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.

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!

I'm in the fil-ums

Quite a while ago I was asked to participate in a short documentary film about complementary therapy services offered at my hospital - the Royal Free Hampstead. I agreed, because, as you know, I usually have plenty to say. This was an interesting little film because it was actually made by a film student who was looking at using film in dance and movement and she was interested in the movement of massage as well as its importance.
So she interviewed me and I yabbered on and then she edited it and interviewed lots of other people and came up with her finished product which is now available to view on the hospital website......
I think they've done a bum job of uploading it and it seems to freeze my browser - Firefox - it may be different with other browsers or by downloading it. Do let me know if you have any luck with it or if it's a pain - I'll complain about it then :)

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.

The nitty gritty

Finally, a little breathing space......
I am doing too much - I know I am, but most of it I'm committed to now and I can't get out of it/cut back. I've just got to ride it through and finish them (and then try not to pick up any more!). So I've done my talking (for now) and I've got Guide camp out of the way (yes, my guides made a spectacle of themselves and behaved less well than they could have - fantastic! (not))
So, where am I now?

Peru - one weekend away in the UK to go, some leaders meetings and then, in August - we finally go. Oh, injections, them too - I had my Yellow Fever last week - Rabies jabs start this week - Heps A&B to come later on. Today I go in search of new walking boots so I've got time to wear them in before we go. 3 weeks city walking until Scotland and then a week of outdoor walking there - should get them into shape.

Guides - only six weeks left until school breaks up and we finish and we're doing First Aid for about 4 of those.

So - my 'talk'. It went very well; I was quite nervous beforehand and I'd sat through about 7 presentations on various aspects of breast cancer which hadn't improved my state of mind. What did I say? Hmm, I can hardly remember now - it's as if standing there and saying it to all those people has dulled it all.
I talked about how difficult dealing with diagnosis is - from the perspective of having to take in what's happening but also about how confusing and difficult it is to negotiate the new 'foreign country' of hospitals and finding your way between all the different departments to make appointments and the waiting for results. I talked about how demoralising the treatment process is - about how you lose ownership of your body, about how my body had been looked at and handled by more people in that year than it ever had done in the whole of the rest of my life. About loss of independence -not being able to look after myself; about being 'apart' from the rest of the world; about being the walking embodiment of the potential of death; about being 'marked out' literally and figuratively from friends and family. About how difficult I've found the change in my body and about how people feel they have to right to comment about my appearance. I talked about the invasiveness of treatment - of having my body manipulated and things put into in and taken out. Then I talked about how difficult it has been/is to be without cancer - to find my way back into the world; about how it's not over when the treatment ends; about how difficult it is to live in the memories and to move out of that place. And I told them how having cancer has made me feel like I am hopeless and worthless and untrustworthy.

There was a moment of silence after I finished and then I did get some questions - some good questions like 'what could we do to make the time of investigation and diagnosis easier?' and about how to support people mentally and emotionally using counselling and the breast care nurses. Afterwards more people came up to me and spoke to me - one of the members of Cancerkin who has had breast cancer thanked me for putting into words some of the things she had also felt. Several doctors came and asked me more about what they could do and thanked me for being so honest and 'brutal'; one asked me about my portocath and about what difference it had made to my treatment - he then asked me if I would come and speak at his hospital if he asked me. I said 'yes' but I don't actually think it'll happen. Several people came and asked me if I had acting training/experience because of the way in which I had spoken; so I did have to own up to having studied some drama at university. But I wasn't really using those skills - I didn't need to; I was just speaking the truth in the best way I could, to try and help people to not just understand but also to feel some of what it had been like for me.

I'd like to put up the whole shebang for people to read but I think it's too long for a post and I don't think I have any other options on this site - plus, I don't think it will read as well as it 'speaks'. I'm toying with the idea of 'odeoing' it but I don't have a mic at the moment. Plus, I'm not sure if I want to put it out there for the whole world to look and potentially to take. It'd my story and I'm verging on the paranoid about keeping control of it. I don't want anyone else to claim my words and I don't want anyone else to change them. They are mine. However, if you'd like to read it then drop me an email, introduce yourself (if I don't already know you) and I'll send you the Word doc.

I will, once I have time, be condensing it into an article for the Cancerkin newsletter so maybe that will turn into something more readable - well, that's the plan anyway.

Right, enough for now - more things to do. Remember, even if I'm not emailing and commenting I still think about folk all the time.....be well, be whole, be loved.

Bodily landscapes

The weekend before my mastectomy I had a little personal event. I needed to mark and grieve and say goodbye to myself as I was - mark that I was going to lose my breast. I decided to do it as a piece of landscape-natural art. Once upon a time, when I still had great dreams and aspirations that I believed could happen, I was very interested in the work of a group of artists/performers called Welfare State International. They did a lot of work with communities, creating relevant art and events but they also did something they referred to as 'Rites of Passage' - creating personal ceremonies or events or moments to celebrate births, deaths, marriages etc. And their work could include the natural environment, it could be sculpture or poetry or anything. So I took these ideas to create my own, personally meaningful rite of passage.

I very carefully planned it out - it was to be a piece of 'sculpture' or rather, a 'piece' - using only natural materials, rearranged in their environment for my purposes but where they could be seen by other people. I thought hard about what I wanted to 'say' with my piece - it was important that it was all natural. I wanted to name or represent my sorrows; commemorate and appreciate the people supporting me and the qualities I drew from them to get through the difficult times; represent an onwards journey and commemorate or celebrate or salute the breast I was going to lose.

The design was a circle of long grass that was bent and flattened into a spiral, there was then a plaited garland of flowers intertwined with cones and berries and seed heads and pods, there were stones and rocks and at the centre a woven unturned basket made from twigs and covered with ivy with feathers interspersed.



The meaning?

The spiral of grass represented life - circular but also spiraling, ongoing and increasing - where I hoped to be going.

The garland was made from long stemmed flowers: rosebay willowherb and another yellow flower - one long stem for each of my grandparents, my parents and my brother. These are the influences in my life and my supporters. I felt that I had been given particular qualities from each of them that were helping me on my way.
Grandad: courage, patience, recovery
Grandma: courage, patience
Grampy: patience
Grammy: bravery, confidence, enthusiasm, the ability to gather people up
Mum: tenacity, determination,
Dad: steadfastness, determination
Brother: generosity
And of course, great love from them all. And all these qualities were represented by the cones and seeds and berries as they represented growth and living, the potential new life within them.

