Friday, March 28, 2008

Lonely.....I'm sure there's a song about that

Apologies for the statelite-link pause in blogging - my laptop was in crisis and lost the ability to run on mains power or charge the battery. Whaaaa! I now have a laptop on loan (thank you!) and am waiting for a new one to materialise - well, be delivered. Soon. I hope. Hint hint delivery people.
It was shocking how cut off I felt without you all!!! You were missed! :)
I'm feeling quite lonely at the moment.
My brother came over from the States to visit me for a week - which was lovely. It's really nice when people come to visit me; it's just as nice to see them when I go visiting them, but it's special when they come to me. :) So we did a bunch of touristy things around London - like the Eye and walking along the river and the crack at Tate Modern and the opticians in Hampstead (What? You haven't heard of them? Huh, who would have thought...) I also took him to the hospital with me and he distracted me in the chemosuite when they were taking my bloods (not too much of a bloodbath this time, which is strangely disappointing) and he came along to my clinic appointment where he met my Oncologist (hello!); I tried to tell him that she could be scary but he is made of braver stuff than me (plus it was a rather unexciting appointment - nothing for me to report and not a lot for her to report - although I did get another tick in my notes - do I get a reward if I get a certain number of ticks? A chocolate brownie perhaps?) I was glad that he came along and saw where I was being treated and met the people who look after me. I hope it made him feel that I was in good hands and made sure he didn't feel out of the loop. I think things can be more frightening when you don't really know what's going on. Plus, he has the ability to make me laugh at all sorts of things. He went back to our old home in Leeds for the weekend and came back with this drawing of a cartoon character he'd invented way back when - Soup-Man! Who swam around in soup and had a straw for sucking it up and a propeller for manouveuring and stirring the soup around - it was hilarious - and such a wonderful example of unrestrained imagination.......
We also went to Spamalot and to see the Japanese Drummers - Yamato. Both really good - but the drumming was bloody brilliant - I was really glad he'd insisted we go (even if I did have a worrying few minutes on arrival at the theatre where I thought I might end up spending the evening in the Ladies!!!) You could feel the vibrations from the drums and it was done with such splashes of humour. We were on the 3rd row so had a really good closeup view - although from the side. So if you get a chance to see them - go like a shot!
But now he's gone home again. And I miss him. And it reminds me that I feel pretty lonely here. Which makes me sad. I end up feeling like I'm making up reasons to go out - so I just don't. What's the point? What am I going to do? Going and seeing galleries and shows and the like on your own isn't so much fun. Does this mean I should go back to work? But the Dear Other doesn't really want me to - then I'll spend less time with him and I'll have to be in London more of the time. Plus, I'm not really feeling like working. But sitting around on my own isn't good for me either. But I have no enthusiasm for doing lots of the stuff I *could* be doing. ::sigh:: Whatever.
It's hard. Life is hard at the moment. It's been worse, mind, but still not brilliant. And all sorts of things are casting their shadow at the moment - I have 2 hen weekends and consequently 2 weddings to go to over the next few months. None of them are mine. Out of all of my friends I am the person who has been with their partner the longest - so how come everyone gets to get married before me? And there's a complicated answer in there; involving the necessity for the Dear Other and I to be living in the same house in the same town and currently that means me leaving London for a place where I know even fewer people and have even less to do at my doorstep; not to mention a long way between me and the hospital and my Oncologist and her team. And I'm not prepared to move away from them - I think they're bloody good at their jobs, I think they care fantastically for their patients, I think they're incredibly patient with me (I'm not known for being easygoing) and why would I leave a top London teaching hospital with big name Doctors for one in a Midlands market-town (which is perfectly adequate, I'm sure).
So, no, I'm not the one in the flouncy dress (not my style anyway - I'd probably be a bit more imaginative and personal. Plus, I currently couldn't wear pretty shoes because my feet would die and fall off - getting married in trainers wasn't quite the effect I had in mind.) Blah - all irrelevant anyway - apart from the shoes bit - I *will* have to wear shoes to go to other people's weddings. Maybe my feet will die and fall off anyway.
What a long and very wingey post this is turning out to be - sorry about that.
BTW - I'm linked to in a Blogher post for my Letter to My Body post - I'm very honoured but I suspect that it's not the sort of thing people want to read. This is quite a depressing blog at times and cancer is a scary topic - I guess I don't blame you for avoiding it - I understand the discomfort and fear that even the word 'cancer' can evoke; but remember, if you do avoid or ignore this blog, you're ignoring me and I'm real and what's happening to me is real and I'm afraid it doesn't become any less real if you don't read about it......
Time to stop blathering now - thank you to all you people out there who read me all the time, through the good and less good and the frankly awful - you're the tops and it really makes my day when you drop me a line or comment to tell me you're there and then I know I'm not so alone.

