The Oncologist

Tomorrow I’m heading back to see the oncologist.  A quick recap: he is studious, often serious and I was told some people find him rather terse. He also came highly recommended on the basis I could cope with a scientist who holds a passion for his subject, has considerable clinical trials expertise and presents the facts in a sans-sugar-coating, say-it-as-it-is kind of way.  It’s true he wouldn’t be everyone’s cup of tea because small talk and social pleasantries aren’t his thing. I knew I could live without those but the same could not be said for a well-constructed third generation treatment regimen designed to tackle very aggressive HER2+ breast cancer.

When I was in active treatment I made it my mission to find some way to make the oncologist laugh every time I saw him.  Despite the various cancer shenanigans and associated torments I managed to retain at least a smidgen of my naturally playful, sometimes mischievous (in a harmless kind of way) spirit. So tomorrow I’ll be in his office finding another way to make the man who averts death smile and laugh because let’s face it, 12 hours a day 5 days a week managing various forms of cancer is hardly fun, even if your success rate falls in the upper quartile.

I haven’t been back to the hospital for some time now and if it weren’t for the follow-ups I’d avoid going back there at all costs.  It’s the place where my life switched from relatively stable to completely FUBAR in a matter of moments. It’s the place I associate with a tranche of memories I’d happily erase if permanent amnesia happened to be available in tablet form. It’s a place where the staff are brilliant, my treatment was excellent and as far as I know all traces of the mutant cells terrorising my body were eradicated. Unfortunately it will always be the place where cancer and me were forced to become far too familiar with one another. That acquaintance lasted much longer and caused far more damage than any of us is led to believe so I might just have to strangle the next person who says breast cancer is an easy cancer, the best kind of cancer or anything that remotely infers treatment and recovery is a walk in the park. Oops… I lost my playful spirit for a moment there.

Thankfully my oncologist chose to be an oncologist instead of an actuary, a computer programmer or an astrophysicist. For that I will be eternally grateful. For cancer I will not.

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Ascent Complete!

Ascent CompleteSnow 0 Tracy 6

Ascent Complete
Snow 0 Tracy 6

That’s it. FEC-T is over. Everest has been ascended in flip-flops and a sarong – entirely inappropriate attire but it was all I had on me at the time so I had to make the most of it.

It was snowing this morning and had snowed all night. My handsome prince was a no-show so I guess he accepted the crone’s apple!  I managed to stay awake all night thanks to dexamethasone.

Fortunately the journey to chemo camp involved traversing sparkling powder snow but at 8.30am it wasn’t too treacherous. By 1.30pm the situation had moved on.  I’m glad the journey home wasn’t later in the day as it wouldn’t have been feasible; folks had already abandoned cars in many areas.

Snow didn’t defeat me today and I’m happy about that but above all else I’m so glad the chemo part of this adventure is over. Bye-bye FEC-T hello return to normality.

The journey, however, is not yet complete.  I still have to master the descent to base camp via successful completion of the Persephone herceptin trial plus some further surgeries. I’ll make a date with Miss M (oncoplastic surgeon) and Mr Ch (gynae specialist) so they can extricate the remaining female parts of my anatomy during 2013.  Miss M will create a new silicon masterpiece matching the one she gave me last August. With up to a 90% reduction in the risk of further sinister developments in my presently human left side, this is a surgery with ‘do it’ stamped all over it.  Mr Ch has offered additional risk reducing surgery via removal of bits and bobs that are likely to go wrong – ovaries and tubes!

Unfortunately breast and ovarian cancer mounted a dual assault on my ancestors decimating them all at an early. Miss M, Mr Ch and my own GP all recommend these additional surgeries to improve my odds.  For my part I intend to do as much as possible to avoid another tango with a small dark stranger who isn’t handsome, charming or in any way a pleasure to dance with.  For me, more surgery is less daunting than the prospect of early recurrence/metastasis; HER2 positive breast cancer is renowned for these traits.