The stones were to represent the sorrows:
My sadness at having lost all but one of my grandparents, my sorrow at not knowing them better, missing them, the sadness I felt for the difficult things they had gone through in their lives, the sadness I felt for my brother's sadness, sorrow for the opportunities and dreams for life that I had let go, having cancer, great sadness at losing a part of myself and of being betrayed by my body and sorrow at having shut myself off from my family and friends.

Finally, at the centre - the woven basket, upturned represented my breast - the vines and leaves showed how it was a living, growing thing and the feathers, the softness of skin and flesh.


It took me two days to complete - the first I scouted round Hampstead Heath for a spot where I was going to create my piece and collected up some of the bits I needed, especially the parts for weaving the basket. The next day I made it. It rained on and off and I got quite wet - I also went bra-less with a low cut top - to flout all that was to come.

When it was complete I took photos and then very resolutely turned my back and left without turning back. I didn't go back to see what happened to it - in my head it is still there.

I haven't given up yet!

OK - I went away for a while, and then I came back and caught up on my links and Minerva is kicking cancer's ass again. I'm so sorry Minerva - you don't deserve it but somehow you keep kicking ass.

::Good thoughts/vibes:: in your direction.

I remember, and my nerves twang when I remember my Taxotere (Docetaxol) run. In fact, I definitely have more aches since taxotere. Taxotere pain had a nasty habit of settling in places where I already had aches; my hip joints for example. Like it was searching out my weak spots and rubbing its hands with glee at the thought of causing more pain. It was just unescapable. The grand solution for this pain from the doctors? Ibuprofen; and when I complained that that only took the edge off for about half an hour and then I had to wait another 3 and a half hours until I could take something else they suggested taking paracetamol in between. Right. Uhhuh. They even gave me codeine after my portocath surgery, for heaven's sake! Had little effect and in the end they reduced the dosage of the taxotere - after all, the skin on my hands and feet was falling off; my feet and hands were tingling - I couldn't tie my shoes properly, peel oranges, open cans or unscrew bottles; my nails got a fungal infection under them and went orange - very attractive!

But, hey! You know all this. I've said it all before. But it's still there. This is the trouble. I can't escape this - it's happened. I get reminded every day when I see my scar, when I feel the pull across my chest. It reminds me that I have one breast, that I had cancer - and then all the fear and the memories get pulled back into me. How do escape this? Before Christmas while I fretted about waiting for the results of my smear test I thought to myself 'I can't take this anymore; I can't stand it - I'll just stop eating and then I'll fade away and I won't have to feel anything'

Insane. I know. I am heartened by the fact that I thought this while staring out the window on the third floor of my maisonnette which has scaffolding outside it - where I could have climbed out of and three floors is pretty far up... But it didn't even occur to me - which makes me feel comforted; that I didn't mean it. I didn't want to end my life - I wanted to end the fear and the sadness; and that isn't the same thing.

And yes, I have confessed this to my counsellor and she is not worried; so don't you be either. And kindly keep any tickings off and scoldings to yourself. I don't want to hear about offending God, going to hell or anything else, thanks. If that's all you can say then keep it to yourself. Thanks!

In other news.
I have yet again missed De-Lurking week. I keep meaning to; I wish it was in May - May would be a much better month. I hibernate in January. Which is why I haven't really been here. It's like January doesn't exist; after Christmas I seem to be in February before I know it.

I saw my mum for a week. A whole week out of one year. I survived a year post-cancer in a world where I know that life is *SHORT* and I saw my mum for a week. That is so shit. Why am I not just doing what I want? What I feel like? Why aren't I still being selfish and taking what I want?

His nibs won't declare his intentions in Pizza Express. He said so. We were talking about my working and what will happen when I move to the new house in Northampton and I confessed that I was skittish about not being independent - that I felt it was wrong not to support myself and he so sweetly said that we were a partnership and neither of us had to do everything ourselves, we could rely on the other person. Sweet - the man is sweet. I then plucked up the courage to finally ask if he thought it would be legal partnership and he said that I knew he always did things properly (or something like that) but that I didn't expect him to declare his intentions in Pizza Express. Well, no. I suppose not. But, ::smile::, that does sound like there might be some intention declaration in the future. And I'm actually happy to have some warning, as it were.

Today I gave my unstinting opinion on mastectomy bras. So far I have bought all of mine from the same place - a little shop called Nicola Jane with specialist fitters who are lovely and kind. They looked after me so kindly and gently when I first went there - I needed bras for my prosthesis but I couldn't bear to look at lingerie and Aimee picked out things for me and helped me find some that made me feel good about myself. So, this is the second time they've invited me to come and wear-test some of their new lines. They're looking at the fit and the style and how it works when it's worn. Both times I've found it really interesting and haven't been able to resist saying exactly what I thought! But this time the managing director was there and I went through my whole psychology of underwear spiel - poor chap! He was kind enough to give me his card and let him know if I had any ideas or comments.
So I couldn't resist acquiring a few new things while I was there - they were very kind and let me pick out a free bra to say 'thank you' for my time - nice, black, lace, narrow straps. I can't begin to tell you how important narrow straps are - so many mastectomy bras are what my friend Mol would call 'boulder-holders' with enormously thick straps and general nastiness and they make me feel thoroughly depressed - I won't wear 'em. I also bought a fantastic vest top with a built in, pocketed bra - it looks gorgeous - I'm in love!

Well, after that long absence I've gone on a bit - better drop it now really.

District nurses

After my little run-in with febrile neutropaenic sepsis I had to delay my next chemo treatment by a week, to give my body a chance to get my white blood cell count up to a safe level.
At my next clinic appointment my consultant decided that after the rest of my chemo treatments I would have G-CSF injections - they are a growth factor that stimulates the bone marrow to make more white blood cells; which, of course, are one of the things that the chemo kills off, leaving you with little protection from infection. So, for five days on the week after my chemo treatment a district nurse would come to my house and give me a Neupogen/filgrastim injection. The district nursing system is a fantastic thing. I paid nothing for this; I would just telephone the DN office or the nurses from the chemosuite would send them a fax with the dates I needed the injections. I would be given the prefilled syringes to take home with me after chemo along with my pile-o-drugs - also all for free. And they would live in my fridge - they had to be kept cool for the week and I had my own sharps box for the syringes which lived under the sofa (of course!)

So, the first Monday morning after my second round of chemo, Mark turned up. Mark was a very sweet, Scottish (I'm a sucker for a Scottish accent), male (in case you hadn't noticed) district nurse. And he was a sweetie, made me feel much better. Asked about how I was feeling and did the injection for me. I point-blank refused to do them myself. Various people kept telling me I could do them myself. My reply was that if I wanted to stick needles in people I would have gone into the medical profession and that there was a reason I went into libraries. I didn't see why I should do them when there were all these people who had been trained to do it!

