Doom downgraded

Cancel doom - not required today.
All is the same; no progression - Stable still.
It's amazing how tiring it is to sit around waiting and take this stuff in.
So, you may stand down from panic stations - for now. :)
And sadly, I have to start taking tablets again on Saturday ::sigh::
The extra week off has stymied all my holiday planning as well.
We're having a week in Cornwall in September once the schools have gone back. And two weeks in Scotland in August. Lucky, lucky me! Plus *two* weekends in York for weddings. All very pleasing. I'm looking forward to tea at Taylors - I haven't been for *years*. I can still vividly remember day trips with the family to York - particularly with my US grammy; she *loved* York. On one trip I bought my copy of "The Chalet School at War" and read it all the way home on the train......maybe I'll take it along for old time's sake! ;)

I hate CT scans

Well, I don't seem to be able to shake the sense of doom about my CT results. After all this worry; I hope the results *are* back......I think. There's no room in my head for a 'good' result; I'm assuming the worst - just as a safety precaution really, I have nothing to base than on. Other than the fact my body can't handle as much of the Xeloda as it once could. Now perhaps that means I should expect the results to be good - as the Xeloda has obviously been having a strong effect - but is it just the side effects? I don't know; I can't know; I should just wait until tomorrow. But I can't.

Add in to this that the Dear Other's cousin died last week - she had breast cancer but they did not spot her mets fast enough. She deteriorated quite quickly apparently. The Dear Other and I are upset - she was a lovely lady and her son was due to get married in just a month's time. So unfair. We reassured each other that I was not her; and neither of us were going anywhere..... I hope what I said was true. I then had a 'woe is me', 'what is the point?', 'how does religion fit in with this?' with the Dear Other's Vicar - he was very tolerant. Not overly helpful - but what help can there actually be? ::sigh:: At least he didn't run away screaming I suppose!

Then we went to Coton Manor Gardens and saw flamingoes and their lovely bluebell wood
This is their picture - not mine; I'd forgotten my camera entirely....doh!
Very beautiful; very romantic, 'isn't this romantic?' I said to the Dear Other; 'Oh, yes', he said.
But not romantic enough to encourage any proposals apparently.
::sigh::
The bluebells will be gone soon.


Tomorrow - clinic - CT results (probably) - knowing more about what's happening whether I want to or not. Tomorrow - funeral for the Dear Other's cousin. I can't go as I'm at the hospital. Dear Other can't come to the hospital with me and reassure himself. Fortunately for me, my papa will be there with me - thank heavens for papa's! And he's very good at calm and collected - which I need sitting in that corridor.
So, panic stations, all! That's an order!

The solution

Well now, thank you all for your comments on the dilemma of the previous post - it was *very* interesting to read what you had to say and I have to say, for the most part, your comments seem to echo the way I feel about identity and blogging - and that is that identifying yourself and giving others access to your details and your blog was something to be approached with caution. For safety reasons, for sensitivity reasons. Which is exactly how I feel about it. And, quite honestly, when someone like snoskred, whose opinion and experience I have great respect for, says that she would *never* share details like that - I think there's no question left in my mind.
I'm following my instinct here, which, as Dorothy from Grammology quite rightly said, is often the sure-fire test.
So, no article for me. I was disappointed initially, but perhaps it's for the best. I like my readers and who knows what would happen if even more people came this way.....? But I suppose part of me has ambition - sees other folk doing articles or writing for other blogs and websites and thinks 'why shouldn't I?'. That's life, I guess!
In other news, I went to to Boston last week to see Eddie Izzard's new tour - 'Stripped' along with my brother. Fahbulous! Very funny. I thought he was better than when I went to see 'Sexie' live - I was slightly disappointed then. But this, was brilliant. So I was super glad I'd gone and that the feeling unwell that I did for the rest of the week held off until *after* I'd been. Alternatively, seeing Eddie Izzard gave me a stomach upset....... nah. It was the capecitabine. I really did think I'd picked up a bug on the plane because the capecitabine symptoms had been so minor and now I was feeling nauseous as well as having an upset lower digestive tract. But I saw The Precious Oncologist on Wednesday (why, yes, the day after I got off the red-eye from Boston!) she immediately said it was the capecitabine and that I needed an extra week off and it was time to reduce the dosage. I was gutted. I am gutted. It's my aim to keep going as long as possible on each dosage level - because each lowering is a step closer to not having any more options. And I'd hoped to keep going on capecitabine for *years*. (I have *nothing* to base anything about length of time etc on, it's just my arbitrary aim.) So, I've had 11 cycles on 2300mg twice daily. She went on to say that I had gone on at this dosage for longer that any patient she'd ever had and that most people managed 2 or 3 cycles at this dosage before reducing. So, actually, I've done bloody brilliantly. But I still wish I could have kept on a little longer..... but she went on to say that if we carried on at this dose - I'd probably get a few days into the cycle, become really unwell and then we'd have to have longer than an extra week off and that the important thing is to keep the cycles going on the 2 weeks on, 1 off rhythm. I don't really understand this - how can than be more important than the dosage level? It's illogical to me so I conclude I don't have enough information and that I'll be asking some questions when I see her next week.
I also had a CT scan on Wednesday - so hopefully I'll get the results next week too. I hope they'll continue to be good and show that the capecitabine is still working. Otherwise there'll be a whole slew of points between here and No Options Left crossed off the list (this is a pretend list - there isn't actually a list). On a more general note - having a cannula put in after a transatlantic flight plus diarrhoea is quite a challenge - the dehydration makes the veins *vanish*. Hence, I have a lovely bruise where apparently we hit a valve. Did you know you had valves in your veins? I didn't. I do now. Plus we had to downgrade to a yellow cannula as the blue just wasn't having any of it. And my favourite chemo nurse is a) on holiday in Mauritius - lucky devil and is b) going back to Australia in August or September - for good..... wahhhhhhh! (Why is it that everyone I know is moving to Australia??? OK, slight exaggeration perhaps but this is about the 4th person I know to have gone/be going to Oz. What did I do?!)

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.