Scrambled eggs

Cancer - in cackling tones: "We're in your skull, trying to reach your bra-a-ins! Hahahaha!"

Is what an MRI of my head shows. Which explains the numb patches on my face and in my mouth. Apparently it's squeezing in between the layers of the skull and trapping nerves.
Soooooo, chemo is on hold while we do 5 or 10 doses of radiotherapy to try and fry it on the spot. I keep to meet the clinical oncologist (not the Princess Oncologist - she's a*medical* oncologist) on Tues to discuss and then have planning session ready for the new attack.
People are being positive - I have no perspective so am utterly lost and just being gently nudged around from pillar to post.

We finally had agreement that Fentanyl wasn't for me and am now on Morphine sulphate -
must improved although current dosage doesn't actually seem to be doing much actual pain *killing*. I would argue that if you're spending the day lying down or sitting down in very particular positions so you're comfortable and then are not able to walk around or stand comfortably, then there's still some fiddling with the dosage to do. Comes with it's own set of sfx of course: dry mouth (as in, I don't seem to be able to speak as my entire throat is stuck to itself. sorry.) Constipation on grandiose scale - there are a lot of laxatives out there and I think I'm taking all of them, together, and they're not working too well yet. I do keep pointing out that I haven't *had* food for 48 hours and this might have something of an effect but am being roundly ignored. Seems sensible to me - put nothin in, get nothin out - right?


OH - and in the respite between starting Morphine and the grand sickness that is something to do with my head; I managed to walk into an actual hairdressers and say, "I need my hair cut, I need it cutting short and I need it cutting now. Any chance?" Fortunately the answer was yes and it is Short.(sorry, crappy webcam picture.)








Don't worry - I looked much paler until they put 2 units of blood into me on Friday. Takes bloody forever (hohohoho!) Not sure I feel much better other than behaving like more of a bitch than is really my due. Sorry.

So, it's not everything - but I thought all you lovely people deserved to be kept up to date. Thank you for all your love, messages, thoughts, prayers. It's all appreciated. Ta. :) My mum arrives from the States tomorrow - thank heavens. At least she knows better than to even mention baked beans to a person who has been throwing up for 2 days and is just possibly beginning to think food might be an option......Foolish move, Dear Other, foolish move. As a general tip to the rest of the Universe - Don't Do This. Thank you.

The no good, very bad three weeks

So far, I've been sick a lot, I've slept a lot and I have a white blood cell count of 0.65.

That's the short version.

Fentanyl. This is a controlled substance. An opiate pain-killer. You have to sign at the pharmacy in order to be given it. It's a patch that you stick on your skin and it gradually releases the drug over 3 days and then you stick on a new one. Goody. The Princess Oncologist prescribed, I thought 'great' - don't have to keep taking pills all the time - it releases gradually so you don't get an up and down effect every 4-6 hours. Oh, and by the by, you can get a few side effects when you start it - nausea, sickness, drowsiness, anxiety. But you get used to it in 7-10 days and they stop.

Hohohohohohohohoho - have you met me, Princess Oncologist??
The first day I had the patch on I was virtually comatose. I couldn't stay awake, I couldn't keep my eyes open, when people spoke to me it was like I was in a fog and I thought I was saying normal things to them but I'm not too sure I was. And I'd be sleeping (if you can call it that) and I'd suddenly wake up because I felt like I'd just stopped breathing - you know that sudden catching of the breath and breathing hard? And that scared the crap out of me. And then I was nauseous - continuously but without the actual relief of throwing up. The Dear Other and my Papa were so worried about me that they rang the Macmillan Team and my nurse came out to see me.

'Oh yes', she said, 'Fentanyl will do this - but after 7-10 days it will be much better'. And phoned in a prescription for Cyclazine to my GP. Cyclazine. Yes, improves the nausea but, makes you drowsy. I spend more time sleeping/zonked-out.

