Bit Knackered

sleep

Today is my first day of not having chemo every three weeks since early June and I can announce that this returning to normal malarkey is exhausting.  I have been trying to increase my daily steps and most days this week have managed over 2000 which, believe me, has taken effort.  It is a vast increase on my average for the past few months, I can tell you.

Yesterday I had a long standing date with the theatre to see an amazing production of King Lear.  It is my favourite play.  I try to see it whenever I can.  I can now bore for hours just on the productions I have seen.  And my knowledge has gone way beyond nerdy.  It is less a case of ‘Excuse me, I think your inner geek is showing’ and more like ‘Oh my, was that your screamingly flamboyant geek streaking across the lawn there?’  Yesterday was right up there with the best of them made all the more special because being there felt hard won.

All this excitement has left me utterly spent.  Even my fingers are aching as I type this.  Tomorrow I shall return with news of hospital appointments, drug updates and scan results.  Bet you cannot wait.

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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?

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

Only the Lonely

lonely

In essence, I am an extrovert.  This is hardly the revelation of the century.  I would clarify it by saying I am an introverted extrovert.  If such a thing exists.  By this I mean, I enjoy people.  I love company.  I gain energy from being with people but I do not much like being the centre of attention.  I am far happier organising someone else’s birthday party than having one myself, for example.  The Captain is my polar opposite.  He is a loner.  That we muddle along so well is testament to opposites attracting.  His idea of hell is endless time with people.  Mine is endless time alone.  And therein in lies my problem.

One of the unexpected side effects I have struggled most with is the inherent loneliness that comes with chemotherapy.  Like most people, I am finding a pattern to each cycle.  The first week leaves me feeling ill in pretty much every way imaginable.  There are times when my arms ache so much I cannot hold the telephone for long.  My concentration span resembles that of a goldfish with ADHD and I fall asleep at the drop of a hat.  But this passes.  The second week I still struggle with exhaustion but am able to do more.  However, this co-incides with me being unable to go places due to my risk of infection.  And having seen my blood results, this is getting progressively worse.  So I am housebound much of the time.  I can receive visitors but not go places like coffee shops or cinemas.  Finally my last week arrives, the celebrated good week, when I try to do at least one lovely thing.  My lovely thing or things have to vie for space among the minimum of two (sometimes four) trips to the hospital that also occur during this time.  And then it all begins again.

This pattern means there is a danger I can go for nearly three weeks without seeing a non hospital related person.  Apart from the Captain.  But if he attempted to be my one man entertainment centre twenty four hours a day, I think we might kill each other.  As mentioned before, FaceTime or Skype video calls have been my salvation.  At least this way I get to interact with someone.  And thank the Lord for social media.  But I do miss real flesh and blood people.

As I keep telling myself, this is only for a season.  It is finite.  It shall pass.  I am half way through.  There are times though, there are times.

‘Twas the night before chemo

Hope is an IV

I think I am prepared.  In a How Do You Prepare For The Unknown sort of way.  My levels of whelm are in balance: I am neither overwhelmed nor underwhelmed.  So therefore I must be in a state of whelm.  No promises for a total absence of anxiety tomorrow but right now I feel calm.  Peaceful even.  This is good.

I have packed a large handbag to take with me for entertainment purposes.  It contains: sweets to suck in case of instantly yacky tasting mouth; 1.5 litres of water, half infused (basil, cucumber & lemon since you asked) and half plain; selection of non-tea tea bags, green, mint, ginger; crossword book; earbuds for iPhone (just updated listening matter); lip balm, gin & tonic flavoured, obviously; book; tissues.  I am sure there are things I have forgotten.  But as luck would have it, I will get five more goes at packing the perfect chemo bag.

