Annabel Cleare

Keeping Abreast of it - 12. 22/10/14

23/10/2014

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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.

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Keeping Abreast of it 11 - 17/10/14

22/10/2014

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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/

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Keeping Abreast of it - 6 14/9/14

18/10/2014

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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.

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Chronology NIGHTMARE!!

17/10/2014

 

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...

Keeping Abreast of it - 7

17/10/2014

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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..."

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Keeping Abreast of it 10 - 11/10/14

11/10/2014

 

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.

NB Number 5 appears to have escaped...

11/10/2014

 

... 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...

Keeping Abreast of it - 5 7/10/14

8/10/2014

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Staging it

The first week of chemo has finally arrived. It seems to have been lurking in the background, an ever present but not quite tangible threat. Until now.

I had hoped to get this finished in the chemo suite on Thursday but ended up spending most of my time chatting to the nurses who were looking after me and my eventually very cold arm! So, since then I've put the rest of it together, bit by bit, in between feeling as if I've been reading the map in the car too long and high as a kite.

On Thursday I was finally hooked up to the machine receiving the first of six rounds of chemotherapy. If you want to imagine it, it's almost exactly the same as the ad except in my right hand and the chair was pink and the ward was bursting with other people all receiving treatment.

Back in June, the first meeting with the breast surgery team (actually just one member of the team, the handsome, softly spoken registrar, Dr Marios-Konstantinos Tasoulis) now seems a lifetime ago. I recorded it on my phone (with permission) and the woman I hear on the playback, insisting lightheartedly but with a rock solidly firm resolution, that she wasn't going to have all her lymph nodes removed, doesn't quite sound like me. I sound naive and far too sure of myself.

The reason I was only meeting one member of the team was because the results of my staging scans had not come back and nothing further could be decided until they knew if the Lump had managed to escape beyond my LLNs (Lumpy Lymph Nodes). I knew the results hadn't come back yet as I hadn't been for the scans. They were booked in for the following day. In two different hospitals.

Firstly the CT scan at Hammersmith Hospital (in East Acton) then, in the afternoon, the bone scan at Charing Cross Hospital (in Hammersmith!). Luckily there is a pretty reliable bus service from East Acton to Hammersmith as I only had a couple of hours to get from one to the other.

The CT scan was bizarre. They injected me with a substance which, within seconds sent a wave of not altogether unpleasant, tingling heat through my body. The large donut of the scanner passed over my body, where I lay, intermittently holding my breath (as I recall...). The whole thing took less than 5mins! It'd taken me longer to get changed into the hospital gown and work out which tape tied to which to prevent the entire waiting room getting a pre-lunch appetite suppressant in the form of my bare bum!

As the CT department had been running about half an hour late (one of their scanners was down and there was a jam packed waiting room, so I reckon half an hour was pretty good under the circumstances!) I now only had just over half an hour to get to Charing Cross hospital for my radioactive injection ready for the bone scan later that afternoon. The bus was great until we got on to the Shepherds Bush Road, where it ground to a halt in terrible traffic. Nothing left but to walk the mile and a half left to the hospital.

I made it with seconds to spare. I don't remember having to wait very long. They injected me with a radioactive isotope and then I had to go away for 3hrs while the radioactivity seeped into my bones... Ready Brek glow developing nicely, I decided the only thing for it was to do some retail therapy!

Back at the hospital and not too much lighter in the pocket, I was ushered into another changing room to struggle into another hospital gown. Then into a dimly lit room with a very narrow bed on tracks with a huge X-ray contraption at the foot. I lay down on the bed and was given a sling of canvas to place both arms in, which rested across my body and stopped my arms dangling down beside the bed. The radiographer asked me to keep very still and the machine was moved up to my head, lowered until my nose almost touched the screen and the scan began.

It took a lot longer than the CT scan. I had time to wonder, as the machine moved away from my head, slowly staggering and carefully scanning my skeleton, what these scans would reveal. Had the LLNs done their job and halted the progress of this insidious disease or would I find out that the Lump had escaped and colonised another area of my body with rogue breast cells...

