Sunday, 3 February 2008


I received a message today, saying that I don't seem to say much about god.
That's because I never have, don't, and never will believe in god.
I'm pagan/spiritual/agnostic. I can't, and have no desire to label myself any further than that.

The same person then travelled back in by blog, to last August; when I'd had a bit of good news about my liver.. there was no progression. This is apparently thanks to god.
I'm wondering if this person has read about any of the shit I've been through since last August? Brain tumour, brain surgery, months of not being able to walk or see properly, whole brain radiation, progression in my liver, jaundice, feeling too ill to even leave the house now, wishing I was dead?
If the good things are thanks to god, all this awful crap must be thanks to god too. Wow, god must really love me, to put me through hell.
I'm sorry if anyone takes offemce to this, but it's my blog, and I can write whatever I want to write.

None of this is meant to be taken personally by anyone. And while I DO appreciate people praying for me, to whatever force they choose to pray to, I do not appreciate being told that I should thank god for the good days.
I don't appreciate having god thrust upon me. I'd never do that to you, with my beliefs.

Anyway, onto..
Liver, Yellowness, and Hospitals

I saw my onc last week.
The jaundice is being caused my tumours pressing on, and blocking my bile ducts.
He decided to stop the chemo, while we attempt to drain the bile. While my bile ducts are blocked, there's a high risk of infection because of all the gunk trapped in there.
This risk is increased because chemo is surpressing my immune system. So chemo has been stopped for the time being.

On Wednesday, I had a stent put in my bile duct.
This was one of the most horrendous things I've ever experienced.
I was supposed to be under heavy sedation, but didn't feel like I'd been sedated at all. So was all too aware of every god-awful minute of the hour it took.
It literally felt like I was having my stomach ripped out.

There's a chance I'll have to do it all again, to put another stent in the other duct. I've no idea how I'd face that.
Nothing seems to have changed so far anyway. I'm still yellow, itchy, and feel like crap.
I'm so angry with myslef, for taking the decision to try and get on the Tykerb trial, in December.
Chances are, if I hadn't waited for that (which I didn't get onto anyway), and had started the chemo straight away, I wouldn't be in this position now.


jonsynergy said...

Hi Dee, great to see you're keeping up your level of serious wellie, behind your views. On the God question .. I was brought up to be a Jehovah's Witness which I rejected without being too obvious about it. So mum told me about scripture every day and lots of good things, but the stuff I just couldn't accept just went right over my head. These days I am visited by JW's and talk at them for 10 minutes (about all things and in the most convivial way of course) and they always give up and leave. Not sure what the moral of this story is .. I guess its to say that I let most things I disagree with go over my head. Keep strong, smiling! John xx

Anonymous said...

Awww Dee, You poor poor thing, my heart goes out to you.
I know exactly how you feel about "God"
I hope this doesn't upset you or anyone else but my sisters nephew was lost to a brain tumour. It happened a year ago on 14th Feb. Valentines day of all days! He was only 14yrs old and was first diagnosed at 10!! He was in remission when it came back and took his life.
Believe me.. No-one in that family believes in "God" in any shape or form. This is probably not the same reason why you yourself don't believe but everyone is different.
This is their opinion and they are entitled to it.
I do hope you start to feel alittle better soon sugar.
Everyone admires you for sharing you blogg with us. You are entitled to say or feel whatever you want. This is happening to you and not the people judging you.
Love Angel n Family xx

Kitty O'Toole aka Lisa said...

Ayup Pootlechops,

Well for starters don't waste time being angry with yourself for waiting. You know as well as I do that hindsight is the most annoying human trait of all, so please don't beat yourself up about waiting for the tykerb trial. It's fine to say you probably wouldn't be in this situation now, but petal you don't know that for sure. So don't waste any energy on it please. Second as for someone doing the whole 'God Squad' bit on you I wondered if anyone would have the audacity to do that. People are entitled to hold their own beliefs, and not have the interests of others, albeit well-meaning ones shoved down their throats. I agree that it's wonderul that people hold you in their prayers but that is their choice to do that. You haven't requested it. S'funny but my mum told me last week she prays for you every night, and I was so touched by that. Mum was raised in a non-spiritual home, BUT she went to a Catholic school and although she doesn't go to church I would say she has a very strong faith in God, and that gives her comfort-which is after all is what it all should be about. Not about someone saying you should be thankful or any other nonsense that you really don't need right now.
I'll let you in on something too- I've prayed for you, many a time..and I'll continue to do that too. I don't pray to a Christian God, just to whoever happens to be listening at the time:)
Love you babes xx

dippykate said...

Dee - don't blame yourself about not starting the trial - you don't know how long those buggers were resting on your bile duct for and you don't know if tykerb would have made any difference. I wish we could live without hindsight - it is so disruptive and depressing.
I really hope that if they put in another stent, they will give you a different sedation - there are plenty to choose from after all and I can see no reason why they couldn't have given you something to help you whilst they were doing it. It makes me so angry on your behalf.
I'm a useless lump at present - sleeping all the time - think the carbo/gem is not agreeing with me and I haven't got half the secondary spreads you've got to contend with.
Sorry about the person that upset you about god - I was told by a 'christian' that it was god's plan for me to die so that someone else could bring up my children and they would have a better life without me. I just can not get that thought out my head so understand where you are coming from.
Really wish I could do something constructive for you.
sending you all my love and best wishes to you and your family

Wendycrackers said...