So I had a lovely mix of nurses over my six months - a couple of great New Zealanders; Ema who just made me feel so much better on one of the days after Taxotere when I felt like I'd been beaten black and blue with a baseball bat and was practically in tears with the pain in my back and numerous others.

I resolutely never looked when they did the injections - which went into my abdomen. They were always quite uncomfortable because they would sting as the liquid went in - the needle prick didn't bother me so much as that stinging did. It was always interesting to see who was the best at giving those injections - I definitely used to be pleased when one particular nurse turned up because she was brilliant - I don't really know what she did differently but I would barely feel a thing when it was her. I liked having the district nurses come because it made me feel a bit safer - that there were people who knew what was what seeing me at the time when I was most at risk of the neutropaenia coming back and I suppose I felt that if there was any problem then they would recognise it and send me off to the hospital.

The other outsome of the neutropaenia was the strict instructions to use Corsodyl mouthwash several times daily to prevent ulcers or cankers or other sores in my mouth. This stuff is weird, I was given the mint flavoured variety and after the first taste I just thought, mint. After I spat it out I thought, ooh, zingy and then I thought 'yuck' - It seemed to mix strangely with the vile taste I already had in my mouth and made everything taste even more peculiar - including water. So, I was really unwilling to use it: but I did. And the only time I got a mouth ulcer was when I didn't use it for a few days because I had run out. I started using it pretty sharpish after that and was very grateful not to have anything worse go on with my mouth. To be honest, the bad taste was so horrible I was glad not to have any further complications. I just felt like I was in a permanent state of feeling like I hadn't brushed my teeth for months, even if I'd just cleaned them; and nothing tasted right. Everything just tasted strange; I stopped drinking tea and coffee: I just didn't fancy them - they didn't taste good enough any more. Chocolate and sweets went - sugar seemed to leave a really horrid aftertaste in my mouth - probably why I lost weight throughout my chemo treatments. If only I hadn't put it back on again. And I stopped eating cheese because someone told me I shouldn't eat things I really liked while I was having chemo because it would put me off them. Funnily enough, I don't really eat cheese at all now and I used to eat it by the bucket-load.....well, quite often. And no, I haven't given it up because of the whole 'don't eat dairy, it gives you mucus and cancer' thing. I just got out of the habit.

Anyway, so that is the story of my lovely district nursing team - thank you, y'all!

Years' mind - September 29th

This is a little of a cop-out post because it's actually what I wrote for the Pink for October site but I think I'd like to share it here because I did take some time over crafting it. It's not a pretty story - but then, so much isn't.

September 29th 2006:

One year, seven months and 3 days ago I sat in a small room in an NHS hospital and heard the words “I’m sorry, it isn’t good news, it is cancer.”

This was two weeks before my 28^th birthday. I sat and I stared at a metal cupboard in the corner and I thought “Goodness me, I hope I wake up soon because this is the worst nightmare I’ve ever had. This can’t be true because I. could. not. cope. with this.” But then, it was true and so I said “Well, that’s a bit of a bugger, isn’t it?”

So, from that point the journey went on: through AC and Taxotere chemotherapy, through “febrile neutropaenic sepsis” with IV antibiotics and a 5 day stay in isolation, through a portocath insertion that initially refused to work, through a mastectomy, extensive ‘jollying’ physiotherapy, through radiotherapy, Tamoxifen and Zoladex. Through uncertainty, fear, pain, tears (alright, hysterics) and depression, the journey wended its way. Wound its way through to a day one year and 18 days ago when I came round from anaesthesia knowing (hoping) that along with my breast, the cancer had gone.

The two, interlinked – something I loved with something I hated; something safe with something deadly; something that was part of me with a thing that was invading me without pity.

I spent the intervening time – six months – trying to assimilate what it meant to have cancer; trying to learn how to be someone with cancer. Someone with no hair, no eyelashes, no eyebrows; someone who could barely walk round the block; someone whose collection of medications made them look like a pharmacy – or a drugdealer (anyone for domperidone? I have enough to last a lifetime but, sadly, they didn’t work for me!); someone living with a lump that was trying to kill them.

And then, (now), then(now) it was(is) gone and I had(I’m having) to learn that too – how to be a person without cancer, how to be a person who *had* cancer. Do I still have cancer? They tell me I don’t, but how do they know? How can they know that there isn’t a small cell lurking somewhere in me, just biding its time? In four years – if the cancer doesn’t come back in the meantime – I’ll “officially” have beaten it. My risk will be no greater than anyone else’s. How will I feel then?

My fear is that I’ll never believe it’s gone and will live the rest of my life with a mental scar as prominent as my physical scar.

Playing with my port - 2

And so they left me and my family came back and I was feverish and shaken and so scared. I had been nervous about the use of the port before she'd tried and now I was convinced that it was faulty and they'd have to remove it and put another one in. And it would probably have to be on the other side and then I'd have two of these scars (a matching pair!) and try explaining that to people.
My parents had rung David to let him know what was going on - poor soul - I think he must have been so scared - he wasn't in London and couldn't get down to see me that day.

After a while, Keith came by - he was his usual cheerful self - nothing seems to throw him. He massaged my legs and feet which was strangely reassuring. I think it's a human-touch thing - it's comforting and reassuring to be touched. We are tactile beings and we need to feel connected. Keith offered to lend me his CD player and a couple of relaxation CDs after I told him what was going on - he could see, anyone could see, that I was in a total state.

Eventually Ivy comes by - she's another reassuring sort but she explains that the chemosuite is really busy so we'll have to wait until things have quieted down a little.
So we carry on waiting - it's amazing how much you wait.
And the sun moves round and streams through the window and it gets hotter and hotter and I was already hot to begin with! One of the nurses finds a fan which stirs the air around a little.

Finally Ivy comes back - this time my parents are allowed to stay in the room. She has me lay down and she starts to feel the whole area around the port - trying to feel where it is and how it's lying - I am like the proverbial board, and so tense; I grip my dad's hand and he tells me to squeeze, hard. Every time Ivy presses or touches the area it's all I can do not to writhe and wince. It hurts, my shoulder is so stiff and I don't want anyone to touch it - but I let her. Once she thinks she's found the right place she puts the needle in - when the needle is put in it goes through the skin and punctures a silicone rubber bubble covering a chamber which connects to a catheter which is connected to a vein. The bubble is self sealing, so when the needle is removed, it seals over.


