To be clear - they did insure me in the end - as a 'goodwill gesture'; but probably won't do so again.
I cried - no, I'll be honest, I bawled down the phone at them to the extent that I was barely intelligible while giving my credit card details. So much so that the woman who was dealing with me became so upset that someone else had to take over.
I hate that crying that ends up with those juddering breath/sobs that you can't stop.
They then told me to have a good trip and the woman who'd taken over said 'go and have a nice cup of tea.' - To which I replied 'I don't think tea cures cancer' - or I would've done if I'd been able to enunciate the words - it came out more like gobbledygook and I caught myself when she said she hadn't heard what I'd said and just said 'thank you'. Because, as I'd said to the other woman - it wasn't her fault and actually it was horribly unfair that she had to be the one to tell me this and to deal with a distraught person on the phone - it was the decision of the underwriters who, of course, don't deal with the customers. Which is pretty luxurious for them. I get really angry about things like that. I'm not surprised when my cancer means that I can't have what I want - but I get angry when people won't face me with it. If you're going to deny me something then you better tell me yourself and take it when I get upset and angry. You have to listen to me because I don't see why you should get to run away. Take responsibility for what you've caused. Be the big person and deal with my upset. Trust me, no matter how much you don't want to and no matter how uncomfortable it makes you - it's worse for me. It will always be worse for me. So don't be so cowardly. Worms.
So, I can no longer recommend InsurePink travel insurers if you have mets. I expect they're still not bad if you've had cancer but are now in the clear and to be fair, they have always been very easy to deal with and talk to when going through the medical questions. But if your cancer is metastatic: keep looking......
Oh, and sorry I upset you Mirriam.
Showing posts with label Mets. Show all posts
Showing posts with label Mets. Show all posts
Saturday, December 20, 2008
Friday, December 19, 2008
Just ring! - Or actually, don't. Piss off.
Update:
They'll insure me as a one-off as a gesture of goodwill this time but underwriting changes all the time and I can try them in the future but they may not insure me (i.e won't insure me). Because they're not set up for helping people with metastases just people who've had cancer but are better now.
So there.
And it's not because I have cancer it's because I'm going to the U.S.A. - except of course, it *is* because of the cancer - because if I didn't have cancer they'd insure me.
I've had this underlying feeling this would be the last Christmas I'd have in the States. Perhaps I was right.
Oh hey! Merry Christmas! Have a great one!
***********************************************
Urgle,
waitwaitwaitwaitwait.
Ickety waiting for the Travel Insurance people to call me back and say if they're going to insure me or not.
The relevant person is only on the end of an email or something and I've been waiting for nearly 3 hours. Which is silly - they insured me a month ago for Thanksgiving - nothing has changed since then. There is no reason why they shouldn't be able to do it. I just have to wait until the supervisor ok's it.
So why am I researching other Insurance companies?.....
They'll insure me as a one-off as a gesture of goodwill this time but underwriting changes all the time and I can try them in the future but they may not insure me (i.e won't insure me). Because they're not set up for helping people with metastases just people who've had cancer but are better now.
So there.
And it's not because I have cancer it's because I'm going to the U.S.A. - except of course, it *is* because of the cancer - because if I didn't have cancer they'd insure me.
I've had this underlying feeling this would be the last Christmas I'd have in the States. Perhaps I was right.
Oh hey! Merry Christmas! Have a great one!
***********************************************
Urgle,
waitwaitwaitwaitwait.
Ickety waiting for the Travel Insurance people to call me back and say if they're going to insure me or not.
The relevant person is only on the end of an email or something and I've been waiting for nearly 3 hours. Which is silly - they insured me a month ago for Thanksgiving - nothing has changed since then. There is no reason why they shouldn't be able to do it. I just have to wait until the supervisor ok's it.
So why am I researching other Insurance companies?.....
Wednesday, September 03, 2008
Tiddely pom, the more it grows.....
Ba-blah blah blah.
Hello.
It's 'bye bye' to Xeloda from me and 'hello' to Arimidex as bad, naughty Xeloda has declared itself finished and allowed a wee bit of growth to the nodes in the lungs and lymph. Tut tut tut. But! Bone scan showed *mostly* stable/no big change. However an MRI has been ordered to check if the pain my shoulder is due to the cancer in my spine around my neck and/or the cancer in the bone at my sternum. I didn't really realise that there was cancer in those specific places before today; never wanted to know - but I guess one has to know eventually. If it proves to be this, then there may be some radiotherapy to help it.