I know surgery isn’t a silver bullet but I will know in my heart I did everything possible to keep the stalker of evil intent at bay.  For now though I can’t get too excited about my Everest descent because I have to deal with a huge parcel of drugs plus a bright yellow sharps box designed to see me through the aftermath of TH-3.  I’m adverse to drugs especially when copious quantities are involved; the weather and my dangerously high temperature incident a few weeks ago have changed my mind just this once.  I can’t afford to be snowed in with neutropenia because the emergency services can’t get here at the moment. Dying of neutropenic sepsis will never be on my to do list, so I’m having BONC.   (N.B. this is not to be confused with having ‘a bonk’).

BONC includes dexamethasone, the insomnia inducing beet steroid that turns me into an overgrown version of the Ready Brek Kid complete with deep Beetroot coloured glow visible from c.3 miles away 🙂 . Ondansetron to combat sickness.  11 days of Ciprofloxacin (preventative antibiotics) and 5 days of Neupogen injections that I’ll self-administer.  Neupogen forces the bone marrow to produce neutrophil precursors, a very good thing following Taxotere. The downside is that it can cause pain inside bones, especially long bones and the sternum.  As ever I’m hopeful any side-effects will be minimally disruptive.

Nurse L (one of the loveliest people on our planet) said my return to normality will begin very soon now… I can expect to see some hair putting in an appearance. This will be weird. I’ve finally become accustomed to the bald cone-head look though I find it very chilly.  I’ve been tempted to borrow Elizabeth’s rain hat, complete with its warm ear flaps but I don’t trust UK customs officials to get it here undamaged. So the sooner my hair decides to show up the better and I don’t care what colour or texture it is, I’ll be fine with anything that delivers a nice warm feeling in the upper head region 🙂

One final word before I sign off. To everyone out there faced with an aggressive breast cancer diagnosis, a conversation that says it’s treatable (not curable) and what seems to be a very long, daunting and arduous journey ahead, please know that you can do this.  I’m not going to say it’s easy or enjoyable but equally it is not the end of the world.  You can get through it and you can take your life back – whether it’s many years or a  few months it is still your time. Cancer cannot be allowed to ruin it.  As my dear friend Kozo (call in on him at Everyday Gurus) advises, this applies to many of the adverse situations we face in life, it is not restricted to the uninvited stranger that began stalking me with evil intent last May. So please don’t forget, you can do this.

And if you ever saw her, you would even say it glows…..

rudolph1

Rudolphine, lesser-known sister of the famous red-nosed reindeer Rudolph.
(Image: licensed from 123RF.com)

My nose was one of the few parts of my body I thought might be described as “cute.” The rest of me doesn’t fit comfortably with that description, far to many long bones with angular joints.  Think tree frog, lemur (without hair of course) or if I’m having a really bad day, preying mantis.

Credits: wikipedia & Stanford.edu

Credits: Wikipedia & Stanford.edu

Neither too big nor too small, straight and only very slightly upturned at the end, as noses go I think it’s quite a neat looking specimen and functionally until around ten days go it worked just fine too.

Now I fear I may be morphing into Rudolphine, lesser-known sister of Rudolph the very famous red-nosed reindeer. I believe the glow of my rosy nose is due to a new phenomenon I’ve decided to call chemo-luminescence.

Like bioluminescence, chemo-luminescence is caused by chemicals but they aren’t the ones most glowing animals carry around inside their bodies. Mine are derived from taxotere and herceptin.  Unlike bioluminescence, chemo-luminescence has some other effects including, but not limited to:

♦ Symptoms akin to a very heavy cold, e.g. uncontrollable and randomly alternating blocked/runny nose.

♦ Permanent nose bleeds. Not CSI material but all day, every day a slow trickle nose bleed.

♦ Sneezing fits, lasting from a few seconds to a few minutes.

♦ Crusty nose. Yes it is as horrible as it sounds. Most mornings rosy nosey is encrusted with dried blood.  Coupled with unearthly pallor it helps create a very effective impression of a greedy vampire with an inhalation habit.

