intense shifting terrifying emotions

thursday was horrific. actually, totally horrific. i had my oncologist appointment. i actually really liked my oncologist. he seems really lovely, really honest and straight shooting, and that’s what you need. but oncology is frightening, especially with my cancer terror. it is real, and solid, and he asked me questions about what chemo i want to start on, and explained how the whole process worked, and what we needed it to achieve. i was frightened. i still am.

he also told me the results of the PET scan. the scan itself was fascinating – lead lined room, napping filled with radioactive isotopes, and being slowly taken through a tube, hunting for more rogue cancer cells.  unfortunately, they found some – several spots in my lungs.  lung cancer is one of my great terrors.  i started having what would have been the start of an anxiety attack when he said ‘spots in your lungs’ and yelping, ‘i have lung cancer’. he gently explained that i do not, in fact have lung cancer. i have bowel cancer secondaries in my lungs. i know this is different. it is hard to make it feel different. it makes my prognosis different.

but he explained also, it doesn’t change the treatment, and it’s not the concern. the bowel is not the concern.  the liver is. my liver, unless the tumours shrink, will kill me.  there is no if or but about it.  one tumour is pushing on the left artery, and the right artery has been consumed with the cancer. if that tumour doesn’t shrink to an operable size, the secondaries there will kill me.  this is grave, and one of the hardest things to hear.  he couldn’t promise me a timeline.  he couldn’t tell me if i would live two years. it all depends on chemo.  and they can’t tell you that anyway.  he also admitted that, for insurance purposes, i am terminally ill. my treatment, as they currently plan it, is not curative. they don’t see my cancer being cured, but being managed – palliative cancer.  this is yet to sink in.  it sort of has? but it also hasn’t.

however, on friday, after the thursday appointment, we drove to sydney for my Liver Surgeon second opinion.  i have never had such a positive response to a doctor in my life. i felt complete trust in him – faith, and hope, and like we had a direction. he showed me the scans, and i didn’t want to cry. he smiled at me, and told me he had done bigger, and harder liver surgeries.  he said he could show me CT scans of people who lived like i wouldn’t believe! and he said that, although it is high risk, major surgery, he can do it.  he wants to get them to shrink – but he’s got a lot of hope. and he gave me that hope. in the waiting room, i cried a bit. i usually do now. i try to hide it, and i try and look down so people can’t notice that i am shaking, but i am used to nothing but fear, and terror, and one piece of worse news after another. from ‘these are fine!’, to ‘you have secondary cancer in your lung, and you might be dead in two years’, they have been some of the worst moments in my life. and after this appointment, i was smiling, and laughing and thanking him so deeply for seeing me.  he’d already consulted my oncologist, and it turned out the first liver surgeon i saw had actually handed the case over to new liver surgeon, as he was more experienced.

through the next week, i am focussing on holding onto that hope. the sense that after the horror of realising that dying was a real, tangible possibility – mentally sharing out my most precious objects between my loved ones – has shifted to thinking that i might get through this to live at least a bit longer. to see at least a few more things. to be alive. but i know now, and accept now, that this is more serious than i’d probably been clearly stating.  this is, one day, likely to kill me. that day might be in the next few years, or ten years, or 20. it is unlikely to be a short time, and unlikely to be a long time.  but this isn’t good. at all.  we are all dying – it’s not just me – but i know how i am dying in a real tangible way, and i know what my body is doing to itself. this is heartbreaking and liberating.

sydney, by the way, was lovely. a beautiful roast with Alex’s aunt, meeting an adorable puppy, an incredible Japanese meal, and some time in a house that i love.  i felt surrounded by family, and safe.

one request though: i need people to do a few things  for me. please do not tell me details about loved ones dying of cancer.  if you are close to someone who may have passed, i don’t mind details about their treatment, or how you felt. but i’m not ready to hear about their deaths.  i appreciate other people who have had cancer and not passed away telling me their own story, and though i might not reply, it really helps me.  dying of cancer is, right now, a real possibility for me. i am 30 years old, i have stage four cancer – three organs affected, and i am very very scared that i will not live to see 31, or 32.  40 is exciting for me. i hear about someone planning something for next year, and i have a question mark about my head.  my future may be gone.  i cannot, right now, hear about people you know and love who died, in terms of details of their death; what killed them; how it progressed – unless i ask.  it makes me feel sick to the stomach. it makes me have anxiety attacks. i am sure, one day, i will be able to stand before it, and understand that this happens, and it may happen to me, and i will breathe, and i will be frightened and aware. i am nowhere near that point.