Sunday, March 16, 2008

How do I keep from singing?

Well, I've cheered up a bit - but that's not saying much since my inclination to get out of bed very much this weekend has been hovering around the nil part of the scale.
But I have finished slating myself for the time being. You know, you say these things and it gets it out of your brain a bit. For a time, anyway.
What would I say if were able to think something *positive* about myself?

I'd be grateful for the lungs and vocal chords that trained for over 5 years to produce fine sounds.
I'd be grateful for the body I had.
Um, that might be it.
Well, you can't say I didn't try....

The Dear Other is determined to appear in this blog post - now he's telling me I have an evil look on my face since I'm appeasing him. There's no satisfying...... ;)

The end. :)

Friday, March 14, 2008

A Letter to My Body

As per BlogHer:

Dear Body,
I don't really like you and I used to like you and it's not all down to that usurper: cancer.
I used to revel in my body; it looked pretty fancy without much effort, it brought me pleasure, allowed me to feel good. The breasts came in a little early and I could have done without nasty people pinging my brand new brastraps. But perhaps it's good that they did because it gave me a little more time with a full pair before the mastectomy at age 28.

Didn't you know body, that you weren't supposed to let cancer in? That it was a baddie who you ought to have fought? I know I didn't go in for playing cops and robbers when I was a child, was that what you needed to teach you to fight baddies?

You did bad, you let me down, you're responsible for the lopsided mess that is now my bosom and yet you still didn't learn because you let Mr Cancer come back and set up residence in my bones and lung. How did he sweet-talk his way back in? Was a year's worth of hideous treatments not enough to teach you to attack Mr Cancer?

It's so hard to hate you, body, because you are me and hating you means hating me - but I do. I can't really bear to be with myself a lot of the time. I look away from the bathroom mirror when getting into the bath. I struggle over what to wear that won't show off a non-existent cleavage. You've cheated me - because the world out there thinks that women have *two* breasts - it's in the magazines, on the Television, in films, in fashion, it's instilled into every baby being breast-fed; it's on every woman I see walking down the street. You've turned me into the Non-Woman.

And not content with all this, you sweat all the time; you've turned me into a sweating, hot-flushing mess. You insist on punishing me for the lack of hormones - which, actually, is all *your* fault - if you hadn't let the cancer in, *I* wouldn't be having injections to shut down those hormones. And then, perhaps I would feel like a human being with all those aspects that are ruled by hormones. I might *feel* something instead of feeling sad or nothing.

And how can you let Mr Cancer move into my lungs - I'm a singer. I need those lungs. I've trained them and honed their function to fulfil my needs. You *know* how important they are; but you sold me out. I can still sing, but you still dissed me.

How can I stand to live with you when you don't seem to care about me? When you're prepared to let me die? If I could exist without you, body, then I would. Don't you love me? Don't you want to be here? Don't you think I deserve to be here? Am I not good enough? I never treated you badly - there was that broken arm once; but it got fixed, and it wasn't deliberate. I just don't understand you and I want to be that woman I was - I want to walk down the street with confidence, with the knowledge that people look at me and see a beautiful person. I want to enjoy my body again; I want to enjoy being in it, using it and not see myself as a diseased, broken, useless thing. I want to be a woman again - able to do and be the things that make one so. But you, body, have excluded that.
You know what?
Screw you.

Tuesday, March 11, 2008

Chemo tips (with a baked potato side)

