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Monthly Archives: May 2013

Must come down…

It was my pre-op yesterday. Well, it was supposed to be. Except my results went through another MDT this week after my surgeon looked at my PET CT scan results for a second time and realised that the thing he could feel invading my bladder isn’t the original tumour – it’s an enlarged lymph node, where the cancer has spread. And so I’m not having the operation. Not yet anyway. I have to have more chemo. Six cycles, three weeks apart. And this time it’s. It’s not the ‘easy’ kind. It’s the real deal hardcore kind. The kind that is going to make me feel really poorly. The kind that will make my hair fall out. The kind that will finally have me singled out in the real world outside of The Christie because I’ll ‘look’ like I have cancer as well as feel shitty inside.

I feel utterly sad. Scared too, I guess. But mostly sad and disappointed because I thought I was near the end of this. I thought all of this would be over after the operation in three weeks’ time. And just as soon as I resign myself to the operation not being as bad as I think, as it being a means to an end – I’m put right back where I started again.

I’ve grieved for all of this before. In October I was told, first that I would be having an operation; then that I was having to have chemo. I grieved the loss of my hair before I’d even had my first appointment. I stopped straightening it to detach myself from it. I joked about how I wouldn’t be having any more ‘bad hair days’ and that I could technically do my hair before I went to bed each day. About how I’d be the fastest in the shower. About how I could get loads of different wigs and decide on a daily basis who I was going to be. And then I was told I’d be getting Cisplatin, that my hair wasn’t going to fall out, and it seemed like a reprieve; too good to be true. And I guess it was, because Cisplatin didn’t finish the job and now I’m back here again, having the operation pulled out from in front of me again and this time being told I’m having Carbo-Taxol (the Taxol part is the part that will make my hair fall out).

I know it’s a means to an end, that this will stop the cancer spreading. Well, actually, I don’t ‘know’ that, again it’s blind faith in The Christie. But I would be lying if I said it didn’t matter about my stupid hair. I’m already thinking of my plan of action. My hair is pretty damn long so after the first infusion, when the Taxol has definitely gone in, I’m going to get it cut shorter. And then when it properly sets in, I’m going to get the clippers out and sort it myself. I just think letting it fall out all over the house would a) be too traumatic and b) make far too much of a mess.

Another hard part of getting this news is the fact that I now have to tell everyone that I’m not having the operation and that I’m not going to be cancer free for a while longer.

I might just not tell them.

I might just get a wig to match my hair, and pretend I’m okay.

I haven’t completely completed everything from my last two lists:

here

and

here

I’ve sent off my Student Loan Deferment forms. That should keep them at bay for another year (see, optimism again, thinking a year ahead!).

I’ve also done a fair bit of de-cluttering. We have our new wardrobes in the bedroom which give me more storage space for non-clothing items, but less space for my clothes in general – so a lot has made it’s way to the charity shop. The maternity clothes I had kept hold of went to my next door neighbour, who is about nine weeks pregnant. And I’ve gone through four years worth of Lucas’ clothes and given them away. Well, most of them. There were a few hold-backs for sentimentality, and a few things I’m going to try on EBay first.

So that just leaves the workshop. We still haven’t worked out what we’re doing in the back bedroom, and I still haven’t got a workbench in there; so the kiln is still in a box in the dining room. Waiting. Probably for a long while as I’m due to go into hospital for The Operation three week’s today.

I have picked up another hobby though, in the meantime: Sewing. Embroidery. Applique. whatever you call it. It happened by accident – I went on a course with the friend who got me through my chemo days by going with me to the resin making thing. She wanted to do sewing. I didn’t really, but I went along to keep her company, and came out of it really relaxed and with a new skill. It doesn’t take up a lot of space, it’s easy to get out and put away with a four-year-old hanging about, so I can see myself doing a bit more of it. Not to mention, it’s also less expensive than the silver-smithing.

That’s not to say I’ve given up completely on that though. I’m booked in in two week’s time to spend a couple of days in a silversmith’s workshop getting one on one tuition. I’m really looking forward to it. I’ve been waiting for about two years to do it – the cost was holding me back as much as fear of the unknown. And now I’m free to do it.

So. What’s new for my To Do List?

1) To create something. To make something, to start it and to finish it, before I go into hospital in three week’s time.

2) To have a good week off on holiday in Aberdovey. To play in the sand, hang out on the seafront, to do the things I couldn’t do when we went there towards the end of the summer last year, when I was too ill to participate, before I found out what was wrong with me.

3) To get my hands on a couple of short-sleeved, long-hemmed night dresses for the hospital.

And that’s it for now.

I’ve always labelled myself as a pessimist. I am known for my pessimism about everything. I guess I always like to think about and consider the Worst Possible Outcome of everything. Because then, at least it doesn’t creep up and bite me.