Unfortunately because mine is so new, I'm still bruised and sore so the pressure of the needle going in presses the base of the portacath back into an already sore spot. The needle goes in, but again, nothing is coming out. I'm freaking - I have this foreign object inside me - freaks me out already and in addition, it's faulty, it doesn't work, it hurts, it's all bad, bad, bad!
Ivy tries to move it around, pushing it down, moving it around slightly - it's excrutiating, every time she does it a shot of pain goes through my shoulder - I am brave, I lie there and take it and squeeze my dad's hand and try not to gasp too much but I can feel it catching and grating. My mum stands at the bottom of the bed - holding my foot. I think she must have found it very upsetting - it's hard to see your child in pain and not be able to help. After about half an hour Ivy says that it seems to have been put in quite deeply, that the stitches are in the way and that it's quite swollen. She thinks the problem is that these factors are preventing the needle from going far enough into the port - she wants to try a 1" needle. However, she'll put some Ametop cream - a topical anaesthetic cream on the area to try and decrease the pain somewhat. The cream has to be on for 45 minutes before it really takes effect so Ivy goes away for her lunch.

I can't remember that time really - other than a feeling of sheer and utter panic - I often described the way I felt last year as 'twanging with anxiety' and that's what it often felt like - I was so wound up and tense with anxiety that I felt like the vibration and sound and tautness of an elastic band stretched out as far as it will go. I was at snapping point for a year - I never knew if I was going to completely lose the plot from one moment to the next.

Ivy came back, she cleaned off the cream and put the new needle in - it still hurt. I think it was the underlying bruising and pulling of the stitches that hurt more than it was the needle going in. This time a little bit of blood pulled back out into the syringe but not much and it was hard going for her - it still wasn't really working. Ivy did move it around a little more, with no better results. Eventually she said that she wanted to stop - she could see how much it was hurting me, it wasn't working properly - probably because it was swollen and the stitches were still in. She would put in a cannula for the antibiotics and we'd try again another time. She didn't want to hurt me any more.
She redressed the portacath site and stuck my hand in hot water to bring up the veins and put a cannula in the back of my hand. Which she did beautifully, without a hitch, so that I barely felt it - why couldn't they have done that in the first place?
Nightmare nurse came back and injected the first lot of antibiotics into me - it felt cold in the back of my hand and up my arm but hopefully they would start to do their job.
They still had no idea where the infection site actually was.
This is part of the view I could see from my room.

Playing with my port - 1

I hate, hate, hate being moved around in a wheelchair: it makes me feel so conspicuous. Like everyone is staring at me; like I must be ill. Well, when they wheeled me up to Moore ward I hated that and I hated having to go back there.

As I was wheeled onto the ward we passed Trish (my breast-care nurse) who was surprised to see me and asked what I was doing there. I have no memory of what I replied. Probably something flippant - it usually was. Laugh before you have to cry and all that.
I was taken into a room on my own. It was a corner room on the same level and side of the building as the chemosuite so it had that fantastic view over London again but this time the view was all mine. Later the sun would stream through those windows and turn the place into an oven.

A nurse came into the room with me and my parents and she explained that I would have to stay in here and not come out and that they would prefer to keep the door closed. People could visit but they would have to wash their hands and use disinfectant spray on their hands and then put on plastic aprons and gloves before they came into my room. This was to try and protect me from germs. For the same reason I was not to be brought flowers or plants or fruit because any mould spores could be very bad. She told me that it would be much better for me to eat only cooked foods: no salads - again, to try and make sure I wasn't exposed to any more germs.

Things suddenly seemed much more serious - until this point I don't think I'd really grasped quite how serious it was.

In retrospect I chortle at the gloves and aprons - I honestly don't see how that helped to protect me from germs. Why weren't they being made to wear masks, what about shoes, what about the backs of people? I'm firmly convinced that they were really just to provide some entertainment for me while I was stuck in there on my own.

The nurse went on to say that they needed to give me IV antibiotics and that they wanted to access the portocath in order to take a blood sample to see if the infection was there and to use it to inject the antibiotics. This would be the first time it had been used. In fact, it was still covered in a dressing. In fact it had just been covered with a new dressing in A&E. One of the nurses there had cleaned it while we'd been waiting. And we'd watched and learned how you *really* use those dressing kits. What you actually do is to pour the contents of the saline sachet into a little compartment of the kit and then you take pieces of the gauze using the tweezers and dunk it in the saline and then wipe the wound. Not gently dab it - oh no! Quite firmly wipe it; several times with new pieces of gauze each time. No ungainly pouring, no tentatively dabbing - I was rigid like a board while she did it - and I think I may have been holding my breath too. Not because of pain or discomfort - I think I just felt a bit like, here was this place where I'd been cut open. The inside of my body had been exposed, opened and although it was healing and although it had been stitched up I think I still felt a bit like one wrong move would result in my insides falling out.

My parents went off at this point - I think they were probably gently encouraged to leave - and my ma probably was desperate for coffee by this point. Trish came in and talked to me, reassured me and offered to let Keith and Elaine know I was here. Then the ward nurse came back - she was Scottish, I recall and she brought two of the SHOs with her and various accoutrements to access the portocath. Without really asking me or talking to me she started talking to the SHOs about how to access a port. Saying things like "this is how you're supposed to do it but I usually just do this...." and I'm laying on the bed like a lump of meat - really scared. I've never had this done before; I'm feverish and this woman is about to do something to me that I don't want done and now she's saying that she doesn't do it the way you're supposed to.....she's not earning my trust!

She peels the dressing off and cleans the area with an alcohol wipe and then presses the area a bit: ow! It's swollen, it's still got stitches in that pull and I guess I was kind of bruised too. Anyway, damn uncomfortable. Then she puts the needle in (all the while talking to these other people) and then tries to get blood back from it - nothing. Faltering in her spiel to SHOs (HA!), she tries to 'adjust' it, i.e. move it around whilst the damn thing is in me - ow! I am, by this point, rigid as a board and either not breathing or hyperventilating, or both. She then says that she's going to get Ivy from the chemosuite to come and look at it; apparently Ivy's *braver* at *playing* and *poking around* with them than her.

At this point my fingers were tingling - pins and needles and I asked why and she said 'not enough oxygen' - I guess I had been holding my breath: can you blame me? So, now we had to wait for Ivy - she was busy in the chemosuite (the chemosuite can get horribly busy at times). I've been poked and stabbed and now I'm waiting for someone to 'poke around' - don't forget the fever, the stitches and the stiff shoulder in this mix - can you imagine how great I'm feeling at this point? Don't - it was crap.

Fever - the next instalment

So, where was I? Where were we?

