Instead of sleeping

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.

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.

Doom downgraded

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

I hate CT scans

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

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

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


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

A Letter to My Body

As per BlogHer:

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

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

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

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

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

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

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

Chemo tips (with a baked potato side)

I've been getting quite a few hits recently from people searching for 'first chemo treatment' - which is sad (for them, not me).
Hi there if you've reached me by searching for that and I'm so sorry if it's information for *your* first chemo treatment; well, I'm also sorry if it's someone else's first chemo treatment. Either way, I can guess that you're having a tough time. (understatement, I know)
The world is probably upside down now - especially if you're having neoadjuvant chemo (i.e. before any other treatment, like surgery or radiotherapy) in that case, you may have had a week or maybe only days since being told the dreaded cancer words. Or if it's adjuvant (in addition to other treatments you've had) you may be recovering from surgery or radiotherapy.
Whichever, this is a hell of time and chemo isn't going to be easy. I'm sorry to tell you that. You'll do it; you'll get through it, even if you have to claw your way to the end of it; but you'll do it, we do it, I did it - because I wanted to be there at the end to tell the tale. I wanted to be alive.
I don't want to scare or upset you; but I don't think lying is the answer - chemo is hard. It goes on for a long time, which leaches away your strength - mental as well as physical. It can come with side effects which can make you feel pretty miserable at times. A lot of this will depend on what chemo combination you're on. Some are worse than others.
My first chemo treatment was overwheming - it was a new and scary time, in a new and unfamiliar place, with new and unfamiliar people. Not a good combination.
Please, don't run away - take control over what you can.

• Make sure you have a good support team - take family or friends with you.
• If you can visit the place where your chemo will be given in advance of your first treatment - then do it. I know you'll not want to, but then it's a bit less stressful when you have to go back.
• Try to have one specific nurse look after you each time - build up a relationship with them, you'll want someone you feel comfy with and eventually you'll want someone who knows you and your veins.
• Take a snack or lunch, depending how long you'll need to be there - having your own food, that you like and you know you can eat will always be better than whatever the coffee shop at the hospital has or the dreaded limp sandwiches that they bring round in my chemosuite
• Try taking an MP3 player or a personal DVD player with headphones - it can help block out where you are.
• I like crossword puzzles, Sudoku and the like - they're irritating enough to distract me and keep my brain busy - it makes it *much* easier to ignore the other people there.
• Take a shawl or a wrap - you may have to take off sweaters or cardigans so they can get to your veins for a cannula - the liquids going in can make you feel cold and it's nice to have something warm, fuzzy and fluffy to comfort and warm you.
• Drink lots of water the day before treatment and enough on the day to be hydrated - it makes it easier to get cannulas into veins if you're not dehydrated.
• Don't drink too much water on the day because trying to manoeuvre a drip stand to the loo can be challenging; plus, I hate to move around when I have cannulas and tubes attached to me!
• Do drink (water) when you get home when you can bear to - it'll help to flush all that stuff out of your system.
• I had a chemo 'uniform' - I wore pretty much the same thing each time. I had a portocath, so I wore a button down the front shirt with a vest top underneath that meant the port could be reached easily without creating modesty problems. If you're having a cannula put in your arm then make sure that your sleeve can be pushed up and left up easily and isn't too tight. Wearing the same clothes each time made me feel in control and it also didn't 'contaminate' the rest of my clothing by associating it with chemo.
• If your chemo is one that causes nausea and vomiting or diarrhoea, eat what you can when you can - the main thing will be to get something inside you that you can keep down or in your stomach. Diet rules get thrown out the window. If icecream is what works - eat it.
• Don't be afraid to challenge medical people - make sure they introduce themselves before they start doing things to you; ask what they're giving you and why (if you want to know).
• If you're given lots of medication (or any) to take at home - anti-sickness, steroids, painkillers, whatever - ask them to write down exactly what you take for what, how often, when, which you can have together and which not. They may tell you these things but you will forget. Be it due to stress or feeling generally crap - make them write it down.
• No-one likes having needles put in them, but remember you can take control over when you let it happen - they can't do it until you roll your sleeve up and hold out your arm!

