Good News x 2

Good News 1 - Is There An Echo In Here?

Remember the panic three months ago during my echocardiogram when my ejection fraction had dropped to 61%, a downward trend I was getting concerned about? Well, panic over, it's gone back up to 64% and Dr E is so happy with me, he never wants to see me again :-)

Good News 2 - Virtual Reality

Radiotherapy students have a new toy to play with, rather than practicing on patients.

My journey into radiotherapy started in December last year following successful surgery to remove the cancer in my right breast. Throughout all the poking and prodding, appointment letters, waiting rooms, insipid cups of tea, warm cups of water, well-thumbed newspapers and other things that help contribute to the fun of regular hospital visits I was getting almost blase about each new procedure; a compliment to the medical team who had/have my complete confidence.

Early December last year saw me lying on a table, rather like the one in the BBC's article (linked above 'Virtual Reality'), whilst Dr R figured out where to fire the radiotherapy rays. After nine months of stripping off at the sight of Dr R this shouldn't have been difficult. But somehow, having a team of radiologists watching and learning whilst Dr R measured out on my boob with a ruler and felt tip pen saw me plummet to a new depth of despair. The radiotherapy will eradicate all those tiny little bits of cancer that the chemo can't reach, I'll have twenty sessions which will take place Monday to Friday for four weeks, excluding Christmas Day, Boxing Day and New Year's Day; it'll be finished by the middle of January, I don't have to do anything, there's no real side effects other than fatigue but somehow, going home with a felt-tip pen rectangle drawn on my boob upset me more than even now I can explain to myself. The indignity. Wasn't it enough that I was bald, without toenails, with scars on my boob and armpit but now a bloody black rectangle.

Check out the photo in the Beeb's article. That's me lying there, but I'm wearing a rather nice pair of boot cut jeans with some fandabulous spike heeled boots.

08:29 - 3 Comments - 4 Kudos - Add Comment

Treading the Boards

I've long been a fan of the theatre and of fashion so when the opportunity arose last year to wear a new gown to the theatre I jumped at it.


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This is just before I went into theatre to have the lump removed. I'd like to tell you all about it but don't remember a great deal.

I got wheeled downstairs, which was incredibly bright and sterile and frankly, just like you see in films. As I was given my pre-med I remember having a conversation about puppies. The next thing I know, I'm in recovery asking if my parents have arrived.

I'd already agreed to whatever pain-killers were necessary, although I was keen not to have anything I didn't need (like morphine). Mr U removed the lump (although the results took a few weeks to come through) and I was returned to the ward.

Absent Bloke, Absent Parents and Absent Brother were all conspicuous by their, er, presence. They were sat around me as I came too - Mum later told me that I looked down the front of my gown just after I was wheeled back in and said something along of the lines of 'I've still got my boobies'; I was convinced they'd lop the whole lot off, but no, Mr U took out the lump, the lymph glands and stitched me back up, inserted a drain to drain the fluid off and job done; go upstairs and get better. So I did.

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Girl, Interrupted

Between moving house, holidaying, a weird encounter with a Virgin and waiting for the glorious final treatment...

I returned from holiday at the weekend and finally got back on line at the beginning of the week. The house move went pretty perfectly and although I had the most brilliant neighbours and a fabulous fireplace big enough to sit in at the old place, I've not looked back. I still see the neighbours and there's a lot to make up for the lack of massive feature fireplace in the new digs (health giving daylight being one of the main things).

My broadband provider initially told me they were having problems processing new details so couldn't connect me, then when I called on the agreed date the guy had no knowledge of why I'd been told that and apparently I could have had continuous service. The power of the ISP.

So there's my excuses for a Blog, Interrupted.

As well as being my much-missed Nanna's birthday, Wednesday 23 July saw my last of 18 Herceptin appointments. These are administered (in my case) every three weeks; so that's just over a years worth of hospital visits on that one drug alone (I won't confuse you with all the other treatments); suffice to say that 23 July marked the official end of my treatment for breast cancer.

In time-honoured tradition, I want to thank everyone involved but somehow, that doesn't seem enough. I quite literally wouldn't be here without the intervention of Mr U, who my beautiful friend Deb recommended to me, the absolute genius (I don't use that word lightly) of Dr R, or the kindness and brilliance of Dr G.

