Hot, I'm hot, and it's 2 in the morning and I'm tired, but I have that wakeful mind thing going on....not helpful. I hate it when I don't even know what I'm thinking *about*; or even what I'm trying *not* to think about. Something just doesn't feel right.
Perhaps it's because I've yet another extra week off chemo - which I know I need for my stomach and rest-of digestive tract to recover - but I'm scared what the next CT scan will show. I've had 2 elongated cycles in a row and I won't know for another 3 weeks if the medication is at the right level yet. And I worry that the disrupted timescale will mean things will no longer be stable. That cancer will be growing again. Because eventually it will be - that's inevitable now - well, not inevitable that it will grow *now; but that it will one day. One day. These are not the sorts of things you are supposed to be waiting for; they're not the 'one day' dreams I should be having. When I wasn't feeling well (at all well) last weekend (very icky) my mind immediately leapt about 4 million miles from where I was - thinking that the medication dosage would have to be decreased again already - to thinking that The Precious Oncologist would declare that Xeloda was no longer working and there were no other options and I was going to start the dying process. Palliative care next step. And my imagination was running wild (my imagination should seriously be lopped off) - trying to decide what music to have playing at my funeral; would I be buried or cremated? And if I was cremated then where would I like my ashes? And thinking of the people who would be there and how they would feel and about how would the Dear Other cope. And goodness me, I felt Very Sad and Cried (for a change). The wee small hours in combination with bathroom and not knowing if you're going to be sick, have diarrhoea, or both - plus heartburn and gas - these things are really Not A Good Combination and cause mental anguish. I feel better now - but, yet again, I am amazed by where my head goes when I'm not feeling well. I feel now like that can't possibly have been my head and my mental processes - and that is strange.
I'd forgotten, a bit, quite how simply dreadful it is to feel continuously nauseous. That feeling when you start to wish you'd just be sick and then it would be over and you could start feeling better - or feeling something other than nauseous anyway. I'd forgotten the fact that it eats away at your self-control; at the holding-it-together part of you. I didn't feel like I handled it as well as last time (2005 time, I mean) - I think that was because last time I could keep telling myself that I only had to go through it eight times (four times for the nausea-inducing chemo anyway) but now, now there is no set end. It could be many, many, many times. And it's even more miserable to have to hope that it will be many, many, many times.
Sorry, back to Boring. Dull and repetitive. I *want* to be saying other things. I *want* to have something more interesting to say. But, I was told that 'I want never gets'. And, in true-child fashion, I can only respond 'that's not fair!' Blah, blah, blah. Perhaps that's what my blogposts will be henceforth: I shall simply type [Blah, blah, blah] and you can just move on to the next blog in your blogroll.
Showing posts with label blogging. Show all posts
Showing posts with label blogging. Show all posts
Monday, June 09, 2008
Friday, June 06, 2008
Pocketina
::sigh::
I keep thinking - do I have anything left to say? Or anything that isn't the same thing again and again?
It's taken me this amount of time to get to a point of saying how sad I am that Pocketina of DIYnotDie has taken down her site. I understand why she has; or at least I see reasons why she might do so. I think she needed to move on to a non-cancer part of life and her blog was tying her down to cancer, holding it her back as it were. So, was she brave enough to recognise that and to be able to press that delete button? I'm really in awe of that. It's something that I considered before my cancer had come back - I wondered if writing on this blog was actually stopping me from leaving cancer behind and whether I didn't want to move on. So when it was back I was a little bewildered - had I, in a way, caused it to come back? Had my unwillingness to move away from cancer let it take root again - had it felt wanted? But of course, all those thoughts are mush and meaningless. So, Pocketina - I'm really going to miss her; you. I appreciated all the support she gave me and I took courage from her kick-ass attitude. And part of me wishes she'd left her blog archives up - as a resource for other people going through these things. There were loads of great links up there; stuff about Lymphoedema as well as breast cancer. And fascinating things to do with craft and knitting - and the mastectomy scar tattoo's! But, I guess it would have been harder to walk away knowing that it was all still there - and maybe the deleting was a symbolic act of moving on and away. Most of all I hope it works for her - I hope it lets her run into the rest of the world; to sit more comfortably amongst the non-cancerness; to let cancer recede into the background. I really wish her that. Because I feel better knowing people have made it out of this corral.
I keep thinking - do I have anything left to say? Or anything that isn't the same thing again and again?
