Revenge of the Sheep

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There is a story in my family about our ancestors.  One relative tried to trace our family tree back in the day before t’interweb and whatnot.  She tried for some time using parish records.  We hail from Cumbria, land of sheep, but this we knew.  She managed to get one generation back from living memory but then could go no further.  The church records dried up.  It seems our ancestors were not baptised nor buried on consecrated ground.  Obviously there was only one conclusion to draw.  They were all hung for sheep stealing.

Now I am confronted by this once again.  You see, having endured a week of irritation, I returned to the Patch Testing Clinic on Friday for my results.  I am not as allergic as it first appeared.  Or at least, I did not test positive to as many substances as was anticipated.  But it turns out I am allergic to Amerchol L 101.  When they gave me that snippet of information I was devastated.  I mean, Amerchol L 101!  That has to be on the tip of everyone’s tongue when it comes to allergies, hasn’t it?  Slight rash?  ‘Oh, did you brush up again a bit of Amerchol L 101?’  Bit of itching?  ‘You must have reacted to that Amerchol L 101 I left out on the side!’  In other words, no, I had never heard of it either.

But I bet you have heard of lanolin?  Amerchol L 101 is part of that.  And lanolin is from sheep.  So who’s laughing now?  Revenge of the sheep …

Actually, so far, lanolin is not proving too difficult to avoid.  I have long suspected it makes me itch so have naturally avoided it.  It is in vast ranges of things  including medicated ointments, furniture polish, waxes, textiles, inks, hair products, lipsticks, moisturisers, furs, cutting oils, leather and paper.  But avoiding parabens seems to have meant that I have also escaped lanolin.  Not that the two are necessarily linked.

However, the other allergy identified has caused all sorts of issues.  Hydroperoxides of Linalool.  Another new one on me.  Initially, I thought, how much of a problem can that be?  And then I started to look at ingredients.  Oh my.  Linalool is used for its fragrance, added to food and drinks, to perfumes, cosmetics, soaps, detergents, and waxes.  It autoxidises on air exposure at room temperature forming hydroperoxides, which are far more allergenic than straightforward linalool.  But all products containing linalool will form hydroperoxides so the only way to avoid contact with them is to avoid products containing linalool.  Which is basically my entire bathroom.  Oh goody.

My main aim in getting patch tested was to sort out my ‘allergy’ to dressings and metals prior to my next lot of surgery.  Did I achieve that?  Not exactly.  None of the dressings or tapes I was tested for provoked an allergic reaction.  However, thanks to the tape used to hold the patches down, I was diagnosed with Contact Urticaria.  Whether this is good, bad or indifferent news, I am unsure.  It is not simply a matter of avoiding particularly adhesives or dressings.  But it may just be a matter of treating with antihistamines.  The part of me that remains concerned does so because I am well acquainted with antihistamines.  So I rather think the dermatology team are telling me there is not a lot that can be done *sigh*.  I was also diagnosed with Dermatographia which was a bit more fun.  The Consultant drew gently on my arm with the wrong end of a pen.  She chatted to me for about five minutes then took a look.  Red weals had risen everywhere she had marked.  If my tit twitching act ever pales, I could look at developing this as my party piece as it was really quite impressive.

As for the metals?  I am a mystery.  Bizarre.

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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.

Vist no. 5

Dr visit 5

Each time I have visited the oncology clinic I get weighed.  I am not entirely sure why this.  I know in theory it is because drugs are assessed on body mass but in reality this is not what happens.  As a six foot woman I take the same amount of antibiotics or analgesics as my five foot three inch mother or the six foot three inch Captain.  And sure enough, despite a steady weight gain throughout this process, my drug dose has stayed the same.  Not that I am complaining.  Well, not about the unchanged drug dose at any rate.

The weight gain, however, that is an entirely different matter.  I have averaged a gain of two kilos per cycle.  If this carries on I shall have put on twelve kilos by the end.  Or nearly two stone.  To put it another way, I shall be the size of a substantial dwelling.  Think ship in full sail.  Think barrage balloon.  Think beached whale.  I was not exactly thin at the start of this.  The ‘comfy’ clothes I bought in preparation are no longer quite so comfy.  That post chemo diet is beginning to look mighty attractive.  Incidentally, I know there is little I can do about the weight gain.  It is beyond my control.  I am subject to appetite increasing drugs, food fads and altered taste buds which make the whole eating experience a real roller coaster.  It is something I am resigned to.  But I do not like it.

This is most unpleasant aspect of my visits with The Doc.  This time we shared greetings from mutual friends, passed round photos of grandchildren and cracked jokes.  We also got onto the serious business.  He is pleased with my progress though still cringes with each side effect I describe and apologises profusely.  He is thinking that post chemo, Anastrozole might not be the best option for me as I have been struggling with joint pain in this latest cycle.  Of all the aromatase inhibitors, this one is the worst for joint pain so he is thinking that Letrozole might be more appropriate.  And thanks to a family history of osteoporosis he might bung in a bit of Vitamin D and Calcium too.  This is all good.  Ideally I should avoid all of them but we both agreed that dying of breast cancer would be a far worse option so we would stick with the drugs!