This evening, whilst (OK, I admit it, a guilty pleasure) watching Richard & Judy (it finishes tomorrow so I'll start jogging or swimming instead) they featured a girl (Tara) who had donated blood to her mother (Joanne) who had leukaemia and a lot of the cancer processes have been reversed by her daughter's healthy blood cells. She's the first person in the world to receive this treatment, but almost a month in, it's showing incredible results.

Our hosts were keen to pin Joanna down 'Are you in remission?'. She skirted around the question as we all do. As Dr R said, remission sounds like we're waiting for it to come back. We're not. The all clear suggests we've become complacent. We've not. We're still battling – but my God, we're still winning!

So officially February 2007 to July 2008 was my Girl, Interrupted period. Thanks to the amazing medical team, family and friends I'm here to start another life.

My fab mate Loraine has organized a writing commission for me whilst I've been poolside in Barbados. I'm just about to email it to her. I hope she likes it.

I've got a whole heap of things planned and if you're interested, I'll write about them here.

If anyone has any suggestions on how to continue with the blog, let me know, I'd love to hear your thoughts.

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Finally, thanks for reading. You're a part of why my life is so worth fighting for. Thank you with all my heart, I wish you and yours love, light, health and happiness always.

14:27 - 2 Comments - 1 Kudos - Add Comment

The Good, The Bad & The Ugly

The Good

This coming Wednesday will be my last Herceptin appointment. I know I should be delighted and part of me is looking forward to life with three monthly hospital visits instead of three weekly. There's another part of me that will miss the feeling of security I get from seeing Dr R, Mr U, Dr G or the Chemo Nurses regularly. I had a really good cry about it a couple of months ago, so hopefully Wednesday will go off calmly and happily.

The Bad

Tuesday meanwhile, might see me move house. This is good and bad. I'm moving around the corner (good) so am staying around lovely familiar people and places. I only found out on Wednesday that I was moving (bad) and it will only be confirmed tomorow (very bad). Sadly, I won't have broadband for at least two weeks (very very bad) so no blogging for me. By the time the broadband's up and running, I'll be lying by a pool (good), covered in SPF50 (not so good) and wearing long sleeves and a huge hat. I'll fill you in on the details in late August.

& The, well it depends on your definition of Ugly, but certainly slightly shocking :-)

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Hospitals & Hormones

It's 7pm on Sunday evening and I'm sitting looking at my list of proposed blogs. They've got fascinating titles like 'reflux', 'CT Scan' and 'Charing Cross'. These are the 'unscheduled' hospital visits; Dr R reacting to my panic attacks, my increasing side effects.

It's not that I've lost enthusiasm for getting in touch with my cancer-side; I want to explain how it all worked for me, but really, do you want to know I started belching and got prescribed yet more drugs, that my panic attacks caused me to hyperventilate to the point that a CT Scan was necessary to make sure there were no blockages in my lungs? Do you need to know how one of these attacks had my Chemo Nurse worried enough to send me to Charing Cross hospital lest I was having a heart attack, where I underwent a series of tests and was sent home seven hours later with nothing wrong with me. That's cancer. You walk around with it for years, not knowing you're sick and then you over-react to the slightest twinge and because you were so brave (oblivious) for so many years your medical team want you to feel supported so they take a very cautious approach, warning you each time you're probably OK, but they'll take this precautionary measure or that precautionary measure. With the benefit of 20:20 hindsight, they were almost humouring me. For every panicked 'phone call Absent Bloke, my Mum, Dad or me made, I'm truly grateful for their cautious/speedy reaction but boy, is it an expensive and time consuming learning curve.

Oh and let's not forget, I have been incredibly lucky in pretty much every aspect of my treatment, from the initial 'oh shit, it's advanced and aggressive' Drs R and G and Mr U left nothing to chance.

Just after I was diagnosed, when Dr R was telling me my hair would fall out he also mentioned I may go through early menopause so he hoped I had had my children (oops). There was a chance it would all come back but er, well possibly not at my age. Every so often he asks me when I had my last period (March '07). I love not having periods (importantly it means no PMS, so Bloke can sleep easy), but the hot flushes have been going on for months and months. It's a surprising (to some) side effect but my PMT (or PMS) was so severe I was talking to Leeds University about participating in a study and was an active member of NAPS, an interview I had done was about to be published when I was diagnosed.

I was chatting to a friend I haven't seen for ages on Friday night, who in turn had a friend with him, he asked me something about last year to which I replied 'I can't remember, but you know, had my brain removed last year'. His friend said 'Why did you have a baby?'. That's how good a job the doctors have done, apparently I don't look like I'm recovering from cancer and I might even look normal enough to be a new mum!