It's taken me this amount of time to get to a point of saying how sad I am that Pocketina of DIYnotDie has taken down her site. I understand why she has; or at least I see reasons why she might do so. I think she needed to move on to a non-cancer part of life and her blog was tying her down to cancer, holding it her back as it were. So, was she brave enough to recognise that and to be able to press that delete button? I'm really in awe of that. It's something that I considered before my cancer had come back - I wondered if writing on this blog was actually stopping me from leaving cancer behind and whether I didn't want to move on. So when it was back I was a little bewildered - had I, in a way, caused it to come back? Had my unwillingness to move away from cancer let it take root again - had it felt wanted? But of course, all those thoughts are mush and meaningless. So, Pocketina - I'm really going to miss her; you. I appreciated all the support she gave me and I took courage from her kick-ass attitude. And part of me wishes she'd left her blog archives up - as a resource for other people going through these things. There were loads of great links up there; stuff about Lymphoedema as well as breast cancer. And fascinating things to do with craft and knitting - and the mastectomy scar tattoo's! But, I guess it would have been harder to walk away knowing that it was all still there - and maybe the deleting was a symbolic act of moving on and away. Most of all I hope it works for her - I hope it lets her run into the rest of the world; to sit more comfortably amongst the non-cancerness; to let cancer recede into the background. I really wish her that. Because I feel better knowing people have made it out of this corral.
Friday, May 09, 2008
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?!)
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?!)
Thursday, April 24, 2008
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.
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.
Thursday, November 01, 2007
Welcome greeness, pink go away
Oh thank heavens, October is over and I can go back to the more soothing green. Although it's looking a little more pea-colored than I would like - I'm sure it wasn't that color to start with....
I really do wish I knew how to do the fancy blog designing I see going on. I'd like a pretty banner rather than my rather plain, austere, blank heading......any good recommendations for sites that tell absolute dunces how to start this sort of thing??
My plans for NaBloPoMo are a little more ambitious this year. I think I'm going to have a theme for each day of the week (if I can come up with enough) and I'd like to pose you a daily question. It might just be for recommendations or it might be a bit more like homework......beware!!! :)
Watch this space!
Bearing in mind that I thought today was the last day of October and not the first of November; don't expect too much!!!!
I really do wish I knew how to do the fancy blog designing I see going on. I'd like a pretty banner rather than my rather plain, austere, blank heading......any good recommendations for sites that tell absolute dunces how to start this sort of thing??
My plans for NaBloPoMo are a little more ambitious this year. I think I'm going to have a theme for each day of the week (if I can come up with enough) and I'd like to pose you a daily question. It might just be for recommendations or it might be a bit more like homework......beware!!! :)
Watch this space!
Bearing in mind that I thought today was the last day of October and not the first of November; don't expect too much!!!!
Friday, April 13, 2007
Gosh - y'all were obviously underwhelmed by the previous posts.
I find it interesting that the things I think are interesting posts often get little or no response and the things that I think will float by get comments and emails.
Just goes to show the whole individuals thing!
I find it interesting that the things I think are interesting posts often get little or no response and the things that I think will float by get comments and emails.
Just goes to show the whole individuals thing!
Friday, March 30, 2007
::Blush::
I'm all glowing and proud to have been invited to write a piece for another site and, now I've seen it posted, I'm even more so because of the lovely words that have been said about it.
This isn't so much of a knitting/crafting blog but I have mentioned it here and there and now you can read more about it, the piece is called Chemo-stitches.
So gazillions of thank you's to Pocketina of DIY, not die, I'm proud to be up there on your blog!
This isn't so much of a knitting/crafting blog but I have mentioned it here and there and now you can read more about it, the piece is called Chemo-stitches.
So gazillions of thank you's to Pocketina of DIY, not die, I'm proud to be up there on your blog!
Thursday, January 25, 2007
I haven't given up yet!
OK - I went away for a while, and then I came back and caught up on my links and Minerva is kicking cancer's ass again. I'm so sorry Minerva - you don't deserve it but somehow you keep kicking ass.
::Good thoughts/vibes:: in your direction.
I remember, and my nerves twang when I remember my Taxotere (Docetaxol) run. In fact, I definitely have more aches since taxotere. Taxotere pain had a nasty habit of settling in places where I already had aches; my hip joints for example. Like it was searching out my weak spots and rubbing its hands with glee at the thought of causing more pain. It was just unescapable. The grand solution for this pain from the doctors? Ibuprofen; and when I complained that that only took the edge off for about half an hour and then I had to wait another 3 and a half hours until I could take something else they suggested taking paracetamol in between. Right. Uhhuh. They even gave me codeine after my portocath surgery, for heaven's sake! Had little effect and in the end they reduced the dosage of the taxotere - after all, the skin on my hands and feet was falling off; my feet and hands were tingling - I couldn't tie my shoes properly, peel oranges, open cans or unscrew bottles; my nails got a fungal infection under them and went orange - very attractive!