Tomorrow morning, then, me, the Captain, and my bag will tootle our merry way over to the Chemo Unit for 9:30am.  This means I will have to set an alarm.  I am bad at sleeping.  In general that is, but perhaps unsurprisingly particularly at the moment I am bad at sleeping.  And the best sleep I get is invariably the early morning.  Now that we are actually here, I do not feel especially anxious while awake.  If one of you could just let my subconscious know that, I would be grateful.  Perhaps it is time to dwell once more on Teresa d’Avila:

‘Let nothing disturb you; nothing dismay you;

all things are passing; God never changes.

Patient endurance attains all that it strives for;

those who have God find they lack nothing.

God alone suffices.’

Last minute busyness

new term

Blimey, it is just like the chaos surrounding the start of a new term.  At a new school.  Only with more of the dread.  And less of the excitement.  I have two and a half days to go until I descend into the Wacky World of Chemo where mind altering substances are given as standard and toxic concoctions are positively encouraged.  But until then, I am racing around trying to Get Everything Done.  My reasons for this are two fold.

First, I am not sure how all this poison is going to affect me.  I am hoping to be one of the luckier ones who carry on a seemingly near ordinary life.  However, I feel I should prepare in case I am instead pole axed by the whole business.  So, I have completed all the birthday and anniversary cards for the month of June and they are lined up in date order near the door ready for posting.  Presents for aforementioned recipients are likewise organised and in the process of being delivered.  Do not be too impressed with this, I am bound to have forgotten at least one individual, mis-directed a card to another and invented an entirely wrong anniversary for someone else.  While in the writing zone, I have been compiling lists galore.  There are lists of my daily meds in case chemo brain robs me of the ability to remember what I take when; lists of recipes for juices; lists of tips for coping with chemo; lists of emergency telephone numbers; lists, lists, lists.

In a bid to maximise my health, I have taken up juicing again.  Shopping for my 500 a day has become an almost daily occurrence.  I have been drinking avocado, cucumber, carrot, apple, pineapple, spinach, kale, lime, ginger and all manner of other things.  To increase my fluid intake, I have taken to using a fruit infuser which I love.  My current favourite is strawberry and pomegranate but who knows how long that will last?  Probably until the pomegranate is used up.  Consuming an average of two litres a day, I am already pretty good at this whole drinking malarkey.  But as my body is used to that and we are advised to drink plenty to plump up veins I figured going for three to four litres would be no bad thing.  Post chemo it will help with flushing the toxins out.  Apart from all the time I spend weeing, I am not finding it difficult.

While thinking of diet, I decided to investigate the options for supplements.  Well, heavens to Betsy!  Would you ever believe the number of suggestions there are out there in Internet Land?  It is terrifying and bewildering and more than a little confusing.  Having talked to a friend, done some research and then consulted The Doc, I have decided to go with a cocktail of supplements designed to support adrenal function and therefore increase energy.  Thanks to years of stress, I already struggle with exhaustion much of the time and would like to do what I can to conserve my paltry energy stores.  However, I am well aware that this may all be a load of baloney, but it seems worth a go.  And I am all for the placebo effect.

All this eating requires diligent mouth care.  Chemo targets rapidly growing and dividing cells first, including healthy ones.  Mouths are basically a mass of such cells therefore some form of soreness/yackness (trust me, that is a word.  I deem it so) is likely.  So today, while shopping for the 500 portions of fruit and veg, I went in search of an extra soft tooth brush head for my electric toothbrush.  Not as easy as you might think.  I have a child’s toothbrush in my hospital bag (packed today in case of emergency admissions for sepsis) but wanted another for home use.  I searched our local town and finally found perfection: extra soft, pack of four, on offer.  What more could I ask?  And for additional coolness, each one is decorated with a Power Ranger!  How epic is that?

As I said at the start of this post, I have two reasons for all this busyness.  The second is this: the busier I am, the less I think about the bad stuff and the more prepared I am.  The more prepared I am, the more in control I feel.  I realise this is all illusory but I do not have time to analyse that.  I am way too busy!

