Dates to Forget

november-30

The 30th of November is not a date I relish. I woke this morning knowing that today would be long and drawn out. But I still had a moment to check my social media. As you do. Facebook has an app that, on the whole, I dislike. Sometimes On This Day is nice. Sometimes it brings joy. And happiness. Which is why I have not switched it off. Other times it does not. It is inexplicable to me that I forgot what the date was today. I can only assume that I have been distracted by current happenings. However, Facebook was having none of that. It was clearly desperate for me to remember.

So this morning, as I lay in bed, trying to marshal my thoughts into some kind of order, I was greeted by this:

 1a-really-hating-snow-tuesday-30th-november-2010

 You see, six years ago, on this very day I decided to go crowd surfing. Without the crowd. As pass times go I do not recommend it. I was not involved in a car crash. I was not the victim of an assault. And nor was I drunk. I simply slipped over. On our drive. In the snow. This led to: multiple fractures; five operations; chronic neuralgia; word retrieval problems; rubbish vision; and an abiding aversion to snow. It also led to something of a re-invention. That need to create something from the wreckage of your former life is a feeling I am very familiar with. The career I was working towards in academic literary research became impossible as my vision did not allow it. And so my business was born. This I do not regret. I love my job. My business is small but perfectly formed. It allows me to work on good days, bunk off on bad ones, and generally it is the perfect way of living for both me and the Captain.

However, you can see why I do not want to embrace a ‘new’ me once again. The very thought exhausts me. I do not believe I have another facet left to explore. I have been there, done that.

Six years on I am in a very different place. I still have chronic neuralgia. I still have dodgy vision. I still have word retrieval problems. Large chunks of my face are numb or experience ‘altered sensation’ (such a euphemistic phrase!). But having thought I would have to wear a paper bag on my head in order not to frighten small children, I am in position where it is not possible to tell the extent of my surgery. Even when I point out my scars. I am not best pleased to be needing the servicing of the NHS once again and feel it is particularly unfair but then life is not fair, is it?

Just now, though, I am terrified that I cannot get back to my chosen way of life. I do not know of a single person who has not talked about cancer changing them in a fairly gargantuan way. Currently I am so tired, the thought of prepping the 20+kg of Seville oranges I should be tackling shortly after Christmas can reduce me to tears. What I am saying? The thought of Christmas can reduce me to tears!

I do not want to change. I just want to get back to me. I have done recovery before. And I do not like it.

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Patch Testing

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Oh my, this week has been a long time coming.  Surgical Spice referred me back in March but some how the referral got lost.  It took much investigation to rediscover it and this was the third attempt at appointments.  But at long last the process has begun.

Now that it has, I am not sure why I was so keen.  This morning I spent three hours in a different part of the hospital at a different clinic waiting in yet another waiting room.  I am beginning to think I should start playing Hospital Department Bingo – I must be in with a chance of Full House.  Today, I had an extensive history taken.  The Vicks story was recounted but not so many laughs this time.  Allergies are serious business here.  Following this, vast quantities of little squares with suspected allergens in were stuck to my back.  With tape.  Adhesive tape.  Which looked suspiciously like the sort of tape that I have been reacting too.  To give the staff their due, they were concerned.  But had no option.

‘If you feel your skin beginning to blister, do take it off, won’t you?’

they said.  Given that these patches are plastered all over my back I am not entirely sure how I do this.  I cannot see them, I cannot reach them, and some are on numbed areas of skin.  I think I just endure and hope for the best.

I was sent away with instructions not to bathe or shower for the rest of the week (argh!!) and to return on Wednesday and Friday for progress assessments and results.  Currently my back feels horribly itchy and on fire.  So I guess something is happening.  This had better come up with some answers.  What I need is to discover what it is that makes my skin go bonkers with adhesive dressings and to find an alternative prior to my next bout of surgery.

It has to be said that that I am more than a little concerned that I have made the whole thing up and that my Mother was right and we do not have allergies in our family.  Time will tell.