Nosferatu - he has eyebrows but my teeth are nicer :-)Credit: fanpop.com

Nosferatu – he may have eyebrows but my teeth are nicer 🙂
Credit: fanpop.com

♦ Watering eyes.  A greedy vampire with an inhalation habit and a heavy cold who is quietly crying all the time.  So very attractive.

Even if I resemble him, I don’t think I want to turn into Nosferatu.  I’m too fond of seeing the sun shine.   Being a magical flying reindeer might be fun but Santa won’t hire me 😦 The trickling would give away the location of his secret North Pole workshops!

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.

 

Courage is only the second virtue…..

Image

Its six days since my last appointment at chemo camp where I underwent the first infusion of Taxotere and Herceptin.  Having an infusion makes it sound like a warm and soothing cup of herbal tea doesn’t it?  Refreshing essence of Yew Tree freshly spliced with oleic acid and Tween.   The infusion itself was fine; it didn’t cause any adverse reactions at the time and to date the vein it entered is still visible and pain-free.  This is an improvement on the veins used for my earlier rounds of FEC chemo because as well as becoming sore and shrunken, in places they’ve completely disappeared.  I’m told those veins may or may not recover to their pre-treatment state – thankfully there were only three FEC sessions to be endured.

My oncologist issues steroids to go alongside the Taxotere treatment. For me they begin as a high dose one day before infusion, continue at high dose for two further days and then tail off through reducing dosage over three more days.  The steroids come with their own side effects and sometimes it can be confusing to understand which reactions relate to chemo and which relate to one of the supporting drug regimes.  After six days on steroids, yesterday was my first ‘clean’ day.  I’ve never been a big drug taker, most of the time if I get a headache or hurt myself I just let things resolve and trust my body to heal.  Other than the odd paracetamol when faced with a migraine I try to avoid prescription and over-the-counter medications.  It’s a personal choice that’s served me well for many years.

I’ve mentioned previously that I’m not altogether happy about taking steroids but I’m fairly certain I now know why Taxotere calls for a high dose reducing dose over time.  I did a lot of research into chemo regimes before my Oncologist talked about options and although the drugs used in Europe vary a little from those used in the US, my regime seems to be optimal for HER2+ breast cancer. Anthracycline followed by taxane plus Herceptin.  I was warned of Taxotere’s toxicity and the unique side effects it can induce but I suspect the steroids play a crucial role in holding them at bay, at least for the time it takes for the majority of this drug to exit the body.

As yesterday wore on I noticed a number of unfamiliar aches and pains that fell outside the parameters of age-related niggles and twinges.  Unfortunately chemo side effects vary person by person; adding complexity, we all experience and interpret our symptoms differently too.  I find nausea debilitating but others wouldn’t be concerned by it.  On the upside, the nausea associated with Taxotere was barely noticeable for me.  Aches and pains over the past two days are a slightly different story and I’ll attempt to explain in the hope that others who might need Taxotere have early insight and some idea of what to expect from one who has been there and done it.

The first thing to say about the aches and pains is that they are not excruciating but they are clearly noticeable in a number of places.  The joints of my back and limbs are affected as are my long bones – shins and femurs.  Internally it appears I have some soft tissue irritation; my diaphragm feels like its being stabbed at random at various points.  This stabbing sensation is also present beneath my shoulder blades and between my ribs.  Bizarrely it seems to happen unsystematically rather than occurring continuously; sometimes it’s quite a sharp stab.  If I was assessing this on a pain scale of 1 = low to 5 = high I’d opt for 3 with the occasional 4 thrown in – not severe enough to make me reach for pain killers.  I’m not sure what this says about me or why my body copes with some things better than others but physically and mentally I find it easier to deal with pain than constantly feeling sick.

