Dilemma and demand

I am experiencing something of a dilemma and, it being a dilemma, I'm not sure what to do. So I'm asking you some questions.
The story is thus:
Last week I was contacted by a magazine belonging to a U.S. cancer organisation who asked if I would be willing to have one of my blogposts highlighted along with a little interview in their publication. I was flattered and possibly a little excited - it was quite a boost to the confidence to have other people consider that my writing is worthy of this; plus I write this not just for me but for other people with cancer or treating people with cancer.
So, I checked out their site to see if I thought they were something that I would be willing to be connected to and decided they seemed OK. I replied with a tentative 'yes' and asked which post they were interested in.
The person replied pointing to the post Truce - 'huh' I thought; I don't consider that one of my best - it's OK, not bad; but not the best. But I thought that would be OK. I was also asked if I would have a problem with them publishing my real name.
I had to think about that one - people I've corresponded with by email will know that 'Sepha' is not my 'given' name; but if I write to you, I will always sign that 'given' name. I'm not trying to fool you, or lie to you - Sepha *is* me, the things I say here are truer because I use that name. If frees me to be *more* honest with you. Sepha dates from when I very first started using the internet and I didn't know how 'safe' it was to tell people who I was; how much information I wanted the world outside of my control or knowledge to know about me - so Sepha was my alter-ego if you like. Years later when cancer struck and I needed an outlet, Sepha was resurrected to be my blogging alter-ego - again, I didn't know how 'safe' or 'sensible' it was to put my whole self out on display and I was aware that not everything I say on this blog is for everyone's knowledge. Some might say, then why are you posting it on the internet? Why not just keep a diary? The answer, I suppose, is that blogging is more than just recording events; it's reaching out to other people, it's searching for common ground and acceptance and in my case, it was searching for empathy.
I *hurt*, I still do, and somehow that hurt was so great that I needed outside acknowledgement of it, affirmation that I was heard. Somehow, trying to make you, out there, understand what was happening to me helped me, still helps me, to bear it; to keep breathing. Knowing that sometimes I don't cry alone is a comfort. I don't do it because I get some delight out of upsetting other people - does that make any sense?
Where am I going with this, you're thinking. I'm going on to explain to you that not everyone in my world knows about my blog. I have never specifically mentioned it to my family (although I have my suspicions that some at least may know about it, may possibly read it); my partner knows I blog but I have never given him the URL; a small number of my in-person friends know about it, most do not; my work colleagues do not know about it; my guides and the majority of my guiding world do not know about it. And in some of those cases, that is absolutely right. For example, I do not think it would be appropriate for girls for whom I am in a mentoring-type position to be aware of my emotional state. I do not think it would be appropriate for my work colleagues to read about how I feel about working; to know my dilemmas about my job.
Why have I not shared it with friends and family? I'm not sure, to be honest. All my life I've tended to be fairly reticent about my feelings, even with close family and friends. In some cases I equate feelings with weakness (of myself, not others). I have a tendency to feel (rightly or wrongly) that when people know how I truly feel then they have me at a disadvantage; they can hurt me, they will think less of me; they will think I am weak and incapable. Logically, when I look at this, I see that in the case of family and friends, this is ludicrous. My family and my friends would *never* think these things about me and these are the people who are important to me.
The other reason that I use to justify this lack of advertisement is that I don't want to make the people I care about, unhappy. I don't want them to be sad. And I feel that the things I write, are sad. Isn't it enough that *I* am miserable without making others around me feel bad too?

