day out to the hospital......

Week 11 of 24

I am premenstrual, feeling crap, lethargic, low mood, joint problems, anxiety, brain fog and irritability which could all correlate with the bloody awful summer we are having! Resolved in my head now to walk forward with the  full 24 weeks of HnH therapy, to clear the bastard virus for good.

I saw a chiropractor yesterday as the tightness around my liver all along my spine was getting to me. I had an initial assessment and he use a crazy diagnostic tool that was first used for astronauts. It looked a little like a large pen with a wet sponge pad, that was placed either side of each of my vertebra to take a reading....interesting.

He then cracked me about and explained a little about posture, my shoulders aren't level and my head is carried to far forward.....He also suggested I took Reishi mushroom.

I would love to take something to lessen the toxicity of the drugs but I am super cautious not to impede clearance or action of the compounds. I asked on a few hep c forums and all the responses were 'NO WAY' do nothing that may potentially impede the drugs. 

I saw my NHS consultant today at Barnet hospital, he made a choice not to support me on this journey with the generic medicine because it is against 'policy'.

So I begin a search for a NHS consultant that will support and guide me through this final 12 weeks....

I phoned the Hep C trust ( a liver charity) and spoke to a lovely person on the phone, he was French and having a really hard time since the Referendum, feeling unwelcome and insecure in the land he has called home for 30 years! I spoke to him for ages about the millions of people who are super happy that he lives here and to try and ignore the racist nutters, but he is feeling scared and shocked, its terrible what is going on in the world really disappointing and a shame. 

He told me that he knew of a potential consultant who would monitor me and gave me her number and name. After googling her i found her email and have just written to her with my fingers crossed....

where to go from here

So I got the result that the virus is undetectable in my blood 

which is amazing news...

I wrote to the Consultant to give him the results and ask his opinion about the lenght of treatment times, I have enough medicines for a further 3 weeks, 12 weeks in total, but there is a 5% chance that i may relaspe within 18 months. According to the figures my genotype 3 is the trickiest to treat and stay 'undetectable'. So if I took 1 more month of treatment it would give me a 3% better chance of staying undetectable, 2 months more medicine 6% better chance of staying undetectable and 3 more months 10% chance....

I feel a little exhausted from being on this medicine, my side effects are headaches, liver pain, joint stiffness, skin lesions and general malaise, nothing too dramatic really but annoying....I have sent off to buy 3 more months of generic treatment from India, through the buyers club...so hopefully it will be here in a couple of weeks....half way through this crazy journey.

I haven't been taking any herbs at all really....feeling deflated and knackered, it seemed like I was at the end of a marathon and now I am half way through....My energy levels are so low that i cannot really work at the moment which is a very strange place for me to be. I love my work and have never had so much time away from it, feels a bit like I am losing parts of myself.

UNDETECTABLE

Today on this wet, grey, mid summer, EU referendum day, I have no virus detectable in my blood. I plucked up the courage to ring the stressed, over worked secretary (who didn't want me to ring her) and at first she told me there were no results in. My heart sank, but I pushed her, I asked for an approximation of when they would get to her. She began to tell me sometimes it can take up to 4 weeks….and then she found them….relief, joy, over-whelming emotions are running through me at this moment…

I rang my SistAs @ Glastonbury and cried, on loud speaker, whilst they whopped and cheered. Then I rang my beautiful son he is 19 years old and I have brought him up in a community of creative, rebellious souls, he is so wise for his years, when I got my original diagnosis he was about 5 years old and I was drinking heavily, taking recreational drugs,  from one day to the next I stopped drinking and taking everything and my personality changed. I remember him noticing and mentioning that I was much nicer, gentler, kinder. Hep C was a gift to me, after the shock of the diagnosis, I was 27 years old, my Saturn return. I changed my lifestyle and discovered myself, became a better mother and learnt that through challenges people grow and develop. 
I have always felt so blessed and lucky. 

Pricing of Hep C Meds Globally

I feel so emotional that I have this chance because of the generic buyers clubs and wonderful people like David Cowley who have made it possible for me to clear this horrid, damaging, killer, virus.

