Annabel Cleare

Keeping Abreast of it 4 - 30/08/14

30/8/2014

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Telling Times

So I now know when my chemotherapy will start, what cocktail they're going try (unfortunately not the little paper umbrella and slice of pineapple kind!) and how many rounds they're proposing to give me. The knowledge is making me feel dizzy and a bit sick and I haven't even started it yet! (I reckon it's that old psychosomatic tendency again mixed in with a good dollop of nervous tension - fear of the unknown).

I'm being a bit of a baby if I'm honest - the urge to do a walking version of the Forrest Gump run is almost too strong to resist. I just want to turn my face into the wind and keep walking forever, away from this situation I'm in. Away from the treatment. And, strangely perhaps, away from all the love and support which has been pouring towards me in many forms and from so many people. It's not that I'm ungrateful, completely the reverse - I know I wouldn't have stayed this strong and positive without such caring, loving support. It's just that, I think. I don't want to be in the position of needing the support. Hmm it's feeling a bit like a stroppy teenager, 'independence' thing... Or the coward in me... But it turns out that I am actually quite brave and strong, and I am NOT a quitter (thank gawd for the three 100 mile challenges I've completed!) so I will face the coming treatment with as much PMA (positive mental attitude) laughter and good grace as I can muster (look out for my stand-up debut some time in October!!).

But so far (even now, after two surgical procedures and the looming spectre of chemotherapy) the hardest part of this whole thing has been telling people that I have cancer. Reactions to the news have varied from gentle and loving concern to abject horror. It has been especially difficult telling the people I love and care for the most.  

I told my husband, Mike, over the phone as I left the hospital. He was shaken, I can remember hearing it in his voice, though I don't now remember the conversation or exactly what was said.

Miranda, my lovely little sister was the next person to know after Mike. They both knew I'd been in for tests but, after a discussion with my sister we'd decided not to worry Mum & Dad by telling them I'd found a Lump - after all it was probably nothing...

I told my Mum the following day, after we'd been for a pamper morning at a little place just outside Beaconsfield. It was part of her birthday celebrations and (although I knew it would probably ruin the day in retrospect) I decided to wait until we were eating lunch so she could enjoy the massage and manicure we were booked in for. Poor Mum. What a horrible thing to hear. She was very brave and hardly cried at all. Together, we phoned Dad, who was at home - which probably wasn't the best way for him to hear the news, but is there really a good way to hear that someone you love has cancer? Poor Dad.

We told our two sons just over a week after I received the diagnosis. The reason for the delay was to let Henry (our 11 year old) enjoy his year 6 adventure holiday with the school. We felt that he'd have been too worried about things to have fun and he'd been looking forward to the trip since he'd started at the school in Nursery! I knew that keeping it from them indefinitely was out of the question. Both of them are intelligent and in very different ways, sensitive children and I knew with what I was going to be facing, honesty was the the best way forward. Also, the ad was still doing the rounds (more of that another time!).

Mike and I sat them both down on the sofa and announced it as gently as that sort of information can be imparted. It went something like, "Mummy found a little Lump in her left bosom and when the hospital tested it, it turned out that it was breast cancer. I'm going to have to have an operation to remove it and then some treatment called chemotherapy..."

Henry immediately broke down into great wracking sobs. He'd had a nightmare one night, while away with the school, in which I'd died (I suspect that, despite trying very hard to hide it from them, both boys had picked up on our sky high anxiety levels) and the news that I had cancer was, in his head, that nightmare evolving into reality. "Are you going to die?" Was his first question. To which my reply was, "Yes, of course! Everybody's going to die but I have no idea when!" That might sound a bit harsh but we've always been honest about the life/death cycle (well since they started asking about death and dying, which occurred at around four years old for both of them!). I hadn't had the staging tests then, which would tell me if the cancer had escaped and spread to other parts of my body so had no idea of the prognosis and didn't want to tell them I was going to be fine if I was going to have to turn round in a couple of weeks and tell them I wasn't. It's a trust thing.

Arthur was very quiet. Despite only being 5 (and a half!), he already had a pretty firm grasp of what cancer was all about because of the Macmillan's ad. An inquisitive and thoughtful child, interested in how bodies work, he'd asked lots of questions at the time the ad came out and had particularly identified with the boy playing my son. After we told him, Arthur was very quiet for about 30 seconds. Then without saying a word or shedding a tear (though his face betrayed the struggle he was having to stop his eyes leaking), he came over to where I was sitting, wrapped his arms around me and hugged me tightly.

