Oh Woe is Me...

This week I'm having a bit of a moan.

Thought it would be kinder to warn you before you started reading (you'll never get the next five minutes back!)

In the last two weeks I've been:

Rushed in to hospital (Ealing hospital at that!) in the middle of the night - with a temperature. And not allowed to leave for FOUR DAYS. Until my temperature was back down to 'normal' for 24hrs:

Stuffed up to the eyeballs with every kind of 'anti' you can think of - antibiotics, antivirals, anti fungals, antisocials (not really the last one but that's a bit how I now feel):

Poked with so many needles I've lost count (they couldn't use my portacath at Ealing (see previous blog for description and purpose of this apparently useless new addition to my poor old bod)):

And hot flushing like a super heated lavatory.

And I am now TOTALLY FED UP and quite literally SICK & TIRED of the whole bloody thing!

I went in to see Dr Lowdell, my delightful and charming oncologist today to sign the consent forms for the next stage of this awful, arduous journey. Radiotherapy.

I was hoping they'd let me volunteer for the trial they're running at Charing Cross at the moment - three weeks at a high dose instead of five at a slightly lower... And it turns out not only am I not allowed to do that but I've got to have SIX weeks. Five weeks on my breast and neck (due to the lumpy lymph nodes) and a further week on just my boob. Five days a week for six weeks. Starting in early to mid-January. Humph.

So I (or to be precise, my treatment) will be ruining yet another holiday for my poor, beautiful boys and my long suffering husband (we were supposed to be going away in the spring half term but I'll still be having treatment then so...)

BOLLOX.

But this week (so far) I'm feeling almost normal. I managed to go back in to work today at the BOA. I had a rehearsal after work, for my five minute standup debut with Sophie (gorgeous friend and comedy guru). And barring major incident and accident I will be performing that five minute routine on Wednesday evening, sometime between 7 and 10:30 at the Cavendish Arms in Stockwell. It may or may not make other people laugh. But writing and rehearsing it has made me laugh and helped me see the (sometimes extremely) funny side of this stupid, senseless situation in which I currently exist.

So I don't really mind if nobody else laughs - that's up to them I guess.

Is cancer funny? Probably not. But laughing at it and the treatment to get rid of it really helps to render the whole thing powerless. Powerless to make me a victim. Too weak to rule my world. Not 'the big C' but the annoying, insidious 'little c' - a disease with the ability to kill but not the strength to conquer. Not this woman, not my spirit and certainly not my sense of humour!

Tedious Neediness.

I spent most of last week in hospital.

In the early hours of last Tuesday morning, I woke up feeling rubbish. I took my temperature as I was feeling decidedly 'eye-ey' (an expression of my Mum's which she used when we were growing up, for that 'hot behind the eyeballs', glazed thing which goes on when you have a fever) and it was 38.5C (101F in old money) half a degree over the "call the emergency number immediately" temperature.

So I called the Emergency number.

This wasn't the first time I had called the out of hours Charing Cross Chemo number. On the first round at about day 9 I'd been feeling weird (hardly surprising!) but a kind of total, all over, inside and out weariness just took me over. So I took my temperature.

I was advised, before the chemotherapy began to get myself an accurate, digital thermometer. This is because a high or very low temperature is an indication of neutropenic sepsis - a condition of the blood where the white blood cells (specifically the infection fighting, neutrophils which make up about 70% of the white blood cells) drop to a dangerously low level. This leaves the body with a much lower defence against any disease. And a much higher risk of death from a simple infection.

In chemotherapy patients the decrease is caused by the chemo drug stopping the bone marrow from producing enough new fighting cells to go around.

When I phoned the first time it was because my temperature was low (below 36C) at 34.8, the sleepy sounding Doctor on the line suggested I retake it an hour later and see if it had recovered at all. I never did because I fell asleep and in the morning it was back up to the 36 mark.

The second time I called was when the poor old veins in my right arm decided to pack up. That time (it was about four in the morning) the sleepy advice was to go to A&E in the morning. So I was able to go to Charing Cross Hospital A&E.

Last week I'd started to feel rubbish on the Sunday (Remembrance Sunday) but recovered slightly on Monday afternoon, so went to get my flu jab (which is safe for chemo patients as it's a 'dead' vaccine. When abouts I had it in the cycle was relevant but I don't remember anyone telling me that! Chemo brain?). I had tried, half heartedly and on several occasions to get through to both the out of hours number on Sunday and office hours number on Monday but with no specific symptoms and my temperature only a little bit on the warmish side, I gave up.