Timing

help

Every year the Captain and I look at each other after Christmas, assess the damage and embark on some form of weight loss campaign.  We have been doing it for nearly the whole of our marriage.  Over the years it has got harder, but each Spring we have lost an average of a stone and a half each.  Consequently my summer wardrobe is generally slightly smaller than my winter one.

This year, the weekend of our annual appraisal was followed by my summons to the Recall Clinic and so on and so forth.  Strangely, this did not affect the diet well.  Initially I did not eat but I have more than made up for that since.  And despite having a kilo of me lopped off in surgery I am exactly the same weight now that I was at Christmas.

This has meant buying almost an entire summer wardrobe.  Not only do I need clothes that fit me now, I also need clothes that are ‘comfy’ as I am assured that most people put on weight during breast cancer chemo.  And then, of course, there will be the difficulty in shedding the excess timber thanks to the delights of hormone therapy.  Lovely.  I am not looking forward to the post chemo diet!

Pre-chemo chat

nurse discomfort

Today has loomed large on my calendar for some time.  For some time, that is, in the weird and wacky elasticky time conundrum that has clouded my head since cancer came to call.  In the normal world, I think I have only had this appointment for an unbelievable two and half weeks.  In my cancer infested world that two and half weeks is more like several months.  Time has become decidedly odd.  It is not my friend.  Anyway.  The appointment in question was my first date on the chemo unit.  I got to turn up, be shown around and have a ‘little chat’ with one of the nurses.  Note to self: do not use phrases like ‘little chat’ in connection with major life incidents.  Ever.

The unit is unexciting.  It consists of several individual bays mainly with large chairs although one or two had beds.  There is a kitchen for our use and I was encouraged to bring in drinks or snacks/food in with me.  Before I can have any chemo, I have to have blood taken each time.  This needs to happen 24 – 48 hours beforehand so a double trip to the hospital is in order.  On the upside, they offer two for one car parking, or buy one get one free.  Not as in parking a second car for free.  Rather, the second trip is the freebie.  So the Captain and I will not be travelling in convoy.

Once the bloods are done, the drugs are made up and the cocktail will be administered via a peripheral line.  Hopefully.  Historically I have not had the best of veins.  They assure me they will be fine.  Some units use various sorts of permanent access lines (PICC / Hickman) but here, they stick to the more usual cannula unless there are problems.  The list of side effects was gone through in some detail, and a folder full of information was handed over which I will duly digest at some point.  It is very sobering hearing all the gruesome possibilities.  One could even say that it does not look like it is going to be a barrel load of fun.  I found myself zoning out at various points.  I think sitting in the unit, hearing all the horrific possibilities, made me want to absent myself anyway I could.  I do not think I missed much.  All of it has been given to me in written form anyway.  Just in case.  One might think they had come across this issue before.

A day of FEC-ing contrasts

IMG_4957

My alarm went off this morning at 5am.  Madness, I tell you, madness!  But last night we got confirmation that the balloon trip was on so fifteen minutes after the first screech of the alarm, we were on the road and heading north into the Staffordshire countryside.  It had been a crisp clear night and the temperature was still registering zero.  A delicate orange pink sky opened up before us as the sun rose and we drove through mist lazily rising off the fields.  In short, the day was perfect.

Getting into the balloon basket was interesting, given that I still cannot use my arm to haul myself around with, and the pilot’s warning of one in three landings resulting in a tipped over basket did make me question my sanity still further.  But all was well.  In fact, all was breathtakingly beautiful.  We could see miles in every direction.  Such a delight to start the day that way.

Moving on to my appointment with The Doc: it was as I expected.  Chemo has been recommended.  I will have six cycles, at three weekly intervals, of a combination of drugs known as FEC (5 Fluorouracil, Epirubicin, Cyclophosphamide).  This begins on the 9th June.  Which means it should all be over by October.  Until then, I shall sit in my chair and say ‘FEC off’ a lot.  In fact, you may call me Father Jack.  Which of course makes Andy my very own Mrs Doyle: