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.

Last pills of the First Batch Day 30

I haven't made time to blog for a while, I am feeling quite fatigued and have had some work on that I enjoyed but didn't leave time for much else. A lot has happened -

I had my first 2 week blood test and from that found out that my liver enzymes have normalised and that my viral load has drops 6 million ish to 112. So the Drugs are definitely working.

I have been sent an appointment for the end of the month to have the CAT scan, re the lesion they found at my last ultrasound on my pancreas, and also sent further blood tests to check the health of my kidneys, as the dye they use in the CAT scan is particularly harsh on the kidneys, so they need to be functioning well before the test.

My intuition tells me that if I am to have the Cat scan I want to be in super health to start with and also would like to use herbs, that will protect against radiation,  aid my bodies clearance of the dye whilst supporting my kidneys, so I think that I will wait til after the HnH Direct Acting Antiviral drugs are all finished. It doesn't make sense to me to over load my body with chemical stresses. I have asked fro another ultrasound so that we can monitor the lesion on my pancreas and am having that tomorrow.

I had some reflexology and learnt where the pancreas point it, so am now massaging my foot 'pancreas' and wishing the lesion away!


I read on a forum that potentially we could reinfect ourselves with Hepatitis C whilst on treatment with our own Toothbrushes and razors?? This seems crazy but I have also read that this virus can live for up to a month in dried blood cells outside the body….one super strong dragon able to lie dormant for so long. I am taking the precaution of changing toothbrushes etc. I have long been paranoid of my toothbrush infecting anyone else, especially as I often live communally and one never knows about others borrowing stuff…Today I am going to spend mostly imagining myself healthily and strong.

Day 13

I have had a few days off blogging as my period came and with it a load of brilliant work days, filming about herbal medicine….but also many anxieties and fears surfaced in the background. My head was deep into film scripts and costume changes but playing around in the background where questions bobbing about in the waves.

Why 12 weeks treatment? 



With genotype 3 many people are given 24 weeks treatment, I understand that this is assessed through the fibroscan results and the more fibrotic or cirrhotic the liver is the longer the treatment. 








How effective and accurate is the Fibroscan?

For years, I refused to have the diagnostic liver biopsy that was offered to me on the NHS to determine the health of my liver. My reasoning was mainly that I didn't want to lie on my side in a hospital gown for 4-6 hours, which apparently you have to do because after the big needle, going into your liver and taking out some cells, there is a risk of trauma with internal bleeding…I didn't fancy it. 

Also I couldn't really understand the science in the method, the liver, being a massive large organ. 

How did they choose exactly where to stick the needle?

What if one bit of my liver was worse/better than the other bits?

What would one sample show?

Would they need to do a series of samples to show progression?

What if it was during a stressful time? 
Would that be a different result to a different time?

So I waited until they had a better less invasive diagnostic 
the Fibroscan which uses elastography, a technique similar to ultrasound. But I do not really know how accurate it is. I read on a forum one lady had 3 completely differing readings done within 2 months! This is important as the level of fibrosis determines the length of treatment…


What are the relapse rates after treatment? 

I have read that patients with my genotype are the most likely to relapse and the virus comes back stronger and resistant to the new therapy. I have also read that in Australia, 16 weeks to 24 weeks is the normal treatment timings for my genotype, with the aim to prevent relapsing. I have an appointment with the consultant on Tuesday, so will have my growing list of questions!


Why have I been sent an appointment for a CT scan?

I got a letter in the post inviting me to come and have a CT Scan, I assume this is to investigate further the 'thing' on my pancreas…So I started to research CT scans - computerised tomography scan uses X-rays and a computer to create detailed images of the inside of the body. 

I don't really want any radiation via the X-ray as I personally do not like the idea of this - I don't even have a microwave, another thing to discuss with the consultant.

Do I start preparing for the idea of having pancreatic cancer? NO NO NO (I can hear Amy Winehouse singing this for me!)
It is a benign cyst that I have had since birth in my mind….

We were meant to travel to a mates wedding this bank holiday weekend, I delved deep into my inner wisdom and listened to the fact I needed to be at home, so instead we went out to a local pub with a DJ for a boogie, I felt the need to shake my thang; It was a typical British Town, full of folks getting pissed having fun with their friends, not my crowd, not my scene at all, but I picked out the positives, the music was not my taste, when one track I liked came on - 
D and I cleared the dance floor for it, dancing wildly, with comedy and total release, we drew a crowd, getting lots of whoops n cheers, both of us attention seeking, dance divas! 
After the abandonment I felt fucking mental, I realised that this was the first time I have been out and about and that normally, I take my medicine my HnH, and then go to bed. 
My abdomen felt awful, really tight and I had a sharp pain in my left shoulder, I felt nauseous and needed air, the beer garden was a court yard full of smoking people, no fresh air at all, my head was filled with doubts n fears about health, it wasn't good; so I have decided whilst on this treatment- 
NO GOING CRAZY ON THE DANCE FLOOR AFTER TAKING HnH !!!!