So, yeah, not a good day. Could be worse - the growths are small and slow; no rampaging for the moment. And I can't say I'm sad to see the back of the Xeloda - 12 pills a day carefully arranged after eating at the right time and causing the diarrhoea and sore hands/feet - I'm happy to see the back of that. And the Arimidex is fairly side-effect free: hot-flushes (got them already) and aches in hands.... but it's all still a blow. I needed the Xeloda to work for longer than this. I was hoping for more than a year on it. I don't understand how the Arimidex is really going to help - all it does is to inhibit any other oestrogen production in the body - so, yes, it's going to prevent the oestrogen feeding the cancer cells; but, surely if staying in control of the cancer was as straightforward as this, wouldn't this drug have been the one we tried first? It's not exactly sounding like we're using the big guns here. But the only other options is moving onto the old-school chemos (IV) The Arimidex at least means that I only have to go into see the consultant every 6 weeks, instead of every 3 weeks - that's nice. And swallowing a tablet a day is infinitely better than being hooked up to IVs again - although we'll be there in the end.
So, teary day. The thought I can't stand is of having to go through this *every time* a particular line of treatment comes to an end - that's what I can't stand. The shock, the upset - although today was *not* helped by a very large clinic list and having to wait over an hour and a half beyond my appointment time to see the consultant. There weren't enough seats in the waiting room. I was a complete mess before I even got in there. Needless to say - I wasn't totally surprised by the results - I was worried; but no matter what, hearing it is never easy.
I really hate cancer and I really hate having cancer and today I really wished for oblivion. Just for a short time - to not have to feel or think for a while; because I hurt. I am bored of cancer; I'm bored of having it, I'm bored of fighting it - it's tedious and monotonous and *dull*, *dull*, *dull*. I don't want to fight it anymore - I'm tired of it. Just think what I could use that energy for if it wasn't being sucked up by getting up and facing the cancer every day....
::sigh::
Anyway, that's where I am today.
Hello.
It's 'bye bye' to Xeloda from me and 'hello' to Arimidex as bad, naughty Xeloda has declared itself finished and allowed a wee bit of growth to the nodes in the lungs and lymph. Tut tut tut. But! Bone scan showed *mostly* stable/no big change. However an MRI has been ordered to check if the pain my shoulder is due to the cancer in my spine around my neck and/or the cancer in the bone at my sternum. I didn't really realise that there was cancer in those specific places before today; never wanted to know - but I guess one has to know eventually. If it proves to be this, then there may be some radiotherapy to help it.
So, yeah, not a good day. Could be worse - the growths are small and slow; no rampaging for the moment. And I can't say I'm sad to see the back of the Xeloda - 12 pills a day carefully arranged after eating at the right time and causing the diarrhoea and sore hands/feet - I'm happy to see the back of that. And the Arimidex is fairly side-effect free: hot-flushes (got them already) and aches in hands.... but it's all still a blow. I needed the Xeloda to work for longer than this. I was hoping for more than a year on it. I don't understand how the Arimidex is really going to help - all it does is to inhibit any other oestrogen production in the body - so, yes, it's going to prevent the oestrogen feeding the cancer cells; but, surely if staying in control of the cancer was as straightforward as this, wouldn't this drug have been the one we tried first? It's not exactly sounding like we're using the big guns here. But the only other options is moving onto the old-school chemos (IV) The Arimidex at least means that I only have to go into see the consultant every 6 weeks, instead of every 3 weeks - that's nice. And swallowing a tablet a day is infinitely better than being hooked up to IVs again - although we'll be there in the end.
So, teary day. The thought I can't stand is of having to go through this *every time* a particular line of treatment comes to an end - that's what I can't stand. The shock, the upset - although today was *not* helped by a very large clinic list and having to wait over an hour and a half beyond my appointment time to see the consultant. There weren't enough seats in the waiting room. I was a complete mess before I even got in there. Needless to say - I wasn't totally surprised by the results - I was worried; but no matter what, hearing it is never easy.