Also, unnamed side-effect - strange dreams at night. Perhaps connected to the anxiety. I wake up and never want to sleep at night again.

So, this is how I spend my last weekend before starting chemo again. I am *very* cross. Or do I mean upset? Thanks to the Princess Oncologist I spent the last small amount of time before I was wiped out by chemo being ill anyway. Instead of going out and doing something nice with the Dear Other. Instead of going to the Bluebell Wood at Coton Manor Gardens. Which I really love and wanted to do and now I've missed it and I may never get another chance. If I didn't feel so shit I'd be raging. Instead I'm just crying. I think I thought I'd finally have the courage to do the whole proposing thing - since the Dear Other obviously prefers to wait until.....what? Until I'm dead? I have no idea.

So, that was 3 weeks ago - I think. And 21 days later - guess what? The patches still make me drowsy and I've done plenty of throwing up and I never want to eat food again. Or smell it. Dear Lord, please don't make me have to smell it. Or talk about it. The Dear Other and my Papa will keep asking if I'd like this or that or the other and it makes me not want to eat a solitary thing. Except, having an empty stomach makes me queasy too. So I have to force myself to have something. Ugh.

I had the first chemo about 10 days ago. They managed the get a canula in. I was remarkably calm about it all. Amazingly. They filled me up with anti-sickness steroids beforehand and I was fine the day after. The second day after I was horribly queasy and throwing up. And, of course, they'd sent me home with more steroids and the useless anti-sickness drug Domperidone. Which does precisely *nothing* for me. And I refused to take the steroids because they make me anxious and agitated. Seriously. Even now (probably from the Fentanyl) everything seems *LOUD*. Pots and pans in the other room. The Dear Other walking around. The phone ringing. It makes me start and my heart start pounding as if someone just set off the burglar alarm - in my earhole. The other day, one of my neighbours was dropped off outside by a friend and they were chatting, their kids screeching, the car still running - agitation from me, whilst trying to relax and sleep. Suddenly, someone accidentally leans on the horn of the car briefly - I scream. I felt like I'd literally hit the ceiling with shock. So, I can't take anything else that will make me more anxious.....I just can't. So, Macmillan nurse calls in script for Ondansetron. Which seems to work.
Since then, each Fentanyl patch seems to have caused nausea and often actually being sick. The damn thing means that 2 days out of 3 I'm feeling shit or at am at least sleeping. And my shoulder stills hurts anyway. Not as *much* - I'll give them that; but it's not some magic thing. Plus, since starting the patches half my lower lip and gum and chin have gone numb. Which is weird. And irritating. Very irritating.

My chemo cycle is a slightly odd one. Each cycle actually has 2 parts. You have the first go with 2 drugs and then 8 days later you have another 'top-up' of just one of the drugs. So I went in on Friday to have the 'top-up'. They took bloods first to see how I was reacting and surprise!!! My blood counts were too low to give me the chemo. In 8 days my neutrophils (the part of the white bloods cell count that fights infection, I believe) had gone from 2.49 to 0.65. Not good at all. They won't give chemo unless that count is over 1. When I had neutropaenic sepsis in 2005 after my very first round of chemo I think I was down to 0.1 or 0.2 at one point. But still, not far off. However, I didn't have a fever or a sore throat or any other obvious infection so they just sent me home. I, of course, was very worried because it was all feeling a little deja-vu; and I Do Not Want to end up in the hospital again. I Do Not Want to be on that scary ward with all the cancer patients or in isolation again. Or to have Neutropaenic Sepsis again.
I'm still worried, to be honest. I feel totally wiped out and weak and tired. Having a wash utterly exhausts me. Yesterday my Papa spent half an hour combing the mats and tangles out of my hair - because it had been pulled up on top of my head for over a week and was an utter rats nest. It's got to come off - be cut really short again because I can't cope with it; but I'm not up to going out to the hairdressers. Or probably even managing to sit there for an hour while they cut it. I'm starting to feel like just grabbing the scissors and hacking it off myself. Except, of course, my shoulder wouldn't let me get my right arm up for long enough to do it.