Going back to the dilemma - I thought about all of this and I responded saying that I would be OK with them publishing my first name; but I would prefer they didn't publish my surname. In my head I was thinking that I didn't want people I've met or known 'googling' my name and being led to my blog but that I didn't want to hide completely - because that would feel wrong too. I was looking to exercise a little control over the information available about me on the internet. I thought this was reasonable and I felt like I had been asked what I would like; which was good.
My bad .
The response I had in return was that it was the magazine's policy to always publish the full names of their contributors. I was a bit taken aback - as I had read the previous message as one asking how I would like to be represented.
I replied, explaining that I wasn't looking for anonymity, as such; I was looking to control who my blog was read by and how it was found - especially given how honest and raw I am in some of my posts; and that I hoped we could find a compromise.
Well, no, not really was the reply. Apparently not using the full name of a source or using a pseudonym would "imply that cancer is something that is shameful and to be kept hidden".
Wow.
For the record, I don't think those things and I tell most people I have cancer and am not known for pulling my punches in talking about it. I've spoken at a medical conference to doctors about the emotional impact of cancer treatment; I've spoken to various groups of people for one of the UK's cancer charities - and yes, they did know my name. They knew my name because I always say it when I begin speaking. I guess I'm trying to say, I don't see myself as hiding; I see myself as suiting the information about myself for the audience I'm dealing with - from my perspective and theirs. That information is sacred - because it isn't just facts and figures; it's me - it.is.me. It's about *my* body and *my* feelings and what am I if I am not those?
And I felt really sad when I got their response, and a bit angry - because I didn't go looking for this opportunity; they came to me, but apparently I'm only acceptable under certain circumstances. And I would truly debate with anyone who tried to say that what I write means less because of the name attached to it. No-one knows my name anyway; I could say I was Minnie Mouse - it's not like my name is world-renowned and carries some particular authority. My *name* doesn't write these words; it can't type or hold a pen; my name can't even *think* these words; it's the me inside the name that does those things. And you know what? I have many names; my dad calls me one version of my name, my brother another, my partner something *completely* different and in part of my head, and out there with you, my name is Sepha. So, which is the 'real' one? Which one's the authority?
So now I am in dilemma - part of me wants to do this; feels obliged to do this; feels I *should* do this - because maybe this sharing could help someone else get through a cancer experience. Perhaps part of my having cancer is about my learning to share; is about me being the sacrificial lamb, if you like but equally, perhaps that's just a load of codswallop.
So, what do you think? Am I hiding but trying to pretend I'm not? Am I trying to be too controlling? How much do you share about yourself on the internet? Would you be prepared to have your full name out there attached to a link to your blog? I'm not asking what you think I should do specifically - I'm genuinely interested to find out how much about yourself you're prepared to put on the internet. For example, do you have different email addresses for different purposes - like commenting on blogs for instance? Do you put your full name on comments? Do you put any part of your 'given' name on comments?
In the past I've been very nice and asked for your comments; now I'm demanding - if you have visited this blog on more than one occasion deliberately then I want you to tell me what you think - no judging on my part (although I do like being able to respond to your comments by email; so when you don't include that I do feel a bit sad - because often I really want to say 'thanks' or to say more to you) That said; on this occasion I don't mind because I want you to say what you think and if you need to do that anonymously then *I'm* happy for you to do that; if you'd like to use a pseudonym then *I'm* happy for you to do that. Let's talk, to each other about this - I think it's important.
p.s. the person I've been corresponding with on this matter has never been *anything* other than nice in the messages I've had - I simply haven't liked the stance that this publication has chosen to take; so no personal-style attacks please - I won't publish them.

Read and inwardly digest

Doh! Doh! Doh!
I've buggered up my sock *twice* today, *twice* I tell you!
First I overknitted the heels - 42 rows instead of *22* (I thought it was looking a *bit* odd....)
And now knitting the gusset (*hate* that word - yak!) I've decreased every round instead of every other round.....this may be a lesson in
a) read the instructions and
b) follow the instructions once you've read them please
Arghy, arghy, argh!

Frogging for me this evening!!

I'm in the fil-ums

Quite a while ago I was asked to participate in a short documentary film about complementary therapy services offered at my hospital - the Royal Free Hampstead. I agreed, because, as you know, I usually have plenty to say. This was an interesting little film because it was actually made by a film student who was looking at using film in dance and movement and she was interested in the movement of massage as well as its importance.
So she interviewed me and I yabbered on and then she edited it and interviewed lots of other people and came up with her finished product which is now available to view on the hospital website......
I think they've done a bum job of uploading it and it seems to freeze my browser - Firefox - it may be different with other browsers or by downloading it. Do let me know if you have any luck with it or if it's a pain - I'll complain about it then :)