I really hate cancer and I really hate having cancer and today I really wished for oblivion. Just for a short time - to not have to feel or think for a while; because I hurt. I am bored of cancer; I'm bored of having it, I'm bored of fighting it - it's tedious and monotonous and *dull*, *dull*, *dull*. I don't want to fight it anymore - I'm tired of it. Just think what I could use that energy for if it wasn't being sucked up by getting up and facing the cancer every day....
::sigh::
Anyway, that's where I am today.
Friday, March 14, 2008
A Letter to My Body
As per BlogHer:
Dear Body,
I don't really like you and I used to like you and it's not all down to that usurper: cancer.
I used to revel in my body; it looked pretty fancy without much effort, it brought me pleasure, allowed me to feel good. The breasts came in a little early and I could have done without nasty people pinging my brand new brastraps. But perhaps it's good that they did because it gave me a little more time with a full pair before the mastectomy at age 28.
Didn't you know body, that you weren't supposed to let cancer in? That it was a baddie who you ought to have fought? I know I didn't go in for playing cops and robbers when I was a child, was that what you needed to teach you to fight baddies?
You did bad, you let me down, you're responsible for the lopsided mess that is now my bosom and yet you still didn't learn because you let Mr Cancer come back and set up residence in my bones and lung. How did he sweet-talk his way back in? Was a year's worth of hideous treatments not enough to teach you to attack Mr Cancer?
It's so hard to hate you, body, because you are me and hating you means hating me - but I do. I can't really bear to be with myself a lot of the time. I look away from the bathroom mirror when getting into the bath. I struggle over what to wear that won't show off a non-existent cleavage. You've cheated me - because the world out there thinks that women have *two* breasts - it's in the magazines, on the Television, in films, in fashion, it's instilled into every baby being breast-fed; it's on every woman I see walking down the street. You've turned me into the Non-Woman.
And not content with all this, you sweat all the time; you've turned me into a sweating, hot-flushing mess. You insist on punishing me for the lack of hormones - which, actually, is all *your* fault - if you hadn't let the cancer in, *I* wouldn't be having injections to shut down those hormones. And then, perhaps I would feel like a human being with all those aspects that are ruled by hormones. I might *feel* something instead of feeling sad or nothing.
And how can you let Mr Cancer move into my lungs - I'm a singer. I need those lungs. I've trained them and honed their function to fulfil my needs. You *know* how important they are; but you sold me out. I can still sing, but you still dissed me.
How can I stand to live with you when you don't seem to care about me? When you're prepared to let me die? If I could exist without you, body, then I would. Don't you love me? Don't you want to be here? Don't you think I deserve to be here? Am I not good enough? I never treated you badly - there was that broken arm once; but it got fixed, and it wasn't deliberate. I just don't understand you and I want to be that woman I was - I want to walk down the street with confidence, with the knowledge that people look at me and see a beautiful person. I want to enjoy my body again; I want to enjoy being in it, using it and not see myself as a diseased, broken, useless thing. I want to be a woman again - able to do and be the things that make one so. But you, body, have excluded that.
You know what?
Screw you.
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.
Wednesday, January 02, 2008
Knit, knit, knit
Well, I finally took heart in hands and laid into Pocketina's yarn.
She said to me that it wasn't much so not to start on a big project. So, I decided to make a mini moebius neck warmer - no pattern - just a rectangle twisted and sewn. I used moss stitch - that's seed stitch to the Americans out there (I think).
The beginning was hilarious - because I couldn't work out how to get into the darn stuff - which was so beautifully twisted together. I've never knitted from a skein rather than a ball of yarn so that was rather messy (how *are* you supposed to manage it?!)
So, the results - the pictures are rather poor sadly - the light wasn't good enough:
This really doesn't do justice to how lovely the yarn is - very soft and quite stretchy too. I knitted with 12mm needles so it knitted up really quickly. It was yellow flecks in it and some faintly sparkly bits - so, all in all lovely and I'm very pleased with the result. I also look to have loads left, which I wasn't expecting, so I'm not sure what to do with the remainder (which sadly is a rather tangled mess now - it got out of hand and I'm not sure how to go about sorting it out....::sigh:: I foresee a lengthy job ahead.
