Gifts from afar

We’re approaching Christmas and like the Magi travelling from afar, members of the WordPress community have visited bearing gifts.  Today I graciously thank Glorious Mettle, a talented artist and designer for the Sensual Blogging Award.

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I should be totally candid and explain at this point that I’ve never thought of myself as very sensual being. It’s the geek in me; logic, reason, rationales and all that jazz.  It’s also true that this year’s events have sometimes left me feeling more like Beaker, Dr Bunsen Honeydew’s long suffering assistant than a woman in the prime of her life.  I tend to write from experience, sometimes real, sometimes imagined; when I’m able to write with emotion it’s because I know how that ‘thing’ feels to me – joy, sorrow, frustration, hilarity, shock, elation. I try to describe experiences through my senses; images, smells, sounds, tastes.  I’m not sure I’m good at it because the geek tends to struggle with anything more stimulating than OWASP standards but hopefully it’s enough to qualify as a sensual blogger.

So here are the rules:

  • Visit and thank the blogger who nominated you.
  • Acknowledge that blogger on your blog and link back.
  • Answer 7 sensual questions.
  • Select some nominees and notify them on their blogs.
  • Copy and paste the award on your blog.

Answers to the seven  questions:

Most romantic memory?  The first time I was given flowers (and every time since).

Most sensual music?  All About Eve – Martha’s Harbour  and Judy Tzuke – Stay With Me ‘Til Dawn and Crowded House – Fall At Your Feet

Most sensual season? Winter – the sudden switch from icy cold outside to toasty warm inside. The lights of a Christmas market, the aroma of cinnamon and nutmeg, the sound of boots crunching over snow. The taste of mulled wine…. hmmmm.

Favourite flower? Calla lily – it’s very sensous 🙂

Favourite fruit? Raspberries

Love is?  Want, not need. Give, not receive. Cherish, not grieve.

My nominees are:

A Meditative Journey

SageDoyle

Ajaytao

Nae’s Nest

Berry556

And now my son is home for the weekend so I’m going to spend some time with him, fingers crossed there’ll be no genetics coursework for me to review this evening. Tomorrow morning is a different matter…..

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Preserved: my pickled walnut!

My brain is…. a walnut!

One of the only parts of my body that hasn’t been poked, prodded, examined or scanned is my head.  Personally I think it ought to be examined but the medics say there’s no need…. they would think very differently if they could see what goes on in there. I think my brain looks something like this photo (courtesy of Flickr).  It’s wrinkly, has two hemispheres and lots of nooks and crannies where a multitude of random thoughts and chaotic images sulk around waiting for the most inappropriate moment to come to light.

Like the image of the sun shining brightly outside my bedroom window that caused me to wake up just before 3am this morning. I’m short-sighted so couldn’t see the time, I could barely find my way out of bed across the room to open the curtains. Once I’d established my bearings it didn’t take long to discover the sun does not shine at 3am, birds do not contemplate the dawn chorus and anyone without a walnut for a brain is still sound asleep.

Having returned to the safety of my duvet for a while I woke up a couple of hours later to find myself participating in another of the walnut’s favourite games…. the What have I done with  ________?  game.    Recently the ______ has included:  my mobile phone, the cats’ breakfast, my contact lenses, the laundry basket full of clean laundry, my notebook, my walking boots and the toothpaste.  Everything except my contact lenses has been safely recovered but my cats remain to be convinced of my trustworthiness when it comes to their food.  Fortunately the walnut managed to prevent me eating the cats’ breakfast; Kitekat megamix fish in jelly doesn’t really go with green tea and a banana first thing in the morning.   My stomach would definitely offer feedback if I tried that combination.

I believe it’s possible that my brain has always been a walnut, but I think it’s shrivelled appearance and slightly dodgy colour is more than likely a result of FEC.  I can’t swear categorically that all its deviant behaviour is due to chemical infiltration because the truth is, it used to do some very strange things without so much as a hint of drugs or alcohol. But I can report that it’s a whole heap stranger today than it was a few months ago and it would easily beat a barrel of eels in a ‘Guinness book of slipperiness’ contest.

