Friday, July 10, 2009

In Memoriam

Our dearest Emily passed away peacefully at home yesterday, Thursday 9 July, surrounded by her family. We are profoundly grateful for the time she had among us and everything that she shared with us. Her courage and fortitude in the face of adversity was an inspiration to other patients at the Royal Free Hospital in Hampstead and to those she leaves behind. We give thanks for her life and for everything that she achieved, and are comforted to know that her spirit is ever with us, in the people and places that she loved. She was and is unique and irreplaceable and we shall never forget her.

Thank you for reading her blog and for helping Emily on her journey.

David ("The Dear Other") and Emily's family (Colin, Beverly and David)

Sunday, May 17, 2009

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.

Tuesday, May 05, 2009

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.

Wednesday, April 15, 2009

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."

Thursday, April 02, 2009

Whilst you're down there....

I'm so upset.
I've had a lovely 10 days with my brother visiting me from the States and we did some fun and important stuff like spending a couple of days on Lindisfarne where we used to go on holidays as children.
He flew home last night and I was so sad to see him go and apparently he got back having flown 7 and a half hours and his girlfriend picked him up at the airport at 9pm, dropped him off at home while she went to check on a house she was 'sitting' and then came back and dumped him at 1am in the morning.
He's had so much crap in his life already that this was the last thing he needed. He's just weaned himself off antidepressants after around 5 years. His job ends in a month when the store he works in is being closed. He never finished college because of the depression and has never been able to bring himself to go back. He's not eligible for COBRA so he'll have no health insurance. Plus all the crap that's happened to me.
This is not fair. I just want my little brother to be happy. To have someone to support him when things get back with me. To have something go right in his life. I swear my family is cursed. I don't know what we ever did wrong. I've always thought we were good people. I'm sick of it. Sick of constantly dealing with hard stuff. I'm so tired of holding it together, of keeping on keeping on. I'm sick of it; I don't want to anymore. I'd like to give up now.

Thursday, February 26, 2009

Set condition 2 throughout the ship

Hello - apparently I am a huge drama queen who should just stop whining.....
I still entirely blame February.
There will be a CT scan in the next month or so to check the state of the lungs. The Princess Oncologist was unimpressed with pain in the shoulder and didn't even want to look at it.
The lymphoedema massage was painful.
You know people sometimes refer to 'good' pain? Well, this wasn't that. It was "owowowowowowowow please stop" type of pain. It was pain that means some of the lymph fluid was moving but under no definition was it 'good'. I hope the *consequence* of it will be good - but I've got another 3 sessions yet and the pain itself? Crap.
The oncology clinic seems to have tapped into my psyche. Last week I sobbed at the Dear Other that I didn't think I could stand to sit in that corridor one more time, I hated it and I didn't want to go there ever again. When we arrived at the clinic yesterday there were signs indicating that we needed to follow the arrows elsewhere. Lo! And Behold! The clinic has moved to their new home (which has been on the cards for nearly a year, I think). But I didn't! I didn't have to sit in that corridor! Or go in that office where I've kept hearing bad news! I never have to go in there again!! They fulfilled my wish of not having to go there again. The relief! They celebrated by making me wait for my 11.30am appointment until 12.45pm.......sigh. Some things *don't* change. The new clinic has windows! (The view is crap, but, daylight!) And a waiting area that isn't a corridor! And is shared with cardiology - so rather elderly people keep shuffling in and out.....perhaps it was just Elderly People Day because I'm sure heart conditions apply to many age groups.....
So, I survived for another 6 weeks. Then there will be Results and far more of a likelihood of Change.
Thank you all who rooted for good news. I think you swung it. Especially those of you who crept out of the woodwork and especially those who root all the time and say so. I appreciate you all. I really, really do.
Roll on March.

Monday, February 23, 2009

Poke, poke, poke

I have this pain in my thigh. Sort of pokey. Very localised. About 6cm in diameter. It's worse at night, especially when I lie down. Goes on pretty much all night. And it makes me want to stab it with a very sharp, pointy knife.
Probably on the basis that the new pain would detract from the original pain.
The only thing that makes it go away is the Co-dydramol but when the rest of me isn't in pain I'm not taking it because I have a 6cm patch on pain in my thigh. That's ridiculous.
However, do not be surprised if you catch me thumping my own leg saying things like "Just fuck off!"