Just to amuse, I shall show you the two different sizes on needles I've been using today:
The observant among you will spot the Addi Turbos - my first set. I am officially loving them. They are being used with Malabrigo lace yarn in Indigo to make Alice's Cheshire Cat Stole. Early days with plenty of opportunity to mess it up - hooray!!
BTW - the lump in my lymph system is now officially down-graded to petit-pois size. Also good, yes?
She said to me that it wasn't much so not to start on a big project. So, I decided to make a mini moebius neck warmer - no pattern - just a rectangle twisted and sewn. I used moss stitch - that's seed stitch to the Americans out there (I think).
The beginning was hilarious - because I couldn't work out how to get into the darn stuff - which was so beautifully twisted together. I've never knitted from a skein rather than a ball of yarn so that was rather messy (how *are* you supposed to manage it?!)
So, the results - the pictures are rather poor sadly - the light wasn't good enough:
This really doesn't do justice to how lovely the yarn is - very soft and quite stretchy too. I knitted with 12mm needles so it knitted up really quickly. It was yellow flecks in it and some faintly sparkly bits - so, all in all lovely and I'm very pleased with the result. I also look to have loads left, which I wasn't expecting, so I'm not sure what to do with the remainder (which sadly is a rather tangled mess now - it got out of hand and I'm not sure how to go about sorting it out....::sigh:: I foresee a lengthy job ahead.
Just to amuse, I shall show you the two different sizes on needles I've been using today:
The observant among you will spot the Addi Turbos - my first set. I am officially loving them. They are being used with Malabrigo lace yarn in Indigo to make Alice's Cheshire Cat Stole. Early days with plenty of opportunity to mess it up - hooray!!BTW - the lump in my lymph system is now officially down-graded to petit-pois size. Also good, yes?
Thursday, December 13, 2007
Long time, passing
::Sigh::
Where did I go? I guess December has gotten the better of me.
What have I been up to?
Well, I had my appointment at the Royal London Homoeopathic Hospital with Dr. Kassab - who was very nice. Her office was filled with plants which was nice - green and leafy. She was very kind and it was so fantastic to talk to someone who really acknowledged how much of a problem the hot flushes are - and then went on to say that she was pretty sure she could do something to help. Which is such a difference to the usual 'well, it's crap but we can't do much about it'. I'm not saying that other drs. etc have been unkind or unsympathetic; it's just that, generally, they can't offer much help with it. Plus, it's always considered as a *side-effect* rather than a problem in its own right.
So, I cried (as usual) and explained everything that had happened to me (which I hate doing - well, the explaining the whole when it first started, how I found it and all that stuff.)
It was really quite fascinating discussing it with her - she asked lots of questions about the emotional effect and how I felt when it happened and before it happened and what it felt like. I learnt some interesting things about them through this - for example, the hot flushes make me feel claustrophobic - having to have windows open at night; feeling compulsions to take off as many clothes as I can when they happen; panicking and feeling trapped when they happen.
So I came away with an initial prescription for 'Argent Nit. ' and another for 'Glonoine' if the other isn't doing much after a month. So it's been just over a week and I'm still waiting to see what sort of effect the Arg. Nit. is having......I'm not feeling like it's helping much yet but I'll keep on giving it a go.
One of my few working veins has given up the ghost so we had to have several goes at getting the cannula in on Friday ::shudder:: I never thought I'd say this, but; I miss my portocath.....I keep joking that I'll bring in my port and they can put it back in. But I was down to 2 or 3 functioning and easily found veins in my one usable arm and if we keep going with the IV pamidronate then I'm going to run out of veins!! Plus, who knows what they'll have to give me in the future. Eventually, if the Xeloda stops working, then I may need some other drugs. So, in the long run, it may be an investment to have the portocath put back in.....I guess I'll cross that bridge in due course.
So, then on Saturday morning (of course, these things never happen on Mondays...) I noticed that a mole on my leg was looking odd and scabby and darker. So, of course, I freaked out; convinced that it was skin cancer and it had spread and perhaps this was the initial cause of it all (irrational, much?) and so on. Oh, and that the 3 cysts I have in various places weren't cysts and I should have mentioned the new one instead of telling myself it was just another cyst etc. Argh, dying, end of world, man the lifeboats, plan the funeral, finish the knitting etc.
