Don't Fall in the Nocebo Trap!

I read a fascinating article today about the 'nocebo effect' - the thought that can make you sick.

We've all heard about the placebo effect: the positive results that a simple sugar pill can have if the patient taking the pill believes that they are taking medicine that can make them better.  The nocebo effect is the opposite: the power of the brain to make us feel ill if we believe that we will be ill. 

The brain has an astonishingly powerful effect on our physical state.  In many trials in which placebos have been used, not only have patients receiving the placebo reported positive effects in the belief that they are being treated, but many have also reported experiencing the negative side effects of the real medicine even though they are only taking sugar pills.  And we're not just talking about people convincing themselves that they feel nauseous: patients have also developed rashes, skin complaints and even shown elevated liver enzymes just because they expect to redevelop these physical symptoms.

Yes, that's right, patients have developed measurable physical conditions simply because they expect those conditions to develop.

That's a really important realisation for those of us on chemotherapy.  When we start our regimes, we know that we face a possible raft of side effects.  It's important to know about those side effects so that we can prepare ourselves.  And yet, what if that knowledge is actually making side effects more likely?

I don't mean to belittle the very real side effects that we experience on chemotherapy.  Of course the chemical cocktail does genuinely have an impact on our bodies.  Even if the side effects are the result of a nocebo effect, they are nonetheless very real.   But if we recognise the power of our brains over our physical symptoms, both for good and for ill, can we harness that power to help us cope better?

It's easy to see how the nocebo effect can suck us in.  It happened to me when I convinced myself that I was ill because my white blood cell count was low.  I had, in fact, been obliged to postpone chemo several times for this reason and had felt weak and low each time.  On this occasion, I remember sitting in the waiting room at the hospital feeling awful again, waiting for my blood test result and being quite convinced that my white blood cells were low again.  I was utterly miserable because it meant cancelling a week away with my family to accommodate my new schedule but there was no doubt in my mind that I was in no fit state for chemo.  Half an hour later, I had seen the doctor and been told that my white blood cell count was (inexplicably) massively higher and I would be able to go ahead as planned.  Suddenly I felt dramatically better.  Not just less miserable, but physically better.  And yet, nothing had actually changed.

On better days, I managed more successfully to harness the positive power.

Last summer, before I started chemo, I was lucky enough to stay in a beautiful mill by a stream in sunny Portugal.  Every day, I stood on a stone in the middle of the stream to do my post-mastectomy exercises.  Looking at the glorious view and soaking in the sunshine, I told myself over and over that I was strong.  In that wonderful place, I felt strong, as if I was a battery being recharged by the sunshine and tranquility. 

Later, when I was struggling with chemotherapy through the dark winter months, I tried to put myself back in that place.  I remembered the warmth of the stone beneath my feet, the gurgle of the water dancing in the stream, the smell of the summer flowers.  And I told myself over and over that I was strong.

Did it help?  I think it did.  Did it mean that I didn't suffer side effects?  Of course not.  But I'm sure that I suffered less than I would have done otherwise.

 When we go through chemo, we are out of control for months at a time, pumped full of chemicals with long lists of side effects and seemingly helpless in the face of it all.  So it is perhaps an important reminder that we carry within our brains the power to make things better.... or worse. 

Getting it right doesn't mean we will sail through symptom-free, nor does it mean that we are not being positive enough if we feel really rotten.  But it does remind us to avoid the trap of making ourselves ill simply because we expect to be ill - and it arms us with a powerful weapon to fight to be as well as we can reasonably expect to be.

It Takes Time to Get Better

Monday lunchtime and my body was begging for an afternoon nap.  I told it, quite firmly, that the days of lunchtime naps were over as I was much better now and I'd better get on with some work instead.  So I sat down in front of the computer with a cup of tea.

Forty five minutes later my head jerked up when my phone went off - I'd fallen asleep in my chair.

After last week's burst of energy, I had thought I'd kicked chemo's butt (as they say).  But my friend - a two-times veteran of breast cancer - looked at me sympathetically and said, "You are getting better.  But it isn't a linear progression.  You have to listen to your body and be kind to yourself'.

Wise words.  It's true that I am definitely better: if I need something from the bedroom I don't look at the stairs and wonder if I can get up there.  Last week I even had a few days of zipping around with something like my old energy.  But after a busy-ish weekend, my body demands a reboot.

I realised that I need to stop looking at these few weeks between chemo and radiotherapy as a chance to catch up on everything....and more as a few weeks to rest and prepare for the next round.

Better go, I'm off for a quick nap.

FEC/Taxol - A Not-Too-Scary Side Effects Story

When I first knew that I had to face chemotherapy, I was scared.  I also craved information about the side effects - not the dry lists of possible effects provided by the manufacturers but real experiences written by real people.  So I searched on line and found myself trawling through discussion forums...exactly the place where people post when they have problems.  When I had read about the horrible side effects that some people suffer, I was very scared indeed!

