Militancy Matters

ink-pot

It is official.  I am much improved.  The lack of 5FU in my last cocktail has definitely seem more spring in my step, more boing in my bounce, more spark in my  plugs.  I have been suspecting things were a bit better for a couple of days but today it sort of burst out of me.  You see, I came over all militant.  That in itself is not unusual.  But today I have taken action!  Number of MPs written to?  One.  Number of hospital Chief Execs?  Two.

I have been driven from soapboxing to taking action by the Secondary, Not Second Rate Campaign run by Breast Cancer Care.  They published a report in July having surveyed nearly 1000 people and having it read it, two things struck me today.  First, 58% of those like me, diagnosed with primary breast cancer, did not know what signs and symptoms could indicate Secondary Breast Cancer, 20% thought they did but were actually wrong and only 22% knew what to look for.  This is truly shocking.  But given that 60% of hospitals are not discussing this possibility with their Primary Breast Cancer patients it is not surprising.  But it is easily remedied.  A final conversation with the Breast Care Nurses at the end of treatment, with clear information and points of access laid out for further treatment, would be all that was required.

Of course, to plan for future treatments, it is necessary to know the scale of the problem and therein lies the real issue.  Since 2013 it has been mandatory for hospitals to record data on Secondary Breast Cancer.  They have to record the numbers diagnosed and whether they previously had Primary Breast Cancer or not.  But the vast majority of hospitals in England are not doing this.  Breast Cancer Care are now naming and shaming the hospitals they know of so do look up your local: https://www.breastcancercare.org.uk/secondary  (2/3rds of the way down the page).  This information is crucial.  After all, how can you plan for a service if you do not know how many users there will be?  How can you assess the efficacy of a treatment if you do not know how many go on to develop further problems?  Of course you can not.  What happens is that disaster ensues.  And that is how the state of Secondary Breast Cancer care is at the moment.  And it is unacceptable.  This report made me angry.  Very angry.  It made me sign up to volunteer for the Secondary Not Second Rate campaign.  It made me want to educate all I know on what signs of Secondary Breast Cancer to look out for.  It made me bang on to a lot of my friends about the injustice of the situation.

But what really tipped me over the edge, what really made me incandescent, was this little film.  Take a look and let’s see if the same statistic gets you:

We are about to hit Breast Cancer Awareness month.  Pink is going to consume us.  I hate the pinkification of breast cancer.  I have said it before.  I will no doubt say it again.  But I can almost (only almost) cope with its retinal burning luminosity by consoling myself with the thought that money will be raised.  Somewhat naively, I assumed that all breast cancers gets an equal share of this.  Didn’t you?  They do not.  The tsunami of pink that engulfs us is almost entirely taken up with money for primary breast cancer.  Less than 5% goes towards Secondary Breast Cancer.  Less than 5%.

It was this that kicked me into action.  I cannot standby and allow this situation to go unchallenged.

Hearing the Fat Lady Sing!

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That is it.  Barring disasters, I.  Am.  Done.  Unfortunately, unlike the woman in the picture I am not celebrating with champagne.  Rather I am reclining on my couch.  Think Victorian lady with the vapours.  And a fuzzy head.  Both inside and out.  I am not sure the Victorians went in for fuzzy heads much but it could have been a thing.  Work with me.

My chemo unit were lovely.  They adored their gift and three members of staff came to discuss with me how they could improve their introductions.  They had no idea they were not doing this and all thought they were.  I discovered the hospital’s Chief Exec is also a big fan of the #hellomynameis campaign so hopefully I have pushed an open door.  I was seriously impressed that they wanted to talk about my experience.  And the jam definitely went down well.

The administration of this my final (did I mention that?  It was my LAST one.  I would not want you to miss that point) dose was a little tricky.  My veins really were at the end of themselves.  It took much stabbing and the unit vein expert was wheeled in to finally find one that would co-operate.  This one worked but was sluggish.  But we got there.  It is done.  Four and half hours later and we left for the last time.  I got hugs from the staff which was nice.  But what I really wanted were party poppers, fireworks, celebratory cakes, corks popping, ticker tape parades, balloons, a marching band, trumpet fanfares and humongous great bell for me to ring.  And hugs.  Not much to ask is it?! I shall blame NHS cutbacks for their absence.  Yet another reason to despise Jeremy Hunt.

One of my lovely friends works in a hospital where there is a bell in the chemo unit.  In this magical place, at the end of treatment patients get to ring it.  She said I could come and ring her bell.  But I think I am a little old.  It is a children’s hospital.  However, I think there should be a bell.  A big hum-dinger of a bell.  A huge enormous great bloody big bell.  And if I had a bell, I would let you all ring it too.  So you just know what I have been humming all day, don’t you?  Yep, that doyen of a tidy hospital, Anita Ward and her classic: You Can Ring My Bell

Not nearly cool as fellow blogger Sue Pook’s re-writing of The Stranglers’ No More Heroes with the words ‘No more chemo anymore’ but you have got to love a bit of disco.  So from here on Things Can Only Get Better.  Bear with me as it is going to take some time to return to what passes for normal around here.  Several months it would appear *Boo, Hiss* but I will get there in the end.  Hurrah!  Thank you for all your support.  It would have been unimaginably hard without you.

Home Straight

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Today I meant to take The Doc a card.  A sort of Thank You for Poisoning me card.  Only the shops do not make those.  So I have fashioned my own.  Only I forgot it.  I was giddy with the excitement of going out on my own.  Today has been the only day this cycle that I have felt well enough to do this.  What better way to celebrate my wellness than a trip to the hospital?  Hmm.

First up was my vampiric experience.  My phlebotomist was the one I encountered on one of my first trips.  Previously she had been very effusive in her praise over my appearance.  Not so much today.  You could be forgiven for thinking that chemo has taken its toll.  One thing was certain, my veins are struggling.  Blood was found but it was more than a little tricky at first.  On the whole, my blood results have been good throughout my treatment.  My white cells have wobbled at times and once came close to preventing my next dose but then bounced back of their own accord.  They are well below normal levels but generally quite acceptable for chemo levels.  My liver function tests (LFTs) have also wobbled a bit too.  I think the drugs are giving my liver a bit of a pounding.  Thankfully this amazing organ is repairing itself in time for the next assault although each time I get knocked down a little further.

Because of this, and because of the side effects during this cycle The Doc has decided to drop the 5FU from my cocktail.  I think this means for my final treatment, I will not get to mimic Father Jack anymore.

father-jack

No more shouts of ‘FEC off!’ to all and sundry.  And no more playing with my pet brick *sigh*.  ‘EC off!’ just does not quite cut it, does it?  However, the heartland of Yorkshire should welcome me to their bosom.  Not only did I spend I fair percentage of my childhood in various Yorkshire locations, not only does my Mother currently live in God’s own country, not only was my sister born under the emblem of the White Rose but I can now sit in my chair and exclaim, ‘By ‘EC as like!’ I can even do it in a passably appropriate accent.  In my heart I will always be a Lancashire lass, but for the purposes of getting through tomorrow, I claim temporary Yorkshire citizenship.

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Say thank you nicely

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I have spent much of the time between my previous bout of poisoning and this next and final one making up a thank you gift for all those working on the chemo unit.  Because I make jam for a living, a gift of jam was always the obvious choice but I wanted to somehow convey the importance of individual introductions without seeming to complain.  I do not have a problem pointing out when something is not being done correctly but I know how fragile morale is in the NHS and these people are amazing.  They work incredibly hard in less than ideal circumstances so the last thing I want to do is demoralise them further.  I want to encourage and build up.  But I also want to explain what a difference knowing the name of your nurse makes.

After much brain racking, I hit upon the idea of individual pots of jam with named labels.  I got a list of all the staff from the unit and made up labels accordingly, each one including the #hellomynameis downloadable graphics from Kate Grainger’s website I also included a condensed version of the following quote that sums up the whole thing to me – it is about connecting:

‘Introductions are about making a human connection between one human being who is suffering and vulnerable, and another human being who wishes to help.’

Dr Kate Grainger

I then made a thank you card and wrote thanking the staff for everything:

Thank you so much for all the care you have given me while delivering my chemotherapy. It has not been the best experience of my life but I have appreciated knowing that I could rely on you all to make the whole process as bearable as possible. We’ve even shared a few laughs along the way. I wanted to particularly thank those of you who took the time to introduce yourselves to me by name. As a former nurse and midwife, I know how easy it is to overlook this but as a patient I can’t begin to explain the difference it makes. I am sure you are aware of the late Dr Kate Grainger and her #hellomynameis campaign. Her experiences resonate very much with mine and I wanted to give you a thank you gift that would let you all know just how much those introductions meant to me. You are all important to me so I wanted to thank each of you by name.

Having left the NHS (God bless it!) behind me, I now work for myself and have a small (but perfectly formed!) preserve company making jam, marmalade and chutney. This year has been a bit of a disaster workwise but I thought you might enjoy the little pots my husband and I have made for you. There is one for each of you by name and should be enough for two more each if you rummage through the box. Alternatively please share them with whoever you think would appreciate them. And please, if the named ones are not to your taste, do swap them! I would hate to think someone is lumbered with chutney when really they’d prefer marmalade.

Finally, thank you once again. You are a fantastic team doing an extraordinary job under tremendous pressure. I sincerely hope I will not have to be back with you again but if I do return, I know I will be in very capable hands.

With this I enclosed some #hellomynameis literature to explain and make sense of the campaign in case it was unfamiliar to them.  I hope that I have made my point in such a way that they will feel encouraged to introduce themselves in future.

Time will tell but I guess it will not tell it to me as I am unlikely to receive objective feedback from them.  Whatever happens, I hope they enjoy the jam.  And the marmalade.  And the chutney.

To hurry or not to hurry…?

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Since my hair began to make an appearance once more, lots of people have very kindly pointed me in the direction of all manner of hair products that pretty much promise to turn me into a Rapunzel lookalike in a matter of days.  Ok, I may be exaggerating a bit there.  Maybe.

However, it did get me thinking.  And googling.  You see, I tend to believe that most things are best left to nature.  But then again if I took that approach with cancer I would be dead.  So what do I know?  Obviously my guts cannot always be relied upon.  Instead, I decided research was the way to go.

Nioxin is mentioned a lot when it comes to hair regrowth.  You can buy it easily enough and many hair salons even offer it as a post chemo treatment.  So I looked it up on Google.  I typed ‘Nioxin’ into the search field and in the drop down menu that followed ‘Nioxin ingredients toxicity’ popped up.  Obviously I clicked it.  And this was the first hit.  Alarming, isn’t it?  Especially this bit:

Please Note: Friends of the Earth, Health Care Without Harm, the Environmental Working Group and the Breast Cancer Fund have formed a coalition in an effort to convince the cosmetics industry to stop using certain chemicals in everyday consumer products, chemicals known or suspected of causing cancer, birth defects and other negative health effects. 1,4-dioxane, often called dioxane is one of these chemicals. This a byproduct of the process (ethoxylation) used to convert sodium laurel sulfate into sodium laureth sulfate. There is a concern that the sodium laureth sulfate in some Nioxin products may be contaminated with dioxane. The manufacturer neither confirms nor denies the presence of this contaminant.’

There also seem to be quite a few dermatitis type side effects listed elsewhere which, given my propensity to such things, makes it seem like a really bad idea.  I do not much like the idea of DNA changing ingredients either.  So one to give a miss to, I think.

Another major contender in the encouraging regrowth is Regaine.  I found it very difficult to track down the ingredients to this product.  And I am always suspicious when companies are not upfront about what goes into their wares.  Eventually I did find them listed and while Regaine does not contain parabens – hurrah – it does contain Butylated Hydroxytoluene (BHT).  Which you just know is going to be another nasty, don’t you?  Well, a potential nasty at any rate.  Take a read of this:

‘Long-term exposure to high doses of BHT is toxic in mice and rats, causing liver, thyroid and kidney problems and affecting lung function and blood coagulation. BHT can act as a tumour promoter in certain situations. Limited evidence suggests that high doses of BHT may mimic estrogen, the primary female sex hormone, and prevent expression of male sex hormones, resulting in adverse reproductive affects.’

Now, it is true that I am not a mouse.  Or a rat.  But I really do not like the sound of that.  Admittedly I found this quote on a website that is fairly unhelpful in listing its references so it was hard to check up on the quoted research.  However, this website lays out the case both for and against BHT as a carcinogen.  It is well referenced and clearly shows why there is controversy regarding this ingredient.  Personally, I will choose to avoid any product with BHT, or its close friend Butylated Hydroxyanisole (BHA), as I really do not want to put stuff either on my head or body that I am unsure of.

So on the whole, I think I am going down the au naturel route.  My hair will grow in its own sweet time.  It is true that the Captain has taken to calling me Stan.  As in Laurel.  He seems to think my fuzzy bits on top and lack around the sides give me a Laurel-esque look.  But if I am Laurel, that makes him the rather more rotund Hardy.  So that would be another nice mess I’ve gotten him into!

Fluffy

brillo

So far, this cycle has been harder than all the others.  I have had the return of symptoms not seen since cycle one (take a bow nausea and diarrhoea).  The fatigue has been building to almost unmanageable levels.  And the psychological shenanigans that have been going on in my head do not bear contemplating.  Much of this has been down to an emotional turbulent time that has been unavoidable, some of which I mentioned here.

The Captain has been away plying our trade at a canal festival and I have missed both him and it very much.  This particular weekend has been a highlight of our year for a long time.  It marks the beginning of the end of the season and the last time we see many of other trading friends until the following one.  I know there is always next year but I have missed this one a lot.

But in the midst of all this gloom, there is always good news.  First of all, my belovéd macbook has resurrected itself!  Five days in a large bag of rice seem to have done the trick and it is now working.  Relieved does not begin to cover it.