 Not so long ago I was grappling with thoughts and feeling about saying goodbye to my kids and never seeing my grandchildren, emotions that I shoved to one side and refused to let surface. Miracle molecules in pharmaceutical medicines and dedicated teams of biochemists have given millions of people longer lives. I thank all involved for these gifts. I am grateful for the ability to see the complexities of ethics and humanity, my down rigidity in belief systems, smashed….there is no black and white way of seeing the world, no definitive rights and wrongs…just each moments decisions to be taken one by one. 

No judgement, no criticism  Thankfully I have had yoga in my life for the past 20 years a practice to which I owe so much.  

Treatment week 9 of 12 0r 24????

I am living in a limbo land of waiting for results, 8 days ago I had the bloods done, the all important bloods that will determine weather I stay on these Direct Acting Antiviral medicine for another 12 weeks or not…

Because I am genotype 3 (the most aggressive one and hardest to treat) sometimes people are prescribed 24 weeks as protocol, but because I have bought my medicines from India I could only buy 12 weeks worth.

My private Hepatologist suggested that if I was 'undetectable' at 8 weeks a 12 week course of the medicines should suffice. So fingers crossed.

Undetectable means no detectable virus in my blood in the viral load blood works.

So I have a finite amount of time to find out really as the medicine take 10-14 days to arrive in the UK from India and I have 3 weeks left of medicine on my 'altar'…….limbo land it is.

 I phoned and emailed the secretary, she made it perfectly clear in high tones of authority, that I was hassling her. As soon as the results are in she will contact my hepatologist, she has a sticky note on her computer, who would then contact me. BORING

My posse, my tribe, are in a muddy field in the South-west of Britain a place where I normally am this, high summer, time of year.

 My ten year anniversary with my Man yesterday and we haven't seen each other in a couple of weeks and I feel very sad and separate from both him and my 'normal' summer world.

Glastonbury is a beast of a festival, we go each year, creation of our beautiful Space and instillation is something that I have birthed with my Seeds SistA, we too share a marriage that vows were exchanged into 10 years ago. 

Our space offers rest and respite to weary and in need people, herbal teas that we grow and harvest, potions and lotions all administered with magic and kindness. We Mother the masses with joy and care, witchcraft and science and we love it, connecting souls to plants, reconnections with our planet in the belief that in doing so we create social change, rippling out Globally.

The decision to stay at home near my juicer, bed and peace was a no- brainer, on this medication, at this time, where I am delving deep into myself unpicking the fabric of what my physicality has held for over 2 decades, I must rest and recuperate, no unnecessary stress needed but I miss my posse and I miss the tribe.

In 15 years of living in this house I have never been here in the summer months. We always move into caravans and trucks and travel the length and breath of the UK sometimes Europe. I am so lucky to have the garden here to spend time in quite contemplation. As the medicine swipes the virus out of my liver cells, I am clearing unwanted old stuff from my home, my kitchen stripped of many layers of wall paper, ready to be plastered a new, my bathroom scrubbed and polished today the under stairs cupboard is gonna get a going over. This reflection in my home of clearance feels so good at this time and being here alone, completely alone is  both cathartic and alien as I haven’t been alone for this length of time ever.

My symptoms of taking these drugs are now severe stiffness in my spine especially around the liver area, joint aches and pains, mood swings to the extreme of suicidal thoughts one day and ecstatic  joy the next, sad tearfulness and anger in the same breath.

I haven't been self supporting with herbs on a physical level but have them all around my on an emotional and spiritual one, been having reflexology or massage weekly. Although a got pissed off with a couple of therapists one well meaning person, wouldn’t stop talking about ‘weakness’ in my liver after a reflexology treatment. I wanted to shout at her to ‘SHUT UP’ and not use such negativity as I was drinking my water post treatment but that is my own stuff….I was bleeding so super sensitive…I shall speak to her in my own time.

I had planned to finish the medicines and book into a cleansing retreat but after discussion this on a forum realized that potentially these medicines can stay in the system for a long time after treatment finishes still working. Some folks relapse and that is a valid reason not to do any drastic cleanses.

 So I will postpone the Detox until a later date if I still like the idea…in favour of nourishment and perhaps a holiday.

8 week bloods

Today I sat in hospital for 2 hours with a ticket in my hand, number 46. I got to the hospital at 8.45 and it was already teaming with folks who all seemed to be discussing the European vote and 100% of them were pro leaving…I kept my mouth shut and head down, read my book and imagined that my blood was completely clear of Hepatitus C virus.