Poor Dear Other tried to reassure me - reminding me that the CT scan would have shown up other cancer spots, that even if it was abnormal it didn't mean it was cancerous, that it was small. And it was a case of me meeting logic and going 'lalalalalal cannot understand this logic-thing, s'cuse me, too much dying to do!' Poor, poor, Dear Other - he looked so sad and said he felt so bad about not to be able to make me feel better. (Bear in mind I'd thrown in a healthy dose of 'I'm so stupid; it's all my fault; I should have done this and that and the other; bad, bad me, blah, blah, blah') Well, he did make me feel better; but I felt pretty crap to begin with so it was better on a relative scale. So, after a weekend of 'argh!' and great fear, on Monday morning I rang my breast care nurse (well, the new one - the one who knows me best is on maternity leave - the nerve of it!) who helpfully said 'hmm, don't think it's to do with the Xeloda - go and see your GP. Bye!' Not quite as much cossetting and reassuring as I'd hoped for. So, I rang my GP's surgery and asked for an appointment that day - none to be had (of course) so I asked for my GP to ring me and headed off to Shiatsu where I spent at least half the session crying and wailing before we even started - but she was very nice and understanding about my neuroticness and was even kind enough to say that she understood my point of view about feeling that the cancer was my 'fault' because my body is me. By the time I got home it was getting on for 5pm and my GP *still had not rung me* and I was cross but decided I'd just ring for an appointment early the following morning but just as I was bad-mouthing him, he rang (at 4 minutes before 6pm....) and said 'it's about a mole?' and I said 'yes, it sounds pathetic, I know.' and he was kind enough to say 'no, no - do you want me to look at it?' (er, no - why would I want that? Please just use your psychic powers to divine it's status and we shan't have to bother with all this appointments business.....) Ooh, I am bitchy - horribly so, considering that he told me to come and see him the following day - a miracle because I can't usually get an appointment with him at all. But he squeezed his schedule or something and fitted me in.
So I showed it to him, along with a bunch of other ones and my cysts, saying 'what about this one? Ok, this one? Can I just show you this?' and he was exceedingly patient and looked at them all and told me they were all *FINE*. (YAY!) But he said that if I came back in a month then he'd look again and if I wanted to have it removed then he'd take it out and send it to be tested; so I probably will have it taken off - just so I stop peering at it and poking it (which was probably why it was red in the first place - dumbo.) Then he asked if there was anything else he could do for me - which I always think if very nice but very pointless; because what can he do? I was torn between saying 'yes, make it all go away' and 'yes, come round for tea - that will make me feel better!' But I didn't say either - well, I might have said the former in a not so facetious way. But I did whine a bit about not sleeping and he gave me a prescription for some Zopiclone (why do half my pills start with a Z or an X???) - just a small number, not a long term thing but he said it might help so I can make the most of my time with my family over Christmas. So, I went home a very relieved bunny and collapsed in a heap.
Remind me to tell you tomorrow that I left my glasses at Shiatsu, I'm getting a cold, I'm collecting preventative antibiotics and to show you the *bee-you-ti-ful* lace stole I was given as a Christmas present (which I've worn and stroked every day since I got it); plus my dithering over what to make with Pocketina's hand spun yarn (I'm currently too scared to knit it in case it all goes horribly wrong and I spoil it - which will make me cry, more, lots.) Plus, plus, my envy over the meeting and fah-bulous new creations of Laurie and Rebel.
The end.
Whee! Are you still reading? Or have you slumped over in a heap of overwhelmed-ness?
Where did I go? I guess December has gotten the better of me.
What have I been up to?
Well, I had my appointment at the Royal London Homoeopathic Hospital with Dr. Kassab - who was very nice. Her office was filled with plants which was nice - green and leafy. She was very kind and it was so fantastic to talk to someone who really acknowledged how much of a problem the hot flushes are - and then went on to say that she was pretty sure she could do something to help. Which is such a difference to the usual 'well, it's crap but we can't do much about it'. I'm not saying that other drs. etc have been unkind or unsympathetic; it's just that, generally, they can't offer much help with it. Plus, it's always considered as a *side-effect* rather than a problem in its own right.