Follow me, follow me down to the wallow

I have an 'upper respiratory tract infection' according to The Princess Oncologist - but it didn't impress her.......I think you have to neutropaenic and have no white blood cell count before you can impress her. In other words, I have a cold and am whingey. Blah - my eyes do not want to be open but if I lie down then I can't really breathe - bummer. Wah!
I'm also supposed to be making quiche Lorraine, brownies and my super-duper, best ever ragu-for-lasagne for next weekend. Oh, and putting the towels on to wash. None of which are appealing massively to me since they would require getting out of bed and I have a cold! Wah! Want to wallow - despite the fact that I can breathe better and would have less heartburn if I didn't recline......
Oh, and we're going to dinner with friends tonight - I'm going to be *such* good company - not. My eyes won't stop watering - note to self: don't wear eye makeup, you will rub eyes and look like a panda all evening......
The Oncologist is now The Princess or Precious Oncologist and I want a t-shirt that proclaims "Your oncologist may be great but mine is a Princess" or alternatively "mine has style". This would amuse her and in my book, an amused oncologist is one who's on your side (my side). Plus, I'm an amusing person; The Dear Other has proclaimed it so.
I made The Dear Other cry - mean ol' me. As you will have noticed, I've not exactly been happy-happy, joy-joy recently and I got cross with him and was shouty (which I *never* do! This is true - I don't do conflict and shouting and getting mad with The Dear Other) and then I got all cry-y and said sad things about Not Being Happy and then he cried because he wanted to make it all better and he couldn't and it made him sad. And I felt really mean and horrid for making him sad because I don't want him to be sad. Wah. Tears all round with an extra helping of guilt on the side for me. I feel a bit better now. Don't know why. Don't know how long it will last.
I have to go hat shopping for my friend's wedding - Sweet Camden Lass has promised to come with me and she doesn't know it but she alone will be responsible for making sure I don't look like a complete 'nana. I trust her implicitly - I also think she knows where to get hats *from*. Me, I'd go to John Lewis and that would be it - and maybe that's the correct place to go, but I'm not really sure myself.

Great big tears

Hello.
Me here.
Still here.
I really don't know what to say.
There's not bad news, it's just the same old overwhelming sadness.
And that crying thing where you lie on a bathroom floor and can't breathe through the sobbing.

I saw old, good friends at the weekend. And I saw photos from my past and I just couldn't deal with it. Photographs of me with this bright smile of *real* contentment and happiness; with eyes that shone with innocence; at ease with myself and the world; with endless possibilities and opportunities and potential - and I could not see myself in her. I feel like my smiles, my eyes are never like that any more - they hold shadows and tears - there is a tension in them constantly. And I feel like I have no possibilities or opportunities - no potential anymore. Any happiness, any laughter is tainted, is qualified.
One photo is burned onto my memory now - a simple one, I'm standing at a friends door - but the smile and the eyes - I look so open, so trusting, so happy. I feel like I've done that girl wrong, I've betrayed her. I've let her down. Destroyed her. And she didn't deserve that - she should have been anything she wanted.
And so I retreated and sat on the floor of a bathroom and wept in the arms of a friend who, by rights, should have been crying in my arms - great shuddering, sobbing tears that shake your whole body - that leave you with those funny, sharp intakes of breath long after the tears have subsided.
I don't want this. I don't want to live with this. I don't want to die from this.
I'm so sorry, I didn't mean for this to happen to you, to me, to *her* - the other me. I'm sorry.