Quick recap: Burning up at 38 deg C; dressed in a weird combination of clothes and being bumped over speedbumps in a taxi (which was agony for the side that had been operated on - I could feel every bump in the road and it jolted my shoulder and pulled on the stitches).

Ladies and gentlemen: get comfy and I'll continue:

We got to the hospital - by this time I think it was around 5 in the morning - it was starting to get light at any rate. We went in to A&E and, thankfully, the place was deserted - there were only a couple of other people there. We checked in and I fished out my hospital number and explained that we'd been told to come and then sat down on the sort of metal bench/chairs that you sometimes get at railway stations. Not comfy when you're feeling unwell I have to say.
I was still shuddering - visibly. I couldn't hold still. And I was half dressed in nightclothes and half in really scruffy, crappy clothes by which I'd have been mortified if I'd noticed at the time. This was such a strange time: I think that because of the fever everything felt kind of surreal. Here I was, yet again - there was such a sense of 'of course I've got neutropaenia - everything that can possibly go wrong will go wrong if I'm involved. I'm a walking nightmare....'

The triage nurse called me in: to what looked like a cupboard with a desk and 2 chairs - took my temperature with one of the fancy machines that beeps and it was down: to 36 degrees C - 'what!? That's like, normal!' - we swore blind that it had been higher than that earlier. At this point I was starting to feel like an idiot malingerer who can't even take her own temperature. 'Surprise, surprise! Emily can't do anything right: even being ill'. I can only conclude that the brief time outside had cooled me down a little. She asked if I'd taken any paracetamol - somehow this hadn't occured to me - that we could self-medicate. All the blurb had said: Panic-stations! Neutropaenia! Come to the hospital! It didn't say: have some paracetamol. So I said 'no' - probably another incident where hospital staff thought I was a lunatic.

They took me through to a cubical and sent for the Onc. doctor on call. And I had to lie on 'the bed' - 'the bed' that marks you as 'the patient', the 'ill person'; so people can stare at you and wonder what your problem is.

The SHO on call came down and it was the same woman who admitted me before the portocath surgery - she remembered me, I didn't really recognise her. (Hey, I had febrile neutopaenic sepsis at the time - give me a break!) She was of the opinion that it was far too late after the chemotherapy for it to be neutropaenia (low blood counts). But she took a blood sample and said they were going to do an EKG, Chest X-ray and take a urine sample - to try and track down the infection causing the fever.

I have an unknown infection invading my body as well as cancer - I'm starting to feel that my body hates me: why is it doing this to me?? Untrustworthy, sneaky body....

And so we sit - we're good at this by now - sitting is our forte. The waiting is not so easy however. There aren't too many people in A&E at this time; unfortunately someone who is in the next cubicle really isn't feeling well and there are lots of groans and moans of anguish plus doctors sounding very frustrated: well, you'd be pretty frustrated if someone came and said they weren't well but then were totally uncooperative about being examined etc. I think they thought it was appendicitis but she was refusing to let them examine her - or something. It's really quite horrible, having to listen to things like that: I feel sympathy but it's scary and I was so scared myself; it just make me even more terrified. I think that close proximity to other people and being able to hear other people's pain, discomfort, bodily functions was one of the things I hated most last year. I didn't want people that close to my pain and misery, so why couldn't I afford them the same respect?

Change of nursing shift came - 7.30am and with it: the breakfast trolley! Weetabix and tea for me! I must be feeling better! Well, I was feeling better than I had in the night but mostly, like I did through most of the chemotherapy, I simply felt that I had to eat. My body was trying to repair itself and it needed fuel and nutrients to do that; so, meals Must Be Eaten (and the more fibre, the better! Constipation can See Me In Hell! (SMIH)) So, I ate - Weetabix became quite a standby really because once my mouth got sore that sort of baby-mush was easier to manage. I may never eat Weetabix again.

So then a *rather large* nurse came by and stuck little sticky patches on my chest and my back and, I think, my ankles (or have I made that up? I'm honestly not sure) and hooked me up to a machine to check my heart. She had to do the reading twice because I think the first one came out with a bit of a dodgy reading. And then I toddled off down the corridor to X-ray: they wanted to put me in a wheelchair to take me there but I refused. As I said, 'I haven't lost the use of my legs yet!' Of course, there would be times in the near future when I would become very tottery on my legs, when it would be all I could do to go for tiny walks clutching onto the arm of my dad or David. Where we would have to stop every hundred yards while I rested.

This thing was going to knock the shit out of me; but I didn't appreciate that yet.

A whole new corridor to sit in while I waited for my Chest X-ray - my third in a month. It was kind of odd to be sitting there in my nightshirt in a corridor, shuddering - other people around me must have thought I was pretty scary. I thought I was pretty scary.

Afterwards I toddled back to my cubicle where my folks were waiting, provided my urine sample (deep joy: why has noone come up with an easier way of doing this yet?) And we waited some more.

Finally - they decided they needed to admit me..... :( My white blood cell count was low. Very, very low - 0.9 low. I think the normal range is 9-11 and they won't give chemo if it's below about 4.5. So, basically, I have an infection: but they can't pinpoint where; and I have virtually none of the little blood cells that are going to kill off the infection - this is bad. Although, of course, noone is really saying this to me at this point. I think the SHO was a little abashed because she'd said that she didn't think it was going to be a problem with my blood counts.

Guess what, SHO-lady! This is me you're dealing with! Things you don't expect are always happening to me. In fact, you should take it as read that if you don't think it's likely then it's definitely going to be the way with me. I am that contrary.

It took them a while to get themselves sorted out, to get my notes together and me into a wheelchair and, thus, I was taken back to my favourite place (not):

Moore ward.

My first surgery

So, where were we?? Waiting to hear from the admissions office about having the portocath put in.....

I heard from them the following day: Thursday. They telephoned and asked if I could be at the hospital by 4.30pm at a different ward to the one I had been sent to originally. I choked out a 'yes'.

My first sugery - the first cutting into my body - my perfect, mostly unblemished intact skin was going to be invaded, cut, scarred so a foreign, man-made, unnatural object could be put into me. And I was somehow agreeing to this although the thought of having this thing that didn't belong inside my body was making me want to run far away.

I can't quite explain to you the horror of this for me - perhaps if I tell you that I have never had my ears pierced and that I can't write on my hands because I basically feel that my body is a perfect creation that shouldn't be meddled with. The idea that putting holes in myself or putting substances on it that can be absorbed that are not designed to be in contact with your body - it frightens me, it threatens my physical integrity, I can't see why it won't damage me. Can you see what I'm saying? It probably just sounds paranoid - but it's not - it's about my physical integrity, it's about my relationship with my body, it's about feeling whole.