When I'm not zonked out, unable to keep my eyes open I read a bit. The Sweet Camden Lass is keeping me stocked up with books - hoorah! I am being very careful not to read her books when I think throwing up is on the cards. Coz that would be tragic. And rude.
In the last 3 weeks, other than 2 trips to the chemosuite where the Dear Other drove me there, I have been out of the house precisely twice. For little walks round the square outside my flat. I knew it would likely get like this eventually - I hadn't counted on it happening straightaway.

So, pretty crap. That's how I'd describe the current state of affairs. I have no appetite, I sleep a great deal, I throw up, I panic about eating and start at noises, I read, I can't bring myself to even try knitting - I just....don't seem to want to, I cry every time I have a wash, I don't go out (have to avoid any germy people anyway), I cry every time I have to go to the hospital, my shoulder and neck hurt despite the Fentanyl, I've thrown up paracetamol twice, I wear my pyjamas for days, my hair's a disaster, I feel utterly disconnected, my face has no capacity for expression - or that's how it feels; like it can't even pretend a smile; paralysed, oh, and I have bald spot the size of a penny on my head - odd, I can only lie on my back comfortably - but I want to curl up on my side; into a tiny ball, I rock when I feel too bad; like a crazy person and sometimes I just wish this would all end now - that I just wouldn't wake up tomorrow. Done. Dusted. And then some days are better and I don't think that.

I don't think I'm doing too well really. Sorry. But I'll try to keep going Winston (and the rest of y'all), I'll try.

Right here, right now

It's a relief really. I don't have to wait any longer. And I have felt this coming since the start of the year. Which is why I have been so quiet I think. I nearly posted one of my angst-ridden posts about waiting for test results but then I decided that I keep posting those and then stuff's ok-ish and I feel a fool.

Anyway, the CT and the MRI were done a week and a half ago and I forebore from angsting about it. Well, I did in the discomfort of my own brain but I didn't spew it all out here. Results just in: increase of cancer in lung, liver lesions and the swelling on my shoulder is due to a tumour behind the muscle pushing it all forward and squeezing the nerves in my brachial plexus which makes my hand and fingers numb. Plus causes significant pain in my shoulder and lymphoedema in my hand and arm.
Not so good really.
So, it's old-school chemo time again. 2 different drugs on day 1, 1 of them again on day 8, week off. Rinse and repeat 5 times. 6 in total. Time to have a new portocath put in. Ick. Plus a referral to Dr Adrian Tookman - a consultant in Palliative Care; but I've been told he runs a 'bootcamp for cancer patients' - sorry, no, he's interested in rehabilitation for cancer patients. And that's what I think I need - someone to get me moving again. So I'm hopeful about that. Rest assured - the Princess Oncologist tells me she still has treatments up her sleeves - we're not at the end yet.
Hopefully this won't be a hairloss drug regime; but sickness and nausea will be present.
I have decided it's time to stop working. It's time to be with the Dear Other a bit more. I just hope the whole retiring thing can be worked out well.....
I'm upset - no denying. But there is a certain calmness - no more waiting.

I leave you with a quote from Winston Churchill:
"When you're going through hell; keep going."

To chop or not to chop....