It's exactly ten days until the end of my treatment. I can look back on eighteen months of chemotherapy, surgery, radiotherapy - the most amazing medical science and the most amazing medical professional human beings. That Cancer Research UK ad on TV 'I shouldn't be here', that's me, I shouldn't be here but I am.

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Life Thru a Lens

We're approaching the first anniversary of my trip to The Penny Brohn Centre. Prior to this week of healing, learning, meditation, making friends and acceptance of a variety of things, my parents are staying with me. It had been my first regime of dosytaxil and Herceptin and I'd inadvertently been given an extra 25% of the chemo which had wiped me out. I was looking forward to being away at the retreat and not worrying about upsetting my parents. I was too tired and weak to be 'their daughter' and leaving Mum and Dad in charge of looking after the girls and the flat was a huge relief.

The day before, my brother and his wife decided to come and visit me, on a whim. Pascale just got up very early in the morning and told my brother they had to drive down to see me. They've never visited me here before, but when they were but feet away from my front door, without the aid of a map or even my address, Pascale knew she was near me. She's completely intuitive. She can meditate at the click of a finger. We managed lunch together, an evening out at the local theatre and lots of stories and laughter before I retreated back to Cancerland.

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That's Mum, Pascale, Moi and 'Our David'. Dad, typically is on t'other side of the lens.

Once safely checked in at Penny Brohn, formerly known as 'The Bristol Cancer Help Centre' I waited in Reception to be collected. Whilst there another lady called Caroline arrived. We chatted about our journeys until we were collected and shown to our rooms. Once inside the room I therapeutically unpacked, noted the bedlinen was the same as mine at home, cream self-striped and the throw was identical to mine (Ikea). My mobile phone didn't work. The calmness began to seep into me. Once unpacked, we were invited into 'The Music Room'. The Music Room is beautiful. If you ever get the chance to sit in it, take it. Just go and sit there. It's peace and tranquility disguised as a Georgian sitting room with a huge floor to ceiling five panel bay window looking out onto the garden. Throughout the building they use natural wood and stone. The Music Room is in the original Georgian House and the bedrooms are a new, sympathetic addition. I'd just arrived and I didn't want to leave.

The other guests arrived, there was Caroline who I'd met, Debbie, Lauraine, Christine, Nancy, Sue and Colin. Then Kate arrived. Kate was our nurse, she would be with us in the evenings when the other staff had gone home. It was her job to make sure we were comfortable through the night. She would help us with medication and meditation, whatever we needed. As we sat and chatted, she and a colleague gave us all cushions and blankets and we did our first meditation. As we all lay down I, apologising to Colin, said it felt like a girly sleep over. The atmosphere was instantly supportive, non-judgemental, healing. Six of us had or, at the risk of using poor grammar, had had cancer and two were caring for patients with cancer.

It's hard to quantify here just what my week at Penny Brohn did. When I first went, I was still coming to terms with my diagnosis, five months later. My first thought from February to July as I woke each morning was c-a-n-c-e-r and me, how, why, random, what the fuck? When I came back it was healing, light, meditation, diet, peace and tranquility, self-sufficiency. We were given help, we were given support, we were given hope and my life is truly enriched by that experience, by those people who I'm happy to say, I'm still in touch with. Unfortunately, Nancy lost her husband shortly after we met and as regular readers will know, we lost Caroline in April but the rest of us are here to fight the fight and help each other along. It's no coincidence that we're all doing really well. Penny Brohn and the Bristol Approach have given us the tools to really care for ourselves.

07:08 - 0 Comments - 0 Kudos - Add Comment

Compression Chamber
Current mood: good
Category: Life

In April I noticed swelling in my right boob and was told by my Consultant Surgeon, Mr U that it was 'a little bit of lymphoedema'.  He'd get the lymphoedema nurse to contact me.

She did and sent me a leaflet, once read and inwardly digested I could contact her for an appointment if I felt I needed to.

At my radiologist appointment a couple of weeks ago, Dr G confirmed I had breast oedema.  Once you've got it, you've got it for life.  She recommends I do the massage.  I contact the lymphoedema nurse and make an appointment.