In other news, I heard from the Genetics Unit and based on the information provided I am unlikely to be at risk from one of the known cancer predisposition genes so no further screening will be required.  This is seriously excellent and another one to put to bed.

Moving Forward

hot-flush

There are two things I have been getting up to without telling you.  Both relate to my recovery.  Both are about progress.  I hope.  Both exhaust me.  But so does getting out of bed so that is not news.

First up, is Breast Cancer Care’s Moving Forward Course.  As I approached the end of my chemo I had a sort of mental tick list of Things to be Done.  And this was on it.  I did not stop to consider whether or not it would be beneficial.  I just signed up assuming it would be.  I am now half way through the four weeks.  For the past two Monday mornings I have been found in the building where most of my midwifery theory was delivered.  It is more than a little strange being back there, especially under such differing circumstances.  So far, I am not sure I have learned anything new.  For me, the benefit has been to be in room with nearly twenty others who have been treated for primary breast cancer.  We are all at differing stages of recovery.  I think I am the most recently out of chemo, most seem to be about a year on from active treatment.  The best moments are when one person voices a concern or expresses an opinion and a ripple of recognition or agreement trickles round the room.  We have much in common.

Secondly, I have been tackling my hot flushes.  Or rather, my hot flushes are being tackled for me.  Remember the lovely Complementary Therapy team that I had been referred to?  From them I received reflexology treatment during each chemo cycle and it was wonderful.  Having completed that, they then signed me up for Auricular Acupuncture to treat my hot flushes which are still a sight to behold.  At times, my glasses steam up, such is their force.  Auricular Acupuncture has a good reputation for treating hot flushes so when I trotted along for my first session on Wednesday, I had high hopes.  There were four of us being treated and we were arranged in chemo style recliners before having both ears stabbed with five needles.  The initial discomfort soon wore off and the next thirty minutes floated by in a dim lit haze to waft-y pan pipe-y music.  Keeping my eyes open at the end of the session was harder than usual and I foresee sleeping overcoming at some point during the next seven sessions.  Already though, I have noticed a difference.  I have still had some ferocious flushes but overall they have been far less.

My only other news is that I am tireder than a tired thing popping tired pills at the Tired Olympics.

Jar of Joy

jar-of-joy

The days of post treatment can seem very long and whether it is the dismal November weather, the grim political situation or just the infinitesimally small steps to recovery it can make for a depressing time.  I think I am generally of a cheery disposition but I find it hard to remain so all the time.  And I know I am not alone in this.  Many speak of the difficulties of adjusting to life post treatment.

We are told we need to adjust to a ‘new normal’.  To embrace our ‘new selves’.  And many find this a pivotal moment in their lives when new ventures are launched, new paths taken and all sorts of developments occur.  Personally, I just want the old me back.  I have done the reinvention before.  I do not have the energy to do it again.

However, I do see the need to address the miserableness.  Cancer has taken much from me but I will not allow it to take the joy from life.  One of the blogs I read is by the fabulous Liz O’Riordan, a breast surgeon who was diagnosed with breast cancer last year.  She writes with warmth, wit and great insight and I love her posts.  She has recently delivered a TEDx talk based on her experience which you can see in full here:

I promise, it is fifteen minutes of your life that will be well spent.  Ever wanted to know how to support someone with cancer?  She covers it brilliantly.  Ever wanted to know your porn star name?  That too is covered!  She also speaks of one her coping strategies for seeing the joy in life.  Creating a jar of joy.  And this appealed to me.  So I have made my own.

I have taken my Emma Bridgewater Trophy Wife urn (the 28th wedding anniversary present from the Captain remember?), because just thinking about it makes me smile.  Next to it I have placed a jar of cards and a pen.  The card jar was a delightful gift from a friend and is already a variation on this theme.  It has pre-printed messages that I have been taking out and reading to cheer me up.  I am now re-using them for a double whammy.  So the first moment of joy in my trophy jar is written on the back of ‘Only your real friends tell you when your face is dirty’.  This pleases me.  A lot.