::sigh::
I'm getting my hair cut tomorrow. The last time I had it cut was in February 2005, a week before my first AC chemo treatment. It's been growing since the end of 2008. It looks like this now:
And people keep saying how pretty it is, I shouldn't have it cut, etc, etc. Bit the truth is that I generally have it up 24 hours a day. I get too hot to have all that hair down my back - especially whilst I'm trying to sleep.
But I do think it's pretty - actually, despite all the time it took to get used to it; despite how hard I tried to *not* like it - I love my ringlets.
And I don't know what it will do if it's cut - will there still be ringlets? Or will they be gone? Maybe just wavy, or even straight again? I will be gutted if it doesn't curl like this again.
::sigh::
I 'joked' when all my hair fell out that I would shave my head every year to commemorate the whole ordeal but there was an essence of honesty there. I didn't want to get *attached* to have hair again. And, of course, it may go again if, oh, ok, when we get to the hardhitting chemos again. I don't want to die with no hair. I want you all to remember me as some Pre-Raphaelite, intriguing beauty..... with bounteous ringlets. OK? Is it a deal?
::sigh::
So, I don't know what I'm going to have done to it tomorrow. I keep warning people that I may just have a centimetre trimmed off it - I can't cope with expectations. But I just fear that I'm going to weep and weep as he cuts it. Not about having this hair cut off. Just, for everything. For the fact that I didn't cry last time. For the fact that it will go again one day. For everything. And I'm going to look like an insane-woman.... the dear Sweet Camden Lass will be there too - for moral support and mopping up duties in between having *her* hair cut and 'done'..... could be interesting for all.....
::sigh::
Please could I *not* be a wet, teary blanket in front of any more people I don't know.....I'd appreciate that.
Freebie photo:
My hair on a less attractive day on holiday in Scotland. Please allow your attention to be drawn to the owl, whose name I have forgotten. Sorry Mr. Wol....

Preparing for chemo advice

To Cathy:

Thanks for your email - I hope you get this is time to be of some help. You didn't leave me an email address so I'll do my best here on the blog for you.....

First chemo:
"What can I do for him/her that day? What should I be prepared for?"

This is a good question - this is a *great* question. It's also a tricky question.
We're all different, we all react differently, different chemo suites have different procedures and atmospheres and different chemo drugs affect our bodies in different ways.
Wow. That was *really* unhelpful, wasn't it?
Let me try and be a bit more helpful within the proviso that I can only speak from my own experience.
My first chemo was terrible - I'll make no bones about it - sorry. It was terrible because everything was so unfamiliar. The space, the people, the procedures. I also had my own mental baggage - namely that I was hugely uncomfortable and sickened by the idea of having needles stuck in me and having these foreign substances put in me. I found that really quite frightening.
What was helpful for me?
- Having my family with me - I had my mum, dad and partner with me that day. We couldn't all fit in the chemosuite at once so they took it in turns to be with me.
- Solidarity - I don't like people telling me everything is going to be ok. What I do like is people saying things like "Come on, we're going to get through this" A sense of togetherness (although sometimes I do think "who's the 'we' in this?!")
- Be the best companion you can be. I've always found my dad really great at this - he'll make sure we've got the sudoku and crossword puzzle pages from the paper and he'll be daft and distracting when they're putting in my canula. You don't have to do these specific things - be the things you can be - talk about something you know the other person will have an opinion on or is interested in.

