it’s all very tumorous

like a lot of people, i was unsure about blogjune – i have no capacity right now to library/archives blog, and my garden is a bit feeble right now, due to me being unwell.

but i’ve decided to take the opportunity to blog about the health problems and trials i’m going through at the moment using this space.

Warnings: i will be talking in detail about invasive medical procedures, dealing with the possibility of cancer, anxiety, and my own reactions to all of this. i tend to be slightly irreverent, and will be including dumb puns about tumours, malignant and benign as words wherever possible.  i’ll also probably make mention of my mental illness, which i’ve previously not used this space for either.  if any of those topics contain triggers, or even just feelings of horror or revulsion for you, this will probably not be the time to follow my happy little plant blog.

Background:  i’ve been suffering from medium-severe nausea for about 4-5 months now.  my GP is excellent and thorough, and scheduled me in for an ultrasound – not urgent, no big issues – she just wanted to check that my gallbladder and stomach were ok, because i’d tested negative for a few other things. i wasn’t troubled – i booked through the public system because it would be free, and it was only one extra week.

the test was an amazing, spectacular, horrific surprise.  i chatted in a fairly laid back manner with the person doing the test – stating at one point, jokingly, ‘you haven’t found anything too dire in there, have you?’ normally – and yes, i’ve had a few similar things to this, always clear, always not an issue… (a few months ago i became convinced i had a tumour in my thyroid for no real reason. yeah, nah man) the doctor tells me it’s fine. this time, she looked neutral and said ‘we’ll just wait and see.’ it’s mildly (and terribly) amusing now to note that she would have been over my liver at the time i said that.  so, i do the test, head out, wait for the films and to go to work.  she returns very shortly, and lets me know they’ll be done soon – which is not normal practice. a few minutes later, out again, to tell me that the specialist just needed to have a look at them a bit more closely.  followed by, a few minutes later, a cup of water and ‘well, the specialist called your GP, and we’ve agreed that you need a CT scan in an hour – start drinking some water.’ follow: petrification.

Next step, CT scan. no indication of what was wrong from the specialists at the scanning place, no idea. none.  i was hoping it was my ovaries, weirdly enough – i have zero interest in having kids, and a family history of ovarian cysts.  go home, freaked out. doctor calls me – the scan place was supposed to have told me to go straight to her.

turns out: my liver is filled with tumours. weird, difficult to identify, freak tumours.  my liver functions fine, the nausea is completely unrelated, andthere’s never been an iota of evidence to suggest there was any problem at all with my liver. in 2011-2012 i was taking a drug called Epilim for bipolar, which impairs your liver function – it actually needs to in order to work properly. so, i’ve had regular liver function testing since then, just to make sure there’s been no permanent damage. there’s never been any indication of a problem.

so, since then, i’ve had a weird few weeks. specialists continually baffled – each scan and test supposed to rule out cancer, and each appointment, the doctors being less assured and confident of it Not being malignant.  it’s baffling – the tumours are very large, and if they are in fact malignant it’s weird too, because they’ve not spread outside the liver.

Now: here’s some terminology for when i’m blogging about this business.  i’m going to avoid using the term cancer to refer to the tumours – because they are definitely cancer.  i didn’t know this but growths in your body that are not supposed to be there are, by their nature cancer. they are just either benign cancer – ie, cancer that does not spread outside the organ it is in, and does not invade the rest of the body, or malignant – which does spread.  my tumours are, regardless, cancers. they just don’t know yet if they are benign or malignant ones.  (NB/ this is probably a terrible explanation because i am a fine art/library student, not a science one). EDITED: i think i got this totally wrong. looks like cancer Does only apply to malignancies, and benign tumours are not cancerous after all. EDITED again: cancer is a really complicated word, and a complicated set of conditions.  i will stick to using benign and malignant, because that’s clearer to me.

the two options are both weird. after several abdominal MRI’s they are narrowed down to two likely options. 1. is the option we want – a rare sort of tumour caused by long-term use of the contraceptive pill/oestrogen.  what makes they weird is that people usually get these from the older varieties of the pill, with higher amounts of oestrogen, and they would not normally be so large in someone my age. in addition, they have unspecified ‘abnormalities’.  frankly, i don’t want to know.  2. is the option we don’t want – a very rare (seriously, insanely rare) type of liver malignancy usually found in paediatric medicine.  which makes no sense because i am 30 – because the tumours are huge – and because there is no evidence of any malignancy in any other area of my body.  and trust me, by now, they’ve check a lot of it.  The largest tumour is around 9cm in diameter, the smallest 4. there are six of them. essentially, behind my right ribcage, there is just a huge mass of terrifying lumps.