8 vials of blood were filled.

I feel as though I have more energy, I am less exhausted come the afternoons and I can stay up without feeling that old 'flat' feeling that was my life daily, not so long ago, so all of this is evidence that perhaps the virus has left the building?

I wrote to my consultant to let him know I had the blood work done and he responded asking me how he will access the results. "How the Hell do I know!" So tomorrow I will be phoning NHS facilities to work that one out.

4 more weeks to go and I am the most introspective I have ever been in my life. Normally I am super communicative and full of plans but all I want is to be healthy and clear of this virus, have a happy physical body and a small cyst on my pancreas that is slowly dissolving!

Hannibal Lector and blood red cubicles….MRI

Had the MRI, well that was an experience! Took my BFF since nursery with me for moral support, we had a total giggle attack in the changing cubical of the Royal Free at 8.45am. To start with the cubicle was painted blood red, weird colour choice….

The gown,  I first put on frontwards, so the strings did up and the back, but then noticed a sign on how to put the gown on!!!! The sign explained in detail, how which tie did up with which tie (they are supposed to be colour coded but the colour had long since washed out)…it took us about 10 mins to put this gown on in the blood red intensity….

My mate then had her work cut out helping every other patient  all of whom had difficulty…its like some sort of initiation challenge.

The actual MRI was quite horrific, I was strapped to a board with a belt around my middle, to monitor breathing, another flat board laid onto of my abdominal area, then the technician put headphones on me to help with the noise. The board retracted into a tube about the size of a toilet roll, it was all very stream punk, but fused with a techno Gaba rave, I was physically and mentally shocked a few times by the off beat, repetitive beats all around, so noisy…

I slowed my breathing to deal with the anxiety that I started to feel, my partner, a welder, told me a story about someone he knew who'd lost an eye in his MRI because of a shard of metal from years ago that burst out under the magnetic force…so for some reason that is where my mind wanted to hang out at first, I used my breath to clam and focus on other things. Then a stern voice, with a South African accent, came over the head phones, 'Breath normally I have to take the images on the exhalation and we'll be here forever if you breath like that.' I burst into tears, not liking this one little bit. Calmed myself and endured the rest of the 40 mins imagining that he was actually Hannibal Lector, and I was trapped in a torture chamber….Don't you just love the human mind.

After all that, the results weren't good enough and they have raised a CAT Scan…..so I have decided to wait until I finish the meds in 7 weeks time and will have one then….

virus leaving the body

Had my 4 week check yesterday. The consultation costs £125 each time we meet, the bloods because they will not do them on the NHS cost £300 and the ultrasound another £300….all adding up thank goodness that my parents can help me out. He told me at this 4 week blood check he hopes to see undetectable viral load or at least lower than 15 units, this will determine if I need more time on the meds or not. He also dispelled the myth that Hep C lives for weeks out of the body, he reckoned about 2-3 hrs and he doesn't believe one could reinfect from a toothbrush…..

MRI

A kind Doctor in a grey dress, did the ultrasound yesterday morning, her technician nearly broke my hand with his grip of steel handshake hello! She stopped the scan within a couple of minutes saying that the lesion was still visible but didn't go into more info, she asked me weather or not I have had pancreatitis before and then suggested a CAT scan, I told her I was paying for this ultrasound in the hope of avoiding the CAT scan, to which she immediately suggested an MRI and went off to fill in some forms, I asked if I could have the MRI on the NHS, as they are super pricy and she agreed. She told me not to be alarmed but explained that she has written the words CANCER TARGETED on my notes. I am trying not to be too alarmed…but when the hospital phoned me later that day and booked me in for Saturday morning it felt very scary.

I feel very odd, perhaps I am also premenstrual, the HnH drugs have taken away a lot of my intuitive feelings of my cycle but my app says I am due tomorrow… I feel tearful and soft but have cancelled all my work this week and also my trips for the rest of the summer so that I can totally focus on healing myself as much as I can possibly manage.

So could I have had pancreatitis and just not realised?

The main symptom of acute pancreatitis is a severe, dull pain around the top of your stomach that develops suddenly, I have definitely had that once or twice in the past before, potentially that could be the cause of a cyst in the pancreas…..

Deep breathing, juicing and yoga seem like good plans.