When I was told, at 2am on Tues morning to go to A&E immediately, I went into a bit of an internal strop. I wanted to go to Charing Cross A&E as that's where I'm being cared for (in every sense of the word - they really are brilliant) but there was no way of getting there easily at that time in the morning. But I live only five minutes walk (on a healthy day) from Ealing Hospital.

I don't like Ealing Hospital.

I have my reasons (most of them are rational and based on a number of previous, distressing encounters and experiences I've had at the place). But, after I'd woken Mike (husband) and we'd tried a couple of neighbours to no avail (we couldn't leave our two sons alone at night for what would've been over an hour, if Mike had driven me to Hammersmith). I resigned myself to my fate and agreed to go to Ealing.

They were (almost without exception) brilliant.

The building is still horrible and not perhaps quite as clean as it could be. But the staff were great. Eventually I was moved up to the 8th floor (where the views are fantastic!) and because my immunity whilst luckily not neutropenic, was at a low ebb, I was given my own room. I can't say it was pleasant - it took until Wednesday evening to get my temperature down to 'normal' and I was hooked up to a drip (on my poor old right arm again because Ealing don't normally use portacaths (of this more another day).

To say I was at a low point, both physically and emotionally is a bit of an understatement. I felt needy and hopeless and SO fed up with the enforced inertia. I became inert. I stopped writing this blog after a couple of paragraphs. I dozed off at all hours of the day. I had to wait for people to bring me my meals (which were surprisingly good for hospital food - the macaroni cheese was a particular success as was the cauliflower & broccoli cheese (cheesy sauces are obviously a speciality of the chef!)). I couldn't leave the ward. But wandered round as much as possible after I started to feel better, just to get out of bed.

I'm not good at being looked after. Looking after others, I can do that but letting people look after me is really hard. And I don't like lying around all day, it seems like such a waste of life. Last week I had to. I got a bit needy on social media too (which is where I came up with the title of this blog - it'll be going into a poem at some point!) but my friends on Facebook (both local and further afield) were amazing (and though much fewer in number, no less so on Twitter too). With kind words, messages of love and support, chatty PM/DMs, funny photos and jokes, (and a couple of very welcome visits in person with delicious things) they all rallied round and helped to lift me out of the pit I was sinking into. Facebook and it's ilk may be the scourge of modern life in some people's view, but I know I wouldn't be in such a healthy mental state without it. Weird huh?!

Leaving you with the poem I wrote on Friday night when I couldn't sleep (despite finally coming home at seven that evening and lying in my own bed, I was on so much anti-this & anti-that I was totally wired!)

My Walk

The straining of a spring in a watch wound too tight

The wild wind in the tall trees nagging me at night

The World weary tallship heaving t'ward harbour home

The bird with broken white wing, dying all alone.

A Watch

A Tree

A Ship

A Bird

I am all of these in part

But these aren't all that I am

I am me - I am a human with a beating heart

So I will carefully consult the chart

And place my feet upon the ground

I will walk to my rhythm and I will revel in the sound

(News of stand-up gig next time...)

Bored of the taste.

When we were growing up, my sister, brother and I had a phrase we used when we didn't want to eat any more of whatever it was we were eating (for some reason macaroni cheese comes to mind although I could now eat that until it came out of my ears!). It was usually the main course and it was code for "I really don't want any more of this as I'd like to leave some space for..." (Usually pudding or cake!).

Well I'm using that phrase again now. Only this time it's the chemo 'taste' (and it does come with a rather unpleasant taste and adverse effect on the whole oral experience as it happens...) which I'm 'bored' of. Very, very bored. Fed up. Sick and tired... Hahaha - that's an apt expression if ever there was one. I am thoroughly sick and totally tired.

But I knew this would happen.

Chemotherapy is not renowned for it's uplifting, invigorating and health enhancing qualities (despite the overall aim of the treatment). Ironically, in order to rid the body of cancer it attacks the very body it's aiming to heal. The ultimate, "If it stings, it's doing you good" experience.