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Once I began, I found moments kept coming to me: my darling granddaughter allowing me to wear a yellow duster on my head on Sunday (a rare privilege!); enjoying the taste of coffee again; walking to the shops without becoming breathless.  I could go on.  Having begun this way, I decided to limit myself to one written one each day but am delighted that this triggers other joyful memories.  At this rate, my cup will overflow very soon!

Unexpected Joys

meds

Today I saw The Doc again.  This was a surprise.  I was not anticipating the pleasure of his company until October next year.  However, I have been having one or two issues … plain sailing was never going to be on the cards, was it?

Yesterday I rang the Breast Care Nurses as I wanted to check the procedure for changing the osteoporosis meds I am on.  Since taking them, I have been experiencing fairly constant indigestion and on one occasion, spent the day throwing up.  I am such a class act.  My GP is already on the case but I wanted to be certain that I would be referred to the same hospital.  In passing, I mentioned the pretty much constant back ache I have had since my diagnosis back in February when I slipped a couple of discs.

BC nurse: ‘I’m sorry?’

Me: ‘Erm, I’ve had backache since February …?’

BC nurse: ‘And you’ve not been scanned, have you?’

Me: ‘I had a DEXA scan.  But that’s not what you mean, is it?’

BC nurse: ‘No.  I think an appointment with The Doc would be wise.  Tomorrow?’

Me: ‘Wow.  Er, yes, fine.’

It is not exactly something you refuse, is it?  So today, I was back in clinic, sitting opposite the chemo unit, watching the time tick by, waiting once again.

As always, The Doc was lovely.  He has instructed my GP to refer me to the Osteoporosis clinic for six monthly injections (sub-cutaneous or IV, the jury seems to be out on that) and prescribed me variations on the vitamin D and calcium supplements I have to take.  I am being sent for an urgent MRI and bone scan.  Which means sometime in the next four weeks.  We will then reconvene to discuss the results.  He was alarmed by my backache which was disturbing.  ‘I’m 99% certain it’s my discs & osteoporosis,’ I said.  ‘Yes, yes,’ he mumbled in reply.

Neither of us mentioned the other possibility because no one wants to think about that.  So it sat there in the middle of the room, drawing attention to itself, like the embarrassing drunk at the party that no one wants to acknowledge.  Hopefully, by my next appointment, it will have sobered up and in the cold light of results, will have vanished like a distant hangover.

Lighting Candles at Midnight

wonder-woman

Dear World,

I feel I owe you an apology.  This year I have not been firing on all cylinders.  I have been distracted.  I have dropped more than a few balls.  Plates have not been kept spinning.  My eye has not been on the game.

Normally I am quite good at holding things together.  I just did not realise how good.  I stop taking notice of you for a few short months, tied up as I was with cancer, and Brexit happens.  This was rude and unnecessary.  How to kick a woman when she’s down.  But that was not enough.  Oh no.  You planned a very special birthday treat for me.  Donald Trump as US president.  Seriously?  You thought this would be a good way to get back at me for ignoring you?  As attention seeking behaviours go, this is a full scale toddler meltdown of nuclear proportions.  And I am less than impressed.

I fear ignoring such behaviour is not the way to go but I am at a loss to know how to rectify things.  My Wonder Woman pants may not suffice.  Like many I am fearful of the future, disillusioned for my gender and saddened by the hatred.  For the second time this year my first word on waking was a shocked ‘No!’  But I do not want to live in fear, World.  So, I repeat the words a friend shared on Facebook:

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and I choose to live lighting candles at midnight, begging to differ wherever I encounter darkness.  Join me and let’s live as people of light.

xxxx

Two steps forward …

fine

I have had a busy couple of days.  That is itself is a good thing.  It pleases me.  What pleases me less is going to bed last night at 9pm, pretty much sleeping the clock around, waking this morning at 9am and feeling like I had not slept at all.  This I do not like.

I have done this recovery from chronic illness malarkey before and it is tedious.  In 2010 I had a serious accident.  I fell on our drive in the snow, crushing my face which resulted in multiple fractures.  I needed five operations to repair the damage and rebuild my face.  It took 2 1/2 years to recover.  I did not enjoy the recuperation then.  I am not enjoying it now.