After a couple of phonecalls he decided that the appointments that have finally arrived for the patch testing clinic (to screen me for allergies) need to be delayed until at least four weeks after my last chemo.  I must confess to being relieved by this.  The current dates are for the week commencing the 3rd October which is only 8 days after my final treatment.  The thought of sitting in a hospital waiting room for three days that week was not appealing.

So that was that.  I am cleared for the penultimate session.  Goody.

Vist No.4

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Today is always an odd day.  It is the day I feel most well.  The day, if any, that I bounce out of bed with something of a spring in my step.  So to waste it sitting in a hospital Outpatient Department always feels very wrong.  That I am seeing The Doc is some compensation.

I had my usual vampiric experience which thankfully is still going relatively well.  Today I discovered that as a chemo patient I can jump the queue.  Well, hurrah!  The chemo unit has its own exclusive vampire but they are only available during the morning.  In a room that is little more than a cupboard.  Without windows, appropriately enough.  Given that my appointment was during the afternoon, I had to attend the main phlebotomy area.  Here, there is a numbered ticket system.  I took a ticket, number 36.  I glanced at the display which read number 20 and inwardly groaned.  At that moment an official person (possibly a vampire in disguise, it was difficult to tell) noticed my bright yellow lab form with urgent stamped all over it in red.  You shouldn’t be waiting, she said.  Really?  I answered.  Go straight through, she commanded.  I scurried along the corridor in reply.

Thanks to the lab within the chemo unit, my blood results were ready by the time I made it into The Doc’s room.  I had been worried about them as my pesky neutrophils seemed to be falling off a cliff.  Last month they measured 1.5 having dropped from 2.32 at the start of cycle one.  I had expected this drop would continue and knew that should they get as low as 1.0 my treatment would be delayed.  Thankfully (and somewhat bizarrely) my count has shot up to over 2 again so delays are off the agenda.

The Doc & I talked veins a fair bit.  Mine are hanging in there.  They do cause me concern.  The Stuff (also called hirudoid cream) prescribed last time has helped.  As has all the massage, the exercises and the heat pad.  The cream my complementary therapy team mixed for me has been pressed into service many times a day.  This is a mix of 120g aqueous cream with 12 drops of both black pepper and juniper essential oils.  I have no idea if it works but it does remind me to massage my arm using upward sweeps of my hand and small circular movements with my thumb along all the sore veins which is apparently the thing to do.  All this seems to be keeping them just about in working order.  In other circumstances I would  have requested a PICC line at the start of treatment.  But my circumstances are such that I am allergic to all the dressings generally used with PICC lines.  The Doc is keen to keep going with peripheral access given my allergies.  I know things will get worse but hopefully they will not grind to a halt.  Time will tell.

I left The Doc with a lipstick mark on his cheek and headed off to finalise my preparations for my fourth date with the poison.

Crowned with Cheerfulness

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Everyone loves a competition, right?  Especially if you do not have to do anything other than be nominated.  Even more especially if you go on to be one of the winners.  Oh yes indeedy.  I am a winner!  Thanks to the lovely people at Cheerfully Given and one of my fabulous Facebook friends.  All I had to do was look winsome (or was it sassy?) with my bald pate and loud lippy in an attempt to perfect the I-may-be-having-chemo-but-really-I-look-fine look.  And I am thrilled to the tips of my red painted tippy toes.

The competition slash give-away was organised on Cheerfully Given’s Facebook page.  Every month they run Cheer a Chum and ask for nominations ‘to bless some of your dear chums with a thoughtful gift‘.  I had a choice of three gifts to choose from but, despite my metal allergies, opted for the above Victor’s Crown made by the very talented (and as it turns out, local!) Bloom Jewellery.  It is a black leather cord bracelet with a tiny sterling silver crown threaded onto it.  Inspired by Isaiah 35:10, it comes with the bible verse printed out reading:

The people the Lord has rescued will come back singing as they enter Zion.  Happiness will be a crown they will always wear.  They will shout because all sorrows and worries will be gone far away.

I love this.  I do not believe it is a promise that the Lord, or King Jesus (see what I did there?  Another crown reference), will rescue me, or any of us, in a manner of our choosing.  I do not see it necessarily as a promise of healing.  I see it as a promise that ultimately, in the words of the lovely Julian, ‘All shall be well’.  Or in the words of the equally lovely Teresa, ‘God alone suffices’.  Whether Zion of the bible verse is here on earth or with King Jesus in Heaven, I do not know.  Either way, Happiness is a crown I shall choose to wear daily.  And my beautiful bracelet will be the perfect reminder of that.  Instead of wearing it, I shall dangle it from my bedroom mirror where I will see it on rising.

