A small star of wonder

There are few miracles in Cancerland. Many of today’s treatments are founded on surgeries, chemo and radio therapies that have been around for decades. The concept of mastectomy has existed for centuries, though thankfully surgical practice has improved significantly in that time. Cancer research is resource intensive, costly and for every positive advance there are many more that fail to deliver useful results.  

As a recovering cancer patient, thinking about all of this is a daunting prospect. So many race for the cure because no-one wants their life cut short by cancer. Yet the cure continues to elude us and every day there are tears and condolences as more of our number depart the human race.  This, all too often, is the stark reality of Cancerland. It makes the psychology of cancer equally as challenging as the disease itself.

Science has not given up though and for those of us affected by this odious illness, from time to time there are breakthroughs, stars of wonder that shine a ray of hope into what might otherwise be a very stark world. Since being diagnosed as HER2+ I’ve hunted down as much information as possible about the ramifications of my particular cancer subtype. I am the kind of person who needs to know what she’s up against and until recently it painted a very challenging picture. More aggressive, more difficult to treat and more prone to early metastasis are not the kind of facts I hoped to discover. Without the advent of Herceptin my consult had said our initial conversation, the “yes you have cancer” one, would have been followed by “and we’ll do as much as we can but the outlook isn’t good.”

Unable to resist the urge to undertake my own research, I quickly discovered that members of the HER2+ community seemed to be dying at an alarming rate, even if their cancer was diagnosed early and they’d undertaken aggressive forms of treatment. In 2012 a long knife skewered my heart. The “yes it’s cancer” part was unpleasant but it wasn’t a complete shock. The HER2+ part was a twist of the knife, unknown territory which soon became a gargantuan challenge. Though my treatment is over my quest for research did not subside and as we approach Christmas 2014, the season of peace and goodwill,  a small star of wonder shines for those who are HER2+.

The survival benefits of Herceptin have been assessed in long term research, the first of its kind because Herceptin is one of a handful of cancer treatments that haven’t been around long enough to know exactly what the outcomes might be. Earlier this month the Journal of Clinical Oncology published a study that found Herceptin improved 10-year survival from 75 percent with chemotherapy alone to 84 percent with combination therapy – chemo plus Herceptin. The results also established continued improvement of disease free survival – the addition of Herceptin has seen 10-year disease free survival rates increase from 62 percent to 74 percent. As someone affected by HER2 these increases in 10 year survival and 10 year disease free survival are encouraging. They begin to shine a ray of hope in a landscape where hope is desperately needed – 74% isn’t good enough in my opinion but it sure as hell beats less than two-thirds.

It saddens me that, for my friends with metastatic breast cancer, everyone who is stage four at diagnosis, anyone who isn’t HER2+ and all those living in the wrong geography or an insufficient income bracket this discovery offers no comfort. It’s a small breakthrough with relevance for 15-20% of those with breast cancer. I’m part of that population yet there are no guarantees it will be of help to me either. Breast cancer is like that, no-one knows which straw they’ve drawn and reoccurrences can happen well beyond the 5 year “all clear” period.

Uncertainty and unpredictability are part of the fabric of Cancerland and somehow we learn to adapt to that, to cope with an outlook that’s permanently cloudy, but even for the most optimistic among us this becomes psychologically wearing. Coping is marginally easier if the cloudy outlook is perforated by at least one small star of wonder every few years – it seems that Herceptin may well be that kind of star.

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Limits

Bideford Bay

Bideford Bay

My trip along the Tarka Trail exceeded a few limits. It would’ve been easier to turn around at Instow but I didn’t because I inherited the never give up and always do your best genes. They’ve served me very well in my life to date and hopefully they’ll continue to do so.

The journey provided some valuable insight into what I’m physically capable of, how far I can push myself and what the consequences of over-exertion might mean. My philosophy on consequences is “so long as they’re survivable they’re manageable.” That’s not to say they aren’t painful as hell but I’m still here so it’s a case of working them through 🙂 .