It hasn't got any easier telling people. Broaching it is awkward. Saying the words "I've got breast cancer", now sound like a a bit of a lie as the actual cancerous Lump has been removed along with all 11 (eventually) infected Lumpy Lymph Nodes (LLNs) and their 13 healthy fellows... I suppose I should now say something like, "I'm recovering from breast cancer and being treated just in case my LLNs didn't manage to stop all the cancer which was trying to escape" (a job which I happen to believe they attempted valiantly). One of my friends, who was diagnosed and treated for breast cancer last year, described chemotherapy as "putting bleach through the pipes" to ensure that there aren't any tiny, microscopic pockets of cancer hiding away ready to start another Lump somewhere else... Which is I think, a very clear and succinct analogy.

So round one of six chemotherapy cycles starts this Thursday, 4th September. Each cycle is 3 weeks, so with any luck and a following wind, the last cycle should be over before the New Year. I'm on the FEC-T combination (which is probably how I'll be feeling for at least some of the time during the next 16 weeks!!). On Facebook, for each of the cycles, I'm setting challenges for myself and some brave friends in the 'Chemo Countdown to Christmas'. I'm hoping it'll be a fun way to keep me focused, positive and out of too much trouble...

Right, that's quite enough for now! So, to quote a favourite playwright of mine, "Once more unto the breach dear friends, once more..."

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Keeping Abreast of it 3

21/8/2014

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21/08/2014

Catching up

After over two months of knowing that I have one of the biggest killers of women in this country, I am finally catching up. The lag I was experiencing is becoming less frequent and I now intellectually and emotionally know this is happening to me, now...

Back at the beginning of June, after he'd told me I had breast cancer, Mr Gordon (the consultant breast surgeon) had suggested that it was probably a big shock and that I'd be bound to have lots of questions. He outlined the proposed treatment - a wide local excision (lumpectomy) and total axillary clearance, followed by approximately five months of chemotherapy, up to six weeks of radiotherapy and then (as my particular type of cancer was very responsive to oestrogen) a long course of hormone therapy. What?!

Sorry.

Was he talking to me?

All I could think about was how foolish I felt, having done that advert, to now actually have cancer. I had cancer. Me? No hang on... But if I'm honest it wasn't really a surprise, the truth of the situation had been dawning on me in incremental stages since I'd discovered The Lump in the shower in Pontypool.

I told Mr Gordon & Vanessa (my breast care nurse who was also in the consultation) as much, saying that it was a shock to finally hear the words but not really a surprise. Then I mentioned how ironic it was that I played the cancer patient in the current Macmillan ad...

Trying very hard to get my thoughts together, I attempted to ask some intelligent questions;

Me: How long before the op?

Mr G: About four weeks - we have to operate within 30 days - government guide lines.

Me: What does 'total axillary node clearance' mean?

Mr G: All the lymph nodes from your left armpit up to your collarbone would be removed to avoid any residual cancer escaping into the rest of your body (this isn't exactly word for word but the gist of what he said)

Me: Oh. (I'm pretty sure that's exactly what I said)

He then explained that Vanessa would take me to another room and talk through any questions I may have.

The "Why me?" question would have probably been an obvious one but perhaps strangely, even now that question only pops up as a secondary or even tertiary, passing thought when dealing with other more practical and useful queries (I don't like any question which starts with why - it's a cop out and I won't even let my five year old use it if we can come up with a better way of framing the question). Mine were things like, "how am I going to cope with... (Insert relevant subject here!)?" So far: telling people I love & care about, telling my new employers, dealing with surgery, dealing with inactivity, being a good patient, being patient and good, being looked after, having no lymph nodes in my left arm... The list goes on and the latest one is, "how am I going to cope with chemo?"

I'm writing this, sitting in the Maggie's centre (a wonderful, tranquil place in the grounds of Charing Cross Hospital). This morning I was signed off by the breast surgery team for five months and this afternoon I will meet an Oncologist to pass on to the next phase of the treatment. Chemotherapy. Ho hum!

Meanwhile, back in June, Vanessa took me in to a room which on closer inspection was stacked, floor to ceiling with boxes of post mastectomy, prosthetic bras. They were fascinating and a little bit distracting so I can't clearly remember what exactly was said... I know I cried a bit. And we went through leaflets about various aspects of my particular type of breast cancer and what it meant in terms of treatment. By the time I left I was loaded with information, full of further questions which hadn't quite surfaced yet and slightly dazed. I also had my next appointment, to meet the breast surgery team.

So I hadn't been wasting their time. It was real. I had breast cancer. But I felt absolutely fine!

Two operations later and I'm not feeling quite so well now. A combination of two general anaesthetics in one month and all the surgery side effects have taken their toll on the poor old bod. And I have a feeling it's going to get worse before it gets better but...

BRING IT ON!