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The only time it will appear on my wrist!

Still sneezing …

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Ok, so this cold has seriously outstayed its welcome.  By Wednesday I had decided enough was enough: a weekend of leading up to it and then two days of snot surely meant I could be certain I was on the mend?  So I carried on with all the plans I had made, secure in the knowledge that I was on The Road To Recovery.  Shame no one told my cold that.

I woke Thursday morning feeling worse than ever.  Ironically I had an appointment with my GP.  All round the waiting room there are posters declaring Death to All who WASTE an Appointment for a Cold!  Or something along those lines.  I fluctuated between feeling I should have a bell and shout ‘Unclean, unclean!’ and holding up a sign promising I was not there about my cold.  Given the wide berth around me, my fellow Waiting Room dwellers would have preferred the former.  As it was, on entering her room, the first thing I greeted my GP with was not, ‘Hello,’ but ‘I’vegotacoldbutI’mnothereaboutthat!!’ We just needed to touch base prior the chemo rollercoaster begins.  She was lovely.

After that,  I went to bed in the hope of tricking this slimy virus into believing I am recovered.  You see, today, I should have had a whole day of shopping and champagne and sisterly loveliness.  We have had it planned for ages.  And I cannot blame the cancer for raining on this parade.  Well, I probably could if I tried hard enough but it would be a bit tortuous.

As it was, I still went.  And it was still a day of sisterly loveliness.  The Captain drove me over.  She wrapped in a duvet and snuggled me down on the sofa with mugs of green tea steaming beside me.  We still shopped but it was more of an online experience.  We squeezed in a brief excursion for paracetamol, cough stuff and throat sweets and managed to come home with a cardi too.  We are very efficient shoppers.

We continued with our journey to Oopnorthshire and I am now languishing in the ancestral home having maternal love poured upon me.  Vicks Vapour Rub has already been mentioned but I think I have fended it off for now.

The joy of rolling

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In days gone by, rolling over in bed was something my breasts and I thought little about.  They were pretty mobile and independently minded so I left them to their own devices.  I did have the occasional breast clap moment beloved of Miranda but largely their shenanigans did not disturb me.  Apart from during my midwifery training when I had a week working with a breast feeding counsellor.  This clearly worked its way deep into my subconscious and one night I dreamt that I was personally responsible for feeding thirty newborn babes.  In order to do this, I had responded in the only appropriate way and grown a third breast.  Alongside my already ample bosom, this addition required a bra to be constructed by a friend who worked in the scaffolding industry.  It was an exhausting dream.  I tossed and turned for its duration.  And every side to side roll necessitated that I pick up my enormous bangers, including the imaginary third, and lift them individually over to the side I was rolling onto.  This happened a lot.  And each time I walloped my arms down onto the sleeping form of the Captain.  Strangely, he did not tolerate this for over long and woke me.  I cannot think why.

My leftover right breast is still as mobile as ever but my new shoubsicle is in the Ain’t Budging An Inch stage of its development.  I am not sure how much movement it will ever have but currently it sits proudly on my chest and.  does.  not.  move.  It is not alone.  I have not exactly been partaking of gymnastics of late.  Although I am very proud to announce that after 27 years of marriage, the Captain and I are still being experimental in the bedroom department.  We had to swap sides in the bed as my bedside table is on my left usually and therefore currently out of reach.  Besides the surgical scars on my back, on my chest and under my arm, I also have blisters healing on my back from a nasty allergic reaction in the first 24 hours following my operation.  All of this has meant that I have been sleeping, or attempting to, flat on my back, well padded and not moving.  It has all been hampered by my difficulty finding the right analgesic combo and this prompted such posts as this and this.  However, thanks to suggestions from the Serious Delinquent and happy compliance from Surgical Spice and I am now about to get moving following my second good night in a row.  If it did not sound so kinky, I would tell you that I love my Voltarol suppositories.  Oops.

Moving on.  So good is my pain relief now, that I actually lay on my right side last night.  And it was marvellous.  So good that I am now planning a trip to a coffee shop.  And wailing will not be involved!

Wailing

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Today I disgraced myself.  I suspect this whole recovery is going to be riddled with days like today.  It has already been overlong.  The wailing began around 1am.  Or was it 2am?  Or 3am?  Actually it could have been any hour during the very very long night because I was awake for them all.  True I did catch a few zeds in between but they were few, fleeting and ultimately unsatisfying.  My wailing woke the Captain.  He was lovely.  Tender, kind and even uncomplaining.  Despite knowing that my wailing would give him a crap day at work today.