When my oncologist, Dr R told me after radiotherapy that it was 'life as normal' I took him a little too literally.   By April, I'd forgotten I'd had surgery and was doing shocking things like carrying my handbag on my right shoulder.  I was being totally outrageous and carrying the dogs' leads in my right hand.  I was even seen committing the heinous crime of carrying groceries in my right hand, privately hoovering right handed and well, OK, I've not actually plugged the iron in, but if I did, I would have used my right hand.

All this must stop.

From now on my handbag is on my left shoulder.  The dogs' leads in my left hand.  When the check-out assistant in Sainsbury's asks if I need help with my bags I have to say yes (aaargh).  I must hoover with my left hand; I have to steer it with my right foot (try it).  If I ever iron again, it'll be left handed.

My previous concessions to my weakened lymphatic system were to carry a tube of antiseptic cream around with me and to wear a sports bra most of the time.  Kay tells me that's a good start.  I must carry the tube of antiseptic with me everywhere, every day of my life.  I should sleep in a cropped top.

She's pleased I'm having regular reflexology and doing regular exercise in the form of gyrotonics and Egyptian dance.  Just before my appointment I have a chance meeting with a friend in the waiting area and she's just started yoga; I'm going to join her next Tuesday.  Kay tells me swimming is also great, supportive exercise.   My ten year old Speedo is wearing thin in the bottom of a drawer somewhere.  I reminisce about how I used to swim regularly in my twenties but no longer seem to have time.

Kay teaches me self massage and gives me exercises to manage the breast oedema and prevent lymphoedema.  I must do the massage daily when I am feeling calm and relaxed.  She gives me twenty minutes of exercises to do, also daily.  I must never exercise, however lightly, without wearing a sports bra.  Compression is King!

As with any hospital visit, this sounds like a good excuse for some retail therapy; I must sleep in cropped tops, I must wear compression bras, my underwired bras are my museum pieces.  I visit Betty.  She understands and I buy two compression bras and a swimming costume.  Now I've no excuse.

04:04 - 1 Comments - 0 Kudos - Add Comment

Waiting for Life
Current mood: accomplished
Category: Life

Cast your mind back to last summer.  Join me in June 2007.

In my world it's a beautiful, hot summer.  My chemotherapy drugs prevent me from sitting in the sun just now.  My cancer prevents me from sitting in the sun, ever.  I've always been a fan of the fake tan, I should buy shares now.

I've finished my first chemo regime of 5FU (fluorouracil), epirubicin and cyclophosphamide, known simply as FEC and am about to start on a combination of docetaxil and Herceptin.  Some of the side effects of FEC have been countered by the steroids I've been taking; for the duration of the treatment I am never physically sick, not once.  My nausea is low level, it peaks at mealtimes and during treatment.  The metallic taste in my mouth I learn to live with.  My diet has changed drastically.  The sores in my mouth are sugar induced.  I cut out sugar, taking natural syrup in its place.  Despite my healthier diet my waistline has expanded and my boobs are shrinking.  I am a bald rectangle with arms and legs.  At each appointment, Dr R examines me.  I text my friends 'I never thought I'd be so happy to have a bloke grope me and tell me my boobs are getting smaller'.  My friends encourage me.  I couldn't live without my friends.

My hair came out quickly and neatly, well mostly.  My eyelashes fell out soon after, then my eyebrows started to thin.  I'll skip the detail but I saved money on waxing last summer.  As well as removing the phrase 'it's all gone tits up' from my repertoire, I also had to remove 'made the hairs on the back of my neck stand up' because they weren't there to stand up; they're still not.  That also meant the very fine hairs on my face weren't there.  They're like men.  You don't realise they're there until you loose them.  Suddenly, your make-up slides off your face and it's not even hot.

My bathroom mirror remained covered with a scarf for the summer.  My newly weakened bladder needed to be emptied in the wee small hours and it was too much to have to face myself, steroid fat and bald at 3.30am.

For ten years or so I'd stuck to the same safe make-up routine, beiges and browns to make my blue eyes stand out.  I didn't realise that my naturally black eyelashes and eyebrows did that anyway, without them the beiges and browns made me look more ill.  I changed to using greys and heavy blues and purples, pencilling in dark brown eyebrows.  I tried and failed to use false lashes.  I didn't have the energy to climb stairs, really, false eyelashes?

