Tuesday 10 April 2012

99 problems.

The problem with blogging about an illness is, when you haven’t posted for a while, people begin to worry. And the problem with getting to that stage of a period of non-blogging is that you then start to put pressure on yourself to post as quickly as possible, while – if you’re as hopeless an over-thinker as I – endlessly analysing the reason you’ve found yourself without the impulse to blog. And then, of course, the problem with that is, however good you need that next post to be, there’s no escaping it becoming a diarised round-up of what’s been going on in the last two, three – whoa, three and a half? – weeks. So alas, I fear that’s what this’ll be.

As for interesting, newsy things to tell you from the meantime, I’ve got very little. Chemo is – while hopefully nearing its end – getting more punishing as it pushes on; the cumulative effect of constant treatment since September last year finally taking its toll. That’s a contributor, I’m sure, to my increasing ability to spend most of my time asleep – though of course the old ‘black dog’ has more than its fair share to answer for on that front. The antidepressants are, I think, doing their bit: within a couple of weeks of taking them, I felt somehow more able to, y’know, deal – though it’s become clear to me that there are things the pills can’t fix, such as the mounting number of panic attacks I’ve been having – which lately have, rather charmingly, been resulting in a sudden, projectile vomit (the last of which were at 7.45 this morning, when my husband left for work, and then at 9.07, when I wrote this sentence).

Where those attacks are concerned, we’re back to that old problem of me not feeling comfortable when left on my own. I can’t begin to tell you how much this frustrates me, having always been the kind of person who’s more than happy in their own company; and I don’t know where along the line it became such a gigantic problem: when P had to go back to work part-time, perhaps, or maybe when I realised that the end of chemo isn’t going to magically mean a whole new freedom, given that The Bullshit has rather put paid to me being able to get out and about on my own anyway?

That, of course, is even if this next cycle of two chemos over the next two weeks will indeed be my last for a while… As it did back in February, that all rather depends on the results of an MRI and my latest bloods: if all goes to plan, I’ll have a treatment break until such a time as the cancer comes back (which it will, whether in three weeks or three months), and if all doesn’t go to plan… well, I guess we’ll see about that.

If you think those four paragraphs are the sum total of my worries, however, you’d be sorely mistaken; for everything I’ve whinged about on here in the last few months – what’s going to happen next?, how long have I got?, can I find a purpose in the meantime? – still remains… all at the same time as normal life is continuing, time is moving on, seasons are changing, children are being born, work is getting done, reality shows are multiplying, and the younger residents of Coronation Street are becoming ever more orange.

Amidst all this, then – and regardless of the answers to the questions above – I’ve still got to (because I still haven’t) find a way to live. Today I’ve tried getting up early instead of sleeping til whenever, adhering to the ‘write blog post, hang washing out, get hair done’ to-do list I drew up in my mind last night. Yes, being on my own means I’m pretty much confined to my flat (given that the bone disease means I can’t walk too far, and the brain disease means I’m no longer allowed to drive) but I’ve somehow got to find a way to make the days when there’s no option but to be on my own worthwhile. Otherwise, what’s the point in going through so bloody much to stay alive?

If you’re still with me by this point, you deserve a hefty pat on the back. See, I appreciate that you’ve been hearing this same sentiment, one way or another, for months… and yet I’ve still not cracked the fact of, quite simply, knowing how to live when you’re in a situation such as this.

I’m trying though, whenever I can. Please believe that I’m trying. I’ve booked a small European holiday with P and my folks. I’m making plans to re-do the bathroom and sort out the kitchen floor. I’ve started trying to do some work again – but only a small amount; only what I can reasonably manage – and it’s felt good to be doing something for a purpose. I spent last week in Derby getting a much-needed change of scenery and spending lovely, quality time with the family I miss so much. And over the Easter weekend P and I saw friends, went for dinner, hung out like a normal couple – and loved it. And who knows? Maybe if all the right results end up with me not having to go back for yet more chemo in three weeks’ time, life will look a bit more like this, because I’ll be feeling well enough – hopefully of both body and mind – to maintain it.