As the scan drew to a slow halt over my feet, I asked the radiographer how long the results would take to arrive with the Breast Surgery team. "They should be with them tomorrow" was the very welcome reply. (I really don't like waiting for 'the unknown'. At all. One little bit. As a child, I always opened presents when I found them (very carefully of course, re-wrapping just as carefully to avoid detection!) And there was no way I could have gone through nine months of pregnancy without finding out both times whether the new person inside me was a boy or girl - it would've driven me to distraction!). So. This being a Tuesday and assuming I could find someone one on the Breast Surgery team willing to talk to me over the phone, I should have the results before the weekend.

Easier thought than done.

I gave them until Friday before I started phoning the hospital. I spoke to all sorts of different people who were all very pleasant and sympathetic but none of them were at liberty to give me results as they weren't medically trained. I tried getting through to the Breast Care nurses. But after I left a couple of messages, I was starting to feel like a stalker! I even called my long suffering GP and asked them to call the hospital... All to no avail. The closest I got was Mr Hadjiminas' secretary, the lovely and very patient (unlike me!) Marcia. She was going to try and get a member of the Breast Surgery team to call me on Monday.

EEK!

I was at work and beginning to slide into full 'fear of the unknown' meltdown. My imagination was going into overdrive and I was thinking the worst; hearing the pity in the voices of all the clerical staff I was bothering.

Eventually, one of the breast care nurses phoned me (unfortunately I don't remember which member of the team it was as I was a bit on the desperate side of rational by then.) She gave me the very welcome news that there were no signs of any metastasising cancerous Lumps anywhere else.

My lymph nodes had fulfilled their function and kept the Lump at bay. I thankfully only had stage one breast cancer.

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Keeping Abreast of it - 9

3/10/2014

 

Taking the Rough with the Smooth

Chemo #2 has so far been noticeably harder than #1. I can feel an uncharacteristic weakness in my limbs - not that I'm anywhere near the point if collapse - far from it. I'm still taking the stairs two at a time when there's an opportunity and am still walking whenever I can. It's just that little bit harder to coax my legs into it - to persuade my body that it will feel better for the exercise (and it really does feel better for making the effort). It's not like the tiredness I experience after a long walk - even after 100 miles. It's deeper than that. Not fatigue from the relentless one foot in front of the other, outside effort. But from within.

The other thing I've noticed is that, despite being given a stronger intravenous, pre-chemo, anti-sickness medication, the feelings of nausea are worse this time. I haven't actually been sick but then I'll do virtually anything to stop myself being sick, I hate throwing up SO much.

I was going to say that neither of these worsening symptoms has yet stopped me going to work or doing anything else I've wanted to do. But unfortunately that is not now the case. There is a limit (it turns out!) to what I can push, persuade & otherwise bully my poor old body into. (It probably hasn't helped that my period has turned up, four days late and twice as problematic as usual and that I also seem to have picked up a cold from somewhere). If there is a cumulative effect over the remaining four rounds (as I've been told there probably will be) then things are likely to get worse before they get better (although I'm pretty sure my ovaries are going to throw in the towel before then - poor old things! So I won't have that double whammy again - fingers crossed!)

But it's ok. It's ok for me to feel ill. It's ok for me to feel down. Because the drugs that are currently coursing through my system are doing their job. They are powerful, harsh chemical substances which are destroying any remaining rogue cancer cells. In the process they are causing damage (just temporarily) to the body they are healing. To the body they are cleaning. But I have faith that my system is strong and I have the advantage over most that I have taken part and successfully completed a few long distance endurance events.

There is a feeling of certainty I get before a long walk. Usually a couple of days before - sometimes (as in the most recent 50 mile walk) it only happens as I begin. It's a certainty, an absolute belief, that, barring major outside influences or accidents (and probably even including some of them!) I will finish the event. It passes over me as a calming, soothing assurance that within me I have the resources, the determination and the sheer bloody, stubborn grit, to finish successfully what I am about to or have just started. I have that now with this treatment.