the other request i have, which i have made before – please, please, please: do NOT tell me about ‘alternative cures’ for cancer.  you need to understand how vulnerable i am, and people in my position are. imagine it – you are facing dying. right here, right now. and someone shows you an ANSWER! they tell you that everything that you are being told by people who have dedicated their lives to helping people heal – some of the most amazing, gentle, kind people i’ve met in the last few weeks – is a lie.  that it’s BIG PHARMA. that hemp oil or vit. c or not eating sugar, or whatever, is a cure, and you are being a sheeple, by being treatment compliant to scientific studies. i read something today that said chemo was not a cure. you know what my oncologist told me? it’s NOT a cure. you need to remove the cancer. that’s how you ‘cure’ it – and i’m not even sure if the term ‘cure’ is one they use much in terms of cancer – i’m still so new to this.  chemo helps you remove cancer. there are some suggestions that some of these techniques can help – a rare form of childhood brain tumour seems to respond well to hemp oil as an adjunct treatment  – and it’s an amazing treatment for pain, nausea, low appetite, and a rare form of childhood epilepsy. vit c. can help SOME cancers, according to some studies. it doesn’t cure them. and it sure as fuck doesn’t help metastatic bowel cancer – it makes it grow faster from what i’ve read on actual science websites discussing how this works.  and so on. it is really, really hard to see it though – YOUR CHEMO WILL KILL YOU – when right now, i need to sit back, and listen to my doctors.  because they, and not random people on the internet, will be helping me. and i need to trust them. i need to go where they take me, and i need them to tell me what is happening to me, and my body.

i got offered a booklet the other day. it was called ‘when your cancer won’t go away’.  it’s what they give to people with advanced cancer that is unlikely to ever be cured.  i listen to scientific evidence, and people who have studied the anatomy of disease. these sites, these ideas, are written for people without that scientific literacy. i don’t have that scientific literacy, and i rely on people around me who do – a wonderful kind person who is acting as a support for me in the darkness:  my partner: and a dear friend who is a science educator – to help me understand the biology, and the emotions, and the process, and the profession, and where me, and my body fits into all this.  when i see these sites i always have a few moments of a fake hope that i can avoid the THING that’s going into my neck on thursday to take the chemotherapy into my circulatory system easier, with a tube through a major vein (a portacath) – that i can avoid a bag of chemo that will be lugged around for several days – that i don’t have to have these endless scans, the endless tests, the endless needles, the endless discussions of ‘how far i want to go with treatment’, the hovering question of if they can even do enough to my liver to prevent it from failing…. and it’s a lie. and i ask alex, gently, if that makes any sense in terms of human biology, and she sighs and tells me no.  there’s no evidence to support that. we need to see how the chemo reacts before we think about anything else. (she has to repeat this to me, very very often. i could not do this without her).

i understand people are well meaning. and i love recommendations for say, books that give you hope through mindfulness say, things that make you calm, offers of prayers, and offers of rides.  suggestions about alternative ways to cure my cancer are one of the most harmful things, along with dark terrifying stories of how people died in front of you.  i know no one means to frighten me, or upset me, and i hope i’ve not been offensive here.  i’ll be deleting any comments relating to these things which are posted on my blog – just because i’m not comfortable responding.

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About elizabeth

various things.
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17 Responses to intense shifting terrifying emotions

  1. bagatell says:

    Sweet sweet you. I wish I knew what to say. I have had cancer and still don’t know what will help you. I mentioned having a therapist before, but I think you said you have a nurse. Which is marvelous. I first started with mine when having to make big decisions. I think I spent the first session crying for 45 minutes straight. I remember reading books The problem of pain (CS Lewis), When Bad Things Happen To Good People, mindfulness books.

    I also have practical advice, like don’t come home after first chemo and eat a big meal cause you actually feel fine right now thanks. Just … bleh. I did not feel too bad after the first few actually which may happen with yours. And later it was like the flu. Awful but not as bad as I had imagined beforehand. I lived at the time in a very Alternative city, and got lots of quack advice. I always trusted my doctors though, which was maybe easier coming from a nursing background. .. it’s bred into us. They do know what they are doing. If you need me to tell you this over and over I will be happy to. Know also that you are on my mind every day, particularly at 4 am. I know it’s been eons since knittyboard/chat, but still. I would hunt down and punch in the nose the random people telling you unhelpful things if I could.

  2. Jenniferlloyd says:

    Hey there,
    I am amazed at your communication skills – you are doing such a good job of writing these things down so that we can know what is happening to you without having to ask, and also telling us what you need. Well done you!
    The port-a-cath does feel frightening. I remember being frightened. When I went in for day surgery there was a lady there having hers out, and I though that I hadn’t even considered the idea of it coming out – I was just getting used to the idea of getting it put in!