I hope that some of this has helped give you a strategy for coping with your first chemo and all the subsequent ones. The experience of having to go and have it done gets better after the first time - you know what to expect, you know the 'good' seat in the chemosuite, you know the nurse that's on your wave-length, they know who you are when you walk in and they say 'hi, how's it going?' and mean it. And all that helps to make you feel a little more in control.
Good luck, I have my fingers crossed for you; drop me a line, share how you're feeling, how it's going - I'm a good sympathiser and I'll listen.

Truce

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

CT results

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

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

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

Snow! ::grin::

Whee! Short interlude for sitting on a plane with lots of turbulence and dodgy intestinal tract - yay! Recipe for a fun trip! But I did make it to the other side of the pond and I've only got 3 more doses of Xeloda before Christmas - hopefully it'll all calm down by then. I have my onc's permission to knock off one of the small tablets on each dose if my skin gets too bad but it hasn't really - my cuticles are all disappearing and I like to be in close-ish proximity of a toilet but that's it for now. So I'll stick with the full dosage - I don't want to start decreasing the dosage until I really have to - that will just mean that I've got less of a place to go to before my body can't take any more of it. So, I'm shutting up and swallowing the damn pills. And lots of liquid to try and avoid being *too* dehydrated.....I thought last week I was getting a cold but it so far hasn't transpired (which is good) But I checked with Megan at the hospital about what to do if I got a cough (instructions in my purple chemo booklet say I'm supposed to ring them if I get a cough and I thought calling transatlantic over the Christmas period probably wasn't going to be much of a goer; so I now have *two* different sets of emergency antibiotics (on top of all the rest of the rattling lot) - I'm getting to be the drug queen........

It's snowing here in Massachusetts - we've had about 6 inches of the light, fluffy variety on top of the 8+ inches from the previous week, and I'm loving it. It's beautiful. Light and white and fresh. I stuck my head out the door earlier to take some photos and it was so quiet. I'd forgotten how quiet the snow makes everything. Even when there's nothing to hear; the silence is muffled too. Isn't that strange?
I'll post the photos later on I hope.

My memory is getting quite iffy again - hence the leaving my glasses at the Haven after Shiatsu last week. They were right on the table in front of me and I still didn't notice and left them there and had to go back to collect them another day - which is a drag because it takes at least an hour and 3 changes of transport to get there......grrrrr.

Amazon seems to have sent everything I ordered from them in an individual box - sorry, make that an individual, ridiculously enormous, over-packaged box. I'm sorry earth - I think my Christmas presents have cut down the last trees in existence. In the past they've been *much* better about it so I'm quite cross really. We went and picked out our tree yesterday and it's lovely - lots of smell and just the right shape and size - so now we have to fish out all the decorations. When we were putting it into its stand last night the cat insisted on sticking his head in it for ages - and then had a sneezing fit. Quite amusing. Hopefully this will have cured him of wanting to climb or otherwise decimate it......(but probably not).

Heartburn can See Me In Hell - getting permanently annoying now.

Right -decoration hunt begins now! Challenge!

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?

Baby, when you're gone.....

I've been finding myself feeling a bit panic-y whilst I've been here. I keep seeing photos of myself - graduation photos, baby photos etc and I think it makes me realise that I will be missed when I'm no longer here. And that makes me feel terrible. It makes me feel so guilty that I will cause people to mourn; to feel so terribly sad. Perhaps that seems odd - perhaps it seems a bit big-headed. But it makes me feel terribly bad about myself. I don't want to be the cause of pain and sorrow.
I met my brother's girlfriend yesterday - she seems so nice. I like her a lot and I am so glad that my brother has found someone so great; someone else who sees how fantastic he is; someone who'll be there for him when I cannot be. I keep feeling like I see glimpses of the future - but a future that I may not be a part of.
So, I appear to have managed a week of being slightly upbeat before it all tumbled down again.
Oughts and shoulds and wishes all mishmashing together.
Plus, I have no knitting or yarn with me and I don't know what to do with my hands, never mind my head.
I know, I know; 'good situation', 'could be worse' - all of that. I suppose I just feel like the situation will be worse in time and therefore I might as well be there already.
What's the answer? A furry cat to heat me up beyond all endurance? I don't know anymore.

Surprisingly thankful

Well, I've reached day 16 and run out of steam - I don't know what to say today.

