pococurante person when it comes to all things sexual. Quite the opposite. Feeling emotionally and physically connected to Max is something I seem to be literally craving all the more since he has been on treatment. This is further exacerbated by the fact that I'm acutely aware, as Max is too, that his libido and desire to 'stoke the fire' has decreased in recent weeks. However, that was then, and this is now! During the early hours of the morning earlier this week, Max rolled over and with a cheeky grin illuminating his features, he whispered, "E-liz-a-beth," loaded with the profluent intonation that only couples can de-code together. It could mean only one thing. Arousal. I think it was at that point that I literally jumped on him. And I'm pleased to report that Max's increased virility has left me with a spring in my step, a rosy glow and the sunniest of dispositions. So much so, that the innuendo-laden office banter in work was illustrative of their quiet recognition that I was indeed experiencing the greatest fulfilment at home. Not just intimate fulfilment either; things this week have felt different in relational terms; almost serenely and unwaveringly robust. Max's increased sexual drive (every night we've spent together) has unlocked something within me and feels like it has awakened us both. Whilst I obviously cant speak for Max, it felt as though I released some of the frustrations, stresses and anxieties that had been obscuring things at times. I felt fully connected to him. Now as for drawing conclusions as to the reasons for his change in libido, I'm not entirely sure. After reading so much stuff prior to treatment starting which pointed towards the fact that people on treatment would experience a total lack of interest and 'ability', I was almost prepared for our sexual relationship to suffer in some way. I'm curious to know whether changes in sexual drive will continue or whether this is merely an anomaly. Perhaps it's a sign that treatment is working. Perhaps it's simply associated with shifting hormonal levels. That is to say that I have no idea as to the change but I have no doubt that it is associated in some way.

Reading some of the other treatment diary entries with interest, served to provoke my reflection of the sexual dichotomy that presents itself when in a relationship with someone with HCV. I recalled the raft of warnings that health care staff issued to myself and Max, both prior to treatment and during. "Wear a condom," the nurse would insist. My choice not to is an informed choice. From my perspective, I didn't want to consider an intimate relationship with Max whereby we had to use barrier methods of contraception to reduce the risk of him transmitting the virus to me. In a loving, monogamous and stable relationship such as ours, I wanted nothing more than the freedom to be spontaneous and achieve natural intimacy together. This was something that was fundamentally important to me, despite Max's reservations, no matter how small the risk of transmission was. And we are fully aware of those transmission rates which I believe are under one per cent amongst stable and monogamous relationships, but there is obviously a wealth of statistical information out there. That isn't to say that we are deluded or ignorant, but rather that I have an informed choice and that we are careful about risks of transmission in general, which extend beyond the bedroom. However, I was reminded of the importance of getting myself tested at regular intervals, which is no doubt something many couples in similar situations are mindful of undertaking routinely. Warnings however, continued to manifest themselves once treatment had started; warnings about being careful not to risk getting pregnant whilst Max was in treatment due to risk to any developing foetus. More questions followed, "What form of contraception do you use?" Having a coil fitted seemed to please the nurse. For any couple such warnings are fairly alarming and really puts into perspective the aggressiveness of treatment.

Battling the monotony, Max has actively busied himself endlessly and also seems more aware of his infuriating tendency to procrastinate. As an antidote to the apathy that has afflicted him lately, Max has immersed himself into a virtual world of 'geeky gaming' as I affectionately refer to it. If preventing a global invasion from an alien race provides him with the focus and escapism he needs right now, then it's all good. I like to think that Max is seeking an equilibrium at the moment. Being reasonably established in the treatment routine now, it feels like he is taking preparatory steps to re-start his freelance work (motivating himself whilst fighting through treatment is the utmost of challenges). So, work, rest and play covered....the missing ingredient of this harmonised-paradigm is exercise (and not the aforementioned-bedroom-variety!) When I say that Max has made in-roads on the exercise-front, I mean it literally. In addition to physically demanding tasks that he has completed in the garden this week, he has cycled 25k to see me, then a further 35k the following day to collect his pegylated interferon syringes from the hospital pharmacy. Cycling long distances was an activity that Max was physically comfortable doing on a regular basis prior to treatment (despite HCV-related fatigue at times), so it was wonderful to see him returning outdoors and this seemed to lift his spirits, alleviate his boredom and challenge himself in the process.

At the time of writing, we are awaiting an email from Max's doctor to confirm the results of his week 4 blood tests. Fingers and toes are all resolutely crossed.
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Week 5 Mens sana in corpore sano
2 March 2012
Having narrowly escaped from the quadrennial quagmire of the leap year, another part of my week involved reflecting upon my disturbing dreams in which my dream-state-self would experience total panic at being unable to reach Max, who would be located in an upstairs room and the staircase had melted before me. Jungian-dream-evaluators would surely have a field day with that one! I digress. Sleep continues to be the vital ingredient in Max's routine since embarking on treatment; primarily he needs at least ten hours to feel refreshed and revitalised and it seems as though his sleep pattern is beginning to re-emerge. Physically, Max's physiological reaction to the treatment thus far has been astounding. He has had minimal side effects which seem to become less pronounced as the weeks progress. It truly has been totally surprising.