I know all this. But I don't want to be ill anymore. I want to be well. NOW. Please...? I want to leave space for... (The rest of my (hopefully) long life)

So, today I've had chemo number four. The first round of the T initial (Taxotere) of the FEC-T treatment. But before that I had to have my mid point Oncology review. And a portacath inserted (yuck!)

During the last chemotherapy session, the veins in my right arm finally got so painful I decided the only way I could bear the next session was via a portacath. This was something I was hoping to avoid (mainly because the thought of it makes me feel decidedly queasy)

Until the weekend before last I still wasn't 100% convinced that I needed it.

Then in the early hours of that Saturday morning I woke up with horrible pains in my right arm (my chemo arm). My ring finger was swollen and a bruise had mysteriously appeared. The back of my hand was also puffy. It being the middle of the night, the fears which would normally be held in check by rational thought, were exaggerated by the dreamworld I'd just been dragged from and I almost immediately decided that I had developed a DVT... In my finger! (DVT stands for deep vein thrombosis (clot) and the fact that there are no deep veins in fingers completely escaped me at 4 o'clock in the morning!).

I phoned the emergency number provided in my little, red, chemo book.

A very sleepy sounding voice went through all the symptoms with me and decided that whilst it wasn't an immediate emergency I should go to A&E in the morning (proper morning not 'middle of the night' morning).

I got to Charing Cross A&E (I decided to go there rather than Ealing (which is a five minute walk) for all sorts of reasons but the main one was the easier access to all my cancer treatment notes) by mid-morning. I realised I'd be in for a wait but was hoping they'd just check me over, tell me there was nothing to worry about and send me home as we were supposed to be going away for half term that afternoon...

Rather alarmingly, I was triaged straight away. And sent to sit in a drafty corridor at the back of A&E. Where I looked after a strapping young man who was about to faint. Having done more than my fair share of fainting back in the day, I recognised the signs and went to fetch help before he keeled over! After he'd gone, I waited & waited (which I took for a good sign). Then they called me in and took a blood sample. From my foot - none of the veins in my arm were giving any blood at all - bad sign. Then they sent me for a lunch break! That has never happened to me in any previous A&E (and I've been to a few in my time!) - I took it for another good sign that they didn't think anything much was wrong...

After a hearty cooked breakfast in the cafe next door to the hospital, I returned for another wait.

Eventually the lovely young doctor came back with my blood results. Not good news. There were signs of thrombosis (clotting) and I would have to have a blood thinning injection, return the following day for another one (more bloody needles!) and a scan of the veins in my arm on Monday.

The cancer and it's consequences were conspiring to ruin yet another holiday... Bloody Cancer.

Another couple of hours on Sunday, spent waiting in Charing Cross, this time in the Clinical Decisions Unit. Not wasted however, as there were two other women waiting and we all got chatting and swapping stories (medical and otherwise).

The following day I turned up early at the ultrasound department and was seen really quickly by a bubbly Australian sonographer. She thoroughly searched the veins in my arm and found that all the superficial ones were buggered. There was very little flow through any of them and clots in two. But the deep veins, the ones that are dangerous when clotting (thrombosis) occurs, were all clear.

I had been frightened to sleep the previous two nights because if a clot in a deep vein moves it can cause heart failure or stroke. If I was awake and aware I would be able to warn Mike (my husband) to call an ambulance. If I was asleep I wouldn't be able to and that may well have been that. Scary.

But after a chat with the Doctor on the CDU he was happy that the veins would heal themselves without any further intervention. HOORAY! No more medicine or injections. And we were allowed to go to Swansea for our half term holiday. HIP HIP HOORAY!

After a lovely week away, I had the portacath insertion to look forward to. On Monday morning, after a consultation with the Oncology Registrar (where he told me I had 30% chance of the cancer returning - for future reference I'm going to suggest he tells patients that there's a 70% chance of it NOT returning as somehow that feels a lot more positive!), I eventually (via various circuitous pre-assessments and after getting lost... Twice!!) made my way to the Vascular Radiology department. And eventually had my portacath inserted. Yuck.

A portacath is a small metal disc with a silicone surface which sits under the surface of the skin, usually on the chest. It is attached by a narrow tube to a major vein (in my case the jugular) and can be accessed easily by means of a special needle, to administer chemo and take blood samples.

I'm not going to go into the details of the operation (which is done here at Charing Cross under local anaesthetic). Suffice to say, it was distressing.

So, now I've had chemo number four. I'm two thirds of the way through the course and at the metaphorical 'breakfast stop' (to use a Long Distance Walkers' analogy - the breakfast stop on the annual 100mile challenge is always at about 60+ miles). It's the point on the walk at which you know (barring accident and/or major incident) that you will complete the challenge. You have a lot less to go through than you've already endured. That's where I am now. With the chemo. BRILLIANT!

And, on a really exciting (but slightly scary) note, I've just had my very first standup comedy booking confirmed for 26th November at The Cavendish Arms, Comedy Virgins night. All welcome but NOT please if you're easily offended! It's going to be dark and a little bit twisted (how could it be anything else?!). More details to follow in subsequent blogs. Scary, but nowhere near as frightening as this whole Cancer malarkey!

An experiment.

To write, edit & publish the blog while under the toxic effects of the chemo...

I'm on day five today of the third round of chemotherapy. This appears to be the day when the toxic effects are at their worst in relation to my mind and how well (or not) my brain is functioning. So I thought I'd have a go at writing whilst 'under the influence'.

Possibly an interesting exercise but also a way of avoiding looking too far outside myself - this week's been a tough one for for that. Too real and raw. Today is Shiley Carpenter's funeral. She was the new(ish) Headteacher at my sons' primary school. She died of cancer. Lynda Bellingham, who had decided to give up her chemotherapy and let nature take it's course, didn't even make it to the last session, let alone her last family Christmas as she'd hoped. And two very different but equally affecting pieces of writing, which I'm by no means equal to (and have tried to add as links to this blog), have all added to an introspective mood. So here it is.

Suffice to say I'm utterly sick & tired (though luckily not actually physically vomiting or even particularly nauseous today) of having to be trapped in this cage of chemicals. I've never been very good in situations where I feel trapped, too much wild in me I think. I don't like feeling out of control. Not even the feelings or lose of control imposed by drugs (legal, medicinal or otherwise). A mild fuzzy feeling's ok as long as I'm still aware enough to maintain self control. The internal fight with the overwhelming sensations of general anaesthetics and opium based painkillers can be wholly dumped in with one (or three, by the time it's reached my system) too many vodka & sodas... I no longer have control of my own existence.

It's just an illusion though, isn't it? Having control over your own body, your own life?

One of the reasons I made the decision to shave when my hair started falling out in clumps, was down to control. There was of course also a very practical side to it - the mess would've been horrendous and I'd have had a hard job keeping the dinner free of hair! But the thought of walking round (albeit with my head covered) with an ever wispier, sparser barnet was not an option.

Sometimes you just have to take control of the things you can.

So I woke up today with a mouth like a badger's bottom which had been crawled all over by large, sticky, slimy slugs. My throat was sore (a bit like when you've been snoring but I'm reliably informed that for once I actually wasn't). My eyes were gummy and blurred. My skin has become oversensitive and delicate. I'm starting to get tiny little ulcers all over my mouth again (this too has happened at each round, starting on about the same day and finishing by about day nine.

I'm still getting the intermittent, fizzy, toxic, chemical sensations, crawling under and over my skin and, in exactly the same way, through my thoughts. I've mentioned this phenomenon before but it's so difficult to explain and so bizarre I'm going to have another go while it's actually occurring. Interestingly, no one else I've spoken to who's going through chemo seems to understand what the hell I'm talking about... Maybe it's just me?

So it starts like a tightness in the skin and then crawls into a combination of burning without heat (sometimes even freezing) and a fizzing, prickling sensation. It affects scar tissue first starting with the most recent (left breast & underarm) and turning up in places where I'd forgotten I had scars. Then sometimes moves out over all my body. And my mind. The thing is it affects and disturbs my thoughts in exactly the same way. A physical sensation transfigured into a contorted thought. I'll be thinking absolutely straight (well, as straight as I ever do...) one minute then the chemo chemical starts crawling into the edge and under the ordinary thought. It turns into an indistinct, unintelligible picture or string of foreign words. I think new born babies' thoughts and dreams must be something like this. Maybe.

It has made tangible and physical the until now only intellectually understood reality that my body and mind are not in anyway separate but rather part of the whole. Annabel. Me. This sack of skin with stuff inside. Amazing, unbelievably complicated, miraculous, magical stuff.