Did I mention I'm doing a degree?  Why would I want to do that?  Creative Writing?  Extreme naval gazing.  I defer until January 2008.  That should give me time to:

1 Get all my treatment completed
2 Find another excuse to defer
3 Think what I actually want to do with my 'I shouldn't be here' life

OK, wake up but stay with me.  It's June 2008.  I'm checking into the 'student portal'.  Uni has told me no results until 8 July but I'm a born optimist (can't you tell).  Every day I look at it and there's four out of twelve boxes empty.  But today there's no empty boxes.  Little ol' me, left school at 15, no O levels, has a Bachelor of Arts and a respectable one at that. 

06:28 - 6 Comments - 6 Kudos - Add Comment

Is There An Echo In Here?

Had my echo this evening. For reasons that I neither know nor care about, they always take place on a Monday evening, between 6 pm and 7.30 pm; as a result, the hospital is eerily quiet and although I have a short wait, I'm generally one of only two or three people in the waiting room.

Strangely, the Cardiac Department is on the third floor so by the time I get into the waiting room, I'm normally wheezing so am glad of the 20 minute or so wait I normally have.

I once again pretend to be this Julie McCormac chick and follow the nurse into a side room. I undress, get given a gown and wait patiently for Dr E. This is my fifth echo. I have to have them because I'm on Herceptin which affects your heart. My first one in June last year was to ascertain how healthy my heart is under (relatively normal) circumstances. They're checking for the ejection fraction (EF). On my first test back in June 2007 it was 67% (between 55% and 75% is healthy).

Dr E comes in and seems uncharacteristically agitated. He starts by saying its nice to meet me, which is odd because it's our first anniversary. We then pick up our conversation from my last visit in March, so I'm relieved he does know who I am. Unlike visits to a GP (General Practitioner/Doctor) there is somehow more physical contact, when I see everyone from Dr R, my oncologist, to Mr U the consultant surgeon, to Dr G my radiologist and Dr E my echo doctor, we always either shake hands or kiss (we're so continental). Lying on the bed having the echo done I have to lie on my left side, facing away from Dr E, who perches on the edge of the bed, which is narrow, so we end up leaning against each other. I felt uncomfortable twelve months ago, now it seems quite normal.

My EF has dropped and is now around 60% but Dr E assures me this is OK, a variation of around 5% is usual. I finish Herceptin in July, so will have one last echo in September. With my healthy diet, plenty of exercise and the right attitude the 5% drop is nothing to worry about.

It's now three hours later. I know the 5% drop is ok but I can't stop thinking about it. I walk at least an hour a day, I do 90 minutes of dance on a Monday (only I haven't tonight 'cos I'm too bushed) and I do my gyrotonics on a Thursday. I'm pretty active the rest of the time too. This is one mother f***er of a drug I'm on.

12:43 - 7 Comments - 2 Kudos - Add Comment

Gene Genie

Missed opportunity of the week must go to me. Went to an Arabian Nights fancy dress party last night. Dressed as a belly dancer and donned my party wig, which is very long, straight dark hair. Was chatting to a friend dressed as the Genie who came out of the lamp who was also wearing a wig and to Lawrence of Arabia, who I didn't know. I assumed that everyone would gather it was a wig, if only because I kept moving it on my head like an uncomfortable hat. I also took it off and handed it round the room on a couple of occasions.

Genie: Dunno if the wig really goes with my outfit.
Bellydancer: It looks great, blond hair suits you.
Genie: It's green.
Bellydancer: Really? Green? I daren't take mine off lest someone who doesn't know me tells me I should try and grow mine, you know 'you look better with long hair'.
Lawrence of Arabia (giggling): Why, have you got a crew cut under there?

This would have been a good time to lift the wig off but I didn't want to embarrass him; I spent most of this morning thinking it would have been more fun if I had.

Friday morning went well at the hospital. Had my mammogram and then the nurse told me that my Radiologist Dr G, who I think I may previously have called a Radiographer, oops, wanted me to have an ultrasound as well for the sake of completeness.

Both these tests are to show what 'healthy' me looks like. My concern of course was that maybe, with all the stress of finishing my final semester (normally 13 weeks of tutoring) in 6 weeks without the tutoring might have caused sufficient stress for the cancer to return.

Dr G, with her calm, kind manner managed to reassure me that I should have no such worry. Everything looks as clean and healthy as previous tests have shown, but I do have quite a bad case of lymphoedema. I'm off to see the lymphoedema nurse in the next week or so and she will show me how to massage myself back to full health.

The cancer may have gone but the fear hasn't.

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