That said, today's not shaping up too badly - I have actually had a shower and washed my hair today. Some days that's too much for me - so, yay me! I will also step out of the house today. True, only to the supermarket and only because the Dear Other is insisting that he won't drive - lazy old me would prefer it if he did.....

Are these bad signs? The other day I managed walking the distance I used to walk to work. I did feel like I'd walked quite far and I'm not sure I'd go straight out and do the same again in a hurry. But it was only a couple of miles and I used to cover that in 40 minutes easily. I can obviously still do it but without quite so much ease. What with the dormant verdict I feel even more lost sitting around at home. I know I still couldn't get up and do a full days work. I think it's because I'm so much less sick and unwell than I was with the chemo 2 years ago. But then, that *really* knocked me out so I guess that's not so surprising. Just because it's not as bad as last time doesn't mean I'm 100% well.

I think, having had a day or two to assimilate, I am feeling pleased with the chemo's apparent success. Stopping it growing is a good thing - it's not nothing! It hopefully means that we're in control again rather than it running the show. (hear that , cancer?? You've lost some power now - just wait and see what happens next, because we're running this show!)
I think I may be finding the groove. The little bit of bite and fight that gets you through. Yes, alright, a little hope. I'm not sure what the hope is or what it's hoping for but there's a glimmer. So, I'm upping sticks and heading State-side for Thanksgiving with my mum and dad and my brother - and at least we've got a little something to say 'thank you' for. I have even found a company that will insure me at not too extortionate a cost. Insure Pink is a broker that has finally realised that cancer doesn't necessarily make you an appalling risk for travel insurance. For £70-odd (GBP) they've insured me - including the cancer. For Christmas last year I paid £80-odd (GBP) *excluding* anything cancer related - and then I didn't have mets....and nothing happened to me of course and I didn't make any claim. Hopefully it will be the same this time.
Now I just have to sweet-talk the airline into cutting us through to the front of the security queue - gotta have some perks, right?

Turkey and pumpkin pie - here I come!

Doormouse in the teapot

Dormant was the word of the day - dormant. As in, the cancer is no longer growning - it hasn't shrunk either - but it's not growing. It's dormant.

This is good news, I think.

It's also disappointing news - of course it is! Because really, the best news would be 'gosh, the cancer's completely vanished - off you go and have a nice (long) life!'. This is unrealistic - I know that. But it's still the only news I could hear and would accept as 'good'. This news is acceptable. Pleasing. Hopefull. But the word 'dormant' really does come with the implication of re-awakening. I.e. it's sleeping now but will be back eventually.

It's a shame that I can't just jump with joy over this and grab it and run with it - but that's just me, I guess.

The discrete chemo-taker

Ugh. We went out to dinner last night at the house of some people we don't know terribly well - people from the Other Half's church. And there were 2 other couples there who we didn't really know. Which led to some rather stilted conversation although they were all very nice. I'm just really hopeless with people I don't really know - I can manage a few, but 6 is too many and I just end up clamming up. I'm really just shy at heart.

So, dinner was fascinating - all veggie and dairy-free. We had carrot and ginger soup, then home-made lemon sorbet, then roast pumpkin with a green veggie melange with red pepper and a sort of curried lentil filling plus cauliflower and finishing up with pear gingerbread. I'm still waiting to see how my stomach is going to react to all those veggie - it's been misbehaving on and off recently - usually at 3am - nice (not).

So we got to the end of dinner and I had to take my Xeloda (within 30mins of eating) and I debated excusing myself and taking them in the bathroom, but then I realised that I wouldn't have a glass to put water in to take them so I had to take them at the dinner table - plus I had to ask for a glass that wasn't a wine glass (I wasn't drinking alcohol anyway). Which I did and I tried to be subtle about it but obviously taking 6 tablets with an ocean's-worth of water is a bit hard to do discretely....
So, the chap next to me says 'those look like my pills' and I said 'I don't they will be' (thinking 'I don't think so! Shut up') and he went 'statins' and I said 'um, no, um, these are chemotherapy tablets' which shut him up for a minute and then he went 'they look just like mine' and I made some ha-ha comment about the terrible colours they make these medications, blah, blah. All the while feeling awful. I didn't want to tell this guy, or anyone about them; although our hosts and one of the other couples will know about my cancer from the church - I just couldn't think what to say (other than 'mind your own beeswax!'.) I'm a terrible liar in these situations and I didn't want to not answer because then they might be thinking who-knows-what....
(Dear Other Half suggested afterwards that I should have said they were hormone pills because of my sex-change operation - funny, but I think *not*)

What would you have said? What would you have done? How do you not say 'I have metastatic breast cancer in my bones and lung and I have to take chemotherapy in order to try not to die any time soon...' (No, I didn't actually say that; but I bet that's where his thoughts took him.)