I wish I didn't now know this. Sometimes. Because I'd rather not have had breast cancer. But now I've had it and am having to be treated for it, I may as well make the best of it. It never does to feel sorry for yourself. I'll take the positives I can find (and there do seem to be a surprisingly large number considering) and make them work for me and all the people I love and care about that I can (which is pretty much most people I meet to a greater or lesser degree) as it would be such a waste not to.

There. I wonder what that'll read like to you (and me (after the toxic effects wear off))?!

Ooh, and here's the 'poem' I wrote on day five of round two...

Chemo Chemical

Fizzy, fuzzy, dizzy

Popping, paining, aching.

Dragging

Lagging

Fretting

Sweating

Heavy heat.

Ice cold comfort.

Brain & body both.

Limbs think/mind feels

All one. All one.

All one.

http://www.breastcancercare.org.uk/news/blog/clearing-myths-misunderstandings-about-secondary-breast-cancer?utm_source=facebook_mainbcc&utm_medium=bccsocialmedia&utm_campaign=ownfacebook_post

http://www.telegraph.co.uk/women/womens-health/11161077/Breast-cancer-as-a-young-woman-what-its-really-like.html

There is also a great last interview with Lynda Bellingham - I couldn't get it to link but if you google Lynda Bellingham Telegraph it comes up.

Keeping Abreast of it

Introducing Droopy & Pert... (An intimate but honest look at the aftermath of breast surgery)

As I finished writing this I was on the journey home from Charing Cross. I must be looking ok because (despite just having had chemo dose number three) I had to stand all the way on the tube and wait for three buses to go while other people pushed in and squeezed on to the already packed vehicles. I'm not feeling particularly ok but I've definitely felt worse. And yesterday the very beautiful (in soul as well as looks) young woman I sat next to on the tube, asked me if I was a practising Buddhist!

With any luck (and a following wind) I'm now half way through the whole chemo course and totally finished with the FEC cocktail (NB if you see this cocktail on any bar or nightclub price list avoid it at all costs. It doesn't come with any little bits of fruit or veg, there's not a paper umbrella in sight and it burns worse than the roughest whiskey - my vein's still sore from the first lot six weeks ago!). There's the small matter of a check-up with Dr Lowdell (charming but self effacing Oncology Consultant) to get through first though...

But way back in the beautiful, balmy days of July, (ah, that long, hot summer... Remember?!) after the registrar had broken the news regarding my lymph nodes and the need to remove them all in a second operation, Vanessa (brilliant breast care nurse) removed my dressings.

What can I say?

I had thought that my bosoms were pretty good for my age. Considering I'd breast fed two babies. I mean, they were hardly knee shooters (or whatever the current term for saggy boobs is?). But as Vanessa carefully removed the surgical dressings, (which were more than a little bit ripe for removal after the week and a half since the op) it became clear that I'd been wrong. About my boobs not being saggy. Because one of them still was. The other one, the one which had harboured the Lump and now looked (with the eight macabre whiskers of the stitches still protruding at evenly spaced intervals around the circumference of my areole) like something from the as yet unmade horror film "Mother of Frankenstein". But it was also decidedly more "perky" than the right one. In fact where the right one looked a little bit like it was having a really good sulk, the left one was somehow looking rather pleased with itself... And the areole (I've never had to write this word before but I'm quite enjoying it!) was enormous! In fact it's still so ridiculously large (it must've stretched when they sewed it back together) that a bit of dark pink appears over the top of even my most modest bra.

One of the young (male) registrars tried to tell me that over time they would even up. They won't. There is still a 2cm difference in the height of my nipples and they now point in widely different directions. It was my oldest son, Henry who observed, when I was wandering around the flat one morning in my PJs (and perhaps a little bit on the chilly side - if you know what I mean?) that my boobs now looked "boss eyed"...

Mr Hadjiminas (worldly wise consultant breast surgeon) has offered to even them up if they're still wonky after a year (he conceded that they probably would be). But I'm not at all sure about going under the knife just for the sake of equal knockers... Besides which I feel quite sorry for the right one and more than a little bit nostalgic for the pair of imperfect but perfectly serviceable thrupenny bits I had before the aliens landed (please see blog instalment number 10 for an explanation of this seemingly incongruous comment). Yes. I think I'd like to keep the right one in its natural state as a reminder of the good old days.

