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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Say thank you nicely

thank-you-hospital

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.

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?

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