    I’m sitting here at the computer with one dog curled up on the blanket at my feet, another dog curled up in his bed (I had to put it really close to me so he was happy) and two cats sitting next to my laptop. The other four cats are scattered around the lounge room in various places, nice and comfy. There is more to life than cancer. You don’t have to be brave (whatever that looks like) and you will just take one day at a time. You are doing a great job. You have surrounded yourself with fantastic medical practitioners and you’ve put in place some great strategies for managing.
    You are giving yourself the best chance of success, and let’s face it your body is amazing to have managed things so well thus far.
    The Chemo will make you feel yuk, but not immediately. You will get used to having that bloody infuser bag with you. I used to put mine under the pillow. It is just the new norm.

    One of the things I learnt from having cancer was that the world is full of people that go through this, and somehow not being the only person made it feel better.
    Hugs.

    • veritas says:

      i cannot say how useful the infuser-pillow advice is! i tend to freak out about random stuff – ie, steps, how will i lie down after surgery, etc – and ‘where to put the bag’ was one of the big ones. that is a great idea!

      that’s also right about getting it out – and something that hadn’t occurred to me either. it will be an exciting thing to look forward to – being ready to have it out – being at that time, being beyond that.

      it sounds to me like you have the correct number of cats. i dream of a place large enough for that many. i have one on the couch next to me, and the other is scoffing kibble. they sit next to me more – they used to favour my partner’s lap, trying to attack her keyboard while she plays video games (brats)!

      thanks so much for those words. sometimes i just need to be reminded that it’s all going ok. i am doing the best i can. the liver mets aren’t the end of the world, or the end of me, and that there’s still a long road that i am going, and will hopefully come out of.
      xx

  3. veritas says:

    i’m both lucky and well… unlucky with psychologists and stuff – long term psychiatrist, and psychologist, and mental health nurse. they are also setting me up with an oncology psychiatrist to make sure my existing medications will not interact with the chemo. and managing the very real possibility of a bipolar relapse. guess we all just need to hope for the best.

    i’ve got ‘full catastrophe living’ that i’m going to start looking through this week – and getting a book called ‘how doctors think’ to help me understand a bit more about the process and the medical profession – it’s a system that makes so little sense to me!

    i love hearing advice on chemo and how to get through it – my doctors have been emphasising that it’s likely to be nowhere near as bad as it’s made out to be, especially with the sort of cancer i’m dealing with. the only doctor i struggled with was the first surgeon – he was hesitant and not that confident about the surgery. the second one? he just made me feel safe and strong and like i could go on. i have various feelings about all of them, but i trust them. i know what they need to do, and they know how to do it, and i need to do as i’m told!

    all i know so far is that they’ve told me i have a lot of options, and it’s up to me how far we want to go with them. that’s a scary thing to hear, but i think it is actually standard – that we call our own shots on our cancer, and how we need to live, and have it treated. so i am in control. but i sort of just want the doctors to take over, and try and make it better, and for me to do everything i can to make that happen too. but it’s terrifying, and it’s hard to know what to do next, or how to tackle this. especially as i don’t have one physical symptom of what has happened to me.

    knittyboard was one of the best things in that time of my life. no matter how long ago it was, my knitty pals are all close to my heart. thank you.

  4. bagatell says:

    One thing I have used on doctors (and vets) is to ask them, if I were your daughter, what would you advise me to do? In the case of the vet, it was “talk to me like I’m a farmer ” but that may not help you right now. 🙂 But the daughter thing has helped occasionally, when you just want GUIDANCE and less options.

    • veritas says:

      that’s a great idea. doctor was going through two chemo options with me. i was like ‘i don’t actually care, i don’t know what any of these words mean, can you just tell me what would be better?’ he explained most people didn’t at the start, explained side effects, explained what he thought was better, and i was like ‘cool, dude. what you say is better. we’re doing that.’ oncologist = knows more than fine arts and librarianship graduate about oncology.

  5. bagatell says:

    Oh and hoping for the best – DONE.

  6. Cordelia says:

    I wish we still had our old knitty chat.

    /hugs Veritas

    /++++++karma

    Who’s got the foam gun?

    Did you ever make something out go the cashmere laceweight we bought together? I haven’t yet.

    You are brave and you are doing a fabulous job of telling people what you need. That’s huge.

    • veritas says:

      mine got eaten because i inadequately bagged it. i learned an important lesson about cashmere from that.

      i wish we had knittychat back as well. thank god for facebook – i am so glad we all still have each other through there! (though sometimes i forget their usernames, but remember who they are through FB! it’s confusing).