I had to be very gentle with myself for a whole day and took more NSAID’s than I’d like to keep the pain in check. I have a strong aversion to drugs unless absolutely necessary and though I wanted to tough it out, I knew that would mean taking more than one day to recover.  I traded an extra day’s activity for  few pills; I’m not proud of that fact but it’s part of managing the consequences. Paying attention to the most tender spots highlighted the trouble points as right side: knuckles, wrist, elbow, knee, ankle, and left side: hip, elbow and knee. They’re the places that gave cause for concern when I was undergoing active treatment but there are no new hotspots which can only be a good thing.

The benefits of getting out there and exceeding a few limits by far outweighed the consequences. I saw some beautiful places that are inaccessible by road, spent a whole day outside in the fresh air and captured a few nice photos of snowy egrets, a curlew, some oyster catchers and possibly a snipe. I also saw a whole host of other wildlife including more dragonflies and butterflies than I’ve seen for ages, some brilliant pink sweet peas and pretty little vetches. I wasn’t confined to an office, a car or a house, didn’t need to watch the clock and could be as sociable (or not) as I liked.

Knowing our limits doesn’t mean we have to be constrained. Now I know how far is too far I can adjust accordingly – push up to the boundary and gradually try to extend it over time. I’m fairly sure with some ongoing effort, continued determination and the help of NSAID’s when required I’ll be able to go further and regain the stamina cancer treatment took away. Although it will be a small victory, when the day comes it will be a victory worth celebrating because the whole cancer thing wrought more havoc than can possibly be imagined.

It’s true that the effortless option has never really been my path of choice and as a result I’ve spent 40-odd years working my socks off. In doing so I learnt that without giving things a go, there’s no way to establish what might be possible. Life doesn’t always turn out exactly as we’d like yet we can still achieve more than might reasonably be expected if we give it a go and refuse to accept there are limits. I’m not going to enter myself for the New York marathon but I’m not being confined to the 100 meters either 🙂

 

Stuck in a moment

This song by U2 has been playing in my head for days now.

Songs often come to me when there’s a lot on my mind.    It’s funny that our brains can drag things out from the depths of our memories at times when the messages within them might have special meaning. It’s especially funny how my little brain still manages to process melodies and the accompanying lyrics from a multitude of songs when many of my cognitive functions have been hammered into non-existence over the past 9 months all courtesy of you know what.

The sun is attempting to make an appearance today and in spite of my malfunctioning joints I’m going out into the garden to plant some flowers.  I love flowers especially old-fashioned varieties like forget-me-nots, red-hot pokers, bluebells, grannies bonnets and foxgloves.

In a few weeks the flowers will hopefully attract butterflies and bees so there’ll be plenty of colour, life and beauty in my garden following a long, cold and particularly gloomy winter.

I’ll be singing along with U2 while I’m out there messing about in the mud for a few hours.  If you’d like to sing along with me here are the lyrics…

 

I’m not afraid of anything in this world
There’s nothing you can throw at me that I haven’t already heard
I’m just trying to find a decent melody
A song that I can sing in my own company

I never thought you were a fool
But darling, look at you
You gotta stand up straight, carry your own weight
These tears are going nowhere, baby

You’ve got to get yourself together
You’ve got stuck in a moment and now you can’t get out of it
Don’t say that later will be better now you’re stuck in a moment
And you can’t get out of it

I will not forsake, the colours that you bring
But the nights you filled with fireworks
They left you with nothing
I am still enchanted by the light you brought to me
I still listen through your ears, and through your eyes I can see

And you are such a fool
To worry like you do
I know it’s tough, and you can never get enough
Of what you don’t really need now… my oh my

You’ve got to get yourself together
You’ve got stuck in a moment and now you can’t get out of it
Oh love look at you now
You’ve got yourself stuck in a moment and now you can’t get out of it

I was unconscious, half asleep
The water is warm till you discover how deep…
I wasn’t jumping… for me it was a fall
It’s a long way down to nothing at all

You’ve got to get yourself together
You’ve got stuck in a moment and now you can’t get out of it
Don’t say that later will be better now
You’re stuck in a moment and you can’t get out of it

And if the night runs over
And if the day won’t last
And if our way should falter
Along the stony pass

And if the night runs over
And if the day won’t last
And if your way should falter
Along the stony pass
It’s just a moment
This time will pass

 

Herceptin and me: potential miracle medicines come at a cost

I have no doubt Herceptin is a potential miracle medicine for people like me who are diagnosed with HER2 positive breast cancer.  I can still remember my Consultant telling me how lucky I was that it had recently been approved for early stage breast cancer in the UK. She told me without it our conversation would’ve been quite different; without it she’d have said she was sorry because although she’d do her very best, it was unlikely anything she could offer would prevent the cancer coming back.  When cancer returns (metastases) somewhere other than where it started every day is a bonus. Although metastatic cancer can be kept at bay for months, possibly years,  it cannot be stopped.  The majority of cancer deaths are caused by metastases.  Few things scare me, metastases is one of them.