Which means I'm probably going to have a mammary mismatch for the rest my life. Oh well... At least I've got a title for the show I'm now writing...

So, without further ado (but a lot more writing to do) I'd like to announce the forthcoming (at some vague point in the not too distant future) tragicomic production:

"Droopy & Pert in a Tale of Two Titties"

There will be puppets of various sizes and shapes. There will be small featured roles for my dearly departed, brave little Lymph Nodes. And now there will definitely have to be naughty little aliens too. There will be laughter and maybe a little tiny bit of crying too.

Watch this space for news on production progress. And also the date and venue of my standup debut at an open mic night - it'll probably be in November...

And if you haven't already and would like to help me raise money for Macmillan, please visit my JustGiving page: https://www.justgiving.com/Annabel-Wood3/

100 Years of Perspective.

I wasn't sure where to begin for this blog. Anyone who knows Spinal Tap will have a ready response to the title this week but in my case the amount of perspective was just right.

It's now just over a week since the first chemotherapy round started and it hasn't been too bad so far. I've been feeling quite muddled (not much difference there then!) and I've had a couple of not so good days which culminated in a low temperature and extreme tiredness. There are the strange, fizzy, chemical burning sensations which crawl intermittently all over my skin. I've had a sore mouth on a couple of evenings which made reading Arthur's bedtime story a bit awkward and uncomfortable (and quite strange to listen to for Arthur I should think, though he didn't say anything). And my hair has started to fall out (it seems to coincide with the fizzy thing) but I've got so much hair it's going to be a while before it shows... Probably.

But the main thing this week hasn't been to do with cancer or it's treatment at all (though I believe it's going to help with the recovery)

On Wednesday I went with my Dad, Aunty Mary and Brother, Will to visit my Great Grandfather's grave in a small War cemetery just outside the tiny village of Priez. He was one of the first members of the Royal Sussex Regiment to be killed in action in the First World War on 10th September 1914. We visited the site of the battle and during a wonderful commentary given by Colonel Roderick Arnold to the 150 or so people present (members of the Royal Sussex Regimental Association and various descendants such as us Cleares), we were told the position RSM William Cleare fell to within a few metres.

Seeing the actual geographical site of his death was quite a shock but also very moving. Suddenly he was there, very real and in some undefinable way, the eighth of me that is him acknowledged that.

This may all seem irrelevant to a blog which has thus far concentrated on my current circumstances and the personal battle I'm undergoing with breast cancer. But it has added a very sudden and as it turns out much needed perspective to the whole thing.

William Cleare was the Regimental Sergeant Major when the 2nd Battalion of the Royal Sussex Regiment were deployed to France in the middle of August 1914. He was 40. Six years younger than I am now but, compared to most of the regular soldiers under his command, who were in their late teens or early 20s, he was an old man. I imagine him to bear the weight of this responsibility as a father figure, losing his life ensuring his boys were where they needed to be and all accounted for. He left a young daughter (Auntie Kitty) an even younger son (my Grandfather, also a William) and our Gran Cleare (his wife). She survived her husband by almost 70 years and her only son (who was killed in the Second World War) by 35 years. I knew her (albeit in quite infirm old age) and at the time never realised or understood quite what she had been through. I don't think many of us, lucky enough to be alive today and living in the peace and freedom we currently enjoy, can ever fully comprehend what that generation went through or the losses they endured.

My current battle is small and insignificant in comparison and I have so much to be thankful for. I feel humbled and very privileged to have been in the tiny village of Priez at the unveiling of a monument to the men of the Royal Sussex Regiment who fell on that day and throughout the rest of the Great War.

If ever I start to feel sorry for myself or like I'm not up to the fight, I will take myself back to the edge of a field, on the crest of a gentle slope in France and the place where RSM William Cleare fell. And I will remember him.

I've just tried to sort out the chronological order of the blog posts and I've made it worse! The most recent one is 11...

Lymphomaniac

or

Why I Tried to Hang on to My Lymph Nodes

I got a paper cut this week. Normally, for most people, this would be a very minor issue (if it's an issue at all!) They hurt but it's nothing serious.

Unless you've had all your lymph nodes removed from your left axilla (armpit) and the 'injury' is on your left forefinger. Like me. I had to go to to our long suffering GP with a paper cut...

