difficult rationalising days

i’m not sure why, but the last few days have hit me really hard.  maybe just the reality of what i am facing feels more real, or that i feel isolated, or that i am just really really frightened.   it’s mixed with the idea i need to be Fearless and Brave, when i am feeling like i want to be neither of those things, and the only thing i want is to … you know… not have cancer.

i pretty much just cried all day yesterday.  there were small bits where i was not crying, but the majority was crying.  STRONG! BRAVE! neither.  i am fatigued at this point – not at all from the treatment, which i am extremely lucky to be tolerating pretty much fine with the exception of mild nausea and the to be expected exhaustion, but from the mental aspect of knowing i have cancer. the knowledge of what has been in my body for all this time. it’s overwhelming, and underwhelming.  how could i be so stupid as to not know? how could i have been so lazy as to not insist on a colonoscopy, despite there being really not much need or indication? surely i should have known that my body was doing this?  and don’t give me ‘these things happen for a reason’ about the chance discovery of the liver tumours.  i would have liked if that had happened for whatever reason it happened when it was still easily operable.  that would have been good.

i don’t believe in much. i don’t believe that this is an operation in teaching me lessons about life. that is, of course, not to say that i haven’t learned things – that there aren’t extremely interesting and challenging experiences that accompany cancer that give me an experience i never otherwise would have had.  the outpouring of love from my friends – the incredible kindness of nurses – the support of my family (by which i mean my and my partner’s families) – the realisation of mortality in a really intense way, but in a way that everyone needs to face at some time.  this doesn’t make it any less rotten.  this doesn’t make me grateful for the lessons cancer is teaching me. i could have done without these lessons.

so, i made contact with a young-person cancer group today.  by young, it’s for people under 40, as younger adults have far less support from what i can tell – we aren’t children, with the amazing (and needed) support networks, or teenagers – nor are we the more typical age for a cancer patient, so those support networks for cancer patients are different. there’s also no ACT based colorectal/bowel cancer support groups that i can see, anyhow.  i’ve mentioned before the fact that there are rarely other people in the day treatment room who are my age – i’ve seen a few of them now who are on the same days as i am and they stick out to me, as comrades i never speak to.  i am one of those people who smile at the other patients as i walk around on the endless bathroom runs.  but i feel shy of going near the other People Under 40.  i don’t know how to talk about my cancer with other people who have currently are having treatment for cancer, as strange as that sounds. i feel like i talk about it too much, or i dwell on it – while i mostly am just in awe of people who can talk about and dwell on anything other than cancer in the middle of treatment.  i am scared of connecting with people for a range of reasons – for the people who i will get to know and who will pass away – for the fact that statistically, i am likely to be one of the people who don’t see it to the other side of this – for the difficult conversations about the reality of what i, and they, are going through. i think i worry that they will actually be Brave and Strong, and the lie that i am either of those things will be clear – i will be faced with their amazing strength and rationality and positivity at facing cancer, while i have to admit that i cried all day and forgot to eat and then was sick because i forgot to eat and then took sedatives early because i couldn’t cope with being awake anymore.

the medical side is becoming routine – i can look at my scans with only a slight flinch, and i can talk more openly with my oncologist without being terrified of what he says.  i am more bored by chemo rather than scared, and i can read what my blood test results say, and understand the different terminology – notice when they are good, notice when they are not.  the reality of surgery is still frightening, but i am grappling with it in a way i think is healthy. one thing that would probably help would be to talk to my liver surgeon again – i know he, and my bowel surgeon are confident that the liver surgery can be performed, and that difference of opinion between them and my oncologist is hard for me to wrap my head around.

one of the biggest things i think i struggle with is the fact that i feel fine.  i have CANCER. i am supposed to be languishing about, in pain, or sick, or sore, or feeling some sort of real, actual side effects of this.  i have virtually nothing outside the haze of the week i am on chemo. the following week, i might be a bit weak and my appetite is poor, but i don’t understand how this translates to suffering from a condition that is going to be with me for the rest of my life, and may very well take it.  i still am stuck with cancer as an intellectual reality rather than a physical one. despite the advancement of the cancer, my rectal tumour doesn’t cause me any discomfort other than a mild back ache from time to time that i barely notice. the liver tumours are completely painless, and the now-gone lung spots never interfered with my oxygenation.  when i was depressed, i knew i was unwell.  i couldn’t escape it. the repercussions for not taking medication were fast and furious.  now?  it’s so completely abstract.  how do i get my head around doctors telling me my liver is possibly inoperably screwed up, while i feel completely normal?