  7. marymac says:

    My chemo advice (having had a port-a-cath and chemo without the cancer bit), is to bring a sweater or a shawl – I always got really cold during the infusions and it’s nice to have something other than a generic hospital blanket. They kept the infusion room rather cold at my doctor’s office – I don’t know if this is common.

    I dreaded getting the port, too, but loved it once it was in and started referring to myself as part cyborg. I am what they call “a hard stick” and after one infusion without the port I decided the stress of outpatient surgery was preferable to the stress of trying to get a needle into my lying (they look easy to access but are not) veins. I actually missed the damn thing when I had sinus surgery last year.

    • veritas says:

      the cold advice is great – i have lots of big knitted Things i can take with me to keep me safe. i like the warmy blankets they bring too though, in hospitals. pre-heated! i wish i had something like that which kept blankets heated all the time.

      i am so excited about the port when i think about how many less back-of-hand needles i’ll get. i am fine with arm needles – totally fine – and i’m tattooed enough that the pain doesn’t bother me. i also have perfect veins – never an issue finding them. but back of hand needles make me bruise terribly – for weeks on end.

      WE ARE THE BORG. YOU WILL BE DECANCERATED!

  8. Bhavana says:

    Hugs.

  9. greenspace01 says:

    I second what bagatell said about offering to punch unhelpful people for you.
    I unfriended one person on FB for telling me I was a sheeple to “believe in” science and those awful Big Pharma monsters (he was against chemo and against psychotropic meds – not having had any mental illness himself, nor anyone in his family with cancer) and downgraded another from close friend to acquaintance. do whatever you need to do to feel safe and comfortable with your choices and the guidance you’re getting from the medicos.

    currently I only have four cats, and no dogs, but I so empathise with your wish to have a big enough home for lots of fur-kids. it was great to move to a place where four cats is a good number, rather than a sometimes irritable crowd. they’re also very warming in winter 🙂

    regarding blanket warmers – do you have an oil-filled electric column heater? I know they usually say Do Not Cover, but I reckon if you don’t cover the vents, and just leave the blanket on long enough to warm it, and only use cotton or wool & cotton mix blankets, you should be right to use it for warming blankets.
    feel free to ignore this if you thinks it’s bad advice.

    • veritas says:

      we are actually Really Lame and don’t use any artificial heating other than our one real weakness – the electric blanket (oh god it’s good!). i actually like the novelty of the Hospital Warm Blanket – it’s one of the few things i enjoy about the whole rotten experience!

      it’s hard, because i have some people i really like and care about who are telling me to use various things to Cure Cancer – who i don’t want to offend or hurt, but who may not understand why this offends, and hurts me.

      two cats and two rabbits is pretty magic. i don’t know if i want to disrupt the balance. the two cats are Best Friends, and i worry that any more might make the two boys sad.

  10. greenspace01 says:

    Yes, if you’ve got a good balance in your furry family now, best not to disturb it. some additions work really well, and some never settle in, and it can take years for the family to regain its equilibrium after a long-time foster sibling is rehomed.

    wow, that’s not lame at all – that’s heroic! not using artificial heating in Canberra. I am truly impressed.
    when I was a kid in Armidale, we had a gas heater in the living room, but our bedrooms weren’t heated, and it was a timber house. we just had hot water bottles and warm jarmies. and cats, once Dad left and we could let the cats sleep indoors.

    that is difficult, if people you care about and want to keep in touch with are unaware of why and how their words are hurting and offending you. I really hope they can take on board what you’re saying, not feel defensive, and just stop saying those things (although they’ll probably keep thinking them).

    sending you lots of good thoughts and wishes for your mind, your truly awesome body (I’m still very impressed that your liver is functioning so well with secondaries squishing its blood vessels), and for peaceful and supportive people all around you.

  11. Kathryn Favelle says:

    I LOVED my port! It made the whole chemo process so much easier. It’s funny how you come to love some of these weird things.

    You are doing an amazing job, coping with all the madness of what’s going on and still sharing it with us. Thank you. You are reminding me of all that I went through (in a good way) and wasn’t able to express at the time.

    On the upside, chemo was a fantastic excuse to eat hot, salty chips. They were my salvation in the days after when the nausea got me.

    Thinking of you. XXx

    • veritas says:

      my cousin described her port as ‘magnificent’. i hope i just have enough appetite to manage chips – the anxiety has wrecked havoc on my capacity to keep food down. any food, pretty much. other than fruit, but not TOO much fruit. and meat. that’s it. urgh

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