So, I cried (as usual) and explained everything that had happened to me (which I hate doing - well, the explaining the whole when it first started, how I found it and all that stuff.)
It was really quite fascinating discussing it with her - she asked lots of questions about the emotional effect and how I felt when it happened and before it happened and what it felt like. I learnt some interesting things about them through this - for example, the hot flushes make me feel claustrophobic - having to have windows open at night; feeling compulsions to take off as many clothes as I can when they happen; panicking and feeling trapped when they happen.
So I came away with an initial prescription for 'Argent Nit. ' and another for 'Glonoine' if the other isn't doing much after a month. So it's been just over a week and I'm still waiting to see what sort of effect the Arg. Nit. is having......I'm not feeling like it's helping much yet but I'll keep on giving it a go.
One of my few working veins has given up the ghost so we had to have several goes at getting the cannula in on Friday ::shudder:: I never thought I'd say this, but; I miss my portocath.....I keep joking that I'll bring in my port and they can put it back in. But I was down to 2 or 3 functioning and easily found veins in my one usable arm and if we keep going with the IV pamidronate then I'm going to run out of veins!! Plus, who knows what they'll have to give me in the future. Eventually, if the Xeloda stops working, then I may need some other drugs. So, in the long run, it may be an investment to have the portocath put back in.....I guess I'll cross that bridge in due course.
So, then on Saturday morning (of course, these things never happen on Mondays...) I noticed that a mole on my leg was looking odd and scabby and darker. So, of course, I freaked out; convinced that it was skin cancer and it had spread and perhaps this was the initial cause of it all (irrational, much?) and so on. Oh, and that the 3 cysts I have in various places weren't cysts and I should have mentioned the new one instead of telling myself it was just another cyst etc. Argh, dying, end of world, man the lifeboats, plan the funeral, finish the knitting etc.
Poor Dear Other tried to reassure me - reminding me that the CT scan would have shown up other cancer spots, that even if it was abnormal it didn't mean it was cancerous, that it was small. And it was a case of me meeting logic and going 'lalalalalal cannot understand this logic-thing, s'cuse me, too much dying to do!' Poor, poor, Dear Other - he looked so sad and said he felt so bad about not to be able to make me feel better. (Bear in mind I'd thrown in a healthy dose of 'I'm so stupid; it's all my fault; I should have done this and that and the other; bad, bad me, blah, blah, blah') Well, he did make me feel better; but I felt pretty crap to begin with so it was better on a relative scale. So, after a weekend of 'argh!' and great fear, on Monday morning I rang my breast care nurse (well, the new one - the one who knows me best is on maternity leave - the nerve of it!) who helpfully said 'hmm, don't think it's to do with the Xeloda - go and see your GP. Bye!' Not quite as much cossetting and reassuring as I'd hoped for. So, I rang my GP's surgery and asked for an appointment that day - none to be had (of course) so I asked for my GP to ring me and headed off to Shiatsu where I spent at least half the session crying and wailing before we even started - but she was very nice and understanding about my neuroticness and was even kind enough to say that she understood my point of view about feeling that the cancer was my 'fault' because my body is me. By the time I got home it was getting on for 5pm and my GP *still had not rung me* and I was cross but decided I'd just ring for an appointment early the following morning but just as I was bad-mouthing him, he rang (at 4 minutes before 6pm....) and said 'it's about a mole?' and I said 'yes, it sounds pathetic, I know.' and he was kind enough to say 'no, no - do you want me to look at it?' (er, no - why would I want that? Please just use your psychic powers to divine it's status and we shan't have to bother with all this appointments business.....) Ooh, I am bitchy - horribly so, considering that he told me to come and see him the following day - a miracle because I can't usually get an appointment with him at all. But he squeezed his schedule or something and fitted me in.
So I showed it to him, along with a bunch of other ones and my cysts, saying 'what about this one? Ok, this one? Can I just show you this?' and he was exceedingly patient and looked at them all and told me they were all *FINE*. (YAY!) But he said that if I came back in a month then he'd look again and if I wanted to have it removed then he'd take it out and send it to be tested; so I probably will have it taken off - just so I stop peering at it and poking it (which was probably why it was red in the first place - dumbo.) Then he asked if there was anything else he could do for me - which I always think if very nice but very pointless; because what can he do? I was torn between saying 'yes, make it all go away' and 'yes, come round for tea - that will make me feel better!' But I didn't say either - well, I might have said the former in a not so facetious way. But I did whine a bit about not sleeping and he gave me a prescription for some Zopiclone (why do half my pills start with a Z or an X???) - just a small number, not a long term thing but he said it might help so I can make the most of my time with my family over Christmas. So, I went home a very relieved bunny and collapsed in a heap.