Sunday, February 22, 2009

February blues

Hello, it's February.
It's always bad in February - see previous Februarys.
Same thing - bit worse.
I am mostly coping by putting my head down and forging towards March. There will be a slight hiccup on Wednesday because I can't ignore or avoid the Princess Oncologist. I am fearing bad news. I am always fearing bad news. But this time I think there are some nodes in my neck that weren't there before. And my shoulder is looking scary. I thought for ages it was lymphoedema - which it still may be, partially or entirely - but there's now a distinct bump at the front......
I think this may be my last year. And I fear that thinking it will make it so. So I try not to think it. Which is hard to achieve. I didn't really believe that 32 would be it. I still don't but it's starting to feel a bit like it. This is Not Enough. 32 years is Not Enough.
I am very, very frightened. Not of being dead. Of the dying. I am too vain to die. You look crap and death-y for ages leading up to it. I'm not up for that. Plus, you know, being in pain and fear and sadness.
February, hurry up and leave. I hate you and you make me totally unsettled.

Friday, February 06, 2009

The pincushion

This afternoon at the Haven I was putting my coat on to leave when I realised something was poking me in the side of my was an acupuncture needle that accidentally got left in......whoops.

Today I had 2 needles in the tops of my feet, 2 in my lower legs, 1 on my inner left wrist, 1 in each shoulder, 2 around my collarbones, 1 either side of my nose and 1 on the top of my head. Freaky, eh? I try mostly not to think too much about blurby energy routes etc. but I have felt some funny sensations - jumping nerves, tingling and then one moment of panicky-ness. Which I thought was to do with the fact I had needles either side of my nostrils but in acupuncture terms is something more to do with having a needle in your wrist on your heart-kidney line/link/thing. I, apparently, am a heart/heat/fire person and my problems with hot flushes/lymph swelling/panic are to do with my heart/heat being too active and it needs to connect more with my dehydrated kidneys......

This is why I don't listen very much to this. But, he oddly did make me feel better, feel a bit more connected today. So, I'll take it - heart and kidneys? Are you listening? Kindly connect. Sharpish.

It does leave me feeling stiffish and tired.....

Friday, January 23, 2009

The pills, the pills....

Isn't it interesting how, if you speak to the right person, suddenly things are possible.....
I saw the Princess Oncologist last week for the results of the last CT scan. Bit odd. There are a couple of new nodes in the lung; but one is 1 millimetre and the other is 2 millimetres. So she was implying that she wasn't 100% sure they were *really* there?! But even if they are then they're so small that she wouldn't consider changing the treatment regime. My bones are mostly showing up as sclerotic (I think that's how you spell it) - which basically means bone scar-tissue. I think this is a good thing. I'm not sure.
So - sticking with the aromastase inhibitors - but she did agree to swop me onto Exemestane instead of Arimidex - a very small minority of people with Arimidex pain will do better on this. I'm hoping to be one of them.
Also - better pain killers *can* be had! Diclofenac and Co-Drydamol are the order of the day. I'm not thrilled. Diclofenac has upset my stomach when I had in the past and, well, Co-Drydamol is just codeine in another form. But, as ever, I refuse to be a model patient and just take my drugs. I have, of course, been playing with them already to see what the minimum I can get away with is. And because the Princess Oncologist has apparently met me before she has set a Macmillan nurse on me to supervise. Well, she asked if I'd agree to that - which I did. Surprisingly. I was in pain on the day. I'm surprised I didn't just panic and refuse because I associate Macmillan with the whole Palliative (no-hope) scene which I'm not ready for yet. Well, I'll never be ready for it. How can you be?
However, the Macmillan nurse and I are playing phone-tag at the moment so I'll probably have it all sussed out by the time we actually manage to get in contact with each other at the same time.
So, all that useless rabbiting by the useless breastcare nurse was rubbish.
So, people keep telling me this is good news. I, don't feel like that, so much. There may or may not be progression - the progression could have occured while we were waiting for the Arimidex to build up to beneficial levels in my body - takes at least six weeks. I just, I don't know, I just don't feel that confident. Or celebratory.

Thursday, January 15, 2009


Happy New Year - blah etc,
Happy fucking leg cramp that won't go away.
Happy new pain killers that are not making the leg cramp go away.
Happy no sleep for me tonight, thanks.
So, so, soso, so , so so tired of this all.