The time until that decision is made, however, is going to be inevitably grim. And I think I am – we are – as prepared as we can be for it. I’ve learned not to second-guess these kind of tests, and so instead I’m just hoping – praying, even (and I’m not even sure who to) – for a decent outcome. Because, by gawd, I’d like a break. I’d like people to worry about me less. I’d like to worry about myself less. I’d like – if only just for the summer – to blog about the nicer things I’ve been doing, and I’d like to spend less time juggling – and fretting about, and being panicked into vomiting about – my problems. And, given the circumstances, I don’t think that’s a lot to ask. I just want to make my days good.


camelsandllamas said...

Hi Lisa, I dont know if you are already on the bandwagon but if you're not, one word for you - Pinterest. Get on it! I'd spent so many days recently feeling like i was wasting them and being massively unproductive, until i discovered this little gem. Now I keep finding infinite random crafty things or new recipes or just general ideas on it all the time and can't stop making lists and lists of all the things i want to do. Every time i feel another day slipping away into the realms of "what did you do today? took 4 hours to get dressed, and made toast..." I go to my list and find something that I remember really wanting to do.
Get your inner child making something with glue and paints, its the most fun i've had for ages!

Anonymous said...

Ah, Lisa! You put so many of us to shame. Your writing touches those who read you on so many levels and yes, when you haven't posted to your blog, I do worry and wonder. Your Tweets, however, are reassuring.

Here's to some happy and positive news! Totally rooting for you!

Anonymous said...

Hi Lisa, sorry to hear the Chemo's getting you down at the moment, we all have everything crossed that you do have a break soon and have a lovely little holiday too. With love from friends in Oxfordshire xx

Anonymous said...

Hi Lisa, sorry to hear the Chemo's getting you down at the moment, we all have everything crossed that you do have a break soon and have a lovely little holiday too. With love from friends in Oxfordshire xx

Anonymous said...

Sorry Lisa, had some problems posting.

wb said...

Ee by eck! I'm commenting cos I don't want nutting


Katskia said...

I guess I wasn't the only one who was concerned.

Well, here's the deal. You just do whatever you dang well feel like doing. Write. Don't write. Wash your hair. Or don't. It's your time that you have so graciously shared with all of us, but I get that it's hard to always feel like you have to be carrying the torch.

You are awesome no matter what you do. There's no roadmap through this experience, and you are doing the very best you can.




Anonymous said...

Glad to hear from you and based on this post, i should think you're a better driver than 99% of those on the road! With all due respect for the glue gun, my recent internet find is matchbookmag.com - just gorgeous stuff, no effort required. Totally other topic - from purses to metastatic bullshit - Was reading about a new book called "Enjoy Every Sandwich" - title comes from what Warren Zevon said on David Letterman about his diagnosis. fear the book may be too zen for regular mortals but it made me think of you.

Jane said...

I can't say I would be doing any better than you in the 'knowing how to live when you are in a situation like this' type scenario. One side of me would be 'what is the goddamm point' and the other would be 'but you have to Make The Most of Everything'. Not sure which side would win the battle.

You have a great ability to think and analyse the moment and what it means but of course you don't want to overthink things because that is a danger in itself. One hour at a time I guess is the answer.

And yes, try Pinterest - addictive and fun. Set up some boards and lose yourself in that particular moment.

And I am probly the millionth person to suggest this but I also had cancer related panic attacks and I found meditation really helped. I am a non hippie in many ways and was cynical about its benefits but it really does work. Very sorry to make such a mundane obvious suggestion.

TechieBird said...

Obviously I don't know if it's just the difficulty walking that keeps you indoors, but if it is, don't let it. I have a friend who can't walk or speak (massive brain injury as the result of an accident), he's made it unassisted from West London to Canary Wharf for lunch and drinks with old friends more than once, and regularly potters about the shops where he lives. So if you do fancy it, it is probably doable. (I get that that's a big if.)

Accessible taxis and the newer bits of the Jubilee Line rule.

Pernilla said...

Dear Lisa
I'm here in Stockholm reading your blog, been following you for some years now.

