Hearing the Fat Lady Sing!

last-chemo

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.

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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:

 Screen Shot 2016-09-01 at 19.37.25

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?

Napping

Napping

It was inevitable that it would come to this.  That my back means sitting is more problematic has only meant I have given in sooner.  I am now incapable of managing a day without some sort of nap.  My excuse is that it is physio orders.  You see, lying side to side is better than sitting.  Lying on my stomach would be even better but that is unacceptable in the breast department.  Would you believe I still have bruises?  Rude.  So side to side it is.  And of course I fall asleep.

I would like to say I awake refreshed.  But I do not.  The dark shadows under my eyes remain unchanged and I have no more spring in my step than before.  It is all rather irritating.  Especially falling asleep when not wanting to.  I intended to watch Murray’s game yesterday.  I made it to the start of the third set and two hours later the Captain found me dead to the world with the BBC still streaming through my laptop and my glasses somewhat skewed across my face while I drooled and snored in oblivion.

The good news is my back is much improved.  I have a great deal more movement and the exercises are doing their job.  It is all I can do to manage the bare minimum but that is currently sufficing.  My veins are more of a worry.  On Saturday my arm swelled and several veins were clearly demarcated on the back of my hand and arm.  Phlebitis was a possibility but thankfully all is calm again.  They are very sore and the burning out process is clearly in progress.  I really need to keep this arm going as having a PICC line is not an option thanks to my stupid allergies.  Using my left arm is a bit like playing the lymphoedema version of Russian roulette so I would really rather not.  Because I have only had my sentinel lymph nodes removed my risk of developing lymphoedema is reduced from up to 53% to up to 17%.  Or a 1 in 6 chance.  The same odds as Russian roulette.  So obviously I am keen to avoid that.  Anything that increases the pressure or pierces the skin on that arm increases that risk.  As a result, my right arm simply has to keep going.  It has to.

Four Down, Two to Go

Poison 6

My date with the poison always seems to steal upon me in a rush.  You could be forgiven for thinking I did not want it to happen.  Actually, for the days leading up to it I am assaulted by all manner of conflicting emotions: I do not want this treatment; I do want this treatment; I do not want to be ill again; I do want to cross off one more; I can not wait for it to be over; I am scared of it not working; I want to stop being treated; I want the reassurance of being treated.  I could go on but you get the idea.

On the upside, I am getting to know the staff at my unit well enough to call many of them by name.  They appear not to have come across the late Kate Granger’s Hello, My Name Is campaign.  As the staff do not introduce themselves and their name badges are invariably covered by aprons, it has taken some detective work to sort them out.  However, it IS nice being able to joke around with them by name.  And they are remembering me too.  The loon in the lippy is hard to forget, it seems!  I really want to tell them about the not introducing themselves thing and the impact such a small thing has, but I do not want it to come across as a complaint that undermines all the many good things they have done.  I know well how the NHS can handle such ‘complaints’ and am keen to avoid something that is not my intention.

Back to today.  I feel rubbish.  All the usual but just to shake me out of any kind of complacency I have excruciatingly achy knees.  I have no idea what that is all about but I currently have a hot water bottle underneath them and my vein arm heat pad on top of them.  Between these measures and the ibuprofen I have taken, I can just about cope.  I continue to drink masses in case flushing the toxins out will help.  Who knows?

The general administration was trouble free which is seriously good news.  It is no secret that I have excellent reasons for being terrified of my veins packing up.  This time, along with all the other things I have been doing, I tried drinking miso soup last night and again this morning.  I picked up the tip here and decided I had nothing to lose.  Of course, that was before I tasted it.  As I was downing it this morning, I was hoping it would make not the slightest bit of difference because it is truly disgusting.  Especially for breakfast.  However, having never been blessed in the vein department, I was honestly gobsmacked at the ease with which cannulation happened on this occasion.  I suspected the miso was having an effect as I had not peed as much following the consumption of the medium sized lake.  By the time I got to vein inspection time they were standing to attention on the back of my hand which was quite the novelty for me.  I have never been able to see them before so this was astounding.  Un-named poison nurse declared them beautiful.  I was so proud.

Now I am off to nurse my shakes, my aches and general rubbishness in front of the tele.  Until I can go to bed #wontbelong

Vist No.4

doctor

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.

Once More Unto The Doc, Dear Friends

Doctor visit

Today I went without the slap, without a head covering and without much care.  It was Just Too Hot.  My appointment was for 9 o’clock so I had rush hour traffic to contend with.  Rush hour traffic, 26 degree heat and a car with quirky air conditioning – it does not work in stationary traffic.  This is where always being early stands me in good stead.  Under normal conditions I would have been early.  In these circumstances I was on time.  You cannot know how much this pleases me.

That I am rapidly learning the clinic never runs on time is something I am untroubled by.  The Doc is a man of grace and sensitivity.  He gives time to his patients.  I have been, and will no doubt be so again, the recipient of this kindness.  Once aware of this, it is easy to plan for.  I went armed with a large book.  Last visit my book ran out.  This was a crisis of epic proportions as I was forced to watch the video.  Played on a loop is a compilation DVD of 1980s Top of the Pops.  Initially this is quite entertaining.  After a short while it is excruciating.

Today’s visit involved more blood letting.  No compliments were forthcoming but this was fair enough.  I had not made the effort.  However, my veins played ball.  Which was a huge relief.  This cycle they have been getting more and more sore.  This is not unexpected.  Chemo burns veins.  Nice.  I have been doing all I can to keep them working.  I have been rubbing them several times a day with a potion concocted for me by the aromatherapists of Complementary Therapy.  I am using a stress ball to exercise with hand squeezes.  I say stress ball, I actually mean a ball of socks.  It seems to work.  I continue to drink the equivalent of a small lake each day and increase this to a medium sized lake the day before chemo.  And I am wrapping a hot water bottle and damp tea towels around my forearm each day which in this heat is, indeed, dedication to the cause.  The Doc is prescribing me some stuff to rub on too.  I am pretty sure Stuff was its actual name.

Seeing him was, as always, a joy.  Not the reason for being there, I just always feel better having seen him.  He was very pleased with the effect from my new drugs.  Possibly not nearly as pleased as I was.  We spent most of my appointment discussing my family history as some new information has come to light.  As a result, I am being referred to the Genetic Screening Department to see whether this would be a good plan for me.  This could take some time.  But that is not a problem.  There is no rush.