But, hey! You know all this. I've said it all before. But it's still there. This is the trouble. I can't escape this - it's happened. I get reminded every day when I see my scar, when I feel the pull across my chest. It reminds me that I have one breast, that I had cancer - and then all the fear and the memories get pulled back into me. How do escape this? Before Christmas while I fretted about waiting for the results of my smear test I thought to myself 'I can't take this anymore; I can't stand it - I'll just stop eating and then I'll fade away and I won't have to feel anything'
Insane. I know. I am heartened by the fact that I thought this while staring out the window on the third floor of my maisonnette which has scaffolding outside it - where I could have climbed out of and three floors is pretty far up... But it didn't even occur to me - which makes me feel comforted; that I didn't mean it. I didn't want to end my life - I wanted to end the fear and the sadness; and that isn't the same thing.
And yes, I have confessed this to my counsellor and she is not worried; so don't you be either. And kindly keep any tickings off and scoldings to yourself. I don't want to hear about offending God, going to hell or anything else, thanks. If that's all you can say then keep it to yourself. Thanks!
In other news.
I have yet again missed De-Lurking week. I keep meaning to; I wish it was in May - May would be a much better month. I hibernate in January. Which is why I haven't really been here. It's like January doesn't exist; after Christmas I seem to be in February before I know it.
I saw my mum for a week. A whole week out of one year. I survived a year post-cancer in a world where I know that life is *SHORT* and I saw my mum for a week. That is so shit. Why am I not just doing what I want? What I feel like? Why aren't I still being selfish and taking what I want?
His nibs won't declare his intentions in Pizza Express. He said so. We were talking about my working and what will happen when I move to the new house in Northampton and I confessed that I was skittish about not being independent - that I felt it was wrong not to support myself and he so sweetly said that we were a partnership and neither of us had to do everything ourselves, we could rely on the other person. Sweet - the man is sweet. I then plucked up the courage to finally ask if he thought it would be legal partnership and he said that I knew he always did things properly (or something like that) but that I didn't expect him to declare his intentions in Pizza Express. Well, no. I suppose not. But, ::smile::, that does sound like there might be some intention declaration in the future. And I'm actually happy to have some warning, as it were.
Today I gave my unstinting opinion on mastectomy bras. So far I have bought all of mine from the same place - a little shop called Nicola Jane with specialist fitters who are lovely and kind. They looked after me so kindly and gently when I first went there - I needed bras for my prosthesis but I couldn't bear to look at lingerie and Aimee picked out things for me and helped me find some that made me feel good about myself. So, this is the second time they've invited me to come and wear-test some of their new lines. They're looking at the fit and the style and how it works when it's worn. Both times I've found it really interesting and haven't been able to resist saying exactly what I thought! But this time the managing director was there and I went through my whole psychology of underwear spiel - poor chap! He was kind enough to give me his card and let him know if I had any ideas or comments.
So I couldn't resist acquiring a few new things while I was there - they were very kind and let me pick out a free bra to say 'thank you' for my time - nice, black, lace, narrow straps. I can't begin to tell you how important narrow straps are - so many mastectomy bras are what my friend Mol would call 'boulder-holders' with enormously thick straps and general nastiness and they make me feel thoroughly depressed - I won't wear 'em. I also bought a fantastic vest top with a built in, pocketed bra - it looks gorgeous - I'm in love!
Well, after that long absence I've gone on a bit - better drop it now really.
::Good thoughts/vibes:: in your direction.
I remember, and my nerves twang when I remember my Taxotere (Docetaxol) run. In fact, I definitely have more aches since taxotere. Taxotere pain had a nasty habit of settling in places where I already had aches; my hip joints for example. Like it was searching out my weak spots and rubbing its hands with glee at the thought of causing more pain. It was just unescapable. The grand solution for this pain from the doctors? Ibuprofen; and when I complained that that only took the edge off for about half an hour and then I had to wait another 3 and a half hours until I could take something else they suggested taking paracetamol in between. Right. Uhhuh. They even gave me codeine after my portocath surgery, for heaven's sake! Had little effect and in the end they reduced the dosage of the taxotere - after all, the skin on my hands and feet was falling off; my feet and hands were tingling - I couldn't tie my shoes properly, peel oranges, open cans or unscrew bottles; my nails got a fungal infection under them and went orange - very attractive!
