Steroids, sleeplessness and snow, snow, snow

 

Snow crystals 2b

Snow crystals 2b (Photo credit: Wikipedia)

It’s the night before chemo and all through the house, not a creature is stirring… Except steroid-fuelled sleepless little ol’ me. I want to get this one over and done with. It’s the scramble to the summit and its taken what seems like a lifetime but is, of course, just 5 months. Long enough though.

Factors that might impinge on TH3 include the weather. We are obsessed with weather in the UK. We use it as a polite way to converse with people we don’t know terribly well; typically this involves bemoaning low temperatures and rain over the summer months. Occasionally we have the opportunity to remark ‘what a glorious day.’ (We don’t go beyond 24 hour time frames because chances are storms are just around the corner!) Every now and then we get the chance to say “bloody freezing innit” and coupled with that comes the opportunity to panic because we aren’t very accustomed to snow. Snow causes chaos here, our cities grind to a halt, anyone in the countryside can be cut off for weeks and when there’s particularly heavy snowfall our electricity supplies can be affected. On the bright side, snow outside the cities looks beautiful, people take to sledging and lots of fun can ensue.

Tonight, tomorrow and Saturday we’re forecast to have heavy snow. In Britain this is anything upwards of 10cm. The forecast is 10-30cm. It’s not the kind of heavy snow you get in Scandinavia, China or the Rockies but its enough to cripple our transport and utility infrastructure.  I like snow. I like walking in it, seeing it blanketing the fields and encrusting the trees with a myriad of diamond flakes. I don’t enjoy driving in it because someone crashed into me head on a few years ago. Fortunately I was only shaken and bruised but it made me very wary of what can happen when people touch their brakes coming down a hill. We’re surrounded by hills!  So the main challenges to successful completion of TH3 are:

  1. Will the volume of overnight snow prevent me getting to chemo camp – 17 miles away with three 1:5  /1:6 hills to negotiate?
  2. Will chemo camp call me in the morning because the brilliant chemo nurses are unable to get to work?
  3. Will steroids keep me awake until 6am by which point my body will be so exhausted it falls into a Snow White like slumber only to find the handsome prince couldn’t get here because he too has been thwarted by the weather/ate a drugged apple given to him by a suspect-looking crone as ‘sustenance for the journey’?

I sharpened my ice axe and have plenty of crampons at the ready but only time will tell.

English: A train blocked by snowdrifts in Sout...

English: A train blocked by snowdrifts in Southern Minnesota, USA, 1881. Deutsch: ein Zug hat sich im Schnee festgefahren, südlicher Teil Minnesotas, USA, 1881. (Photo credit: Wikipedia)

Penultimate step in the chemo climb completed

M.R.S.A. Staphylococcus aureus on Brilliance M...

M.R.S.A. Staphylococcus aureus on Brilliance MRSA Chromogenic Agar (Photo credit: Nathan Reading)

I had another long day in chemo camp today but am pleased to report number 5 out of 6 is complete and seemed to go smoothly.

My son came along with me and said he found it very informative and also enjoyed the wide-ranging chat we had.

I was branded a trouble-maker as I noticed the MRSA swab pack I’d been given, to check if my suppressed immunity has made me and the other camp interns carriers of the hospital super-bug, was two months beyond its expiry date.  Apparently these kits had only been delivered in the last fortnight.

When the department assistant phoned microbiology she was told to dispose of the out of date kits, two full boxes, and throw away the swabs all today’s patients had already taken. They’ll need to be done again. I’m glad I read the packet before doing mine! This attention to detail comes from developing a beady eye for supermarket produce that’s been subject to poor stock control.

I’m now insomniac beetroot woman once again, high on the dreaded steroids and full of super toxic chemicals.  I did discuss whether I could be a future Bane in the Batman franchise with my son but he doesn’t think I suit the bad-guy character

This evening one of my best friends visited and it was just the tonic required after 5 hours of chemo so tomorrow I’ll pick up on my heavenly graces theme once again with a post about charity

 

 

 

 

 

 

 

 

 

 

 

 

 

 

No matter how tall the mountain, it cannot block out the sun.

No matter how tall the mountain, it cannot block out the sun.

No matter how tall the mountain, it cannot block out the sun.