I got my breastcancer back a year ago and the doctors said I only had some months left. But, here I am! The tumours are shrinking, not gone, but still, shrinking.

For me, the important and sometimes really hard work (my day time job nowadays :)) is to collect happy thoughts, to try to find out what makes me feel good and what gives me strength.
If I neglect that and maybe consider it as vain or less important, my struggle with the treatments and being so terribly ill starts taking over and I find it really hard to "come back" again.
Its a crazy lifestyle... Trying to fill your days with some kind of super quality at the same time as you have uncurable shitty cancer... But it is a way to give cancer and death the finger and ... not give in.

Don't ever feel ashamed over yourself, what you need, feel or want. You are the only person who knows what you need in this situation. And that is an important job that you perform together with the doctors.

Wishing you all the best in every possible way


claire leng said...

Hi Lisa
Ive not commented before but have been reading your blog for sometime. I did however have the overwhelming urge to comment just to let you know how amazingly great you are at expressing your words and thoughts, you write exactly how i feel about my life at the moment. I to have incurable cancer (liver) im 37 and married with 2 gorgeous boys. Like you i have begun not to like my own company (i feel such a baby some days) and i also am sick with fear, i really am nothing like i used to be and hate that the f ing cancer has taken this from me. I know i have to make changes though cos i cant let it consume me and im sure i will get there. Anyway just to let you know i can totally relate to your words, i love reading your blog, it makes me smile, so thanks for sharing.
Lots of love and healthy glowing light, Claire xx

lilianavonk said...

Ohhh, honeybunny...

If you're not justified in having panic attacks & depression, I don't know who is, & while I certainly can't tell you to just let go of your anxieties--mine sure have an ironclad grip on my psyche (such as the omnipresent worry over how my beautiful friend in London is doing... ;)--I do think that what you're doing now is EXACTLY what you should be doing. You're living your life, & spending time with the people who love you. That's all anyone can ask, aside from that whole pesky 'staying alive' business. ;)

I'm of two minds re: whether you should compel yourself to write or not. I'm always concerned that the writing I've forced myself to do will reflect just that--it will sound forced. OTOH, though, we're our own worst critics, & I know I invariably feel better after writing, especially about something that I'm passionate about, as it's such a boost to mind+body in terms of expunging angst as well as stimulating neurotransmitter function...plus in your case, you do have an impatient worldwide audience (both a boon and curse, I reckon), so in that respect, I'm going to be wholly self-serving here & encourage you to force yourself to write if necessary. ;)

Pinterest is a lot of fun; I've had the same experience with Tumblr, FWIW. I've connected with people about an incredible variety of topics; for example, it's the first time I've ever had friends who like silent films, so it's like I've rediscovered a part of myself I put away a long time ago. A website that promotes self-awareness AND engages your mind in an entertaining way? There are a helluva lot worse ways to spend your time...but the main thing is that you just keep on keeping on, at which you have already proven yourself to be most excellent. ♥

AnnaGoAnna said...

Hi Hon,

Me here. Shout if you ever need someone to drive/wheel/create (probably havoc)/play (Lisopoly) etc

Oooh and just remember you're fabulous darhling xxx

Wardotron said...

Has Audrey opened a creosote factory on Coronation Street?

Pearl said...

And, with the word 'projectile', you have beaten my recent spate of vomit-y panic attacks into a cocked hat.

You are spectacular, Lisa. Lots of prayers and love coming your way. x

AlwaysStriving said...

sounds like a fair ask to me Lisa - I'm with your friend who suggested Pinterest - if I could crawl in and live in there I would - its so bright and beautiful and little bit aspirational too. Are you getting any counselling for the panic attacks? That would help lots x

GiddyGirl said...

As ever I don't know what to say. What you have to go through on a daily basis floors me (I danced around the kitchen with my 10 month old after reading your post..it seemed appropriate kind of living for the moment)
You're in the thoughts of a heck of a lot of people Lisa so someone - God, the Universe, the magic pixies of nice things..someone! must give you a break. Sooner rather than later too I hope.
Heidi xx