Maelstrom

What do you do when you're hyperventillating over lunch, and your hair?
Seriously, I do not know what to do.
Not eat lunch because it's simply too difficult to decide what to eat - when I don't want anything anyway and I'm just thinking about it because it's 'lunchtime' and I'll probably end up with another headache later if I don't eat. I'm not saying that I'm not hungry - I have no idea if I'm hungry or not anymore. I often find myself eating if someone else puts it down in front of me even when I didn't think I was hungry. I *cannot* do anything if someone asks me what I want for dinner later - the answer is 'nothing' and if they suggest things then it makes me feel ill. Not sick - just, sort of sickened - like they've brought up some unspeakable topic. But I'll probably eat it if it's put in front of me. Or some of it. And yet I've still mananged to put back on all the weight I lost with the chemo in 2005. Which is depressing, because that was the one thing I brought away with me from that - at least I'd lost that weight that I could stand to lose.
Food has become the enemy again I suppose.
And I get tied up in a quandry of what *should* I eat, what *ought* I to eat. Lots of fibre and fruits and vegetables are the *shoulds* and *oughts* - which can prove a bad idea if my stomach is heading diarrhoea-wards. But not eating them isn't good for a body either - and mine will tell me in no uncertain terms. Seriously, if I could farm out my digestive tract to some other source, I bloody would.
And my hair, is so long now, and people say it's pretty and it probably is; but I can't even stand to wash it or myself most days. (which is pretty shameful) The room or the water or both is/are never the right temperature for whatever I am. Plus, what's the point of having nice hair when it spends all day and all night pulled back from my face and neck because it makes me hot and claustrophobic? But I'm scared to have it cut off again - which is silly, because it grows really fast anyway - I don't want the curls to go, I don't want to re-adapt to different hair again. And If I have it cut off I want someone one who knows how the hell to deal with ringletty, curly hair. I mean, is bloody brilliant, because there aren't as many people with curly hair out there as there are with straight hair; so it goes without saying that most hairdressers will have more experience with straighter hair. And what if I have it cut so it's not such a mess, then I'll have to stop being such a mess in my dress and everything else. It'll raise the stakes.
And this all seems so miniscule, so irreverant when there are so many worse things out in the world.
What the hell is happening to me? Why does this stuff that would once have hardly caught my attention seem like the end of the world? Why has this combination of things reduced me to standing at the back door hyperventilating? And what does it all mean anyway? beacause if it meant only what it is on the surface then I wouldn't be in a state about it so this has got to be about something else really. So tired now and I've barely been up today.

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.

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. :)

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.

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.

Truce

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?

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.....)

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.
Plah.

Shiny!

An impression of my brain currently:
Lalalalalalalalalala - ooh! Something shiny! Ooh! Something else shiny! Ooh! Something chocolate! Lalalalalalala! Why am I in here? - oooh, something shiny! Damn! Why didn't I do what I just went to do?! Oh, shiny! Grrrrr.

- Please sirs, I want a brain transplant.
- What! [consternation] Ungrateful girl! A brain transplant! I never heard the like!
- But please sirs, it's my birthday next week - so it could be a super gift - I wouldn't even ask for giftwrap.....
- [burble of outrage]
- Ooh, shiny chocolate!

Pah. Grrr. Huh.

Chemobrain strikes again.......

Mental note to self:
It's generally better to turn up at Sainsbury's with your wallet rather than just a stray £5 note in your purse. This will lead to less embarrassment at the tills when you can't pay and will also enable you to take home your shopping and not have wasted half an hour wandering round the supermarket.
M-kay? Have we got it now? Have we realised that self is to be treated like a 5 year old heading out to school on all occasions?

Everyone else who remembered to take their money/wallets etc with them today: Any rethinks on the t-shirt situation yet? I think the Idiot Grrrl is taking over here and I'm losing my sense of humour with her......

Pro-crastination

Stuff to do!! I've got stuff to do!
Am I doing it?
No!
Hahaha!
Why?
Dunno.
It would mean actually getting dressed and not sitting here at the computer.....and you would miss me. (that was an instruction btw)
Tomorrow is the leap year day - hmmmm, what shall I do? It's a bonus day - one ought to do something super surely......but no, I shall be having my pamidronate drip and Zoladex injection and thusly, feeling hot, hot, hot - and not in a good way. What a disappointment!