I’m told this is a Chinese Proverb and its very appropriate for me this week.  My body seems to be facing a few challenges following last week’s treatment.  Temperature regulation has gone out the window.

Yesterday I had cause to phone the out-of-hours chemo support number thrice.  The first time no-one answered so I re-dialled and eventually my call was picked up. The person at the other end was very pleasant but small alarm bells started to ring when she didn’t ask my name, my hospital number, what treatment regime I was on or when my last infusion took place.  I was advised to keep monitoring, take no pain-killers and call again at 8.30am if things hadn’t resolved. Dutifully I monitored all day, decided it wasn’t critical and wondered how on earth my temperature could be fluctuating so much over relatively short periods of time. Liver – are you causing this chaos?

The second time I called my temperature was 0.1 degree below the ‘head straight to Accident and Emergency’ level and I confess I was feeling a little warm.  No-one suitably qualified could take my call so they’d call back.  45 minutes later a very helpful person returned my call, said she thought we’d need to check my blood and suggested because her hospital is almost 2 hours away the best option would be to call my nearest hospital and check they have an out-of-hours haematology service.  Call her back if I had no luck, she’d book me into their unit but felt given the time and distance involved it would be better to attend my nearest centre.  I agreed.

I called my nearest hospital, asked for the relevant department and was then transferred to four different departments none of whom seemed able to help.  Eventually haematology gave me a telephone number ….  the number I called at the outset of my ‘please can someone advise me’ quest.  In the middle of the night I’d been re-directed to the hospital two hours away and at that point it dawned on me I have a new career in acting whenever I’d like it.  I’d entered the realms of a ‘Carry On‘ film and the only thing to do was laugh.

Fortunately alongside the ability to laugh at bizarre situations, I’m blessed with common sense.   I took my temperature again, found it had dropped by 0.2 degrees – possibly the icy chill coming from the less gracious parts of my psyche – and decided critical I wasn’t.  I’d keep monitoring and head straight to A&E if necessary because turning up in person means action would happen.  In Britain it isn’t the done thing to have a raspberry-coloured woman dressed only in her night-clothes passed out on the floor. Night-clothes in a public place are a terrible faux pas.

So back to bed I went but unfortunately the whole situation caused a lot of stress for Zub. He isn’t good with medical malarkey at the best of times; if he thinks something is serious and believes due care and attention is missing he gets annoyed.  By the end of my phone calls he was probably hotter than I was, he certainly had more of a rosy glow.

But such is life.  It pays to be able to take care of oneself, seek to understand as much as possible about the situations we find ourselves facing, their upsides and their consequences.  It’s always possible the person answering the phone won’t be fully equipped to address our questions or provide accurate advice. It’s not their fault it’s just the way things are sometimes.   As I was seeing the Oncologist today I prepared to grill him intensely about my symptoms because he is practical and straightforward. A precise answer without hmms and mmms is I all I needed.

  • 38 degrees is the magic number – temperature above that, off to A&E.
  • 37.5 – 38 degrees and feeling unwell – phone the help line (oh no, do I have to?)
  • 37.5 – 38 and feeling OK – just monitor.
  • Normal temperature and feeling unwell – phone the help line (OK, if it happens I’ll give it another go.)

It seems my dancing temperature is likely to be a reaction to last week’s treatment but the onset of neutropenia can’t be completely ruled out.   I’m working on the basis the former is more likely than the latter and the mind has restorative powers we don’t fully understand so I’m giving it the opportunity aid my body in regaining its composure over the next few days.

No matter how tall the mountain it cannot block out the sun. Every day, including those written for a Carry-On film,  is 24 hours of progress.

 

It’s all gone Pete Tong!

What can I say?

I got up very early today and started taking my super high dose of dexamethasone in preparation for Taxotere and Herceptin (TH1) tomorrow.  I made the 45 minute journey through floods to get my bloods done.  I asked the phlebotomist to take a rather large quantity of extra blood samples so I may participate in the Imperial Cancer Research  BOCS study where I hope to contribute to the body of knowledge and the race for a cure for breast and ovarian cancers.  I also dropped by to see the trials nurse at chemo camp where I formally completed my paperwork for the Persephone trial, another attempt to improve the body of knowledge and possibly make this all just a bit more bearable for future generations.

For the past few weeks even if it’s made me gag I’ve eaten as balanced a diet as possible to ensure my blood, especially the white blood count and neutrophils, stayed above the cut-off point for chemo to take place.  I’ve approached saintliness and that’s no mean feat when undergoing this treatment.  Don’t get me wrong, I do not enjoy it one iota but I work darned hard to make sure I do everything I possibly can to keep the chemo on track.

Today it’s all gone Pete Tong. Wrong, wrong, wrong.

Due to an admin error it’s all gone Pete Tong!

All I can say is Fec. A great big Fec with extra Fec-ing Fecs on top.  It’s all gone Pete Tong and what’s more it’s absolutely nothing to do with me, my somewhat strange, deranged and deviant body or my incredibly important yet out-of-a-stone only blood donations.

It’s almost impossible to believe but it’s all gone Pete Tong because for some reason beknown exclusively to the admin powers that be, my blood test results were not treated as urgent today.  Instead they went in to the ‘we’ll get round to them at some stage’ routine reporting pile.  Here come the dominoes….. as my blood test results weren’t passed to chemo camp pharmacy in sufficient time, my Herceptin prescription wasn’t written up for tomorrow.  As my Herceptin wasn’t written-up, my oncologist wants to delay my treatment.  I’ve taken a whole days worth of super-strong steroids for no reason whatsoever and there’ll be no TH1 for me to look forward to in the morning. I now have to wait until Tuesday 4th December.

I tried telling myself it’s just a one week delay but the reality is it’s not that simple.  A one week delay means TH2 falls on 25th December.  Chemo camp isn’t open on Christmas day and even if it was I’m fec-ed if I’d rock up for chemo instead of spending time with my family when fully cognizant that for the rest of Christmas and New Year I’d be sore, sickly and dealing with a new set of side effects. It’s inevitable. Just as a row of dominoes creates the domino effect once the first is flicked, delaying  TH1 means TH2 will also be delayed.

I’m not a betting person but I know a dead cert when I see one and here’s the rub. TH2 will not be delayed by just one week, it’ll be delayed by just over a fortnight because a Doctor must be present when I have Taxotere and Herceptin (in case of the allergic reactions I mentioned in Ascending at Altitude http://wp.me/p2MIsj-7s  It’s Christmas, the Doctors won’t be back until January 2nd at the earliest. TH2 will be January 3rd at the very best projection. All because someone in ‘admin’ failed to note that my blood results were marked urgent at 9.30 am this morning. >:-/

It gets even better when I look ahead to 2013. All the medical people associated with my treatment journey insist that: I must not look ahead, I should take each day as it comes, I ought to stop planning and concentrate on getting through the present.  What they haven’t appreciated is that I get through the present by looking ahead, imagining how, where and with whom I’ll be enjoying my life in the months, years and decades to come.  I’m 43, I’m expecting to double that in spite of my degenerate body so I don’t intend to be confined to a 24 hour event horizon.  My mind doesn’t work well with simple achievable goals – they’re too easy, they present no challenge and to me they’re a bit of a cop-out.  My mind finds inspiration when it cogitates on objectives that look almost entirely unachievable, the kind some people might shake their head about and say “oh my God” or “that’s impossible” without giving them a second glance.   But that’s the way I’m wired up, always have been and probably always will be.

I anticipated being done with chemo on January 8th, very early into 2013.  Finishing in the first full working week of 2013 meant that when I came to re-write history, as we all do,  I could easily consign chemo and all it has brought me into the strange events of 2012 category.  I could cope with mentally fudging dates so early into the New Year thus liberating myself and considering 2013 a completely fresh start where I’m cancer-free all year and for many decades to come.  Now it looks like chemo won’t finish until the end of January, a whole 1/12 the way through 2013 and even with my hyperactive imagination I’ll find it hard to fudge a whole month out of existence.  I know the Herceptin hokey-cokey spans most of next year but I’m told it’s nowhere near as much fun as chemo so I’d consigned it to the ‘still fighting cancer minus head to toe collateral damage, keep strong and carry on’ category.