But, hey! You know all this. I've said it all before. But it's still there. This is the trouble. I can't escape this - it's happened. I get reminded every day when I see my scar, when I feel the pull across my chest. It reminds me that I have one breast, that I had cancer - and then all the fear and the memories get pulled back into me. How do escape this? Before Christmas while I fretted about waiting for the results of my smear test I thought to myself 'I can't take this anymore; I can't stand it - I'll just stop eating and then I'll fade away and I won't have to feel anything'
Insane. I know. I am heartened by the fact that I thought this while staring out the window on the third floor of my maisonnette which has scaffolding outside it - where I could have climbed out of and three floors is pretty far up... But it didn't even occur to me - which makes me feel comforted; that I didn't mean it. I didn't want to end my life - I wanted to end the fear and the sadness; and that isn't the same thing.
And yes, I have confessed this to my counsellor and she is not worried; so don't you be either. And kindly keep any tickings off and scoldings to yourself. I don't want to hear about offending God, going to hell or anything else, thanks. If that's all you can say then keep it to yourself. Thanks!
In other news.
I have yet again missed De-Lurking week. I keep meaning to; I wish it was in May - May would be a much better month. I hibernate in January. Which is why I haven't really been here. It's like January doesn't exist; after Christmas I seem to be in February before I know it.
I saw my mum for a week. A whole week out of one year. I survived a year post-cancer in a world where I know that life is *SHORT* and I saw my mum for a week. That is so shit. Why am I not just doing what I want? What I feel like? Why aren't I still being selfish and taking what I want?
His nibs won't declare his intentions in Pizza Express. He said so. We were talking about my working and what will happen when I move to the new house in Northampton and I confessed that I was skittish about not being independent - that I felt it was wrong not to support myself and he so sweetly said that we were a partnership and neither of us had to do everything ourselves, we could rely on the other person. Sweet - the man is sweet. I then plucked up the courage to finally ask if he thought it would be legal partnership and he said that I knew he always did things properly (or something like that) but that I didn't expect him to declare his intentions in Pizza Express. Well, no. I suppose not. But, ::smile::, that does sound like there might be some intention declaration in the future. And I'm actually happy to have some warning, as it were.
Today I gave my unstinting opinion on mastectomy bras. So far I have bought all of mine from the same place - a little shop called Nicola Jane with specialist fitters who are lovely and kind. They looked after me so kindly and gently when I first went there - I needed bras for my prosthesis but I couldn't bear to look at lingerie and Aimee picked out things for me and helped me find some that made me feel good about myself. So, this is the second time they've invited me to come and wear-test some of their new lines. They're looking at the fit and the style and how it works when it's worn. Both times I've found it really interesting and haven't been able to resist saying exactly what I thought! But this time the managing director was there and I went through my whole psychology of underwear spiel - poor chap! He was kind enough to give me his card and let him know if I had any ideas or comments.
So I couldn't resist acquiring a few new things while I was there - they were very kind and let me pick out a free bra to say 'thank you' for my time - nice, black, lace, narrow straps. I can't begin to tell you how important narrow straps are - so many mastectomy bras are what my friend Mol would call 'boulder-holders' with enormously thick straps and general nastiness and they make me feel thoroughly depressed - I won't wear 'em. I also bought a fantastic vest top with a built in, pocketed bra - it looks gorgeous - I'm in love!
Well, after that long absence I've gone on a bit - better drop it now really.
Wednesday, December 06, 2006
Winning and winning
Wow - I was so excited about winning something in NaBloPoMo - mostly because I really was not expecting to. I never expected to get that email in my inbox or see my blog-name on Fussy, so I've felt a little bit bad reading some of the comments on the Winners post on Fussy.
Now, I'm not calling you all a big bunch of whiners - really! I'm not! (That wasn't the great British sarcasm either) And I'm sure most comments were for humour but I did feel a teensy bit bad that some people felt left out. Would I have felt left out if it hadn't been me? Well, I probably would have felt vindicated in my 'I never win anything, the world is against me, I had cancer after all' gray thoughts - but because that's where my doldrum-my life is at the moment I wouldn't have been surprised. Consequently, I am still quietly, excitedly, pleased. And I get a little smile and I do that thing where you raise your shoulders, grin and kind of wriggle....Hmm, that really is a physical 'thing' not a wordy 'thing', isn't it? All I can say is, follow the instructions: try it out and you'll get what I mean (You will! I promise!). And hey, it is just a t-shirt - a super-duper red Fussy t-shirt to be sure - but it wasn't a bazillion dollars, or something....(unless I can sell it on ebay - can I sell it on ebay? NO! Joke. I am looking forward to wearing it, my good self.)