When I was diagnosed this year and spoke about the essential surgeries, the chemo and risk-reducing surgeries required further down the line many people talked of the bravery and courage involved in dealing with cancer and its treatments.  I don’t consider I’m either brave or courageous. Going through these events does call for some resolve but I think perhaps Napoleon Bonaparte sums it up best.  “The first virtue in a soldier is endurance of fatigue; courage is only the second virtue.”

For anyone facing this treatment themselves or helping a loved one through it, endurance seems to be the key.  Stick with it because whilst not altogether pleasant, the side effects do pass, the body has remarkable ways of repairing itself and if you can keep your spirit buoyant I’m sure it helps the rest to take care of itself.

So far, so good….

Just a quick post today to update on my first experience of Taxotere and Herceptin following my mammoth day on Tuesday.

So far, so good. 

  • I haven’t felt terribly nauseaus and it’s a real blessing compared with FEC since that made me feel impossibly sick for days and nights on end. 
  • I do have a few issues with my stomach but these will hopefully resolve after the weekend.  They’re irritating rather than debilitating.
  • As with FEC, TAX appears to be affecting my mouth, tongue and soft palate –  feels like they’ve been badly burned or microwaved. Will need to keep an eye on that over the next few days.
  • I have a few aches and pains but nothing significant. Just an achy neck, shoulders, joints in my upper back, knees, shins and feet.  I imagine this is what it  might be like if I manage to survive to a grand old age so I’m viewing it as training and preparation for that time of my life.
  • My nose is a bit bloody – probably due to low platelets.
  • My head feels tingly, like it did before my hair fell out. But as I have no hair of my own at present I’m hoping it isn’t a sign my head is going to fall off tomorrow as that would be an inconvenience.

I am a little tired but that is wholly down to steroids keeping me awake for 22 out of 24 hours every day since Monday!

Now I’m off to attempt sleep and if that fails I’ll be checking out everyone elses posts for the rest of the night or until I eventually slip into slumber. 🙂

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Image:preraphaelites.org.

Onwards and Upwards. The journey continues.

Visually attractive road sign successfully diverts motorists attention resulting in more crashes!

Visually attractive road sign successfully diverts motorists attention resulting in more crashes!

Yesterday (4th December) was my delayed visit to chemo camp, the beginning of Taxotere and Herceptin (TH1).  It started early with further ingestion of high dose steroids.  I have to say I really don’t like these things one iota and I would avoid taking them if at all possible (the thought has crossed my mind). Following a quick breakfast we were out of the house by 8am to reach the hospital for 9am.

The fun began a few metres along our lane as we noticed none of the roads out here had been gritted, yet temperatures fell to -6c overnight.  We live surrounded by 1:5 (20%) or 1:6 (16.6%) hills. Rather than grit, our local council strategically placed attractive and somewhat distracting road signs in an attempt to draw motorists attention to the more treacherous stretches of asphalt.   Unfortunately the council failed to realise diverting drivers eyes towards a pretty snowflake appears to cause more crashes.  I’ve included the sign – I think it’s pretty but see for yourselves.  Unsurprisingly we encountered another crash today and the road was blocked as the battered vehicle was loaded for transport. Fortunately it seemed no-one was seriously hurt.  I suspect the combined cost of snowflake signs coupled with police and paramedic attendance, road closures and insurance claims is more expensive than the simple act of scattering some grit. But what do I know?

Upon arrival at camp I saw my buddy Brian for a fleeting moment. He was in for blood draws in advance of transfusions later this week.  Brian and I met on each of my three previous visits and we’ve become firm friends. He’s the guy who welcomed me to the club no-one wants to join, made me feel like I’d be safe and loved there and gave me the last three roses from his garden on my second visit.  On reaching our fourth rendezvous this morning we greeted with a hug and kiss. Brian is 77 and this simple act, a warm hug and peck on the cheek between fellow cancer fighters means so much for us both given physical interactions with the rest of humanity are pretty much off-limits due to our suppressed immunity.  Brian was done by 10am.  I, on the other hand, stayed at camp all day from 9am until 5.30pm.