Disclaimer: it is exceptionally rare for the contraceptive pill to have this effect.  contact your doctor if you are concerned, but it is not something that happens very often, and only to very special people.

my whole life, i’ve been petrified of having cancer. and i use that in this instance to indicate any sort of growth inside of me.  it kept me up at night as a small child, and gave me anxiety attacks as a pre-teen and teenager. it’s been one of the primary manifestations of my anxiety disorder. i am now face to face with it – literally inside my biggest fear.  i now know that, for years and years, most likely, i have had a major organ in my body, functioning happily, which has been filled with tumours.  for years and years i’ve felt a pressing feeling on  my right lung when i breathe – this is because my liver is grossly oversized, and pushing on every other organ in the area.  my ribcage is out of alignment – i thought it was because i slouched. nope. it’s because the right side is always at an ‘inhale’ position due to the liver pushing it out.  this has been inside of me for years, and my whole concept of my body has shifted.

a dear friend of  mine talked to me about life narrative, which was really important to me in understanding what i am going through in terms of feelings.  we all have an idea of how our life will go – a sort of vague narrative sense of what will happen, how we will live, what we will do. our hopes and dreams are in one level understood in terms of story.  what has happened to me is that my story has very quickly been changed. the things i had thought would impact my life are dramatically different, and something i’d never even though of – in all my hypochondria i had never once thought of my liver.  in all this time of paranoia, i have never once thought that i had an entire organ so filled with tumours that it’s bizarre that it’s working normally.  the first few days of the narrative adjustment were hard. i now need 2/3’s of my liver removed no matter what the scenario. i may be facing ‘cancer’ treatment – radiotherapy, chemotherapy – for a malignancy that few people in the world have even dealt with.  it is going to be long, and painful, and i am frightened of how we’ll keep up with mortgage repayments, and doctors bills.  but i am slowly adapting to my new story. i have factored in this sudden plot twist, and i am slowing starting to really understand that i had no idea what was lurking in my body. there was a whole other narrative being played out in my organs, growing and mutating and pushing against each other, which was completely hidden from me.

i am very lucky right now. i have a partner who is more supportive than anyone could even hope for. i have doctors that are professors at the Australian National University – one who specialises in research into liver cancer. i can, at a stretch, afford all of this.  it was detected at all – given that it was without symptoms, i am exceptionally fortunate that they were found in the first place.  i have support, and an extended friends-as-family network that make me feel loved, and make me feel moved to the point of tears by the support i am getting.  this is hard, but this is now a part of the narrative.  this is where the story is taking me, and there is no denying that, or trying to write out the tumours like this is something that’s not happening to me. i will go with this, and try and walk as bravely as possible.

the next step is a biopsy. this should – theoretically – tell us exactly what sort of growths we are dealing with.  i am terrified – to the point of phobic – by the idea of biopsies.  needles don’t bother me – i am heavily tattooed and it’d be slightly stupid if i was having a le-cry-cry about needing a cannula or a blood test or a vaccination – all of which could save my life.  but biopsies are different.  this will be painful  from the local anaesthetics being done into my abdomen, terrifying for the long needle going inside my liver, and the next day, i’ll feel like i’ve been kicked in the ribs.  and most terrifying of all is that it will give me answers.  that sounds dumb right? i mean, i need answers to go forward. but as it stands now, i can still be confident it’s probably benign, it’s probably going to be a shitty six months of surgery and recovery, and then i will be ok. once i know, i know. and if it is malignant, i am faced with another significant change in my narrative – one much more frightening than a big of abdominal surgery.  fingers crossed, right?