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Keeping Abreast of it

13/8/2014

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Lag

Since finding 'the Lump' I've been experiencing the opposite of 'living in the moment' or Mindfulness as it now appears to be called; which (after my Mum, my Niece & I tried out and rejected a lot of new (mainly made up) words and expressions to describe the phenomenon over breakfast this morning) I've ended up describing as 'lag'. I'm mostly at least a month behind what's going on right now. This has meant that my experience of having cancer has so far been almost totally surreal.

I don't think it helped that I found the Lump straight after completing the most difficult physical challenge I've ever undertaken (including giving birth twice with no pain relief). Or that I hadn't, at the point I uttered those immortal words,

"Ooh, that's not good" (see previous instalment) had any sleep at all for approximately 52 hours (not counting the couple of times I nodded off briefly whilst walking along the canal section).

I had barely caught up with my sleep when I turned up at the GPs three days later, in a bit of a haze, hoping that she'd have a quick feel and tell me I was worrying about nothing. When she handed me the referral form with 'suspected cancer' written in the notes, she said that it was just so they knew what to look for. When she felt under my armpit for signs of 'palpable' lymph nodes, there was nothing there.

Two days later there was.

The 'palpable lymph node' was probably the next "Ooh, that's not good" moment. I'd accepted the doctor's explanation of the 'suspected cancer' note on the referral form to Charing Cross Hospital - of course they needed to know what to look for... But the Lumpy Lymph Node was my body's way of telling me something was wrong and that it was putting up a fight.

My date came through very quickly for an appointment at the Charing Cross Breast Care Outpatients department. I was going to be seen exactly two weeks after the GP had referred me. But the Lumpy Lymph Node had frightened me and after speaking to the GP for her advice, I decided to see if they could fit me in earlier on a cancellation.

The staff at the booking office and in the outpatients department were all very patient and lovely and after a couple of anxious calls (I was trying to remain calm as it's never a good idea to let yourself panic in these or any other situations - it was quite hard not to by this stage. I have a very active imagination and a slight tendency towards hypochondria if I'm not careful. Give me a list of symptoms and by the time I've finished reading it I've invariable got most of them!) Very quickly they managed to fit me in, on the Thursday, a whole week before my initial appointment.

I turned up in the right waiting room (eventually) and took a seat. I'd brought a pair of trousers I was altering for Henry's book day costume which I'd almost completely finished by the time I was called in... (There'd been a delay waiting for my notes to turn up). The gentle, slightly distant, consultant, Mr Gordon, ushered me in to the room and again I waited (slightly less hopefully this time) for him to have a feel and tell me it was just a fatty lump and nothing to worry about. He didn't. He sent me for a mammogram.

Ouch! I wasn't endowed with a pair of whoppers (far from it!) and trying to get my poor, sulky little boobs into the X-ray squasher was more than a trifle uncomfortable. Then it was on to the breast care ultrasound department for a scan and biopsies of both the lump and the lymph node. But all this still wasn't happening to me!

As I walked into the darkened ultrasound room the X-ray pictures of my breasts were displayed on the lightbox in the corner. The two semi-circular, 'top views' were displayed side by side and I remember thinking they looked like a black & white photo of the moon... Lying in the semi-darkness, left boob smeared in KY Jelly, the delightfully cheerful sonographer breezed in and reassured me with, "there's nothing very exciting going on in the mammogram! Which is good, isn't it?!"

Then he started looking at the lump with his machine and (though he did a valiant job at covering it up) his demeanour subtly changed.

He took biopsies from the Lump and (eventually once he'd managed to chase it round my armpit for a bit) the Lumpy Lymph Node.

I think I went back to see Mr Gordon after that although I'm not sure why and can't remember what was said. On the way out I agreed with the receptionist that we would use my original appointment the following Thursday to come back for the results. I still felt like I was probably wasting everyone's time.

It was a HORRIBLE week. I was working as a receptionist at UK Sport. I'd been made redundant but had agreed to work there until the office move (a whole other story there...!). But I'd applied for, been offered and accepted a job as receptionist at the British Olympic Association. Blithely trusting that old assumption that 'cancer always happens to someone else' (well this still wasn't really happening to me, was it?) I went in and signed my new contract at the BOA. Then I broke a mirror... I'm not really superstitious but it was like a cork released from a bottle, it just tipped me over the edge and I cried & cried. And cried. Two of my colleagues tried to reassure me with the statistics - only one in nine lumps are cancerous - the chances were, I'd be fine. This was one of my more lucid moments when I knew it was happening to me. Horrible.

One of the longest weeks of my life ended with all sorts of confusion over the follow up appointment to find out my results. Unfortunately the appointment had been cancelled by mistake and I ended up sitting alone, (I hadn't brought anyone with me - I wasn't expecting to need support) in Outpatients for over an hour, getting into more and more of a tangle in my head...