And the icing on this super sticky cake….. if my remaining chemos are delayed along the lines I anticipate above I’ll stop getting paid for the pleasure of my (until now) regular near-death experience and all the post-chemo recovery period Dr C predicts  ‘takes a while.’ The most expensive time of  year when heating bills are astronomical, food prices are rising faster than ever, I’m forced to buy a lot of my own drugs via Amazon because the health authority can’t afford them and simply filling my car with fuel for hospital trips consumes a significant chunk of our household budget.  Fec-ing fantastic. I don’t use the very, very naughty swear word but if I did, today might be a good day to use it. All because of a stupid and completely avoidable admin error. Thanks whoever you are, you’ve made my day, my month, probably my year and you’re going to have a material impact on me and my family next year too. That’s just perfect.

I’m going to have to play the Glad Game (http://wp.me/p2MIsj-aP ) full-on like a woman demonically possessed of boundless optimism, limitless forgiveness and the remainder of a 16 mg corticosteroid ‘high’, starting right now. So here’s the initial glad list:

1. I can immediately stop taking excessive corticosteroids that speed my heart, cause dizziness, swelling, migraine and turn me bright red… and restart them next Monday.

2. I won’t endure poking, prodding and battered-wife style bruising involved in numerous failed attempts to find veins for chemo tomorrow. A one week reprieve might offer my hand and wrist a few extra days to regenerate into something more veiny. Be glad bony appendages, you’re onto a winner this week.

3. I don’t have to anticipate what will happen to me during or after TH1. It’s only temporary but I’ll use the time to think other, lighter thoughts as I stay awake all night tonight thanks to aforementioned steroids.

4. I’m glad I decided that when the sky falls I want to be Bond (http://wp.me/p2MIsj-b4). Another admin-related Pete Tong incident might make my moral compass swerve violently away from cake and cocktails; procurement of a SIG P226 would become my only mission.  Screwing up my chemo schedule, my thoughts about 2013 and my pay might be a tiny inconsequence for whoever made this jolly cock-up but it has huge consequences for me and my family. I beseech you, do not do it again because you really wouldn’t like me once I’m strawberry blonde, more than slightly annoyed, armed and Bond.

I’ll play the glad game again tomorrow when I suspect my thoughts may no longer be clouded by images of incompetent administrators and semi-automatic handguns.  If I don’t post here in the next few days it’s most likely due to the fact that someone in law enforcement is reading my blog and visited me with ‘the big key’ during one of those special early morning wake-up calls.  That kind of action really would throw everything into the ‘it’s all gone Pete Tong’ category but I’m optimistic at heart and there’s room for the glad game to continue, even in the trickiest of fixes.

I already have my hypothetical list of things to be glad about including:

  • Providing my neighbours with something juicier to gossip about than the state of our weather.
  • Feelings of immense gratitude because Sky TV, higher education degree courses, food, drink and heating are all gratis when detained at Her Majesty’s pleasure.
  • My cancer treatment would carry on regardless of my incarceration.
  • I’d avoid infections as I’d be held in solitary confinement.
  • Zub could claim single occupancy council tax relief (a 75% reduction) so there’d be one less dirty great bill to worry about.

I guess the incompetent admin might not agree if I secured a SIG, developed a psychotic version of chemo brain and was unable to forgive any more errors.  But when I come to think of it there’s a tidal wave of gladness just waiting to wash over me if I were to be arrested and locked-up.  It looks like we might be significantly better off if it all went a bit Pete Tong.  Just how wrong is that?

 

 

 

Quick post before blood, I mean bed.

Regulars readers will know I’ve become obsessed with blood, or more specifically the veins that transport it.  Today I got my bloods done in advance of  FEC3. No phone call from the hospital so it’s all systems go for chemo camp tomorrow – Guantanemo Bay on dress-down day.

I also have a confession to make. I asked the phlebotomist to take blood from my ‘bad’ side.  I can’t face more collapsed veins in my ‘good’ side leading to forced installation of a central line.  So I made the phlebotomist commit a mortal phlebotomy sin. I’m really sorry if she get’s into trouble come judgement day but there’s a remote chance the vein in the elbow of my ‘good’ side will be ‘good’ tomorrow.  I need ‘good’ veins in that arm because the veins in my hand have disappeared.  I hate my veins.