For all its imperfections, my walnut brain has managed to see me through completion of the final two modules of my degree course this year.  The first module was pre-FEC but covered the period from my diagnosis through to surgery options.  Overall the walnut coped reasonably well, I managed a good pass in both the coursework and the exam.  The second module (that dictates the honours class for the degree), spanned the period from just before surgery through to FEC2. With a bit of extra effort and an extension for one of the coursework assignments my little walnut managed to keep going in spite of distractions – such as teaching my left arm to take over when my right side was temporarily dysfunctional in the summer.

I was, however, concerned about the exam for the final module.  By the time FEC2 came and went the walnut had a significant amount of extra work to do, not least of which was keeping my physical body alive and operational during several episodes of what can only be described as the medical equivalent of arsenic poisoning.  I suspected the What have I done with _____? game might have taken its toll on my ability to put forward a coherent, reasoned argument in 3500 words complete with citations and references.  

Whether it was luck, sheer bloody-mindedness, the raw power of walnut or a combination of the three I do not know.  But I learned today that I successfully passed the exam for my final module and was only 5 marks off a first in spite of all the chemical chaos.  With any luck this means my Christmas present is an upper second class honours degree to mark the culmination of three years part-time study on top of a more than full-time job.   Not bad for someone whose brain is a pickled walnut!

Tah dah! Blog of the Year Award

Today I’m surprised and once again grateful…..

Rarasaur http://wp.me/p2E0Bd-Rt has awarded me Blog of the Year Award.  Thanks Rara!

I’m new to blogging and it seems there are a few traditions, protocols, rules – whatever you chose to call them – that go along with the award as follows:

Blog the Year (2012) Blogger Award Rules

  1. Display the award logo on your blog.
  2. Link back to the person who nominated you.
  3. State 5 things about yourself.
  4. Pass the award onto 6 other bloggers and link to one of their specific posts so that they get notified by ping back
  5. Link back to the Blog of the Year 2012 Rules page so people can read the real, complete, and fully accurate rules of this slightly-different blogger award

Five things about me

  1. There’s a hedgehog house in my garden.
  2. I once managed to put a staple all the way through my little finger. It hurt!
  3. I’ve walked up a volcano.
  4. I always wanted to be a doctor or a vet.
  5. I play guitar, sax and piano but can’t get a sound out of a flute.

I pass this award on to:

Skinnywench: For amazing photos and challenges. http://wp.me/p1pmcV-2h5

Sharmishtha: For lovely illustrations and beautiful poetry. http://wp.me/p2POI8-u

Elizabeth: For being bright, sassy, funny, supportive and an altogether amazing lady http://wp.me/p2t3UN-ie

Michael: Because this is how I want my retireediary to be! http://wp.me/25zVf

Benedicte: Her life and that of her family is more complex than most of us can ever imagine yet she’s always full of positivity.  http://wp.me/2FC4m

Ryoko: The food looks amazing and makes me want to try it (all). http://wp.me/259c8

There are a number of other people I’d like to award for their amazing blogs but rules are rules so these are my six nominees.  For the folks I’ve nominated above, please don’t feel you have to do anything other than know I appreciate the opportunity to stop by your blogs, hear what you have to say and look at your photos.

A crash course in genetics and genome sequencing

My son is in the second year of a Biomedical Science degree and one of his elected modules is applied genetics.  For many years this subject has fascinated me but most of my knowledge stems from my love of science, a love that began 30 years ago.

I seem to remember my first encounter with genetics involved Gregor Mendel’s pea studies, the dominant or recessive genes associated with blue or brown eyes, ear lobes and rolling tongues. My ability to recall the details has been impaired by a variety of useless and useful information I’ve attempted to force into my brain since leaving school.  I followed a different educational path, into computing and technology, so never reached the point of applied genetics.  I think I’d have enjoyed applied genetics had I chosen to follow that path.

My more recent research extends to a specific field of study – attempting to understand how four previous generations of women in my family succumbed to breast cancer when the BRCA genes are not present in our blood lines.  Fortuitously I had the chance to take a crash course in applied genetics and genome sequencing whilst helping to review my son’s latest project over the weekend.  The subject is just as fascinating as I remember and the body of knowledge has moved on significantly.