I've been getting quite a few hits recently from people searching for 'first chemo treatment' - which is sad (for them, not me).
Hi there if you've reached me by searching for that and I'm so sorry if it's information for *your* first chemo treatment; well, I'm also sorry if it's someone else's first chemo treatment. Either way, I can guess that you're having a tough time. (understatement, I know)
The world is probably upside down now - especially if you're having neoadjuvant chemo (i.e. before any other treatment, like surgery or radiotherapy) in that case, you may have had a week or maybe only days since being told the dreaded cancer words. Or if it's adjuvant (in addition to other treatments you've had) you may be recovering from surgery or radiotherapy.
Whichever, this is a hell of time and chemo isn't going to be easy. I'm sorry to tell you that. You'll do it; you'll get through it, even if you have to claw your way to the end of it; but you'll do it, we do it, I did it - because I wanted to be there at the end to tell the tale. I wanted to be alive.
I don't want to scare or upset you; but I don't think lying is the answer - chemo is hard. It goes on for a long time, which leaches away your strength - mental as well as physical. It can come with side effects which can make you feel pretty miserable at times. A lot of this will depend on what chemo combination you're on. Some are worse than others.
My first chemo treatment was overwheming - it was a new and scary time, in a new and unfamiliar place, with new and unfamiliar people. Not a good combination.
Please, don't run away - take control over what you can.
  • Make sure you have a good support team - take family or friends with you.
  • If you can visit the place where your chemo will be given in advance of your first treatment - then do it. I know you'll not want to, but then it's a bit less stressful when you have to go back.
  • Try to have one specific nurse look after you each time - build up a relationship with them, you'll want someone you feel comfy with and eventually you'll want someone who knows you and your veins.
  • Take a snack or lunch, depending how long you'll need to be there - having your own food, that you like and you know you can eat will always be better than whatever the coffee shop at the hospital has or the dreaded limp sandwiches that they bring round in my chemosuite
  • Try taking an MP3 player or a personal DVD player with headphones - it can help block out where you are.
  • I like crossword puzzles, Sudoku and the like - they're irritating enough to distract me and keep my brain busy - it makes it *much* easier to ignore the other people there.
  • Take a shawl or a wrap - you may have to take off sweaters or cardigans so they can get to your veins for a cannula - the liquids going in can make you feel cold and it's nice to have something warm, fuzzy and fluffy to comfort and warm you.
  • Drink lots of water the day before treatment and enough on the day to be hydrated - it makes it easier to get cannulas into veins if you're not dehydrated.
  • Don't drink too much water on the day because trying to manoeuvre a drip stand to the loo can be challenging; plus, I hate to move around when I have cannulas and tubes attached to me!
  • Do drink (water) when you get home when you can bear to - it'll help to flush all that stuff out of your system.
  • I had a chemo 'uniform' - I wore pretty much the same thing each time. I had a portocath, so I wore a button down the front shirt with a vest top underneath that meant the port could be reached easily without creating modesty problems. If you're having a cannula put in your arm then make sure that your sleeve can be pushed up and left up easily and isn't too tight. Wearing the same clothes each time made me feel in control and it also didn't 'contaminate' the rest of my clothing by associating it with chemo.
  • If your chemo is one that causes nausea and vomiting or diarrhoea, eat what you can when you can - the main thing will be to get something inside you that you can keep down or in your stomach. Diet rules get thrown out the window. If icecream is what works - eat it.
  • Don't be afraid to challenge medical people - make sure they introduce themselves before they start doing things to you; ask what they're giving you and why (if you want to know).
  • If you're given lots of medication (or any) to take at home - anti-sickness, steroids, painkillers, whatever - ask them to write down exactly what you take for what, how often, when, which you can have together and which not. They may tell you these things but you will forget. Be it due to stress or feeling generally crap - make them write it down.
  • No-one likes having needles put in them, but remember you can take control over when you let it happen - they can't do it until you roll your sleeve up and hold out your arm!
I hope that some of this has helped give you a strategy for coping with your first chemo and all the subsequent ones. The experience of having to go and have it done gets better after the first time - you know what to expect, you know the 'good' seat in the chemosuite, you know the nurse that's on your wave-length, they know who you are when you walk in and they say 'hi, how's it going?' and mean it. And all that helps to make you feel a little more in control.
Good luck, I have my fingers crossed for you; drop me a line, share how you're feeling, how it's going - I'm a good sympathiser and I'll listen.