What to be prepared for?
- Sometimes fear manifests itself in funny ways, especially when we're in situations where we don't want to show we're scared. So getting angry or really quiet or fussing about something inconsequential or anything that seems out of character could be that.
- Waiting, sitting around. Chemo takes time.
They should begin by talking to the patient and carer/family about what the drugs are, how they'll be administered, what monitoring they'll be doing and what side effects might result - and how to manage those if they occur. Hopefully you should have one nurse looking after you that day - make sure you know their name. No-one does *anything* to me until I know their name - it's only polite!
Then, assuming we're talking about IV chemo, they'll want to put in the canula - the key that's always made me feel better when it comes to canulation is to remember: they can't do it until *you* roll up your sleeve. And you're in control of that! Don't watch them do it - there's no need - you don't get bonus points. I always like to jokingly ask them if they're really good at canulation. That makes it clear that I expect someone who knows what they're doing. You'll probably get to a point after a few visits of knowing who you want to canulate you. Who you feel comfortable with and who knows what they're doing. It's your treatment - don't feel you can't ask for the person you want.
Once they get the canula in they may hook you up to some saline solution and/or some antisickness medications - in my experience it can take around 20mins for that to go through. Blah blah - may be different for you, etc.
Chemo can be administered in a few different ways - I've had chemo drugs injected into the saline line going into the canula (this was an alarmingly *red* coloured drug to boot) - this is quite quick - 10mins or so, I've also had it dripping into the saline line going to the canula - this is sloooowwww - an hour or more.
Once the chemo has gone through they may well administer some more antisickness medications and then give you some antisickness tablets to take home with you. Make them write down clearly what and when to take the various ones plus clarify if you can combine them. I often thought I would remember what they told me but then didn't.
Then, they should let you go home - but also make sure they tell you whom to contact if you're unwell or worried or have questions or are running a fever.
- Feeling out of control. People doing things to you that you don't really understand can make you feel really out of control. I've posted before about being in control of as many aspects as possible.
- Being tired. Both of you. Sitting there, with that much tension for that amount of time is *tiring*. You might want to prepare something for dinner that evening in advance - or if you have some helpful friends or neighbours who keep asking what they can do then ask them if they'd mind preparing something ahead of time. I'd advise something light and easily digestable. I never felt like eating when I got back but I would try and eat something if it was put in front of me. Plus, I'm sorry to say - something that's not too terrible to throw up again if it's a chemo drug with sickness as a side effect.
- Feeling, odd, strange. I got through the day ok, but once I got home I just felt - invaded, scared, lost, all this and more.

I hope this is a little helpful to you - good luck to you both.

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! ;)

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?!)

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.

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.

Woman overboard!

You know how you pysch yourself up to go to the hospital; so you don't turn into a raving, panicking lunatic when you get there......part of what keeps me out of my tree is knowing the people. So when you suddenly have to see one of the Juniors in the Onc Clinic instead of Mme. you suddenly get all into the 'man-the-lifeboats' phase. In case you don't see where we're going with this one - this was me yesterday.
He was very nice, and very thorough - which did freak me out. Mme never bothers with the whole tap your back, tap your stomach, poke your liver, listen to excessive amounts of breathing stuff. But when you're her junior - you do every damn thing on the list because if you miss something you'll be eating your own entrails for breakfast. Or, at least, that's the impression I get....sorry Mme, you're always very nice to me though!!!
So, the result of the tapping extravaganza is that I get the same pill regime - now go away and get them...all that tapping for nought! This is making me think of the Eddie Izzard sketch about finding hidden doors - "tap, tap, tap [ordinary voice], tap, tap, tap [low, hollow voice]" Somehow I think it may work better in real life than on the printed page.
Wheee! More pills! Whoopee! (Why yes, I am an ungrateful lout....)
Had a jolly interesting conversation yesterday about cultural memory. I think I have a rather puritanical cultural memory - I am, apparently, a roundabout descendent of John Howland. So, there you go. Factoid for the day.

Blood and hair

So, the vein that had hardened up has now gone thready and the one that was still working has hardened up now......there's one left on the inside of my elbow and then we're into the deeper ones in my forearm. Ick, is all I have to say. Ick, ick, ick. I don't think I'm going to be real happy about digging for the deeper ones. I don't want to be a wimp, but I hate them looking for veins anyway.

I had the stitches from where they removed the mole taken out today - and I survived that, but then it started weeping and I have a nasty feeling that part of it has reopened.....I had wondered if I'd be healing slower because of the chemo and I think I may have been right. It's nothing major, but I suspect this'll be another awesome scar, because I always seem to scar like billy-o (fascinating word, how is it spelt?)

Clinic day tomorrow and I'm foreseeing a real drag of a day. I have cut it down a bit by going to have the bloods taken this afternoon; but they've shoehorned me into a clinic that was already over-booked and I'm not due until after 11am - lots of time for getting behindhand. Yak. The waiting really does just eat away at me - very bad for the nerves.