Remind me to tell you tomorrow that I left my glasses at Shiatsu, I'm getting a cold, I'm collecting preventative antibiotics and to show you the *bee-you-ti-ful* lace stole I was given as a Christmas present (which I've worn and stroked every day since I got it); plus my dithering over what to make with Pocketina's hand spun yarn (I'm currently too scared to knit it in case it all goes horribly wrong and I spoil it - which will make me cry, more, lots.) Plus, plus, my envy over the meeting and fah-bulous new creations of Laurie and Rebel.
The end.
Whee! Are you still reading? Or have you slumped over in a heap of overwhelmed-ness?
Wednesday, September 26, 2007
Doing the ostrich
Sorry, I've run out of good humour this evening.
I did laugh at the entries - and raised my eyebrows - and went 'eh?' in an amused way but tonight I'm full of the panics so I can't quite laugh.
Tonight I have 2 more days left on this cycle of the Xeloda and I'm realising how many questions I haven't asked. And I'm still too scared of the answers to ask them.
I haven't asked if this drug is going to help the cancer in the lungs and the lymph system. There seemed to be much more talk about treating the cancer in the bones and not much reference to the rest so I'm left wondering if that's because there's not much they can do about that.
I'm scared that I'm being lied to - by omission, rather than directly. Or, not lied to; but protected from the full truth of matters.
It may very well be true that this drug can control cancer in the bones for quite a while; but if it goes wild elsewhere in me in the meantime then that may not mean very much.
My oncologist referred to being able to help me get early retirement on ill-health grounds (which at the age of 30 is very scary) but is that an indirect way of hinting that I don't have a lot of time?
The problem to my mind is that if the cancer is in my lymph system then it could be setting up shop anywhere. And I keep hearing the word 'aggressive' in my head; which was how someone referred to my cancer this week - not my doctor, someone else.
I am so scared.
And I'm just convinced that next week they're going to tell me there's no point in continuing this treatment because it's in too much of my body. Which is completely based on fantasy in my head because they've done no new tests; there's no new data. Just panic. Just fear. Just me running out of time.
I'm really angry about being so optimistic last time. I tried to be really positive. I told myself that I could beat the cancer; that I would win. And I believed that was an option. Now I feel like that was total naivety - based on the impressions I had from what people were saying to me. No-one ever said that there was a bigger likelihood of it coming back than of it not coming back and that's what I feel like they all thought. No-one has said it but I feel like a chump for trying to even be optimistic. Because now it has come back; I'm crushed. I'm absolutely shattered by this. And not only do I not want to die but I feel *stupid* for ever wittering on at people about 'if it hasn't come back in five years'. For ever giving other people the impression that I would beat it. Stupid, stupid, stupid.
And I'm still focusing on the little things. I'm weeping over the fact that I'll never have children when I should be weeping over the fact I'll probably die before my parents.
Well, I'm weeping over that too.
And don't tell me to be/think positive tonight - maybe tomorrow - but not tonight. I feel like I can't be positive because I tried that and cancer still came back - and I can not keep taking the blows of hopes dashed.
I did laugh at the entries - and raised my eyebrows - and went 'eh?' in an amused way but tonight I'm full of the panics so I can't quite laugh.
Tonight I have 2 more days left on this cycle of the Xeloda and I'm realising how many questions I haven't asked. And I'm still too scared of the answers to ask them.
I haven't asked if this drug is going to help the cancer in the lungs and the lymph system. There seemed to be much more talk about treating the cancer in the bones and not much reference to the rest so I'm left wondering if that's because there's not much they can do about that.
I'm scared that I'm being lied to - by omission, rather than directly. Or, not lied to; but protected from the full truth of matters.
It may very well be true that this drug can control cancer in the bones for quite a while; but if it goes wild elsewhere in me in the meantime then that may not mean very much.