Apathy is perhaps the notable enemy this week, but 'apathy' in itself is an inaccurate depiction of Max's current disposition. Max struggled to find a meticulous way in which to describe 'the thing' he is currently plagued with. However, from what I understand, it is as though, whilst he can perform perfunctory tasks on a daily basis, he is devoid of enthusiasm, drive or spirit. Using Max's own words, "I just couldn't care less at the minute."

Even stranger is the sense of foreboding that accompanies the 'apathy' - or whatever 'it' is that he is experiencing at the moment. Max turned to me saying, "This is going to get worse. In fact, this is getting worse." On the other hand, Max also suggested that perhaps 'this' is due to an accumulation of monotony coupled with the absence of mental stimulation (as he has been unable to immerse himself in his work commitments.)

Two days later and Max was back at the hospital for the 'all-important' 4-week blood test which will reveal whether his treatment is working. After clarifying my comprehension of all the facts, figures and hypotheses involved in all this with Max, it is my understanding that the most positive outcome would be for this blood test to reveal that the virus is no longer present; a requirement would be that the virus must not be detectable at week 12 or treatment would stop. Should Max's results reveal that he has cleared the virus by week 4, it is then a possibility that his treatment could be curtailed and the 48-week marathon could be shortened significantly.

For now we play the waiting game for yet another week until the test results are revealed. At this point it seems pertinent to extend our gratitude and appreciation to the consultant that is responsible for Max's care and whom extends a regard for his patients that goes beyond required duty; even giving Max permission to email him for blood results as soon as they arrive next week, rather than waiting weeks until his next appointment. For anyone reading this that is also involved in the treatment process knows, it's the torturous waiting that is soul-destroying.

And so, I have saved the most jubilant news for last! Max and I enjoyed dinner last night filled with loquacious chatter, after he had returned from his hospital appointment. After facing a barrage of questions, Max took great delight in revealing that he had a log-5 reduction in his viral load by week two of treatment. His inital viral load prior to treatment was 6.5 million, and this had reduced to 1,051 after two weeks! The consultant intimated that he was expecting a log-2 reduction if treatment was to continue progressing, and not any less. The fact that Max appears to have reacted so expeditiously to treatment and has exceeded expectations by a considerable margin, is very positive.

Self-ascultating next to Max as he delivered this news to me, the infusion of sheer joy, relief and gratitude washed over me like a tsunami. I threw my arms around Max and shared an Orphic moment with him, although I can only quietly cogitate the blend of emotions he was also likely experiencing in synchrony, but that neither of us needed to articulate.
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Week 4 - A weighty issue
24 February 2012
Max has kept a close eye on his weight fluctuation since November last year and had noticed that it had been steadily increasing. He initially put this down to his regime of weight training, however his concerns peaked this week with the culmination of the purchase of a pair of bathroom scales and Max appeared set with the conviction of charting his weight, body fat and BMI with a view to losing weight. Yes, you've read it right - my beautiful partner who happens to be on combination treatment whose side effects are particularly nasty, wants to lose weight, when all the evidence out there suggests that weight loss on treatment is an mathematical certainty anyway. One thing I can say wholeheartedly about Max is that he is a very balanced individual; he looks after himself in every sense, and so the puzzle continues to gnaw away at me - why on earth would he be gaining weight? What puzzles me further is the fact that whilst the scales may reflect the incidence of weight gain, Max doesn't appear to have gained weight from my perspective, though he states he feels unhappy with his body. I feel it is also important to point out that Max is categorically NOT the vain type who obsesses about the way he looks; in short, he looks after himself but is in no way steeped in vanity or egotism. He likes to look after himself and respects both his body and mind in equilibrium.
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Week 3 - "To sleep - perchance to dream..."
20 February 2012
To consolidate the events and revelations of this week into a thought-provoking apercus has been a challenge in itself. As a dedicated lucubrator, I aim to finish this blog in a timely manner, thus I shall attempt to wade through the myriad of occurrences and share some of them with you.
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Week 2 The beginning
12 February 2012
Circumnavigating the Hepatitis C-treatment-terrain with my partner, in the secret alliance that we share, it's very rare that we have time to pause and admire the view, so to speak. The journey thus far has been chaotic, without labouring the point further. Over the past 12 months since discovering that Max is suffering from symptoms associated with Hep C, every slight ailment or complaint that either he has innocently reported or that I have absentmindedly observed, simply 'must be the virus' at work. Obviously, this isn't necessarily the case, but it gives you an insight into the way I (or 'we') have been reading into things, then drawing our own conclusions and formulating hypotheses about something we know realistically very little about.
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