I discovered that there are perhaps 50 or more genes involved in breast cancer but at  present aside from BRCA our knowledge about their actions and interactions is somewhat limited.  We simply don’t understand enough about how each of the 50 genes contributes to increased risk or how they might combine to spark the development of breast cancer, recurrences or metastasis. The level of complexity involved in assessing how genes change, mutate, are switched on or off is phenomenal.  So today I agreed to become a media volunteer for Breakthrough Breast Cancer.  It’s a charity I’ve supported for more than 20 years through payroll giving and they have a strong focus on research.  Breakthrough’s mission is “dedicated to saving lives by finding the causes of breast cancer, improving detection, diagnosis, treatment and services.”  I’m happy to be helping them – whilst great progress has been made in the diagnosis and treatment of breast cancer far too many women (and some men) continue to die of this disease each year.

I’m hopeful that by understanding the genetics of breast cancer, our scientists will also unlock the secrets of a wider number of cancers and reveal the anomalies encoded in our DNA that cause other forms of illness too.  Knowledge really is power when it comes to health,  genetics and tackling disease.

 

Beautiful People

Fuchsias still flowering in the garden despite torrential rain and biting frosts. Beautiful people in my life are like these flowers, they endure for all seasons.

The frustration of yesterday’s colossal admin error has passed so I’m being glad again 🙂

Today I’d like to celebrate and acknowledge the beautiful people in my life.  It may sound strange to say this but I believe I’m incredibly lucky in spite of all the heartache and trauma that dogs my family.  I’m surrounded by extraordinarily beautiful and loyal people, they’re incredibly kind to me and I feel privileged to have them in my life.

My family used to be much larger.  Breast cancer, leukaemia, prostate cancer, aneurysm and heart disease have all taken their toll on our numbers. Stroke had a go at my Aunt not so long ago but she wasn’t putting up with it and we’re all so glad she’s still here.  The small family that remains today is widely distributed throughout the globe –  UK, USA, New Zealand, Switzerland.  Whilst some of us grew very long wings, others developed stubby flight feathers and decided to stay in our UK homeland but we too are somewhat distributed.  In spite of physical distance and the number of differing and conflicting time zones, my family members keep in touch regularly.  They provide so much love, inspiration, comfort and tireless support; they’re truly beautiful people.

I’m lucky enough to have some wonderful friends, many of whom I’ve spoken of in earlier posts.  I’ve known a few for biggest part of my adult life; they’re extended family.  Others are more recent but it feels as if we’ve known each other always such is the warmth of our relationships.  Just like family, my friends are considerate, affectionate and deeply thoughtful.  Some are able to visit in person despite living far away. Others take advantage of today’s technology (thank goodness for Skype, SMS and email).  However we retain contact, it’s always appreciated and it makes a world of difference to me.  Like my family, my friends are beautiful people.

I also have a number of virtual friends.  Of course they’re real people but we haven’t had the opportunity to meet in person. Many are on a similar journey to my own, others simply share interests, humour or philosophies. Often we’re on different continents but the encouragement and support is as real as real can be. These are friends I may never meet but they’re beautiful nonetheless.

Just like the fuchsias flowering into November, withstanding torrential rain and biting frosts that now frequent my garden, my family and friends are here for all seasons.  Come rain or shine, storms and frosts, these beautiful people stay around, keep connected and help make my life a joyous place to live.

So you see in spite of everything being human might throw at me, I’m extremely lucky.  My world is filled with the most amazing, heart-warming, tender, genuine, constant, inspiring, humourous and kindly people I could ever have hoped to encounter. You will know who you are and I hope this small tribute goes some way to tell you how glad I am to know you and how grateful I am for everything you bring to me.

You are all beautiful people, you create an exquisite beauty in my everyday life and that, quite simply, is the biggest gift anyone could ever confer.

Letter no. 15: Ivan Speaks

Reblogged from Letters for Michael (http://wp.me/P1vp7U-1U). Coco authors this blog and it caught my attention. Coco encourages others to engage with his idea.

“In the beginning, a man is born in the mind: a figure without a soul. As time races and the heart ages, each day moments are remembered, thoughts are collected, letters are sent and eventually unfolded. In the end though, some questions are still left unanswered.”

Coco writes that this series of letters are about daily thoughts, life, love, and lots of it. The letters are about random ideas and encounters that may be real or fiction.
“His name is Michael, the man who the letters are for. Michael is a friend… an imaginary friend. You can be Michael.”

To be Michael you simply reply the most recent letter posted on Coco’s blog. Yesterday he kindly posted a letter I wrote when I decided to put myself in Michael’s shoes last week.

why not give it a go and be Michael someday?