I was looking at a map (I walked 50 miles with the LDWA (Long Distance Walkers Association) this weekend and was having a look at the route.) Such an easy, common occurrence... And EXACTLY why I didn't want to relinquish my lymph nodes without very good reason.

The lymph nodes (of which we all have many, at various strategic sites all over our bodies) filter the lymph, help to keep it moving and channel it away from our extremities. This support system which aids the blood with cleaning and healing wounds and infections, does not have a central pump like the heart but relies on us moving around to keep it moving around. But it needs clear channels and preferably a full set of healthy lymph nodes... Which is exactly what I DON'have for my left arm, breast and upper chest...

After any sort of injury, lymph is 'sent' by the body to the wound and if it doesn't have a way of escaping, it will pool in the area and cause swelling. Lymphoedema, a chronic and once present, incurable condition requiring specialist lymphatic massage and tight, surgical bandages, is the name given to this uncomfortable and inconvenient condition.

Being a reasonably persuasive person when I want to be (at least I get to use the acting training for something!), I managed to convince Mr Hadjiminas (the breast surgeon) , in the post scans, pre-op consultation, that it was worthwhile trying to hang on to as many of my lymph nodes as possible.

Reasons I gave for keeping my lymph nodes included: being clumsy and thus more vulnerable to injury and therefore at higher risk of Lymphoedema; being very active and thus more vulnerable etc.; I cited cooking as one of my main passions, that coupled with the 'clumsy' and cuts and burns potential was high risk; and an absolute refusal to compromise my lifestyle - the thought of wrapping myself in cotton wool for the rest of my (hopefully) long life... NO WAY!

I'd done some online research before the meeting and looked at some of the recent innovations in lymph node testing and removal. The one that caught my eye was the OSNA (one step nucleic acid test) system whereby a sample of the lymph nodes is tested during the operation (instead of being sent off to the lab and waiting a week for the results).

Unfortunately my short-term memory (never particularly reliable at the best of times) deserted me in the stress of the meeting, and I couldn't recall the name of the test. So I described it.

The consultation room was slightly overcrowded at that appointment. I was joined by my husband, Mike and accompanying Mr Hadjiminas were Dr Tasoulis (who we'd seen at the slightly pointless pre-scan meeting) and Vanessa, my breast care nurse. Mr H had been given the heads up that I wasn't going to let all my lymph nodes without a fight. There was a slightly awkward silence at the outset of the meeting before he asked me what I wanted to do. I told him. But without the benefit of the actual name of the new testing procedure, my layman's description was lost in translation and a small(ish) misunderstanding was initiated...

Mr H agreed to remove just a small sample of lymph nodes (including the one definitely positive LLN) using the sentinel lymph node test (where a coloured dye is injected into the area of the original tumour and then flows through the lymph highlighting the first (sentinel) node reached.

So. The plan was to have a lumpectomy (or wide local excision) to remove the Lump and a margin of cancer-free surrounding tissue, with a sentinel node biopsy. In order to minimise scaring and prevent a crater under the skin, in the space left by the Lump and its margins, Mr H proposed a cosmetic procedure usually undertaken to reduce and lift big, saggy boobs - not something I suffered from on either count (or so I thought!) and a small(ish) incision in my armpit to remove the LLN and its immediate neighbours. I agreed.

The operation was set for Thursday 10th July, exactly five weeks after the initial diagnosis. And only just over seven since I found the Lump.

The day before the procedure, I had to go in to the Breast Care department to have a dye injection which would show up the lymph nodes to be sampled. It was a blue colour and I was warned that I might have greenish wee for a few hours after the op...

I had to be at the hospital day ward for 7:30am the following morning and (as it would be my last chance for a while), I decided to walk the six and a half miles from Hanwell to Hammersmith. It was the perfect mode of transport for me and helped to settle my nerves and centre me (which is what walking always does for me).

After a bit of a kerfuffle over a guide wire issue. (If a tumour is deep within the breast or small and difficult to detect, the ultrasound unit insert a wire into the lump to guide the surgical team) Turned out, after waiting over an hour outside the breast ultrasound unit in a very fetching hospital gown, my Lump was so near the surface and clearly defined that a wire was unnecessary. Instead, feeling a little bit like a pirate treasure map, I returned to the ward with a great big, scruffy, black X to mark the spot.