But, I was told this was going to improve the chemotherapy experience, which I felt I couldn't cope with. So, I said 'yes'.

I had to ask what I should bring with me: I had never had to stay in a hospital before. So I packed up overnight gear, a book and gave my mum my mobile phone and we set off for the Royal Free. Once there we made our way to Moore ward which is the cancer ward and, as such, is the most frightening place I've ever been. There are people in there who are obviously very sick, who are probably going to die from their cancer. People who are white and wan and palid, wearing turbans to cover bald heads, lying back with barely the strength to sit up in bed. I wanted to run out again as soon as we arrived but my mum and I made our way to the nurses station and I told them who I was: they looked a bit blank but then someone recognised my name and they showed me to a bed in a four person room. We waited for someone to come and admit me. I sat on the bed, my mum sat on the plastic-covered chair which makes you sweaty. The place was like a sauna but a lot less nice - I was absolutely sweltering and pretty soon, my head began to ache. We sat around for 40 minutes or so and then my mum went off to try and call home to get hold of my dad who hadn't been home when the call from the hospital came and would get back to flat and not know where we were. She came back: no luck and noone had come anywhere near me. Eventually a nurse came by and started filling in some forms about my general health and did I wear glasses or smoke and were my bowels regular: don't you just love medical people.....?

Around this point, my memory goes hazy: I remember my head getting worse and worse, I remember my dad eventually turned up, I remember the woman in the bed next to me had about 5 or 6 visitors whose mobile phones kept going off despite the fact they were supposed to be switched off and they were all talking really loudly and arguing with each other and walking back and forth and in and out of the room. The other people in my room were an older woman who had terrible back pain and was on morphine. I remember her daughter massaging her mothers feet with olive oil. And the fourth woman stayed mostly behind her curtains, she had a visitor but she looked very unwell and uncomfortable.

Eventually visiting hours ended and my parents left.

My parents leaving was terrible: I wasn't going to see them again until after the sugery and they were just leaving me there on my own! I'm sure they didn't want to leave but they couldn't stay. So, I got into my pyjamas and got into my white, crisp bed and tried to read. In the meantime the obnoxious visitors still hadn't left even though it was past time and then the ill-looking woman went into the bathroom and I could hear her throwing up and crying quietly. Finally someone came and ushered out the obnoxious ones and the woman came out of the bathroom and *finally* a doctor turned up to admit me and to take some blood. She was a nice, young, female doctor. She used a tiny gauge needle to take the blood which I barely felt and she asked how I was and I said something like 'don't ask' and she asked me if I want to see a portocath. I very tentatively agreed - I didn't really want to but I'm hopeless at saying 'no' and besides, I thought it might just be one of those things I had to do. She went over to the ill-looking woman behind her curtains and spoke to her and then came back to me and took me over. At this point I was really regreting agreeing - I didn't want to see this woman: I had heard her misery and pain and was scared to see her too closely. But she showed me her port and told me that it was a really good thing, she liked it. It didn't look bad, just a slightly shiny, white scar and not much else. I went back to my bed and tried to sleep.

Part of me thought: I could just walk out of here, walk out of this room, out of this hospital, out into the world and just keep going for evermore. I went and stood at the doorway of the room and took a step into the hall but I didn't leave, I went back to bed.

Meanwhile: noone had told me anything much, I didn't know exactly what time my surgery would be although I think I was early-ish on the list. I hadn't been told to not eat ot drink anything or at what point I should stop eating or drinking. Since I didn't know I didn't have anything, even water, after midnight. I don't know why I didn't ask. Well, I do. Probably because I hardly saw any nursing or medical staff and because I felt totally cowed by them. They were frightening people and I didn't dare to ask questions because I couldn't cope with what I might hear.

In the morning I turned down breakfast and the woman bringing round the breakfast trolley seemed to think this was strange, I sat there unable to concentrate on my book getting more and more anxious. I had nothing to do but sit there and wait - nothing could occupy me enough and I didn't have the concentration to let anything occupy me. I just sat there and tried to breathe. The anaesthetist came round to ask questions - she was kind and agreed that I could have a small cup of water since I hadn't had anything since the previous night. This was great since my head was still bad and I suspect it was due to dehydration. Eventually the oncologist and her team came into my room on their rounds - she saw me there and stopped to speak to me: I have no idea what I said but I was so high on anxiety by then that I probably said 'don't ask' or something sarcastic but whatever I said was enough to indicate that I was in a terrible state: she ordered the nurse to give me some Lorazepam. Trish, my breastcare nurse, asked if I wanted the man who did massage to stop by and I agreed although I hadn't met him and I wasn't sure I wanted to have to meet someone new right this moment but thankfully, I did agree. I changed into that special gown - I had to ask the nurse which way round it went: she acted like I was obviously mentally deficient if I had to ask that question and then Keith turned up. Bless him: I have never met anyone more able to make you feel safe and comfortable and at ease. He was the total antithesis of everyone else in that place at that time - I actually felt that he cared about me and that he recognised how terrified I was and that he realised that it was important to try and help me. That it wasn't just something that happened and was transitory and therefore didn't mean anything. I felt that everyone else just thought that it was normal to feel frightened and that it should just be ignored. Keith saw that I was so frightened it was deconstructing me: I couldn't speak in sentences, I was on the verge of hysterical tears; I was in total 'fight or flight' mode and since I couldn't do either of those things I was actually falling apart, deconstructing, losing myself. I was in some primitive place where feelings ruled and logic didn't exist. I couldn't reassure myself because I had no ability to see that this would end, would pass. I was swallowed by it. And somehow, somewhere, Keith recognised this and acted. He massaged my feet and legs which was lovely and chatted to me and distracted me and reassured me. He probably doesn't even remember this day but it is etched on my memory because it was such an act of personal kindness from someone I had never met before.

Then the porter arrived to take me down to the theatre. A rather different theatre to the one I was used to performing in! One of the nurses came down with me and my chart. We went down in an elevator and emerged on the theatre level: it was really cold down there and it looked a bit like a warehouse with corridors: lots of trolleys of things and stuff piled up. And I was wheeled into a little room with a couple of theatre nurses in. They started to get me ready and I asked one of them what was going to happen, she seemed surprised at my question. Why should this be surprising?? Why wouldn't I want to know what the proceedure was going to be?? It seemed like every time I asked a question it was met with the attitude that I must be mentally slow if I had to ask this - like I was supposed to know how everything worked, the procedures, the culture already. But I didn't - how was I supposed to know this?? And why I should I be made to feel that I am stupid because I don't know?
The anaesthetist turned up and she put a cannula in my wrist and injected something into it and then,

.....nothing.....