Now I’m off to bed for that other pre-chemo delight, insomnia. But it’s a very clear night, I’ll be able to see a million stars and you never know, I might get abducted by aliens so it’s not all bad 😉

P.S. The diagram below is not to scale. The syringe is at least 10 times smaller than the real thing (& there are 8 of them). I’d be jolly pleased if they were filled with Balkan 176 vodka. Wishful thinking!

Credit: MacMillan Cancer Support – this makes it look simple!

What shall I do today?

Well I won’t be getting bored because its needle time again. I need to get my blood checked to find out whether I have enough neutrophils to allow FEC2 to go ahead tomorrow. My red blood cells, platelets and liver function also get checked.

It’s fortunate that I don’t have blood or needle phobias because I’d be in a permanent state of terror if I did. That said, I dread having blood taken because my veins go into hiding and when they eventually come out, they’re flimsy, thin and easily punctured. Maroon, deep purple and mauve hues don’t flatter my ghost white skin tone. And besides that, intracellular bleeding and hematoma is bloody painful. Fingers crossed for a big juicy vein this morning and a phlebotomist with flair.

As well as donating more blood samples to the vein-sucking vampires, I have to drink a lot of fluids today in preparation for tomorrow. I’d like to aid my fluid intake by having a Keith Floyd food fiesta, rustling up some mouth-watering Mediterranean munchies while working my way through a bottle of Barbaresco Minuto tu Felice. It’s not going to happen though. Alcohol is off-limits this evening and most evenings for the foreseeable future. I’ve given up almost all my vices over the past 6 months so am in danger of becoming a paragon of virtue. I say almost because I haven’t given up swearing and can’t see that happening anytime soon.

I should also confess that my halo slipped just a little this weekend. The extended Willis clan went for a delicious Indian meal with very dear friends in advance of my upcoming week of unpleasantries. We had a wonderful time and it gave us all a welcome escape from everything else we have to contend with. Mr & Mrs M, you are extraordinarily lovely people who are immensely kind to us, we appreciate your help and support very, very much. And I can’t fail to mention that the opportunity to have Indian food was especially welcomed by hungry student J, who is the only living person composed of 73% chicken tikka, 7% pilau rice and 20% water.

Armageddon

This is FEC chemotherapy. Well actually it isn’t because this is just the E bit of it, F and C come in a few extra syringes. There are lots and lots of syringes and they arrive in sealed biohazard packaging.  The chemo-nurses wear special gloves and aprons when administering these drugs, they pair-up to check the information on every syringe is exactly what’s on the patient’s drug chart and they also double-check the victim patient they’re about to push these things into is the person named on all the paperwork.  With Armageddon safely underway inside said patient, spent syringes and associated paraphernalia goes off for secure disposal.  It’s a bit like USAMRIID (http://www.usamriid.army.mil/) without the military personnel.

FEC stands for 5-fluorouracil (5-FU), epirubicin and cyclophosphamide. 5-FU is one of the oldest chemotherapy agents and has been around for over 40 years. Epirubicin (affectionately known by staff and patients as the red devil) has been in use since the early 1980’s and cyclophosphamide is a nitrogen mustard.  If you’re wondering whether nitrogen mustard is something to do with mustard gas you aren’t far off.  It’s also been around for 40-odd years, fortunately as a chemotherapeutic agent and not for widespread production of WMD’s. Each drug works in a slightly different way to interrupt cell division or induce cell death.

Info about side-effects can be found here http://www.cancernet.co.uk/chem-fec.htm.  There are some additional side-effects that don’t get published in the patient guides and your oncologist will tell you about them if you want to know. You have to ask the right questions e.g. Are there any other risks I should be aware of? Are there any side-effects that cause serious or long-term issues (and more importantly is there anything we can do about them)?  Knowledge can be a blessing and a curse. I like to know but as the saying goes ‘if you might not like the answer, don’t ask the question.’

Chemotherapy strikes fear in most people and not without good cause. Poisoning our bodies is a drastic thing to do. But the reality is that it’s the best solution currently available to us for a variety of cancers and often the only solution when dealing with particularly aggressive forms.  Hold on to the thought that oncologists aren’t Thomas Wainewright. They don’t set out to hurt, harm or poison other people.  They’re doctors and they’re trying hard to cure or treat us with the best possible tools in their toolkit.

There’s no denying some of the side-effects are crap but I can assure you dying from cancer is altogether crappier.