The journey I am on now through chemo, is just as unknown as that first 100 mile walk was back in 2012. Oh, I can see the route, they've told me how many sessions I'm due to have and what the likely side-effects are. But I have no idea how my body will feel, how my individual, unique system (balanced or otherwise), will react at each new challenge which comes up. In the same way I just kept putting one foot in front of the other on that first 100 mile walk, secure in the knowledge that plenty of others had previously done just that and succeeded, I am taking each moment as it comes on this journey, taking heart from those who've already completed the challenge and keeping myself on the path (with a not inconsiderable amount of support from a lot of you).

(WARNING: the following three paragraphs contain details of a breast surgical nature - please don't read them if you're squeamish or found the mention of 'periods' offensive!)

It seems such a long time ago now, waiting to recover from that first operation back in July. Trying not to be impatient with my body (and mind) as I came out of the fug of the anaesthetic and endured the pain as the feeling returned to the site of the operation. Or I should say, sites - I couldn't see them yet as they were both carefully covered (mostly) with post op dressings but I had two distinct 'wounds': a slit of a few centimetres (couple of inches) under my left arm and a circular cut which ran the entire way around my left areole.

I mentioned in a previous post that what Mr Hadjiminas had proposed (and now carried out) was the equivalent of a plastic surgery procedure to reduce and lift my breast. Because the Lump had been so close to the surface and relatively close to my areole (it was never going to be very far away to be honest as my boobs aren't what anyone would describe as large!), Mr H was able to cut all the way round the areole and get to the Lump from there. He then closed the gap in the breast tissue under the skin, made by the offending article, removed a small amount of ordinary skin all the way round, then lifted and 'gathered' (actually don't think I need to use inverted commas as he must've literally done just that - for me as a sometime seamstress, it was fascinating!) the skin and stitched it, very neatly back together all the way round...

But all I could see of my left areole at this point was the tip of my nipple through the dressing. Some kind assistant in the operating theatre had very carefully cut out a 'peephole' for it - like it might need to breathe or see what was going on...

I thought I'd be going back in for the results the following week. As it turned out I had to wait 10 days. Luckily there was a lot going on outside of breast cancer and it's relentless treatment, to keep me busy and my mind off things. Henry was just about to leave St Mark's Primary School and his year six 'Leavers' Do' was fast approaching. I'd already agreed to do the cake and wanted to honour my commitment (as much as a V's up to the cancer as anything else). It became a family project with my Sister, Niece and Mum all hugely contributing to its success! And it really helped to keep my head straight and off the looming results.

So with Henry's end-of-an-era (and at one point seemingly endless) year six leavers' events all attended and Arthur now finishing his reception year, on the very last day of term, Mike and myself turned up at the Breast Services department to hear the outcome of the operation.

It was good and bad.

We sat down in the consulting room with the Registrar (a new one who I may or may not have met when under the influence of 'the poppy', 10 days before - he looked vaguely familiar...) and Vanessa (my lovely breast care nurse). The wide local excision of the original cancerous Lump had been totally successful. The margins of healthy tissue taken (hence the 'wide' part of the procedure name) were all completely clear of cancer. Phew.

All four of the lymph nodes taken in the sample were completely buggered. (Sorry, cancerous.)

The Registrar broke the news that I would need to have a total axillary clearance after all. I burst into tears like a disappointed four year old and started to protest. But common sense and the gentle persuasion of husband, nurse and doctor won me over relatively quickly in the end. By the end of the consultation I'd agreed to a second operation. And now it was 'the sooner the better' as it was going to delay the next and important stage of the treatment: chemotherapy...

Strangely although both operations now feel quite distant that consultation, where I finally, (emotionally at least) let go of my remaining, brave, little lymph nodes could have been yesterday.

Then came the wait for the date of the second (and hopefully) final operation...

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