who the hell knows. i’ll see how being involved in some sort of cancer support network goes – i don’t need to stick with it if i find it too hard or not helpful, and i might find it really valuable and  helpful to get me through the darker days that inevitably come. my community nurse told me to stop bashing myself up about bad days – that they are normal, and natural, and that if you need to stay under the blankets, that’s actually ok. i feel guilt-ridden about it though.  my community nurse is amazing. she calls me ‘baby girl’ and gave me a hug after i cried all through her visit.  for context, the community nurse visits the day after i cease chemotherapy to make sure all the small things are going ok – mouth ulcers, circulation, bowel movements, pain, fatigue, and to just be someone who is there.  it’s an extremely important service, and it feels good to have someone check up on me when i’m in a bad point.

i’m planning more outings/time with people in the next week too – just to get me out of the house, and possibly win me a bit more sanity and less stir-craziness.  thank you for people offering to spend time with me; it’s deeply appreciated.

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About elizabeth

various things.
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10 Responses to difficult rationalising days

  1. Cordelia says:

    You rock!

    My only experience with life altering dis ease, is infertility. I never went to support groups, I’m not a group kind of person, but I did go to counselling and I did find lots of support and friendship through infertility forums, and of course knitty chat. Did you know that Ravelry, has a chat room on the knitty board? Maybe we can rev it up in there a bit?

    One day if you want, I can share a short story of a doctor I once worked with. Sadly, there is death, but the way she approached it was good.

    • veritas says:

      are there many of the ol’ knitty pals active on Rav? i tend to see them more on FB than in the group there (which is so HUGE it scares me a bit). the support group i’ve joined is online, through a closed FB group – quite small, just for people in my age group with colorectal cancers, so i’m curious and interested to see how i emotionally.

  2. Meridith says:

    It seems that Brave and Strong is a mantra that everyone repeats in an effort to make it true. You are probably not the only one who doesn’t want to admit that you don’t have superhuman coping abilities. Maybe one or two of the other patients your age would be relieved to be able to share that they are also having a hard time?

  3. Lisa says:

    hey elizabeth i hope the group is something that brings you a bit(or even a lot) of peace of mind in this crazy unexpected situation you find yourself in.only those who are going through it can understand it like you can.also can i get a t-shirt made for you that says Fearful and Scared?i’m all for more truth in this world.it is strange that you rarely hear people admitting fears as though it is a weakness when in fact it is one of the most normal human conditions.it is what it is, not wrong, not right. a propos nothing, i came across this website the other day and thought you might like it.its photos only, some just plain wierd, some hilarious and some amazing.a great time waster.http://consumeconsume.com/ virtual hugs to you from me xxx

    • veritas says:

      yeah, people are frightened of being afraid, and even more frightened of appearing weak, i think. while being honest about fear is actually a fairly ‘strong’ thing to do.

      my nurse told me that there’s some people she visits who are always optimistic. she shook her head and looked confused when mentioning it. i read on the cancer council website that in large numbers of studies, it has been proved that there is no connecting cancer survival rates with a positive attitude. is it wrong that this, on some weird level, actually comforts me?

      the group already feels good, in a confusing, ‘i’m not sure’ kinda way. i don’t know. it’s all hard.

      • Dani says:

        Not wrong on any level at all. Getting better (or not) is not some prize for winning a race or a beauty contest or a suck-it-up-princess competition. It’s dumb luck and good medicine. You don’t have to pledge to be stupidly sunny to get the prize of being well, any more than you get some sort of punishment for feeling scared. It is what it is, and you are who you are, and we here are with you physically and/or virtually, whether you are feeling like Pollyanna or Cassandra.

        Hoping to see you on outing soon.

      • veritas says:

        exactly. it’s why i hate the survival thing. it implies that if i can’t have this cured i am a ‘victim’ of cancer. i will NEVER be a victim of cancer. what i am is someone with a medical condition. and that medical condition is chronic. and my doctors and i will manage it for as long as we can. and one day, it is likely to be past a point where i care to manage it. it’s as simple as that. i intend to have as much autonomy over a process with relatively no autonomy – which, given how cancer treatment works to empower the patient as much as possible, i think i can do in collaboration with my medical team.

        thank you for being with me. it helps so much.

  4. Nine says:

    Feeling like my words are inadequate right now, so I just want to say quickly that I’m thinking of you & hoping you feel better. I hope the support group turns out good.

    • veritas says:

      thanks so much. and words of support are seriously Never inadequate. they always help, they always make me feel better, and they always make me think it’s worth keeping on with all this garbage to see how far i can go. xx

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