Update from Ninette 2/2/13

Wow, something important is happening here with this blog. So many women from around the world going through the same thing. I wish I was a millionaire so that I can quit my job and start a support group full time. I know that this is just a blog and not a proper site and the whole lay out is not perfect for this type of interaction, but hope one day I will be able to offer something better.

I would like to apologise for the long silence since my last post and would like to thank all of you for your contributions. I did not want to post while I was in a bad space. I will respond to each of your comments individually, but there are a few very important things I need to share with you regarding my experience over the last six months. Please read the whole post as some of it might not seem related at first.

Since about July 2012, I have been going through a rough patch physically and mentally, however things seem to be improving lately. Just to recap, I still have the tumour, now about 8cm. In a tricky spot (right in the middle of left and right lobes), so resection not an option at this stage, just monitoring annually.

This particular post might be more interesting for those of you who have already experienced an Hepatic Adenoma rupture. When I had the rupture (Feb 2010), thankfully the bleed was into the tumour itself causing the tumour to blow up like a balloon to almost 16cm+ (not sure what the size was before the rupture because I didn't know I had it until the rupture!). As you can imagine, the last 3 years all that old blood inside the tumour has been working its way out of my system and the tumour has accordingly started shrinking (from 16cm+ to 8cm). Initially the shrinking was happening fairly fast and it seems it has now slowed down. No doctor ever spoke about or could answer any questions about what I could expect in terms of symptoms after surviving such a large internal bleed.

My physical symptoms after the rupture were actually quite manageable, however, starting July 2012 something changed starting with a day where I suffered from severe chest pain for about 12 mins, it then died down and started again for fewer mins and then went away. It was so severe that I went to the emergency room and by the time the staff saw to me, I was over it and they didnt seem to take it seriously. About a month later, in August 2012, the same chest pain reoccured. This time I didn't go to the emergency room and my husband just tried to help me through it. The pain is a 'crushing' type pain, so severe that it takes your breath away, even difficult to speak and had me crawling on the floor in excruciating pain. Thankfully since then, it has not reoccured.

Besides that, I was experiencing bad days more often and it seemed to be somehow cyclacle (in cycles) and possibly associated with my menses and ovulation as it seems to occur mid cycle and about a week before the period (although this is not set in stone as I have had it outside this time too). On these days I feel super exhausted, nausea in the mornings mainly, fading as the day progresses, excessive thirst, a feeling of air stuck inside me, indigestion, achy limbs and torso (a "deep" type of ache) (more in evenings), change in bowel movements (sloppy foul smelling poo sometimes 3 or more times a day where I used to be more prone to constipation), throbbing pain mainly in my right armpit (once or twice in the left too) coming and going.

I was so concerned by all of this (especially the chest pain) that I had many tests done afterwards (ruled out Hytias hernia). The doc did an ultra sound of all my organs (except heart). He found a grape-sized gallstone in my gallbladder. This is when I started to piece things together myself. I learned that there are two types of gallstones (bilirubin and cholestoral). (I don't have a family history of gallbladder problems.) Bilirubin is a chemical that's produced when your body breaks down red blood cells and bilirubin gallstones are caused by there being too much bilirubin in your bile. My logic tells me that with all those old blood cells (from the internal bleed/rupture) that had to be processed, this would have been the cause of the gallstone forming.

There is something else I realised that might not sound important, but trust me, it is VERY IMPORTANT. When all this started in July, I became a mental wreck again (similar to the first year after the rupture). I thought I was dying and simply could hardly function on those bad days. It was a long hard process but I had to realise that I needed to take responsibility and change my mental state in order to get through it. Doctors could not help with answers so I had to start finding them myself. I started a daily diary which I update religiously every night with my symptoms and my diet. I realised that I was generally very out of touch with my body and that I needed to pay attention more and also learn more about anatomy and how everything works inside the human body. When I figured out the bit about the link with the internal bleed from the rupture and my symptoms, it was such a comfort and I had an explanation which I chose to believe in. This has helped so much, mentally.