My oncologist referred to being able to help me get early retirement on ill-health grounds (which at the age of 30 is very scary) but is that an indirect way of hinting that I don't have a lot of time?
The problem to my mind is that if the cancer is in my lymph system then it could be setting up shop anywhere. And I keep hearing the word 'aggressive' in my head; which was how someone referred to my cancer this week - not my doctor, someone else.
I am so scared.
And I'm just convinced that next week they're going to tell me there's no point in continuing this treatment because it's in too much of my body. Which is completely based on fantasy in my head because they've done no new tests; there's no new data. Just panic. Just fear. Just me running out of time.
I'm really angry about being so optimistic last time. I tried to be really positive. I told myself that I could beat the cancer; that I would win. And I believed that was an option. Now I feel like that was total naivety - based on the impressions I had from what people were saying to me. No-one ever said that there was a bigger likelihood of it coming back than of it not coming back and that's what I feel like they all thought. No-one has said it but I feel like a chump for trying to even be optimistic. Because now it has come back; I'm crushed. I'm absolutely shattered by this. And not only do I not want to die but I feel *stupid* for ever wittering on at people about 'if it hasn't come back in five years'. For ever giving other people the impression that I would beat it. Stupid, stupid, stupid.
And I'm still focusing on the little things. I'm weeping over the fact that I'll never have children when I should be weeping over the fact I'll probably die before my parents.
Well, I'm weeping over that too.
And don't tell me to be/think positive tonight - maybe tomorrow - but not tonight. I feel like I can't be positive because I tried that and cancer still came back - and I can not keep taking the blows of hopes dashed.
Thursday, September 13, 2007
karma chemo
Well, Lorazepam has been my sleepy friend for a week now. I discover it's not as effective when I take it at the same time as my Gabapentin. I've been told to stop taking the Tamoxifen which makes me feel a bit scared. Even though the Tamoxifen, which was supposed to keep me 'safe', obviously hasn't done it's job - I still feel vaguely unsettled. Which is mad really because hey, I've got cancer in my bones and lung - OK, it could be worse - it could be a lot worse. But it's still pretty bad.
It's pretty bad.
I'm starting chemo again on Friday - tomorrow. Tablet form this time though - which is definitely good - because I'm fuming that I let them take my portocath out. Apparently if the tablets work then I can be on them 'long-term'. I'm hoping this is a good sign because I was too chicken to ask what sort of time frame I was looking at. But people were going on about 'living' and doing things and stuff so they don't expect this to eat me tomorrow. However, to date, I haven't been renowned for having my cancer in the 'expected way'.
I'm still doing lots of crying hysterically - I can't stop apologising to my partner and family. I feel so bad and so sorry for them. I don't want them to have to go through this; I don't want them to have to watch me fade away when the time comes. I feel like I am a burden - an emotional burden. They tell me to shut up and stop being so ridiculous (in a rather nicer way of course!) but,....I still feel it.
I also feel a bit embarassed that it's come back. I've been going round saying to people that everything seemed to be fine, so far, at this point. And now I just look really dumb.
Time to wail a bit more.
Oh, but thank you nice people, all. I'll get back to you properly in due course.
It's pretty bad.
I'm starting chemo again on Friday - tomorrow. Tablet form this time though - which is definitely good - because I'm fuming that I let them take my portocath out. Apparently if the tablets work then I can be on them 'long-term'. I'm hoping this is a good sign because I was too chicken to ask what sort of time frame I was looking at. But people were going on about 'living' and doing things and stuff so they don't expect this to eat me tomorrow. However, to date, I haven't been renowned for having my cancer in the 'expected way'.
I'm still doing lots of crying hysterically - I can't stop apologising to my partner and family. I feel so bad and so sorry for them. I don't want them to have to go through this; I don't want them to have to watch me fade away when the time comes. I feel like I am a burden - an emotional burden. They tell me to shut up and stop being so ridiculous (in a rather nicer way of course!) but,....I still feel it.
I also feel a bit embarassed that it's come back. I've been going round saying to people that everything seemed to be fine, so far, at this point. And now I just look really dumb.
Time to wail a bit more.
Oh, but thank you nice people, all. I'll get back to you properly in due course.
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