In other news - my oncology consultant says I am 'normal' - I am bizarrely insulted by this - I want to be 'special' not 'normal'. But, on the other hand it does mean that I'm beating back the beast and for that I am truly grateful. I'd sell my soul to the devil for that, I'd sell my Fussy t-shirt to the devil for that. If being 'normal' forever means I can say I played with cancer and won then I'll take it. Thank you Alison! She always reassures me.
Now, I'm not calling you all a big bunch of whiners - really! I'm not! (That wasn't the great British sarcasm either) And I'm sure most comments were for humour but I did feel a teensy bit bad that some people felt left out. Would I have felt left out if it hadn't been me? Well, I probably would have felt vindicated in my 'I never win anything, the world is against me, I had cancer after all' gray thoughts - but because that's where my doldrum-my life is at the moment I wouldn't have been surprised. Consequently, I am still quietly, excitedly, pleased. And I get a little smile and I do that thing where you raise your shoulders, grin and kind of wriggle....Hmm, that really is a physical 'thing' not a wordy 'thing', isn't it? All I can say is, follow the instructions: try it out and you'll get what I mean (You will! I promise!). And hey, it is just a t-shirt - a super-duper red Fussy t-shirt to be sure - but it wasn't a bazillion dollars, or something....(unless I can sell it on ebay - can I sell it on ebay? NO! Joke. I am looking forward to wearing it, my good self.)
In other news - my oncology consultant says I am 'normal' - I am bizarrely insulted by this - I want to be 'special' not 'normal'. But, on the other hand it does mean that I'm beating back the beast and for that I am truly grateful. I'd sell my soul to the devil for that, I'd sell my Fussy t-shirt to the devil for that. If being 'normal' forever means I can say I played with cancer and won then I'll take it. Thank you Alison! She always reassures me.
Thursday, November 30, 2006
Sayonara NaBloPoMo
So, this is the last post of NaBloPoMo - I ought to make it worthwhile really but I'm a bit too busy here waiting for the phone to ring. Long story, never mind.
What have I learned from NaBloPoMo - there's a lot to say even when you don't think there is. I didn't get as much posted as I wanted to however - I'd really hoped to finish a bit more of my whole story of last year but it takes so long to write those posts and I have so many other things going on at the moment that I still didn't manage it. I will, slowly, obviously. I don't think I'm going to Holidailies - a brief respite is needed I think. Plus I really need to do things like write Christmas cards and the like.
I also haven't read as much or commented as much as I wanted to - I'm so bad. Bum.
All in all, an interesting experience and good for the discipline I think. It's been good for me to post every day I think and I shall try to make sure I post a little more regularly than I had been doing. So I guess all there is to say is that no kittens died because of me and
Watch this space.....
What have I learned from NaBloPoMo - there's a lot to say even when you don't think there is. I didn't get as much posted as I wanted to however - I'd really hoped to finish a bit more of my whole story of last year but it takes so long to write those posts and I have so many other things going on at the moment that I still didn't manage it. I will, slowly, obviously. I don't think I'm going to Holidailies - a brief respite is needed I think. Plus I really need to do things like write Christmas cards and the like.
I also haven't read as much or commented as much as I wanted to - I'm so bad. Bum.
All in all, an interesting experience and good for the discipline I think. It's been good for me to post every day I think and I shall try to make sure I post a little more regularly than I had been doing. So I guess all there is to say is that no kittens died because of me and
Watch this space.....
Sunday, November 26, 2006
Love 'n' stuff
Well, well, well, (the three holes in the ground...) 5 days left to the end of NaBloPoMo. I think I'm going to make it - they definitely haven't all been terribly scintilating posts; but I have got into a bit of a habit and I think that's a good thing: even if I'm talking to just about no-one.
People whizz by but don't stop - I'm not surprised; it's not a thrilling blog full of my exploits; it's not a 'baby blog' full of fuzzy photos and it does include the word 'cancer' fairly prominently on the first page which does tend to scare people away.