Dee, just to echo what Kate said... when I had a stent put in I had to have it done under general anaesthetic (I didn't react very well under normal sedation) and I've never had any problems. I too pray for you sometimes (and for Kate too), I hope you don't mind, but I just want you to get better and live a normal happy life again

Jane said...

Hi Dee,

Just wanted to say hello and tell you that you're in my thoughts, and I greatly admire your courage AND your ability to keep sharing your feelings in your blog (although if you get too tired to do that, I'd still admire you). I send you my heartfelt wishes for . . . whatever you most need right now. I don't know what that is, but I hope you can find it, and that it will help you feel better. Love, Jane

Sepha said...

Ah Dee,
What a load of crap you've got to deal with....I have to say I have days when I think that any caring God would not put the likes of you or me through cancer.
If it's any consolation (unlikely, I'm sure) I think I would have waited for trial too....I would be (am) grabbing at any chances that might help.
Raise merry hell with them for not sedating you enough. You've got quite enough to deal with without going through extra pain and trauma and I'm always in favour of making these medical types understand a bit more about what it's like.
I hope you'll start feeling a bit better soon and can start the Xeloda again (cuz it's *so* much fun!?)

Anonymous said...

oh Dee, Can't believe that you are going through hell and people have the audacity to be throwing up religion all over the place. I am a spiritual person but have difficulty in believing that there is any GOD out there that would let his/her people suffer so. You have been put through hell and what possible God would do this to you. Sorry but people's insensitivity really makes me angry.
I am so sorry that you have had to endure the painful stent procedure. I hope that it relieves your symptoms and you start to feel stronger.
Please don't beat yourself up about not starting the chemo earlier. Hindsight can drive you mad.
please know that we are thinking about you.

Gob said...

Religion's a wonderful thing all the time everything is hunky dory. Once it all goes pearshaped, like your life has, they fall back on "the lord moves in mysterious ways" load of bloody mumbo jumbo.

Been wanting to talk to you on the MGR board Dee but couldn't think of the words. So I wrote an entry into my blog and tried to think my way through it. Dunno if I suceeded but it's here if you want to read it:

Keep your chin up.

Anonymous said...

Hi Dee
Just wanted to pop onto your blog and let you know that i was thinking of you. You are someone i greatly admire and your courage and spirit in the face of all you are going through is truly inspirational. Hope that the stent will give you some relief. Sorry to hear that it was unbearably painful to have it put in. Have replied to your God question earlier but it came up as anonymous as it was my first time replying and i wasn't sure how to do it.
Sending you loads of hugs

Minerva said...

Hey poppet,
Don't worry about the anger. If it wasn't the trial, it would be the doctors. The anger is because you are so damn angry this cancer is taking over your body, and you have every damn right to feel it.

That stent pain is inexcusable. How could they do it to you. Thought of seeing a lawyer yet? Then you really could go anywhere you wanted in luxury!

As for the other questions, Dee, you are dealing with stuff that no one of your age should have to deal with. You have every bloody right to use this place, this page as your bolthole and no one who cares for you has any issue with that.
On the contrary, I think we all recognise that you need a safe haven away from it all.



Garnet said...

Hi Dee. I stumbled on your blog via someone else's (though I can't remember who's now!) and I really like it. I'm 32 with stage 4 Liver cancer. I am also pagan. Reading this post and your brief "about me" synopsis made me think you and I seem to have a lot in common already!
I know how hard it is to not be "thanking GOD" for the good days. Those people out there who do believe can thank god for your good days but they have no right to ask you to do the same. Sure you can thank something, PowersThatBe if you wish. But you don't have to. Somedays I'm just thankful to be on my feet, though I thank nobody but my body, my immune system, whatever.
It's very confusing when everyone around you is sending prayers in your direction. I've found all I can do is appreciate everyone's prayers and deal with it on my own. Spirituality is extremely private and personal. You should never have to answer to anybody about it.
Take care! I've added you to my blogroll and will be back regularly.

Anonymous said...

Dee, just found your blog.
I'm a young bc survivor and atheist.
I get looks like i have three heads when I say I do not believe in god.
I am not shy about writing about atheism on my webpage.

Anonymous said...

Hi Dee,
I am so sorry that you have had to go through the painful stent procedure, but I do hope it provides some relief from the other symptoms.

I think the comments about hindsight being 20/20 and not beating yourself up about the decision you made are bang on. You made the best decision for you are the time - and you did do lots of thinking and research into why you made that decision.

I am agnostic - maybe even athiest but I haven't figured that out yet. What I have figured out is that I cannot tolerate people forcing their views on others. I definitely cannot understand where this "God" fits in with amazing people like you having to suffer.

I do send you all the good thoughts I can, as well as all the positive energy I can. Thank you for finding the strength to write although I agree with someone else who said they would still admire you if you decided not to write often/at all.

Hugs from Canada,

Chao said...

Dee, you are the most courageous person I have ever known in real life. I feel it for you. I believe you will win this battle eventually and miracles are reserved specially for person like you. My best wish for you. Just keep hoping for the best and enjoying the smallest pleasure that is entitled to you. Be grateful for it and it will give you strength. I have seen that you are not complaining much. That is tremendous, for it does not bring you any good.

Anonymous said...

Hi Dee, there's this saying people like to throw in nonbelievers' faces about how "there are no atheists in foxholes". I guess that's to suggest that when we're in mortal danger we "revert" back to some kind of deistic belief system.
Thanks for being living proof that that's not true.
Hope life has gotten more bearable since your last post and I do wish you lots of strength.
And I agree with Minerva, pain in the 21st century is an unncessary and intolerable throwback to the dark ages. M.