Recently, even though I have fears and even though I’ve questioned exactly how long I’m going to be sticking around for, I’ve noticed a quiet optimism. And here is further proof that I don’t really believe I’ll die on June 12th:

Texas Is The Reason

Texas Is The Reason

I had a strange conversation with my therapist (she’s specifically a psycho-oncologist but ‘therapist’ will be easier to type for future reference) today. We talked over the last few weeks, because I’ve had to cancel appointments with her due to having to do other things like have CT-PET scans and CT’s with IV Contrasts and Examinations Under Anaesthetic, since my Oncologist found the tumour hadn’t completely gone. I’ve missed talking to her, missed the way she makes me feel like I’m doing ‘OK’. Missed having someone to vocalise my fears to. Today, we talked about whether I should write a Will. And it made me laugh, albeit nervously. Because I’m thirty-six years old, and in one of the possible outcomes of the next few weeks, I’m running out of time to write a Will. I think I’m still in denial about this, even though I keep mentioning it whenever me and C have an argument; that he can have his own way in a month’s time when I’m dead. I saw on the Macmillan facebook feed a few days ago, they were promoting writing Wills, suggesting which services to use, and which were discounted through them. I clicked through the pages, but I still didn’t feel the need to write one.

I don’t really know what this says about me.

Does it mean I am in denial? Does it mean I’m subconsciously optimistic about this? Or does it mean I’m just plain lazy?

I don’t know whether to put it on my To Do List or not.

My therapist says that if I’m wondering whether I need one, then I should probably write one. Just for peace of mind, or whatever. Even though it is a shitty situation for someone my age to find themselves in. I should listen to her, but it seems ridiculous to me still. I’m happy for everything to go to C and our boy. Anything C thinks my mum should have, or anything she wants, I’m sure C will be fine with. So what else do I even put in a Will? Am I supposed to say what kind of funeral I want too? Pick out songs? A venue?

If I start planning to die, then where do I stop?

I started writing on this blog a year or so ago. A lot can change in a year.

Back then, I was mourning the loss of one of my childhood musical heroes to Cancer. Now I have it myself. Back then I was still trying to work out how we would clear our debts. Now we actually have new things, and ‘Savings’. Back then, I was trying to have a baby. Now I’m waiting on an operation in a few weeks to remove the tumour and what is left of my reproductive system post radiotherapy. I know I’m planning for accidents but I think life took this too far.

For the next few weeks at least, life goes on. I’d be lying if I said I wasn’t afraid of the prospect of the operation. I’ve watched far too many episodes of Grey’s Anatomy to not be worried now. I’m not afraid of the after effects. Not really. The organs they are planning to take out are of no use to me now. The fact that I may not even wake up at all worries me, but if that happens I won’t know about it anyway, right? What I am afraid of, is that they may need to take out more than planned. Say, if the tumour is impacting my bladder more than they assumed from the CT scan and EUA. Even scarier than that, though, is the thought that they will open me up and see some kind of godawful mess they can’t fix and just close me up again, resigning me to a far shorter life than I had planned.

Today’s Daily Prompt caught my eye: Personal Space. I’m very aware of personal space and invasions of it. Of my personal space, physically. I will visibly cringe if someone sits right next to me on the couch while I’m writing or eating or doing anything other than watching the TV. If there are other places on the sofa available, they are where other people should sit. So I clicked on the link, and found an entirely different context, but one which – if you read my tiny rant of a post yesterday – is still in the forefront of my mind:

“To what extent is your blog a place for your own self-expression and creativity vs. a site designed to attract readers? How do you balance that? If sticking to certain topics and types of posts meant your readership would triple, would you do it?”

I started this blog hoping that people would read it, I guess, but really it was just something I wanted to do so that I could write. I never got around to writing about the theme I chose originally. It was supposed to be a blog by a girl writing about how she was trying to get her ducks and debts in order, in order to feel less reckless about trying to have another child with said mess and debts. We stopped using birth control and planned for an ‘accidental pregnancy’ instead. But things never seem to go right for me and although I did get a visitor growing inside me, it wasn’t a baby – it was Cancer instead. Which after Chemotherapy and Radiotherapy has well and truly quashed the baby plan.

For a while, I kept the Cancer part separate. For six months, in fact. I had a separate blog for it. I didn’t want it to be the depressing theme running through this blog. I didn’t want casual readers to search for one thing and then find the big C instead. I don’t know why. I wasn’t ashamed of it, it was nothing to hide. And in the end I found myself posting more and more on this blog and not being in the state of mind to post on the ‘Cancer blog’, even though I was talking about the same thing.

So I merged the two blogs back into this one. And it feels better to me. And it kind of answers the question of whether I’m in charge of the blog or the blog is in charge of me. This is a place for me to express myself, and if people read it, then that makes my day. Anyone who says they wouldn’t like more followers is lying. Making it more niche, having a proper theme to it, yep – it probably would increase traffic. But if I omitted half the things I wanted to write about for fear of people not liking it, then I would be being less honest. It would be fake. And I can’t see the point of that now. Maybe it’s the Cancer talking, I honestly don’t know, but I’m definitely in more of a ‘take me or leave me, I am what I am’ kind of girl these days.

And so is my blog.