I started to be aware of noise and people talking around me. I was sort of half lying, half sitting - propped up in a way. I felt floppy, weak and sick. Someone noticed I was coming round and she asked me how I was and I told her I felt sick, she injected something into the IV line, my shoulder area was hurting and she brought me some soluble paracetamol and a straw and I gradually managed to drink it. It's funny really - because I have quite clear aural memories of the recovery room; of hearing people talking around me but hardly any visual memories. I'm not really sure what the room looked like or what the nurse looked like; although I know her name: Cherry. I asked her who she was - I hate not knowing who people are or what's going on.

Once I was feeling a bit better and was more alert I was taken back to the ward and left to sleep off the rest of the anaesthetic which I did for a while until the woman with the obnoxious family had about 6 friends from her school-days turn up to visit her - and they started shrieking and 'oohing' and rattling on at a mile a minute. Now my head felt as if the world was cotton-wool around me, things were hazy and tender and all this noise was terrible. Some of the other people in the room were very kind and asked the group to quieten down - pointing out that I'd just returned from surgery but it didn't really make a lot of difference. Nurses came and asked them to be a little quieter and finally the ward manager came and told them that they had to leave; that it wasn't fair to other patients and he offered them another room to go to. Now, since I'd come back from the recovery room the curtains around my bed and been partially closed - so I could see out a little but was mostly enclosed. As these women started to leave 2 of them came into my little area and started asking me if I minded them being there, if they were making too much noise. I was so *British* - I should have said 'you are totally inconsiderate people, I would like you to leave, I am not feeling well and you are disturbing me' but of course, I just mumbled and said something noncommital. Even now, I cannot help but seethe when I think about these two women: I feel like they not only were inconsiderate but they invaded my personal space at a time when I was unable to adequately respond or stick up for myself. Thankfully the ward manager did send them away - I don't know his name but I am so grateful to him for that.

During this time that I was recovering the nurses told me that my parents had rung to ask about me and that they'd told them not to come until later when I was more awake: I was so mad about that and again, I did not say anything, but I wanted my parents there *then* - I wanted to know that even though I wasn't very alert that they were there and then they would have looked out for me and they would have told those horrid people to be quiet. And they would have come and sat with me if I'd been able to tell them I wanted them; if they hadn't been told by that nurse not to come. I wanted my parents. Eventually, they turned up and the doctors came by and asked if I wanted to go home to which I responded in double-quick time 'yes!' I couldn't stand even thinking about another night in there so they started to arrange my discharge.

When my parents arrived the nurses disconnected me from the drip I'd been on and my mum helped me up so I could use the toilet. I'd wanted to go for hours but I'd been so cowed by all those people and I'd felt so lost and alone that I hadn't dared to ask anyone to help me get up. I could hardly move myself from a lying to a sitting position because my shoulder was so stiff: it was impossible to sit up without using those upper chest muscles to initiate the movement. Next, my mum helped me to get dressed and I realised at that point that I couldn't get back into the top I'd been wearing when I came in - it pulled over my head and was quite fitted so I just had to put on my fleece zipper top. Even putting my left arm into my sleeve was really hard and uncomfortable. It was a little odd at this time because the woman in the next bed had come back with one friend and they were obviously Jewish and it was Friday night: Shabbat. So her friend had brought in the special meal and they were singing quietly to themselves. A sort of peculiar juxtaposition - not an experience you expect to share in a hospital. But definitely an improvement on earlier. The exertion of getting up and dressed made me go all dizzy and I suddenly felt this wave of nausea wash over me: I had to lie back down for a few minutes. But I was determined to get home that night and nothing was going to keep me here any longer: I hated it, I was frightened, in pain, lost, overwhelmed, I'd consistently been made to feel stupid because I didn't know what to expect: because I didn't know what hospital routines were, since I didn't know what happened when I had surgery, or how to wear a gown; I wanted to go home.

I WAS GOING HOME.

The nurse came and said I could go and she brought me some painkillers: paracetamol and codeine and some anti-sickness medication: cyclizine to take home and some dressing kits and said that we should change the dressing every couple of days and that the stitches should come out in 7 to 10 days. My dad fetched a wheelchair and called a cab and we went home.

The cab home was agonising - every time we went over a speed bump it jolted my whole shoulder and a stab of pain went through me. I felt so fragile and broken. When we reached home it was dark, my parents helped me up the steps to my flat. One of my neighbours: Kissime, came out to see what was happening - I think she must have been totally alarmed because I was as white as a sheet, shuffling along the walkway, with obvious stitches at my neck. I hadn't told her what was happening and I didn't then either. I couldn't bear to have my neighbours being nice and offering to help and things like that. Too proud for my own good.

So I got home: my mum lent me her pyjamas because I didn't have any that buttoned down the front and I couldn't get into anything that pulled over my head. They were too short in the legs and the arms for me. I got into bed, I was propped up on a pile of pillows so that I didn't have so far to sit up if I wanted to get up. I was so relieved to be at home, in my own bed - I slept.

Long time passing

Ok - I am still here - still kicking, still ornerary and contrary as all get out and it would appear cancer-free and one breast lighter.

I survived surgery - mentally as well as physically, I survived hospital food (by having my folks bring real food from home) and I have virtually all the movement in my arm back - although that took a hell of a lot of work and lots of chivy-ing from Karen the physio (bless her - she never gave up on me although some days I thought I would never do it).

I can not begin to say how well I have been looked after by all the folks at the Royal Free Hospital in London - they have (virtually) been so lovely to me and put up with me as I shouted, screamed, whined, whinged, cried, mourned, swore and generally thought more about myself than anyone else. Which some might say was a change since I am always mothering other people. It's been a real blessing to be cared for rather than doing the caring.

It took me a long time to absorb that the cancer was gone - having been scared to death by one of the surgical team when I went for the histology report post-surgery. The first thing he said said was 'we want to repeat the bone scan'.

Cue panic and hysterics from me.

Having seen he'd obviously ballsed up he went and fetched Tina - one of the breast-care nurses who came and basically took over. First thing she said was 'The cancer is gone' - thank you - nice to know my breast wasn't removed in vain. It's amazing how some people can be totally dense and others can be totally in tune. Although you wouldn't think it would require a genius to guess that saying to someone who has (had) cancer that you need to repeat tests wouldn't strike the fear of god into them.....