However, my busy days were good.  On Friday I went to visit my MP to ask her to do what she could to campaign for secondary breast cancer.  She is going to chase up the CEOs at the two hospitals involved in my care as these trusts are not accurately collecting mandatory data needed to plan services for patients with secondary breast cancer.  I wrote to them over a month ago and have since chased up my letters to no avail.  She is also going to liaise with Jo Churchill MP who is a great advocate for breast cancer generally and recently questioned the Prime Minister on the subject.  You will see from that link that Teresa May’s answer demonstrated her lack of knowledge so I gave my MP a copy of this excellent piece that made front page of the HuffPost.  It beautifully explains why we need Government to understand the issues at hand.  It was a good meeting and I was impressed by her knowledge and enthusiasm.  Of course, time will tell if that translates into action but it was encouraging.  I left her with the prototype of the new fundraising jam I have been working on.  Introducing: Not Second Rate Jam

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This prototype was using Raspberry & Apple Jam but the real McCoy will be Raspberry & Rhubarb and will be available next year.  Details will follow.

Also on Friday I signed up to Slimming World.  I need to get my BMI down to recommended levels before my next surgery and I knew from friends that there was a very supportive group locally.  It is a little earlier than I intended to do something so formal but my second born has voiced an intention to do likewise so it is something we can do together.  It felt a positive step and I have enjoyed tackling cooking and food prep once again.

Yesterday, the Captain and I took a trip to visit my sister which was a delight.  Thanks to the Captain’s serious and very inconvenient cat allergy we have not been able to do this for some years.  But a recent accidental discovery meant it was worth another shot.  The whole thing can be declared a success.  So long as we kept to non-carpeted areas and kept it short it was possible.

These two days made me feel normal.  Today not so much.  But there is still fun to be had.  I am anticipating the visit of an old friend with great relish and my first born and family will shortly be arriving with fireworks.  Excellent.

Boobilicious

bust-cream

Today I had a date with Surgical Spice.  Remember her?  I last saw her back in May.  Before chemo.  It is hard to remember such a time but it did exist.

This appointment was another opportunity for her to admire her handiwork.  Which she did.  And then pointed out all the flaws.  A dip here.  A bulge there.  Rude, I thought.  I tried to cheer her up with my party trick.  Have I told you about this?  I can make my newbie twitch.  It is really quite impressive.  I could tell Surgical Spice was taken with my performance as she checked my notes to make sure she had disconnected the various bits of muscles from the things they needed to be disconnected from during my last op.  She had.  I probably will not put on public displays of this talent.  It is probably best left unseen.  I was certainly not asked for an encore.  Sigh.  But should the Captain and I ever be down on our luck, perhaps a career in a freak show could save our bacon?

So the upshot was I need more surgery.  This I knew.  It cannot happen before March.  Pesky chemo.  I would like it to happen before April as our plans for this year have been delayed until then.  If it does not happen in March it will be some time during next Autumn/Winter.

I will be having my remaining breast reduced to match my newbie.  I get to keep my nipple unless fat necrosis claims it.  My newbie will have its dips filled out with fat grafting from fat hoovered out of my stomach.  And my bulges, or dog ear, will be removed and tidied up.  The whole op is expected to take about four hours.  I should be in hospital for no more than two nights and the experience should not be as arduous as my last.  But it will involve constricting knickers (which I had better not get in a twist), surgical bras and weeks of recovery.  At the end of it I should have a matching pair of newbies.  Which would be rather nice.  After that, I will just be in need of a new nipple to balance the old one, something that can hopefully be done under local anaesthetic.

Consent forms signed, hands shaken, Christmas wishes delivered, all that remained was to get yet more photos taken.  My portfolio as a topless model must be getting quite thick. Still have not nailed the Lean In And Pout look which must, of course, mean I will have to do it all again.

And now I just wait for the surgery appointment to arrive.