Would you like to see how the Cheshire Cat shawl is progressing?
Voila!:

Pretties

So, apparently you're not going to let me have the 'Idiot Grrrl' t-shirt....you're *no* fun. Can I have one that says 'Sometime Idiot Grrrl'? No? You're obviously all too nice to me! Thank you. :)

My papa bought me some flowers to cheer me up (I should have taken the picture of them when they were at their zenith - I failed to do so - but I still think they look pretty):

Papa's are pretty great.... :)







I had to shoot off to my Hometown-in-the-North last week to attend the funeral of an old friend's mother - very sad and sudden; but I was glad to be able to support my friend. As I said to her 'of course we [all our old friendship circle] would be here'. The following day I went home - to my old home, our old house. And just walking through the door reduced me to tears - it was the smell you see. It still smelt the same. It smelt like home. I cried for days gone by, I cried for who I was, I cried for the family we used to be - all in the same place. That house felt lonesome - as if it were an abandoned being. It used to be alive and full of us but we aren't there any more, but neither has it become home to some other family. It's a little bit like we just all walked out one day; it's a snapshot of lives. In my room there are part-used bottles of shampoo and toothbrushes - as if I expected to be back at any moment. Similarly, in the bathroom there are some of my mama's perfumes and make-up. When I was younger, a favourite book was "Return to Gone-Away" by Elizabeth Enright - and the story centred around a long shut-up house that was put back to rights; and I loved the descriptions of the house; because it was still full of the belongings of the former owner - it was historical and romantic (I don't mean slushy romance - the other kind). And here, I have my own version of the Villa Caprice (I think that was its' name) - and I find it sad, not exciting.
So, I just walked around the house - it was like I was really seeing the space for the first time in a long time; and the memories were strange. I felt like I was seeing ghosts; echoes of myself; but not me. Like I was a foreigner to myself. I looked at the little things; smelt the distinctive smell inside the drawers of the big...(gosh, I don't know what you call it - but on the bottom it's like a chest of drawers then it has a sloped, fold-down desk-top with little drawers and pigeon holes inside and finally on top of that is a glass fronted cabinet. Anyone know what I mean???) I don't know why it has a particular smell; but it does - and I just opened the top two drawers a crack to smell inside them (why yes, I do do some strange things.....). And I went upstairs and the feel of the banister under my hand reduced me to tears - so familiar and known. I could recognise that feel blindfolded - I would know it. And the height of the steps - they're shallow, shallower than any other stairs I'm familiar with. And I sat at the desk in my room, I shut the door and sat in there for the first time in years - like I spent the majority of my teenage years - and I sat there and conjured up as many memories as I could - and of course I cried some more. I think of those high-school years as pretty terrible, but there were good times too. A birthday sleep-over with a cake that my dear friend, Jo, made for me. Decorating the collar for "Akhnaten" (have I mentioned my Youth Opera days? I don't think I have - I sang opera for around 7 years growing up. We were ambitious - which is why I have the sung the role of Meritaten in Philip Glass's Akhnaten. The majority of the opera is in Egyptian and Hebrew - it's pretty fantastic music though. Anyway, end diversion.) And endless reading - I'll confess I didn't have highbrow reading tendencies - the Chalet School, the Famous Five, Malcolm Saville, Cherry Ames, Nancy Drew.
So, t'was all strange and also cathartic. I've been quite trepidatious about visiting before; but I feel...clearer now....less like it's a weight around my neck. Which is good, because I'm going to have to clear out my room eventually....
But! Have just remembered the point of this story (brain, come back, all is forgiven...) I brought back my rabbit picture. My mum drew it and I think it's beautiful. I don't know why I haven't brought it back long before now - it was as if it had never occurred to me that I could bring things out of that museum...... My mama is so talented, I think you'll agree:

Shakes

Scary,
I woke up half an hour ago to feel like the room was shaking. I've just spent the last half hour trying to convince myself I had had some strange dream but I couldn't get back to sleep and in the end went downstairs to check the Beeb. And, yes, an earth tremor has happened in Birmingham. But I'm not in Birmingham - I'm London, about 100 miles away.....
This from the girl who didn't notice the rather larger earthquake whilst in Peru!!! I've obviously become attuned.
Not sure I'll be getting back to sleep. I'm not actively frightened; I'm just awake now.....
I'm glad there really was a tremor thought - I was starting to think that I'd had some 'turn' and gone a bit funny.