I have had cancer - I still have to keep saying that to myself - past tense - it's gone - although I daren't say that any louder.

I did it - I did it all. I did six months worth of chemotherapy -

• I threw up no matter how much/many anti-sickness drugs they gave me
• I had hideous heartburn and indigestion
• my white blood cell count fell so low (0.09 I think) that I got an infection and fever and had to spend 5 days in isolation in the hospital with IV antibiotics and consequently had to have GCSF injections for a week after every chemo treatment
• every damn medication they gave me had constipation listed as a side effect - and I got every damn side effect from every damn treatment so was permanently constipated for six months
• my hair fell out - I had it virtually shaved off
• my body ached so bad I felt like I'd been beaten black and blue with a baseball bat
• all the skin on my hands peeled off
• my nails went vile and disgusting and got a fungal infection
• my fingers and toes (well, whole feet) tingled and felt fuzzy - and they still do
• my eyelashes and eyebrows came out
• my mouth tasted disgusting for the entire six months
• my periods vanished and I had eight hideous months of hot sweats - right through the June/July heatwave in London.

Then, when we finished that I had a mastectomy - a polite way of saying that my right breast and a bunch of lymph nodes were removed and dissected to inspect the tumour. My arm seized up after the surgery and I had to work bloody hard doing exercises every waking hour to get it moving again. Having the stitches removed was hideous - let's never speak of it. Looking at the scar for the first time when they removed the dressing was scary but in the end it didn't look as bad as I was expecting.

But then, I was expecting my world to crashing to an end so possibly this is not surprising.....Having the drains removed was hideous but slightly quicker than having the stitches removed - but let's not speak of that either.....

So, then (no, not finished yet dear readers - this story goes on and on), then, radiotherapy. To be fair - a lot fewer side effects than with chemo and a darn sight less invasive than surgery. I went exceedingly pink and the skin in the crease under my arm went all peely and raw in the last week but it healed up again in a couple of weeks so that wasn't so bad.

And that's it - aside from five years of Tamoxifen and a year and a half of Zoladex.

What a to-do since I last posted....
I have since then:
- had an MRI
- been to Leeds and back

On Tuesday the appointment letter for the MRI arrived and they'd neatly ignored my request for the 7th or 8th of September and made it for August when I'm away. So I telephoned to say 'no can do' and the eventual upshot was having to rush in to have it done on Tuesday afternoon. David literally had time to drive down from Northampton to go with me (thankfully). I mean, I could have managed on my own, but I'd really rather not.
So we went and had it done - uneventful except for rather profuse bleeding after the nurse removed the cannula. I think I've probably got slightly low platelet count at the moment so it took a little longer then normal to clot. So I looked quite gory for a few minutes!! ::hee hee::
At least it's done and dusted and I don't have to think about it while I'm away. When I get back I'll just have to have the portocath flushed and then the silly pre-admission thang just before surgery.
So, Thursday we set out for Leeds from Northampton. On time. Unfortunately once we'd stopped at David's parents and at Sainsburys we were no longer on time and I had to call Vis and say not to wait for us for lunch. We got there at 2.30ish (I think). It's a nice house they have and you can see the airport from their front windows but fortunately they're not under the flight path so it's not too noisy.
Lovely meal in Horsforth at the Town Street Tavern - I had some delish duck, Greek salad and creme brulee (how the *%^& do you spell that?)
Picnic in Golden Acre the next day and I finally met Zoe - she's nearly a year old and has a lot more hair than me!!! :) But she's such a smiley, good natured sweetheart - I can see why her mama loves her to bits. Anyway, we had one incident of vomiting but that was it.... (that was her vomiting, not me - for a change!)
After the park we did a quick jaunt up to Otley Chevin - lovely, green and cool. I picked a sprig of heather to take home with me (for luck, or something).
Quiet night in, watched 'Hero' - I enjoyed it, David thought it was slow.
Last day in Leeds: took Vis for lunch and then stopped at m'dad's - grabbed some stuff to take home: mostly books (of course!) then drove back to Nptn.
Nice weekend - nice to see everyone. Cat, of course, showed me her scar- I hope mine heals as well. I don't usually scar badly so I hope it won't be too obvious (except in the really obvious, only one breast sort of way). Aber and other bits of Wales next: can't wait. Have to try and find a B&B in Aber first though: the folk we were going to stay with can't put us up after all.

Counting the days

Well, here I venture tentatively into the world of blogs.
My friends in Chicago have started one to countdown the birth of their first baby; so shall I count down to the removal of my right breast? (26 days - wish I hadn't just counted to find out!)


I've been waiting for this for six months - that's what I call cruelty. Tell a girl she has cancer and has to have a breast removed and then make her wait six months while she gets pumped full of poison every three weeks. Well, she is me and that's exactly what I've been doing since February 23rd.

So, 26 days left to wear low cut tops and underwired bras - then, 'hello prosthesis' (well, eventually - have to wait for incisions to heal and radiotherapy to finish before that.) They have offered reconstruction - but since that seems to involve hacking bits of the muscle from my shoulder and then tunneling it under my arm to create the new breast; I'm not too keen. I think I'd prefer to keep the unscarred, intact parts of my body as they are, thanks.

I think I'd prefer to be in Chicago having a baby. This was not what I planned to do in my 28th year. (or is it my 29th year if I am already 28?)

Thank heaven that the hideous hot weather is holding off - I never thought I'd say that but the evil hot flushes (I hate chemotherapy!) do not mix well with temps above about 73 deg F. I am continuously taking off and putting on layers of clothing and at night I lie in bed waiting for the next whisp of breeze to come through the window. That and throwing the covers on and off every 10 minutes - I think my boyfriend is probably reeling with sleep deprivation by now.....
I have to say that the laptop on my lap ain't such a brilliant idea either (shouldn't have gone for the Inspiron) - but if I don't have it on my lap then I can't have my legs up on the desk and I'm a lazy so-and-so who likes to have her feet up (Hey, I can do what I like - I have cancer - are you going to tell me what to do?! ;O) There have to be some perks, right?)

So - what am I doing for my remaining 26 two-breast days?
Trips to Leeds, Aberystwyth and Shropshire to visit friends - hooray! Well, if you'd spent the last six months sitting around in London and Northampton under instructions to avoids crowds and ill people you'd think visiting those places was pretty exciting! No, to be fair, I am genuinely excited - the weirdness of Leeds - Leeds is weird because it's where I grew up and has completely changed in the intervening years and I can't wait to see some real hills and the sea!

Anyway, enough for now - time for another thrilling trip to Somerfield and, ooh! maybe the library.....
The fun never ends (except in 26 days)