Most excitingly of all, however, is that I have begun to grow hair again.  This makes me feel quite smug.  Like I have really achieved something.  Why it should start now, while I am still actively receiving treatment is beyond me.  Occasionally the demons hit me and tell me it is because the chemo is not working.  However, there is no evidence that this is the case so in my more rational moments I chose not to believe it.  Especially as I really rather like it.  I am like a soft, fluffy brillo pad.  The growth is uneven.  As in some follicles have given birth to strands that are edging towards an inch in length.  But these are isolated, not patchy.  So the effect is weird.  But it does feel nice.  The wind can not exactly whistle through it yet but I have taken up with shampoo again.  A little prematurely probably, but I do not care.

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Feeding the Birds

I have a bird feeding station.  It is one of those pole affairs with bits hanging off it.  My first born bought me what became the start of it and gradually it evolved.  What am I saying?  There was nothing gradual about it.  I do not do gradual.  I am impetuous and given to whims and fancies.  So of course, on receipt of first item, I rushed out and bought a pole, other hanging bits and vast quantities of seeds, fat balls and other delicacies (mealworms, anyone?).

True to my whimmy ways, pretty soon the filling of the containers fell to the Captain.  It is not that I am bored of the birds.  I love the birds.  I just forget that in order to feed them, the containers need to contain food.  That is rather the point.  I would claim chemo brain for this oversight but we all know that it has ever been thus.  The food I bulk bought eighteen months ago, had finally run out so today marked the day that I ventured forth to buy more.

It was an exciting adventure.  But then we have long established that I do not get out much.  Today is always the day that I begin to feel human again.  It is a week since the poisoning and my body is beginning to recover.  Hurrah!  Celebrating with a trip to B&M may not be everyone’s idea of a good time but there we have it.  My octogenarian mother slung the 10kg sack of bird feed around as if it weighed nothing while I trailed behind with the 400g tub of mealworms.  I also picked up a keyboard for my iPad making this whole dead laptop scenario slightly more bearable in the short term.

Feeding the birds is something I find wholesome and nurturing.  Perhaps I have Mr Disney to thank for that.  But I have been sore in need of comfort these past few days.  I have had bad news of the cancer variety regarding both relatives and friends and it has felt grey and dismal all around.  FEC is notorious for messing with one’s head so the chemical blues will not be helping.    But I have found myself seriously despairing. Birds are motiefs I frequently return to.  I have joked about blue tits and robin redbreast here on more than one occasion.  My Mum used to call me her little sparrow.  One of my nicknames in time gone by was Big Bird (it will be my yellow feathers).   So it is perhaps not surprising that the bible verses that speak of birds resonate with me too.  Matthew 6:26 speaks of ‘the birds of the air’ that my ‘Heavenly Father feeds’ and says that I am ‘far more valuable to him they are.’   And according to Psalm 84 ‘Even the sparrow has found a home … a place near your altar’.  These all speak of love and care and nurture so it is no wonder that I find feeding the birds synonymous with God.  It is as well that God is less given to whims than me.

I know that my friends and relative are held by God’s hand.  I believe that they will soon ‘dwell in [his] house’ and be ‘ever praising’ him.   But I am so sad that this vile disease will be taking them from me.

Disaster

My MacBook has disgraced itself. Last night it got bladdered. A pint of water was tipped over it. Turns out it can’t hold its drink. It is currently lying buried in a large bag of rice in an attempt to sleep of its hangover. Things do not look good. 

Penultimate Poisoning

Poison 5

Well that took a while.  As ever, we excelled in the being early department.  It is a shame that Being Early is not a competitive sport.  Because if it were, The Captain and I would have so nailed the gold for Team GB.  My appointment was at 10am.  So obviously we strolled in at 9:30am.  And equally obviously things were not running to time.

I was called through at 10:20am and my cannula was successfully sited (hurrah!) at 10:40am using a vein on the underside of my forearm to give my previously used sore veins a rest (double hurrah!).  For the first time my nurse for the day introduced herself.  I cannot begin to explain how much of a difference this makes.  As a patient, immediately I feel more secure, safer, more able to relax.  And human.  Very much more human.  The late Dr Kate Grainger really did know a thing or two when she started the #hellomynameis campaign.  I have come up with a way of explaining this to my chemo unit in a positive manner but more of that another time.

Back to today.  My chemo eventually began around 11:30am and we finally left the unit at 15:45pm.  Marathon day.  No idea why it took so long.  But frankly it did not matter.  Feeling crap in the chemo unit versus feeling crap at home?  Obviously home wins but the delay was not so much that it impacted me.  I have become much more ‘whatever’ since cancer came to play.

The highlight of my day was having The Archers and Radio 4 retweet my contribution to the solidari-tea for domestic abuse survivors and the #FreeHelen campaign:

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Seriously.  I was giddy with excitement.  Especially when they replied!  And to think I was worried about the lack of sporting entertainment for this cycle.  The BBC have only gone and organised the trial of the century for me to listen to.

My name is Helen.  And I am an Archers addict.

Do I get my tea and biscuits now?