Letters for Michael

by Tracy Willis (A Response to Letter no. 14- Etxraordinary Measure

Dear Coco,

Thank you for taking in me in, providing me sustenance and money so that we may live another day. My mother is sick and we have nothing and no-one except each other. I am here on the street because she cannot be. If I fail to reach out, to appeal to your heart and your humanity there is no future for us.

My mother did not expect for me to be born this way and I did not ask to be to be cut off from you and the rest of the world. I cannot hear you or answer your questions. Without a voice how can I appeal to you?  Without words how can I tell you that I have not eaten for three days and my mother is now very sick.  I do not share the…

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It’s all gone Pete Tong!

What can I say?

I got up very early today and started taking my super high dose of dexamethasone in preparation for Taxotere and Herceptin (TH1) tomorrow.  I made the 45 minute journey through floods to get my bloods done.  I asked the phlebotomist to take a rather large quantity of extra blood samples so I may participate in the Imperial Cancer Research  BOCS study where I hope to contribute to the body of knowledge and the race for a cure for breast and ovarian cancers.  I also dropped by to see the trials nurse at chemo camp where I formally completed my paperwork for the Persephone trial, another attempt to improve the body of knowledge and possibly make this all just a bit more bearable for future generations.

For the past few weeks even if it’s made me gag I’ve eaten as balanced a diet as possible to ensure my blood, especially the white blood count and neutrophils, stayed above the cut-off point for chemo to take place.  I’ve approached saintliness and that’s no mean feat when undergoing this treatment.  Don’t get me wrong, I do not enjoy it one iota but I work darned hard to make sure I do everything I possibly can to keep the chemo on track.

Today it’s all gone Pete Tong. Wrong, wrong, wrong.

Due to an admin error it’s all gone Pete Tong!

All I can say is Fec. A great big Fec with extra Fec-ing Fecs on top.  It’s all gone Pete Tong and what’s more it’s absolutely nothing to do with me, my somewhat strange, deranged and deviant body or my incredibly important yet out-of-a-stone only blood donations.

It’s almost impossible to believe but it’s all gone Pete Tong because for some reason beknown exclusively to the admin powers that be, my blood test results were not treated as urgent today.  Instead they went in to the ‘we’ll get round to them at some stage’ routine reporting pile.  Here come the dominoes….. as my blood test results weren’t passed to chemo camp pharmacy in sufficient time, my Herceptin prescription wasn’t written up for tomorrow.  As my Herceptin wasn’t written-up, my oncologist wants to delay my treatment.  I’ve taken a whole days worth of super-strong steroids for no reason whatsoever and there’ll be no TH1 for me to look forward to in the morning. I now have to wait until Tuesday 4th December.

I tried telling myself it’s just a one week delay but the reality is it’s not that simple.  A one week delay means TH2 falls on 25th December.  Chemo camp isn’t open on Christmas day and even if it was I’m fec-ed if I’d rock up for chemo instead of spending time with my family when fully cognizant that for the rest of Christmas and New Year I’d be sore, sickly and dealing with a new set of side effects. It’s inevitable. Just as a row of dominoes creates the domino effect once the first is flicked, delaying  TH1 means TH2 will also be delayed.

I’m not a betting person but I know a dead cert when I see one and here’s the rub. TH2 will not be delayed by just one week, it’ll be delayed by just over a fortnight because a Doctor must be present when I have Taxotere and Herceptin (in case of the allergic reactions I mentioned in Ascending at Altitude http://wp.me/p2MIsj-7s  It’s Christmas, the Doctors won’t be back until January 2nd at the earliest. TH2 will be January 3rd at the very best projection. All because someone in ‘admin’ failed to note that my blood results were marked urgent at 9.30 am this morning. >:-/

It gets even better when I look ahead to 2013. All the medical people associated with my treatment journey insist that: I must not look ahead, I should take each day as it comes, I ought to stop planning and concentrate on getting through the present.  What they haven’t appreciated is that I get through the present by looking ahead, imagining how, where and with whom I’ll be enjoying my life in the months, years and decades to come.  I’m 43, I’m expecting to double that in spite of my degenerate body so I don’t intend to be confined to a 24 hour event horizon.  My mind doesn’t work well with simple achievable goals – they’re too easy, they present no challenge and to me they’re a bit of a cop-out.  My mind finds inspiration when it cogitates on objectives that look almost entirely unachievable, the kind some people might shake their head about and say “oh my God” or “that’s impossible” without giving them a second glance.   But that’s the way I’m wired up, always have been and probably always will be.