Like many other people prior to diagnosis I assumed (wrongly) that breast cancer is one disease.  Since being diagnosed I’ve read, researched and discovered just how complex an adversary it is, the role tumour suppressor genes play, the different survival rates for triple negative, HER2 positive and ER/PR positive subtypes and the further complexity of signalling pathways, gene over-expression, enzymes and timing of surgery.  When I first researched HER2 positive breast cancer the information I found was depressing to say the least.  Then I discovered further information about the use of anthracycline based chemotherapy in conjunction with Herceptin and the survival benefits of third generation chemo regimes.  Things looked brighter.

Last Friday I was due to have my seventh Herceptin infusion.  Herceptin infusions are less challenging than chemotherapy but in my case it seems I’m still prone to some of the rarer side effects.  A medical trial in more ways than one the Trials Nurse joked with me.  For several weeks I’ve experienced pain and stiffness in my joints. It began in the third and fourth fingers of my right hand. One day everything was fine, the next I couldn’t bend my fingers without a fair degree of discomfort.  Initially I dismissed it thinking I must have slept awkwardly and squashed my hand during the night.  The swelling, stiffness and discomfort didn’t subside.

Over the past eight weeks joint problems began to affect the fingers and thumbs of both hands, my wrists, ankles, knees and hips.  When I went to the chemo unit last Friday and showed them my fingers they called the Head of Oncology in Worcester, Herceptin was suspended and I was referred back to my Oncologist today.  Rarely can I go to hospital these days without someone wanting me to remove my clothes.  Monday 15th April was no different.  If it wasn’t so cold and wet in this country I’d consider naturism because some stranger has looked/poked at my body at least once a fortnight for the past year.  Continuing to waste money on clothing is almost futile… I have no modesty left to preserve!

After a thorough examination the Oncologist, Miss P, said I was unfortunate to be suffering these side effects and Herceptin is the prime suspect. I hadn’t met Miss P before but I immediately warmed to her, she was honest, straightforward and empathetic.  She admitted she has rarely seen such badly swollen knees or hands and it seems I’m one of only two women in our Health Authority area suffering from this level of adverse reaction to Herceptin.  As a result H and I are having a trial separation for the next three weeks; infusion seven will be delayed by at least a month.

Miss P’s aim is to reduce the inflammation in my joints so that we can complete the remaining Herceptin treatments. I want to continue. I also want to be able to use  my hands, walk and stand/sit without pain (or looking and feeling like I’m well over the age of 99 / related to the Tin Man from the Wizard of Oz).  To assist in this plan I have a new daily drug cocktail and new activity regime.

P1000886

Diclofenac is a non-steroidal anti-inflammatory. Miss P hopes three a day coupled with four doses of paracetamol, being more cautious about the amount of activity I undertake and keeping my feet up as much as possible will help reduce the fluid that has accumulated in my joints.  Reducing activity is frustrating – keeping active is supposed to be a good thing, it has survival benefits.  Irrespective of that, being cooped up again might well drive me insane.   Please God, who or wherever you are, take care of my mental health but most of all take care of my liver during the next 21 days because its going to get another hammering and has already endured much, much more than either of us bargained for.

The good news is that I now know the extra 9.5kg I gained in 3 months is all fluid, primarily retained around/in my joints and various soft tissues. The not so good news is that if the drug cocktail fails I’ll be referred to an orthopaedic surgeon with a view to draining the joints. I refuse to countenance an orthopaedic referral because 1. I’m not over 80 and 2. I’m not having more sharp implements stuck into me, especially into my joints.  The associative fear of needles I developed over the past 6 months would be pushed to a new level and its barely manageable as it is.

I’ve never seen so many packs of pills and this will be the first and last time. Drugs, do your thing and free me from this infernal inflammation.

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.