I don't blame people who run away from things cancer-related. Cancer *is* scary - we're all afraid of it really, I think. It's something living in us; threatening our very being and we aren't even aware that it's there for a while. If that isn't scary then I don't know what is. But we exist - people with cancer, people who've had cancer - we exist; and that cancer is part of who we've become and it's hard to ignore or pretend that it isn't. So. I'm not hiding it. So. Think a moment before you run away.
In nicer news - I got to do mass baby-cuddling yesterday - bliss. And I got to feed her. She's very bonny and so talkative! All these funny noises; grunts and things - sweet! I hadn't really noticed that in previous baby-experiences. Ooh, she's a clingy little thing too. She won't sleep unless she's held and ends up sleeping on her mum most of the night. I'm so excited to think that I get to see her grow up.
::blissed out::
People whizz by but don't stop - I'm not surprised; it's not a thrilling blog full of my exploits; it's not a 'baby blog' full of fuzzy photos and it does include the word 'cancer' fairly prominently on the first page which does tend to scare people away.
I don't blame people who run away from things cancer-related. Cancer *is* scary - we're all afraid of it really, I think. It's something living in us; threatening our very being and we aren't even aware that it's there for a while. If that isn't scary then I don't know what is. But we exist - people with cancer, people who've had cancer - we exist; and that cancer is part of who we've become and it's hard to ignore or pretend that it isn't. So. I'm not hiding it. So. Think a moment before you run away.
In nicer news - I got to do mass baby-cuddling yesterday - bliss. And I got to feed her. She's very bonny and so talkative! All these funny noises; grunts and things - sweet! I hadn't really noticed that in previous baby-experiences. Ooh, she's a clingy little thing too. She won't sleep unless she's held and ends up sleeping on her mum most of the night. I'm so excited to think that I get to see her grow up.
::blissed out::
Wednesday, November 15, 2006
Air and share
I read M. Kennedy's 'Pep Talk' earlier today and blithely thought 'I'm not having trouble thinking of things to write' - but now I've sat down to it; actually, I'm not full of ideas.
I've been looking at my stats recently and I am saddened by the number of people who come to my site by searching for information about portacaths. So many of them stop by and read a few pages and then disappear without commenting. And to each one of them I want to be able to say 'I'm so sorry' that you're in a situation where you need a portacath. I don't want people to have to go through the kinds of things I went through andI wish you would say something so I could know something about you - because otherwise my imagination fills in the blanks.
I 'met' another BC blogger today - Laurie - and I flicked through a few pages at the start of her blog when I wasn't working today. And, as so often, reading her diagnosis story reduced me to tears. And I was interested that she, like me, had written a post about what and what not to say to someone with cancer. I suppose it's not that surprising - it is hard to say the right thing and sometimes there isn't a right thing; but.....interesting. As I say to people I meet who've had breast cancer - I wish I didn't have this in common with you; I wish I hadn't met you because I wish that neither of us had had to go through what we have. But we have. And I'm very grateful to Kim for her comments and her insistance that I am a strong person. I find it hard to see that because I'm the one wallowing in my own head; and I am wallowing at the moment, I am overwhelmed by myself and lost in myself. I'll get out of it - I think Elaine's hope is rubbing off on me; I really do believe I will - but I think it's going to take a while.
I've been looking at my stats recently and I am saddened by the number of people who come to my site by searching for information about portacaths. So many of them stop by and read a few pages and then disappear without commenting. And to each one of them I want to be able to say 'I'm so sorry' that you're in a situation where you need a portacath. I don't want people to have to go through the kinds of things I went through andI wish you would say something so I could know something about you - because otherwise my imagination fills in the blanks.
I 'met' another BC blogger today - Laurie - and I flicked through a few pages at the start of her blog when I wasn't working today. And, as so often, reading her diagnosis story reduced me to tears. And I was interested that she, like me, had written a post about what and what not to say to someone with cancer. I suppose it's not that surprising - it is hard to say the right thing and sometimes there isn't a right thing; but.....interesting. As I say to people I meet who've had breast cancer - I wish I didn't have this in common with you; I wish I hadn't met you because I wish that neither of us had had to go through what we have. But we have. And I'm very grateful to Kim for her comments and her insistance that I am a strong person. I find it hard to see that because I'm the one wallowing in my own head; and I am wallowing at the moment, I am overwhelmed by myself and lost in myself. I'll get out of it - I think Elaine's hope is rubbing off on me; I really do believe I will - but I think it's going to take a while.
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