Idiot Grrrl

The Idiot-Girl strikes again.
I am so stupid sometimes.
Sometimes, I think that it's no wonder I have cancer, why should someone who makes idiotic mistakes be here. Natural selection and all that.
Yes, I'm over-reacting and being hysterical and shortly I shall calm down, remind myself that I am not perfect, I have not caused the world to explode in flames and forgive myself somewhat.
But in the meantime I am still the woman who cannot arrive at an appointment that is written down clearly in neat writing, in my diary, on the correct page, written by me, at the correct time.
And if I cannot get something this simple right (it required me to walk round the corner, no more than about 3 minutes, to my GP's surgery - a place I know where it is. All I had to do was put my coat on and go.) then how the hell am I supposed to think of myself as a capable, competent person.
Here I am, contemplating going back to my work and I simply cannot if I can't rely on myself. I catalogue in an academic library. Cataloguing requires accuracy and getting the tiny details right - the tags, the punctuation, the spelling, the dates, all the little details - they've all got to be absolutely correct; because that's the only way you can later be sure that the book you have in your hand is the same as the one in the record. Or that the book you will find in our library is the one you want/isn't the same as another one you've already looked at. You get it right. And I was good at it. I was fucking good at it. And it's not that I've forgotten what to do. Like today, it's not like I forgot how to tell the time, or how to read, or how to walk. My brain just doesn't seem to retain, to remember, to connect things up in the right way. I can know what I'm supposed to be doing, I can think that I'm doing the right thing but then discover I'm not or I haven't. How the hell can I trust a damn thing I do?

So, anyway, I blithely arrived at the GP's surgery to check in for my 4.20pm appointment to be told that my appointment was at 4pm and I'd missed it. And I said 'no, I've got it written down' and fished out my filofax to show and lo and behold, it said 4pm; at which point I started crying (because this is so worth crying over - not). Well, yes it is, for the reasons above and also because I have permission to move to Ibandronate - the tablet form of Pamidronate - the bone strengthening drug I'm on; as long as my GP agrees (and what that means is, as long as they agree to meet the costs of it - well, they don't pay for it, the NHS pays for most of it and I pay the prescription charge of £6-whatever. I guess the local NHS Trust is somehow responsible for prescribing drugs that don't break the NHS bank) Anyway, I wanted to try and get that OK-d before I'm due for my next drip - which is a week on Friday - because of the old then-we-don't-have-to-stick-a-cannula-in-you......but I missed the appointment, her next available appointment is the 12th of March so I'm bollocksed.
This, of course, was also going to be the first time I met her properly as my new GP and now she'll think I'm a time-wasting nuisance. Brilliant first impression - no?
So, stupid, stupid, stupid.
So I cried, and apologised massively and walked home berating myself. It's funny, but since cancer I find myself fairly frequently walking down the street crying and/or talking to myself. No-one has ever yet asked me if I'm OK......
No, I'm not OK; but I'll survive a while longer.
Can I have a t-shirt with Idiot Grrrl on it?

CT results

Thank you for all the hugs and sympathy - they're all appreciated very much. Thank you particularly to the person who elected to remain anonymous - I felt that you had some very wise things to say and an attitude that I would do well to even emulate a little of. You seem to be achieving a state of mind that I haven't found my way to yet but it's something to ponder and I thank you. I hope you got something from sharing with those of us reading and if you're ever moved to share a little more about yourself then I'll be happy to hear from you.

I am incredibly bleary this afternoon - t'was clinic this morning complete with the results from last weeks' CT scan. Needless to say, I've been waiting for the scan for over a month because they have a stupid booking system and kept offering me dates I couldn't do; but since they sent them out by letter it seemed to take a week or more to sort out a date that we could have sorted out in 1o minutes of conversation........ridiculous. So, by the time I arrived this morning I think I'd worked myself up into deciding that the results were going to be bad; so imagine how I felt when I arrived at clinic to discover they were running so late that there were no seats to be had in the waiting area, the corridor was full; it was bedlam. I then indulged in a wee panic when the new locum nurse asked me in that sort of telling you way that I had more tests this afternoon - which to my knowledge, I did not. Alert! Alert! Alert! Ratchet up the adrenaline levels a few more bazillion points! Turns out he was talking out of his arse.

So, stable was the diagnosis - under control - not currently taking over my body plus the pamidronate is repairing the bone damage, so, good, OK, alright. That's were we are.