My wailing was not confined to home either.  I had a day trip organised.  Having not been seen by any medical staff since Saturday, I had an appointment with Surgical Spice to review my wounds.  Serious Delinquent had volunteered for taxi duties which gave my Mum both a break from me and the enormous relief of knowing she did not have to negotiate the city traffic.  Visiting hospital outpatient clinics is something she did far too much of not very long ago during my Dad’s final illness.  I am grateful she did not have to do it with me.  No sooner had I seat belted myself into the car and waved a beaming farewell to my Mum, than the wailing recommenced.

The journey and some seriously delinquent loveliness allowed me to pull myself together by the time we arrived.  Obviously we were over early as per, but that gave us just enough time for a rather nice Costa coffee.  Been an age since I had one of those.  At that point, I thought there was an outside chance the wailing was done.  Ha.

At the appointed time we trotted through to see Surgical Spice.  I was positioned on a couch behind a curtain, stripped to waist (this is becoming an almost Pavlovian response to this woman which could be REALLY embarrassing should we ever meet socially) and the inspection began.

‘How are you?’ she asked.  Such a bad move on her part.  More wailing on mine.  Still, the extra moisture helped loosen the dressings so that was a plus.  The upshot is everything is healing well.  Needles were shoved into unspeakable places to draw off fluid and further dressings were applied.  A referral has been made to an allergy expert – hurrah!  And finally, she prescribed me some different analgesia which should help with the sleeping.  The lack of which is the main cause of the wailing.  I came away with extra dressings, a new bra and more appointments than you can shake a stick at.

The rest of day has seen me fit for nothing.  Ironically, too tired to sleep I have just lain spaced out on the bed with Alan Bennett’s dulcet tones drifting into my ear as he reads The Uncommon Reader to me.  Not a bad way to pass the time, all things considered.

The Ladykillers

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Until I met the Captain, I was unaware of the Ealing Comedies.  Thirty years later and I still only have a rudimentary knowledge.  My ability to avoid education is startling.  What I have gleaned has been largely picked up osmotically through living with a man who loves these films.  The Ladykillers is his absolutely favourite, with the female lead becoming affectionately known as Mrs Lopsided, more due to structural subsidence in her house than to any breast disparity.  I think.  The day we were given the news of my breast cancer and impending mastectomy, the Captain sat in the consulting room with ‘she’ll become my very own Mrs Lopsided’ running through his head.  This was quickly followed with ‘too soon to make this joke out loud??’  He need not have worried.  Ten minutes later I cracked it for him.

Maybe I should be a tad concerned with his vision of me though?  Six years ago, before we knew anything of metal allergies, an accident necessitated the rebuilding of my face.  Much metal was involved.  During that consultation the Captain beamed delightedly, ‘Seven of Nine‘ he sighed.  From slightly scary borg gorgeousness to outdated OAP with starchy moral code.  Oh dear.

Be that as it may, I am now out and proud.  My very own ladykiller singular has been removed.  My new shoubsicle is getting more diminutive by the day as the swelling goes down while my original right chesticle is continuing its headlong plummet south as gravity takes its toll.  With more surgery in the planning to check its fall, I may never be able to achieve my ambition of tucking my boobs into my knickers in the winter for added warmth but I may yet have a perky, if patchwork, rack in my sixties.  Something Mrs Lopsided would be secretly proud of.

Itchy Scratchy …

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Growing up in my family, you were not allowed to have allergies.  They were simply forbidden.  If any of us showed any signs of them, they were dismissed, ‘Don’t be silly darling’; ignored, ‘No, nothing there at all’; or forgotten about ‘Really?  Did that really happen last time?  Surely not.’  Every time I had a cold, my mother would slather my chest in Vicks Vapour Rub and wipe the remnants under my nose for good measure prior to tucking me up for the night.  Every morning that followed, I would present her with the red angry chest rash and crimson stripe across my top lip:

‘Goodness darling!  How strange this hasn’t happened before?’

Sure enough, next time I had a cold, exactly the same routine would be followed with the addition in later years of me claiming allergies.  Not that it did me much good.  Fortunately, we were all fairly robust and my particular brand of allergies are generally only a problem in hospitals.  Which I had the good sense to mostly avoid as a child.  And they have got steadily worse as I have aged.  Which is annoying.  And I appear to have lost all childhood sense too.

Since I reacted to the dressing used for the Sentinel Node Biopsy, my underarm skin is very sore.  I have also had problems with the dressing used when Surgical Spice drained my seroma.  Both these dressing were ones I used to be ok with.  I now do not know what to suggest.  One of my very clever medical friends has suggested I ask for a referral to an allergy expert and/or a tissue viability nurse as the All Singing All Dancing Breast Unit will have access to both of these.  They are bound to know a LOT more than me and may just be able to suggest something.  Here’s hoping they can do in time for Monday!  Nothing like cutting it fine, is there?