Urgle. Hate.

Some things are worse than cancer

Argh! October, please end - I want to turn my blog back to a livable-with colour. Pink is yak, yak, yak and I cannot face looking at my own blog at the moment.

Those of you who have noticed this years NaBloPoMo icon on the site will all be laughing at the prospect of me posting every day - since I currently can't get my finger out to post once a week at the moment. Cease and desist - if necessary I'll be posting a photo from Peru to fill the gaps.....there are some goodies!!

In the meantime, if breast cancer awareness is *making* you sick and you'd like to interest yourself in some other cause then I'd like to recommend Kiya Survivors who provide fantastic support and help for children with special needs in Peru. These children have often been abused and don't have opportunities for education in the mainstream and Kiya educate and offer physiotherapy and loads of other things for them. They are extremely deserving and I and the girls I visited Kiya with this summer were blown away by the incredible staff and wonderful, fun, amazing children there. On my behalf, I'd rather you gave *them* support than bought hideous pink things this October.

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.

My blog posts are better than your blog posts - or are they?

This is going to be a boring post full of banal things like:
"I can't believe I'm doing this again.
It is *sooooo* not fair that I have cancer.
I hate chemotherapy."
And other things that end in:
Whaaaaaa!

And,
Hmmmm, I've said it all.

Whaaaaa!

On a deeper and more meaningful level:
Whaaaaa!

In other news, my brother had the audacity to go and see Eddie Izzard when he was in LA and met him afterwards and then proceeded not to tell me this for over a month. He is useless. That is utterly uncalled for and I'd sulk if he wasn't all the way in Boston and wouldn't know that I was sulking. (For what is the point of sulking if the person you're sulking with isn't living with your sulky silence?!)

Finally, I have a dilemma:
Would it be in poor taste and/or demoralising to other people in the Onc. clinic and chemosuite to wear this t-shirt?

See, it makes me laugh - but I know I'm a bit warped so I thought I'd take advice.......
I mean, in my eyes it is *obviously* a joke but I figure some people might not see that - especially when sat in the chemosuite - nothing seems very funny in there. Apart from pictures of people having diarrhoea, apparently.....and I think that's still probably just me.

Ah, Xeloda!

Xeloda (Capecitabine) (doesn't it just trip off the tongue - I'm sure there's a song with this in it.....what am I thinking of??)
Well, they look like effing orange horse pills (the pills are orange, not the horse) and I take 4 large ones and 2 small ones twice a day starting tomorrow for 2 weeks then I get a week off and then we start again - whee! The absolute best bit is that it comes with its' own instruction booklet that includes a CD-ROM.
Yes, really.
No kidding.
I proceeded to laugh hysterically whilst Megan tried to tell me about the side effects.
The booklet also includes a little chart where you can mark off your pills and also chart your side effects. It has little pictures in case you're not sure what throwing up or diarrhoea is - helpful, eh?!
Truly hilarious - it really cheered me up no end. Plus you can chart the relative severity of your side effects - just in case having them isn't enough.
In the meantime they dripped me full of the bone strengthening drug - Pamidronate - another fancy name. I appear to have one usable vein for cannulas - so that's going to be fun, not.

In more exciting news - my invitation for Ravelry arrived today. Which was a nice cheerer-uper for the day. Now I just have to take lots of photos of things. Which, let's face it, I'll now have time to do - ironic, eh?

And, finalmente, I'll leave you with a picture of Peruvian llamas at Machu Picchu:

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.

Outcomes

I went to Norfolk for the weekend.
I got very sandy due to the wind but the sun shone.
I have cancer growing in my spine, hip and lung.
It's small, but there.

Fuck.

And this is apparently not a surprise to the medical team. Apparently it can happen and apparently when they were being positive with me there was a much smaller chance of a good outcome than I realised.

Still not going to die to tomorrow. But....