I had a fascinating conversation with a shiatsu practitioner the other day. I was talking to her about the whole range of things I've felt over the last 3 years (shit, nearly 3 years! I only just realised - no wonder I'm feeling antsy.) Anywho, one of the things I mentioned was the feeling of being broken - linking in with the feeling that my body is me; plus how trapped and difficult I found it trying to fit in with people in the rest of the world. She said to me that perhaps I had been broken *open* - no more hiding away from the world, more communication. It's an interesting take on it all. I'm thinking about it.

I was asked about my hair in a comment the other day. It has grown back, in abundance - it's down to my shoulders now and would be longer if it wasn't so madly curly. I'm still quite ambivalent about it. I think I should have kept to what I'd said about shaving it all off every year to teach myself not to get so attached to it. I'd probably be a darn sight cooler if I had it cut at least but I'm oddly proprietary of the curls and I'd be sad if I had it cut off and they all went away. So terribly contrary. My hair grew back quite quickly I think - my hair has always grown quite fast and has been quite thick and it still is, well, hmmm, it's sort of fine but there's a lot of it. It's also really babyishly soft still. I don't think my friend's grew back so quickly. So, there you go. I'm hairy. I quite wish all the other hair hadn't grown back though!

Diddly pom - peas

Clinic day yesterday - I've had an extra week off between cycles because of Christmas; I should have been there on Boxing Day, but since no-one else was going to be there I took the chance to have a 2 week break in Boston. Which was nice - but now I'm back. Blah.
So, at one point I lost my dad and thought I was going to have to go into the consultation on my own - which I've never done yet and don't ever want to. I don't think I'd manage to hold myself together on my own......he was still in Starbucks with no watch and thought I was coming to fetch him - I thought he was meeting me at the clinic. Moments of panic and no mobile phone signal for either of us but he, of course, used his nouse, noticed the time on his phone and came and found me. Phew! I did have to resort to a Lorazepam whilst I waited on my own though. Scary.
Anyway, side-effects are not judged to be bad enough to reduce the dosage yet - I'm glad about that, I don't want to reduce until we absolutely have to - I don't want to run out of time, if you see what I mean. Advice was lots of E45 - which I am doing, if a little haphazardly. My onc also said when I asked her about the whole mole thing that, yes, chemotherapy can cause changes in moles and especially their pigmentation......... would have been great if the Breast Care nurse had said this to me when I was in panic mode on the phone! Instead of claiming it was unlikely to be anything to do with it and go and see my GP. Grrrrrrrrrrrr. So, increased relief there.
Also, the lump in the lymph at the base of my neck is shrinking. It's what I'm calling petit pois sized - it's smaller than a regular pea and the onc joked that it was the size you'd send back in a restaurant..... I asked if there were any significance to that shrinking - which was jolly brave of me you should agree - and she said that generally with BC if it's shrinking in one place then it's usually having an effect elsewhere. So, it *could* be shrinking the lung and bone mets too. (Mind you, it also might not be, so no counting the chickens - I'm going to have another CT scan in the next month so she can take a look.)
So, goodish news. Hopefully this is working the way it's supposed to and hopefully it will continue to do so. Keep on keeping on as Dee said to me yesterday.

So, possible time to get up - I've spent the day in PJ's, knitting and now I'm off to see St Trinians with Sweet Camden Lass. We know two of the girls in it - the twins - and we're off to see what they've made of being 'movie stars'.......have to dress for that!!!

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!

I'll moan if I want to!