Monday, March 10, 2008


I was given a task, and I've been ignoring it - this seems to be key about me. I don't like feeling like I *have* to do something - even if it's something that I'd be happy to do.......contrary.
I was challenged to write about how I feel about my secondary cancer - how I feel about the cancer itself, not so much about how I feel about having it.
Both of which, to a degree, I feel like saying 'duh, what do you think? I feel crap and I hate it. The End'. But the person who asked me to do this is (well, suggested) is someone I respect so that isn't really the right sort of answer (although she'd accept it :))
Cancer is an old friend. We've been in close contact together before. It may have taken up residence in some new spots but it's still the friend we love to hate. To me, cancer is male - I always think of it as a him - sorry guys. I don't really know why. Perhaps it's because I don't really understand it, I don't get why it's - he's doing this to me and of course, being female, I do believe there is a part of maleness that just doesn't make sense to me (and vice versa of course). I tried to make a deal with Mr Cancer the other day - I pointed out to him that if he continued to grow and spread then he was going to kill me - and then where would he be? He'd be dead too - I pointed out that actually it's in his best interests to keep me going for as long as possible - so no more growing and spreading. I don't know if he listened. He's a contrary thing, like me. Sneaky and conniving. If he'd told me that he'd got my point and was going to do as I suggested then I wouldn't believe him. I can't trust him - he's able to sneak around and set up shop before you even know it. He's no gentleman. He's a con artist. Able to change and adapt at will. But somehow, today, I don't really *hate* him - he does feel like an old friend. Is this me accepting what's happened and is happening to me? Maybe.
Cancer makes me feel a bit of a fraud. This cancer is giving me a get-out-of-work-free card; it can earn me retirement status. But I feel fine. I look fine. Maybe me and Mr Cancer have worked out an accord - a space where we can co-exist. True, I'm blockading him with Xeloda - but it doesn't seem to be killing him; it seems to be placating him. 'Just stay where you are, be content with the parts of me you have already'. A cease-fire. But, I don't know how long he'll be content with that. Perhaps he's really Napoleon and is just sitting there planning out his next move. Playing at the cancer version of 'Risk'. This is the difference between him and me - he's a dilettante ; just toying with me for the fun of it - a game; whereas I am fighting for life. And he won't be a one to send notification of his decision to resume hostilities - it'll be a surprise, sneak attack. An incursion that may not be initially noticed.
Please listen to me Mr Cancer - please let's cooperate. I guess I'll let you have what you've already invaded if we can just agree that that's it; if you'll just be content to not try to expand or increase your homestead. Deal?

Saturday, March 08, 2008

Grumpety grump

Hmm - grumpy old me this evening.
My birthday blood test looked like this:
Mother of all bruises - yes?
In good news, the bone strengthening tablets have been approved, so no more Pamidronate drips and therefore only a bloodtest every 3 weeks - which up until now have been mostly uneventful. This was a deep vein and despite me pressing down on it for *ages* it still made this mess. I looked very dodgy when I forgot about it and rolled up my sleeve when out for dinner on my birthday evening!

In other grumps - I'm annoyed that I'm such a noble, rule-abiding and forgetful person. If I weren't then I wouldn't have arranged to both go out for lunch with a friend *and* take brownies bowling after church parade at the same time tomorrow afternoon. And therefore wouldn't be texting my friend to ask if we can do tea instead, persuading the Dear Other that he wants to come to a bowling alley for lunch since otherwise there will only be two adults for bowling and refilling and printing permission forms since the original ones were for going to the cinema and there are now a different collection time and place and I couldn't bring myself to not have the t's crossed and the i's dotted. I know things will most probably be fine and I will be fussing over nothing - but if something required someone going to the hospital in a hurry (bowling ball to the head?!) and the forms were wrong we'd be in a bit of a hole.
So now I have to be nice to parents and ask them to refill forms.
And I'm annoyed that if I'd *remembered* this was going on before last night then I would have checked the cinema listings and I wouldn't be trying to reschedule lunch etc etc.

And Jane - if you're reading this, *this is not your responsibility* - we all knew you were going to be away and should have sorted it out for ourselves! We're big girls (and supposedly qualified!).

So, I'll be watching bowling tomorrow since I don't think bowling with a lymphoedemic arm and hand is a sensible option....instead of meeting Sarah's new fellow and having Sunday lunch. Must tell her that now!

In other news, my recycled Sari silk yarn has finally arrived (although mine looks bluer in colour, which disappoints me.....). Some of it has been washed and is drying and some more needs to be done. I've read that that makes it softer for knitting with - plus it's got little bits of straw and the like in it and I'm hoping that washing will have removed some of that. My bathroom laundry airer is festooned with lovely yarn :) (this may make having a bath in the morning something of a challenge.....)

Wednesday, March 05, 2008

Happy burfday

Well, happy burp-day to me.
My exciting birthday treat was a trip to the chemo clinic. My oncologist *did* sing happy birthday to me, which cheered me up and I had lots of hugs and birthday wishes from the nurses there and in the chemo-suite. My lymph-node is now granule-sized, if anything......I got a 'well' and a tick on my notes(!) It's feeling oddly like school.....
So. I ought to be jolly cheerful about achieving a new (granular) birthday height - but I'm not. I wish I could have made a big deal about it and asked everyone to come and be with me. What if it's the last birthday? But I feel funny about celebrating being born at the moment to be honest.