I anticipated being done with chemo on January 8th, very early into 2013.  Finishing in the first full working week of 2013 meant that when I came to re-write history, as we all do,  I could easily consign chemo and all it has brought me into the strange events of 2012 category.  I could cope with mentally fudging dates so early into the New Year thus liberating myself and considering 2013 a completely fresh start where I’m cancer-free all year and for many decades to come.  Now it looks like chemo won’t finish until the end of January, a whole 1/12 the way through 2013 and even with my hyperactive imagination I’ll find it hard to fudge a whole month out of existence.  I know the Herceptin hokey-cokey spans most of next year but I’m told it’s nowhere near as much fun as chemo so I’d consigned it to the ‘still fighting cancer minus head to toe collateral damage, keep strong and carry on’ category.

And the icing on this super sticky cake….. if my remaining chemos are delayed along the lines I anticipate above I’ll stop getting paid for the pleasure of my (until now) regular near-death experience and all the post-chemo recovery period Dr C predicts  ‘takes a while.’ The most expensive time of  year when heating bills are astronomical, food prices are rising faster than ever, I’m forced to buy a lot of my own drugs via Amazon because the health authority can’t afford them and simply filling my car with fuel for hospital trips consumes a significant chunk of our household budget.  Fec-ing fantastic. I don’t use the very, very naughty swear word but if I did, today might be a good day to use it. All because of a stupid and completely avoidable admin error. Thanks whoever you are, you’ve made my day, my month, probably my year and you’re going to have a material impact on me and my family next year too. That’s just perfect.

I’m going to have to play the Glad Game (http://wp.me/p2MIsj-aP ) full-on like a woman demonically possessed of boundless optimism, limitless forgiveness and the remainder of a 16 mg corticosteroid ‘high’, starting right now. So here’s the initial glad list:

1. I can immediately stop taking excessive corticosteroids that speed my heart, cause dizziness, swelling, migraine and turn me bright red… and restart them next Monday.

2. I won’t endure poking, prodding and battered-wife style bruising involved in numerous failed attempts to find veins for chemo tomorrow. A one week reprieve might offer my hand and wrist a few extra days to regenerate into something more veiny. Be glad bony appendages, you’re onto a winner this week.

3. I don’t have to anticipate what will happen to me during or after TH1. It’s only temporary but I’ll use the time to think other, lighter thoughts as I stay awake all night tonight thanks to aforementioned steroids.

4. I’m glad I decided that when the sky falls I want to be Bond (http://wp.me/p2MIsj-b4). Another admin-related Pete Tong incident might make my moral compass swerve violently away from cake and cocktails; procurement of a SIG P226 would become my only mission.  Screwing up my chemo schedule, my thoughts about 2013 and my pay might be a tiny inconsequence for whoever made this jolly cock-up but it has huge consequences for me and my family. I beseech you, do not do it again because you really wouldn’t like me once I’m strawberry blonde, more than slightly annoyed, armed and Bond.

I’ll play the glad game again tomorrow when I suspect my thoughts may no longer be clouded by images of incompetent administrators and semi-automatic handguns.  If I don’t post here in the next few days it’s most likely due to the fact that someone in law enforcement is reading my blog and visited me with ‘the big key’ during one of those special early morning wake-up calls.  That kind of action really would throw everything into the ‘it’s all gone Pete Tong’ category but I’m optimistic at heart and there’s room for the glad game to continue, even in the trickiest of fixes.

I already have my hypothetical list of things to be glad about including:

  • Providing my neighbours with something juicier to gossip about than the state of our weather.
  • Feelings of immense gratitude because Sky TV, higher education degree courses, food, drink and heating are all gratis when detained at Her Majesty’s pleasure.
  • My cancer treatment would carry on regardless of my incarceration.
  • I’d avoid infections as I’d be held in solitary confinement.
  • Zub could claim single occupancy council tax relief (a 75% reduction) so there’d be one less dirty great bill to worry about.

I guess the incompetent admin might not agree if I secured a SIG, developed a psychotic version of chemo brain and was unable to forgive any more errors.  But when I come to think of it there’s a tidal wave of gladness just waiting to wash over me if I were to be arrested and locked-up.  It looks like we might be significantly better off if it all went a bit Pete Tong.  Just how wrong is that?