Well, the Xeloda is starting to have a few more side-effects now.
The skin on my right thumb and forefinger has gone all shiny and is peeling all over the place. It's looking like I'll have no fingerprints on them (Quick! Rush out and commit crimes! They'll never catch me! - I'm kidding, right?)
The skin on the soles of my feet is quite tender now and will blister and peel if I even *look* at shoes other than my trainers. This I found, to my sorrow, the other week when I wore (not *that* high) heels to a dinner party. I was limping with both feet (this is quite difficult in itself) by the end of the evening and the little toe on my left foot was entirely made up of blister. No kidding - there was no bit of skin that wasn't blistered on it. Nice!....Not so much.
I'm back in heartburn-city, drinking peppermint tea by the bucket-load to try and stave off the having to walk round the house with hand pressed to chest at all hours.
Plus, the old lower digestive system is starting to notice and rebel - lovely. Just what I need to make my attractiveness bloom - rushing to the toilet. Although 3am seems to be the time it likes to strike. At least I'm at home then.....
Oh, and the cuticles are disappearing. I don't get that. It happened with the previous chemo-varieties too . What have cuticles got to do with anything? It's problematic in that it's not good for the lymphoedema side of me.
Flying (or something. Too much blueberry pie?) seems to aggravated my hand a bit too. My fingers are looking decidedly podgy again - grrrr. So it's back to the lurvely sleeve and gauntlet - mmmm, sexy!

Hmm, owt else I can complain about? I'm just practising for my next Onc. appointment on Weds really. My oncologist worries about me if I don't arrive whinging and complaining. I think she's finding me entirely less interesting this time around. No far-out, more-unusual side-effects this time around. (I'm tempting fate, aren't I? What an idiot.) She won't want to know about my feet anyway - she doesn't 'do' feet.... ;)

In other news, we flew back from the States on the daytime flight rather than the red-eye yesterday. Wow, *so much* better for the jetlag....we left at 9am US time and landed (with help from a very kindly jetstream) 5 and three quarter hours later at around 7.45pm UK time. Home by 10pm and ready to go to bed at a usual hour - woke up (well, as usual, throughout the night) but was in fit state to get up at 7am (I didn't, mind you; but I *could* have if I'd wanted to!). None of the 'awake until 3am and unable to prise open eyelids until noon'. Getting up at 5am to get to the airport on time was less fun; but manageable since I hadn't been there long enough to get fully onto US time anyway. I'm converted I think. I always thought it would make more sense actually but had never actually done it.
During the course of the flight, I managed to tip a full cup of gingerale onto the (fortunately) empty seat next to me and karma returned the favour when one of the flight attendants knocked an orange-juice carton onto me - it mostly went on the floor thankfully. Plus, I managed to fit in all the requisite pills at relatively appropriate times.

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.

Day of reckoning

I didn't know what to write today and that is because tomorrow is Clinic Day and CT results Day and that's pretty much consuming all the space in my head currently. I slept appallingly last night but I don't feel like I'll sleep tonight either.

Tomorrow is also crap appointment-times day. I've got to get there at 9am in order to get my bloods taken in the chemo-suite. I much prefer Megan in the chemo-suite to do it than to go and wait for the general bods in the blood room but that means I've got to be there bright and early so that she can do it before it gets busy (and boy does it get busy later on!). I cannot begin to tell you how much I regret letting them persuade me to have my portocath removed. I should have trusted my instinct, which was definitely scared stiff about having it taken out and then needing it again. But I did it because I thought it would help me to move on - to stop being a cancer-patient - sadly I'm not sure that even worked really. I still have it somewhere - perhaps they'd put it back in for me.... ;) (KIDDING!) Anyway, then I have to wait around until 11.15am for my appointment with the oncologist; but the last two times I've been they've been a doctor short and things have been running *so* slowly and by 11.15am they'll have had lots of time to get behind schedule so I could end up having to wait for *ages*. Which is really bad for my nerves - I also tend to forget all the questions I wanted to ask if I had to sit around. The panic takes up all the room in my head. The receptionist said that if I turned up early then I might be able to be seen earlier; but if I don't get slotted in earlier then I'll end up having to wait in the Onc. corridor for over an hour - and that really will drive me to insanity. Decisions, decisions....