We started with cannulation and with me it’s always a trial. Here’s the evidence from this today’s adventure. (Don’t look if you’re eating or squeamish).

Cannulation into the vein beneath my thumb - it was a little messy!
Cannulation into the vein beneath my thumb – it was a little messy!

Following cannulation we went for the saline flush. This is very inoffensive and takes about 30 minutes.  Next up was Herceptin, an essential part of my treatment. Herceptin is known to cause serious infusion reactions so Emma my chemo nurse warned me to shout if I “felt strange in any way.”  Truth is I’ve always felt strange in many ways but she’s a chemo specialist, not a psychotherapist so I decided to keep those thoughts to myself  😉 Herceptin took around 1.5 hours to infuse and I felt OK throughout.

After Herceptin we moved to Ondansetron, an anti-emetic infusion plus a further saline flush.  Then came the other big gun in my treatment regime, Taxotere complete with a second warning that I must shout if I felt strange in any way. Taxotere is a heavy-weight chemo drug and Emma explained it was essential to take the steroids much as I detest them, since without them Tax is potentially lethal.  I immediately agreed to stick with the steroids for as long as it takes even if I look like Mr Staypuff’s beetroot coloured sister and suffer some severe inconveniences inside my gut.

This is how I look on steroids; it is not attractive inside or out!
This is how I look on steroids; it is not attractive inside or out!

Taxotere is a strong yet fragile drug; it has to be protected from daylight so as soon as it’s put up on the drip-stand, it’s covered with a fetching crimson bag.  Personally I think they should give me one of these for my head as I’m often not dissimilar in colour and would, I think, be less scary if fully concealed beneath said bag.  I would politely request a couple of small air holes though as the bag is thick plastic!

Taxotere - too scary to be displayed in public ;-)
Taxotere – too scary to be displayed in public 😉

Tax completed by lunchtime and was followed by another saline flush.

I then had the long wait to see if any allergic reactions would kick-in.  The cannula stays in for the whole time in case antihistamines need to be administered and this makes the punctured vein very grumpy.  At one point during the afternoon I developed a slightly more reddish hue than usual but it passed of its own accord.

Emma was supposed to finish her shift at 3pm today but decided to collect her teenagers from school and return to camp in case I developed any problems.  Although Ronnie my other chemo nurse said she thought all would be well, Emma was determined to come back and oversee me once her children were safely at home.  The dedication of these ladies is remarkable – they don’t get paid overtime so I’m going to make them a hand-picked Christmas hamper complete with champagne as a small token of my thanks and drop it in when I return to see the oncologist next week.

By 5.30pm I felt largely the same as I did on arrival at 9am. Except for my sore and bloody wrist complete with rising bruise.  Emma stressed that if I developed any signs of breathlessness in the next few days I must immediately call for an ambulance.  It’s sobering to receive this kind of instruction when you’ve been fit and relatively healthy prior to cancer making an appearance in your life.  Emma also advised flu-like symptoms and joint aches may become my new friends over a 2 – 5ish day period and I have to watch my temperature closely. Tax is extremely hard on blood cells so infection risk is heightened.

As always there is good news to go along with these health warnings.  So far I have no signs of anything untoward happening inside me and feel relatively normal.  Unlike FEC, TAX has not made me head-to-toe seriously nauseous from 4pm onwards.  With any luck if nausea stays away and allergic reactions are contained by my unloved but essential steroids, today (it’s now approaching 1am) will be a very nice day.   The biggest piece of good news?  I’ve completed TAX1 and I’m now two-thirds of the way up Everest armed only with my flip-flops, sarong and the love of my dear family and friends 🙂   Onwards and Upwards!

Armed only with flip-flops, a sarong, the love of my family and friends I'm now two-thirds up my ascent of Everest!

Armed only with flip-flops, a sarong, the love of my family and friends I’m now two-thirds up my ascent of Everest!