The only unexplained thing remaining was the severe chest pain (couldn't write it off to gallbladder attack because it was different to that of other people I have spoken to who've had gallbladder attacks). So, I recalled that I had an MRI four days prior to the first chest pain episode (my period started the day after the MRI and ended on the day of the chest pain episode four days after the scan and the second episode occurred 25 days after the MRI and 20 days after the first episode). Now, some of you may roll your eyes about what I am about to say, but I had to find an explanation that would set my mind at ease. I consider myself to be fairly spiritual and am very sensitive to energies around me. I try to avoid people with bad energy because I tend to absorb that. I also am fascinated by the electromagnetic forces that occur around the Earth and our bodies and generally how this impacts life on Earth. I have chosen to believe that the MRI (in how it works) had an impact on my magnetic field. [I had a full upper chest MRI and I am of small build (5foot4 56kgs), it was done at a public hospital and I am not sure about the competence of the staff, i.e. I was in the machine for a long time.]. Now before you think I have gone nuts, check out this video explaining how an mri works.

Another important revelation I had is just what an impact the long term use of the pill had on me as a whole. If you can imagine, the human body is a perfectly designed machine so complex in millions of ways....everything interlinked. For a young girl to start ingesting pills that impact the very way hormones function in her body (before she has even finished puberty) and continuing to religiously ingest the pills daily into adulthood for decades, can you imagine the impact? When I stopped taking the pill when I was 30 years old, it took two years for my cycle to return. My body didn't know what hit it and I actually felt like I went through a type of withdrawal (in considering the symptoms I had). Finally, my menses came back and, this time, I suffered more with cramps, pms and the bleeding was heavier. I was finally experiencing a real period, not a 'fake' one like I used to have when I was on the pill. This brings me back to the symptoms I have been having lately that seem to somehow be linked to my cycle. I found a forum on the internet and discovered many women who are not on the pill and experiencing the same symptoms. This has also been reassuring in that I now feel that what I am going through is not really something to worry about, but more something to manage.

Now, when I have a bad day, because my viewpoint on it has changed and I have explanations that I am satisfied with, I cope so much better with the symptoms and they actually don't feel so severe. I am so anti-medication, but I have cut myself a break and allow myself a mild pain tablet (paracetomol) maybe once a month if I get a really bad day (I avoid aspirin due to its blood thinning qualities as I imagine this is probably not recommended if you want to avoid a rupture). I also found that gripe water (yes, what they use for babies!) helps with the indigestion type symptoms and I also eat low fat plain yoghurt with probiotic cultures (and also take probiotic tablets from time to time, maybe two a month) and try to drink more water (new rule in the mornings is that I am not allowed my cup of coffee until I first drink a glass of water). I also find that exercise helps... but not just any exercise, it has to be something fun, like cycling outside (not in a gym) or swimming or hiking or going for walks,or if the weather is bad, yoga, dancing in front of a mirror to my favourite songs or skipping rope. Even a few minutes 3 times a week helps. So, to recap, it has helped me to: keep a food/symptom diary, stop feeling sorry for myself and becoming proactive (this is a process and if you are not there yet, be patient, you will get there), eating better, light fun exercise, being more in touch with my body and respecting it / myself (trying to avoid stress), enjoying nature/animals (the best healing therapy ever!), still letting my hair down now and again and MOST IMPORTANTLY, knowing that I am not in control of everything... what will be will be. [When you are down and out, try to change your thought patterns,... it is the one thing we are in control of..(our thoughts). Go sit outside in the sun looking at a tree, then repeat inside your head over and over "I am full of life, I am fearless" or other positive affirmations. When you force yourself to move away from old negative thinking patterns, you will be amazed at how you can reprogram yourself. (Also stay away from watching negative tv programmes/reading negative material and when you are researching on the internet, know when to stop and watch yourself in that you try to learn more about how the body works rather than focusing on trying to diagnose yourself with some dreaded disease!)

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WHAT'S NEXT FOR ME? I am supposed to have annual scans to monitor the tumour but I am not being religious about the timing of this anymore... if it goes a bit over a year, then so be it. The reason I feel this way is because the liver surgeon told me that mine is inoperable, why focus so much on it?

Note: Since I have changed my outlook as described above, my symptoms no longer feel so severe (I guess my focus is not so much on them anymore as they no longer worry me so much, as before when I was being overly anxious and thinking I was dying). I find that the light fun exercise I do and gardening (I'm into growing veggies) and praying/meditation/positive affirmations really help a lot in making me feel good. Keeping my diet balanced and healthy also helps. I realise just how lucky I am, there are people suffering with terrible diseases and all I have is an HA!

Sending all of you strength! Love, Ninette (contact me direct on ninette at mwebbiz dot co dot za