Plus, I'm really hoping that we don't have a replay of the last two prescription-cock-ups. I'll be scanning the sheet veerrry closely before leaving the Onc.

So, if I'm less than scintillating this evening then I suggest that you go and read (or re-read) yesterday's post. Particularly if you're a person of the knit. And, in fact, I'll accept interest from people who aren't of the knit but need a bit of cheering up. Leave me a comment or send me an email (address on my profile page) and tell me why you need cheering up and I'll select 2 additional folk to receive (why, yes, I do like making additional work for myself!) If you're of the knitting persuasion don't feel alarmed - you don't have to knock out 3 grand sweaters to send of - the knitted items can be little things, funny things, anything you can think of really.
So, join the knitty goodness!

Drip drop

My neck is sweating. Whose neck sweats? I am so gutted about having had to start the Zoladex again. I was so happy when I thought I'd finished in August. That was the only way I got through the summer - by just saying to myself 'only a few more months - you don't have to do any more summers like this'. And it wasn't even a particularly hot summer.
But then the lump reared its ugly head in September and I had to start them again. And the hot flushes are worse again. So bad, that today I actually caught myself thinking that it would be better to die that go through another summer with hot flushes.
Which is ridiculous. I thought immediately - 'that's ridiculous - it so would not be'. I think I sound melodramatic when I say to people that they're going to drive me into a gibbering wreck of a woman; but I really, actually do think that. I really, actually think that one day I'm just going to sink to the ground and bang my head on it over and over again; or just start muttering nonsense. It sounds so pathetic - 'I'm hot' - I'm sure people think ' how bad can it be - it's just feeling too hot' but by the time I haven't slept through the night for *two years* and I continually feel sweaty and sticky and disgusting - it's amazing I can still bear to live with myself. It's amazing that I can string even two words together. I feel like a disgusting creature who no-one in their right mind would want to be near and then combine that with hating the way I look physically and it's amazing I still exist.
Sleep - I used to put my head on my pillow, fall asleep and not wake up until morning. Or if I did wake in the night, then I'd look at the time, roll over and fall asleep again. Now, I can sleep for a max of 4 hours straight on a good night - then I wake up, sticking to my sheets and can still be awake 2 hours later, tossing and turning, going hot and then cold and then hot, repeat ad nauseam. If I get back to sleep then it's usually for no more than an hour at a time. I've been given Lorazepam - which doesn't make me fall asleep; it's a muscle relaxant - so I lay there, relaxed, but hot and awake. Nice.
The best night's sleep I've had in the last year was the night before last when I finally resorted to codeine to get rid of my headache. I fell asleep pronto (I usually lie awake for up to an hour listening to Michael Palin or Garrison Keillor) and then the codeine made me so drowsy that when I woke up, I managed to sleep again - for nearly 12 hours. *12 hours*. I cannot even recall when I last slept that long. It wasn't the best quality sleep and I woke up feeling groggy but, by gum, it was still pretty damn good. Shame I can't just knock myself out of codeine every night. (No, I am not stupid, I shan't be doing that.)
Exciting needle sticking and pamidronate drip today. Thankfully my (fave) nurse in the chemosuite knows how to get into my veins and all was done without unecessary bruising.

I would take a picture to demonstrate the lack of success in the CT department earlier this week but the camera wants new batteries first and I can't find them.

I think I've run out of steam now - but I have written quite a lot this evening - I think wearing my Fussy shirt today has helped the word-stream....

The rain in Spain

Ugh, hate - Xeloda. Messing with my lower digestive system. (Why yes, that is me being polite about saying it's UPSETTING MY BOWELS.) Just the opposite way round from all the other chemo I had, which had the exactly the other effect.
Funnily enough - neither of them is a fun side-effect.
So.
Am nursing lovely cramps and waiting for it all to eff-off.
(Are you listening bowels??)

Haha. How many people can I put off ever reading my blog again?......

How I wish it were the diamond effect.

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.