The (internal) dialogue went something like,

"Well I can't have cancer if they've cancelled my appointment!"

"But wouldn't they'd have called me if the results were all clear and I didn't need to come in?"

"They could've sent a letter which has just been delayed in the post...?"

"If the results were all clear why couldn't they just tell you at reception?"

"Right, yes, let's go and ask at reception!"

This dialogue went round and round with various minor adjustments but in the end, Mr Gordon himself, came to get me from Outpatients, apologising for the mix up. I followed him, slightly bewildered that the consultant had come to collect me in person. I went to follow him into his consultation room but he asked me to sit and wait outside while he went to fetch someone else. I did as I was told. He returned with a nurse, went into his room with her and closed the door. I continued to wait but had just experienced another "Ooh, that's not good" moment - probably the strongest thus far.

About five minutes later (or was it a couple of hours? Time dragged and warped at this point and it felt like forever; but not nearly long enough), Mr Gordon popped his head round the door and asked me to come in.

As I sat down with a herd of elephants (the butterflies had long since metamorphosed...) stampeding around my stomach, he introduced me to Vanessa. I can't remember now if he said "This is Vanessa, your breast care nurse" or just "Vanessa, a breast care nurse" anyway...

We all sat down and he said,

"It's not good news I'm afraid, you've got breast cancer"

"Ooh, that's NOT good"...

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Keeping Abreast of it

13/8/2014

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I'm finally starting my blog. (Despite what the date says at the top there, I can assure you it is 9th August 2014!) This is meant to be about my career; Annabel the actress and I suppose in some ways it is...

At the beginning of this year (2014) I filmed an ad for Macmillan Cancer Care. I played a cancer patient receiving chemotherapy on an empty ward, surrounded by my thoughts - thank you's to all the people who had helped on my journey so far.

At the end of May, over the bank holiday weekend, I walked 100miles. I have done the Long Distance Walker's Association annual 100 mile challenge twice before this year. The aim is to walk the 100 mile route (run by a different group and in a different area of the country every year) within 48 hours. There are checkpoints every 5-10 miles run by volunteers from all over the country and stocked with delicious things to keep the 500 or so walkers (and some runners!) fully energised for the challenge.

I'm a two night walker. Some of the runners and faster walkers get finished in under 36 hours. But I just keep walking at a steady 2.5 mph and through two nights and get it finished in just under the 48 hour deadline.

This year the walk was in Wales. The Welsh Valleys to be exact. And it was wet. Very, very wet! It rained almost continuously for the first 26 hours. Then intermittently but torrentially for the next six or so hours. Everything was wet. None of the so called waterproof clothing was. The ground was boggy. The puddles were knee deep. Hardened LDWA 100 walkers were dropping out. Friends who had completed the challenge on many previous occasions were being timed out at checkpoints. The small band I had been walking with was whittled down to just two - with three checkpoints to go, Aaron and I were only 15 minutes ahead of the sweeper (the person responsible for

'Sweeping up' the walkers who weren't going fast enough to finish in 48 hours). By the time we got back to Pontypool we were just over half an hour ahead, finishing in 47 hours 28 minutes.

Eventually after I got back to the hotel I plucked up the courage to get in the shower and get wet again.

And that's when I found it.

A small, lozenge shaped lump on the left side of my left breast.

"Ooh, that's not good!" Were my exact words at the time.

I went to the GP three days later and was seen by Charing Cross a week after that. Mammogramed, ultra-sound scanned and biopsied, both from the lump and from a now palpable lymph node under my left arm, I was sent away to wait for a week for the results to come back.

It was breast cancer.

I was booked in for a lumpectomy and total axillary clearance. But I wanted to hold on to most of my lymph nodes if I possibly could and so persuaded the lovely Mr Hadjiminas (Consultant Breast Surgeon) to only take the lump and a few lymph nodes. That was on 10th July.

Twelve days later I went back for the biopsy results from that surgery. The margins around the lump were all clear. But all four of the lymph nodes they took were cancerous. A second operation was booked for a total axillary clearance. All the lymph nodes from my left armpit up to my collar bone were removed on Thursday 7th August.

I am writing this sitting on my hospital bed, waiting for my prescription from the pharmacy. I have a drain from the wound site which consists of a transparent plastic tube, stitched in to a neat little hole in my side. The tube runs from inside my armpit to a bottle which I will be carrying with me until it is removed on Friday. Yesterday it was the colour and consistency of raspberry smoothy; today it is a cheeky little rosé. Tomorrow I'm hoping for Chardonay as that will mean I'm healing inside.

So I am now lymph node-less on my left arm. But I am also (fingers crossed) cancer free too.

Chemo here I come...

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