I also signed up to take part in clinical trials for a new procedure. If successful it will help surgeons to identify all cancerous tissue during the initial operation thus preventing the need for further surgery. It involved dye. This time yellow...

Eventually after signing countless forms and having my left bosom decorated with further marks and arrows, I was called to the anteroom of the operating theatre to be put under by the rather jolly anaesthetist. After administering the anaesthetic, instead of asking me to count down from 10, he asked me to describe my perfect holiday. My reply? "Walking",

"Where?"

"Anywhe..."

Life, the Universe and Everything. (Well some of it anyway)

During the last week I have felt completely rubbish and extremely well. I'm currently getting over a common or garden cold, but there's something quite comforting about how normal that feels compared to the hideously weird sensations I've been going through with the chemo. Round 3 (and the halfway point!) is looming but I should now have a week of feeling almost totally normal.

And I'm making the most of it!

Life is too short to waste worrying about what's coming up. Or what's happened in the past. I am here now and I am one of the lucky ones. I am alive.

On Wednesday night, the wonderful Shirley Carpenter, Head-teacher of St Mark's Primary school, lost her battle with cancer. Both my sons (in their own very different ways) were deeply affected. Arthur, who is just starting his school life in year one, has been asking a lot of questions about dying, death and what comes after.

Part of our conversation the other night went something like,

"Is Ms Carpenter in Heaven now?" "Yes"

"Are you going to die soon too?"

"No. Not if I can help it! I'm intending to be a very, very old lady when I die"

"Are you going to live to 1000?"

"No. I wouldn't want to live for that long!"

"I do. I'm going to live forever"

As I remember, when you're five and three quarters, living forever seems like the only thing for it.

But none of us are going to live forever.

When Henry (now almost 12) was a tiny baby (and I'd had very little sleep for the six weeks or so of his life so far!), he was lying peacefully in his little rocking chair, gazing about the room as babies do. Looking at him, I suddenly had a very clear vision of him as an old, old man. This tiny, perfect creation who I had miraculously manufactured inside me, was on his inevitable journey through life towards death.

It's a very difficult subject to broach as, by nature and in order to survive as a species, we have a very real and sensible aversion to "shuffling off this mortal coil". And now (in our culture at least) talking about it has become almost taboo, a subject to be avoided as avidly and assiduously as the act of dying itself. Unless you happen to be a child. Our reticence to think about death, let alone talk about it, makes it hard when children ask questions. When, in their endless thirst for knowledge, they make their inescapable enquiries regarding and surrounding death and what, if anything follows.

Arthur's questions were all quite matter of fact (he's that sort of character, a scientific mind if I'm not mistaken), he was measured and calm but there was an underlying, subtle anxiety to do with how long his Mummy was going to stick around for before she died too. He knows I've had cancer. That I'm being treated with very strong medicine to make me better. And he knows Ms Carpenter had cancer and that for her, the medicine didn't work. But he also now knows that there are a lot of different types of cancer and if you catch it early enough you don't have to die from it.

I now have a visualisation for the disease (thanks in part to a wonderful workshop at The Haven on Friday) which is giving me a positive point of view of the cancer and chemotherapy treatment and (incidentally) a great explanation of the whole thing for small children... It goes like this:

What remains of the Lump, the microscopic breast cancer cells, I see as naughty little aliens who've escaped from their original landing place (the Lump in my left breast) and taken to their toes, hiding in various places around my body. They think it's a game. They're waiting. ready to build another alien camp somewhere else while I'm not looking. But I'm now very firmly telling them that the game's up, it's over and it's time for them to leave. The chemo drugs are their alien transportation system (which is why they make me feel so bad and are doing a little bit of temporary damage in my body) Strangely perhaps, I'm not angry with these rogue, alien breast cells. If I'm honest, I'm actually more than a little bit grateful to them. They've made me realise how finite and therefore valuable my life is. I'm thankful for the impetus and inspiration they've given me to start writing. And thankful and so so grateful for revealing the vast warm ocean of love and support I have from my family and friends who I hope I will never take for granted.

I am alive, I am here now and I am not going to waste another second.

... And jumped to most recent on the list. I'm not sure how this happened (although I've got my suspicions). I think the only way of getting them back in chronological order (which I'm going to have to do as it's really bugging me!) is to republish each one from 6-9.

Number 10 is on the way - watch this space...