Five months later I am, unbelievably, at the end of my chemo experience and I can say, hand on heart, that it hasn't been anything like as bad as I had feared.  Yes, there have been tears and tough days and fairly often I've crawled back to bed for an afternoon nap but I've managed to get out of bed every morning to get the kids to school and never been stuck on the sofa all day.  I've kept up with the kids, not missed one of their events, been out with friends and on holiday...more or less carried on as normal if sometimes at a slower pace.  I remember dancing at a Peter Gabriel concert half way through FEC and thinking hey, I can still do this!  I did have to give up my voluntary job half way through but that wasn't because I felt too sick but because the weekly demands of Taxol meant that I just didn't have time.

So in this post I have recorded my side effects in the hope that it might help others who are hungry for information as I was when I started.  My chemo regime was originally FEC-T (nine weeks of FEC followed by nine weeks of Taxotere).  But in the end my white blood cell count was too low to tolerate Taxotere so I had Taxol instead and the whole process took a total of 20 weeks. 

This is a not-too-scary side effects story.  Of course, chemo affects everyone differently.  My message is that it can be manageable...so don't let yourself get scared by the horror stories as I did.

My FEC was administered every three weeks and involved quite a long session at the hospital as each of the three chemicals had to be dripped in one after the other with a saline rinse to start and finish.  It took around 4-5 hours each time.  I had a PICC line inserted in my arm before the first session as FEC can damage your veins and had to have it cleaned by a nurse every week.  

Immediately after chemo I felt fine, but be aware that FEC briefly turns your urine red, or you'll get a shock when you go to pee!

I found that each three week cycle followed the same pattern with the first week always the  toughest, the second week offering a few discomforts and the third week being much better.

Insomnia was my biggest problem for the first three or four nights (caused by the steroids in the Medrol I had to take to stave off nausea).  I was twitchy and the blood pounded in my head so I took headphones, soothing music and a book to bed with me each night. 

The Medrol did its job and I had little problem with nausea.  I did have bad indigestion though, if I ate a proper meal then my stomach would sound as if new year fireworks were going off in there!  Eating small, regular, bland snacks for the first week helped.

After the first week, the mouth ulcers started and my mouth felt raw and exposed (I ate a kiwi one time at this point - really bad idea).  The indigestion settled down by this point but I suffered with some constipation.

My hair fell out though it took longer than my oncologist had suggested, he said it would be around day 14 of the first cycle but in fact I didn't lose a single hair for 27 days when it suddenly all fell out in the shower.

My periods carried on for a couple of months before stopping.

The problem that dogged me all the way through chemo was my low white blood cell count.  Very low counts are a worry as it makes you vulnerable to infection which can be serious, though luckily I avoided getting sick.  But it can also mean that you have to postpone chemo for a week to allow your body to recover.  This can be terribly frustrating as it makes it difficult to plan - suddenly holidays have to be cancelled, arrangements rearranged, all to accommodate a new schedule.  This was perhaps the biggest lesson of chemo for me, that things don't always go to plan and you just have to be very flexible.

The biggest change of plan came at the end of FEC when I should have moved onto three-weekly Taxotere.  My white blood cell count was, however, too low to tolerate Taxotere and my only option was to take Taxol instead.  Unlike FEC and Taxotere, Taxol is administered every week.  So suddenly I was faced with nine weeks of hospital visits every single week. This is when chemo really did start to take over my life, just because it took so much of my time.  It was no longer possible to go away over Christmas and New Year and I had to give up my voluntary job.  On the other hand, I have heard that Taxotere can be quite severe and Taxol was not so tough.  So perhaps it was a good thing in the end.

And at least Taxol is much quicker to administer than FEC - on a good day I could be done in 2-2.5 hours.  And I had no problem with my appetite on Taxol - the weight I lost on FEC soon went back on!

In the beginning, Taxol was reasonably easy.  I started with flaming red cheeks for a day which gave the weird feeling that I was constantly embarrassed about something.

Hot flashes caused some problems sleeping (duvet off...duvet on...duvet off...) but on the whole I found that the pounding head and twitchiness was much better than on FEC (despite still having to take Medrol, go figure).

Leg, chest and arm aches worked their way through from about day three to six, for the first few weeks this was no worse than as if I'd done an over strenuous work out.

I had some tingling in fingers and toes but luckily this never progressed to significant numbness. 

I found myself getting short of breath, sometimes with chest pain. This developed into an intermittent cough which was apparently due to fluid retention in the lungs.

Low white blood cell counts continued to be a problem.  Once I was neutropenic (extremely low count) but I carried on as normal including spending an evening in a theatre watching my son perform in concert while people coughed and sneezed around me (I figured that nothing could be worse than going up and down in a crowded hospital lift so why not?).  Fortunately I stayed well (lots of anti-bacterial hand gel).  But I did have to have a course of 5 Neupogen shots on two occasions to get my count up and once chemo was delayed by a week again.  The Neupogen caused me one day of severe bone pains...but these promptly vanished again.

Oddly enough my hair started to grow back on Taxol, now I have a few millimetres soft fuzz on my head.  But my eyebrows and eyelashes survived FEC only to start to fall on Taxol and are both very patchy now that I am at the end.

My nails became discoloured but never flaked or came off - I wore nail varnish all the way through as advised so perhaps this helped.

They do say that Taxol is cumulative, however, and I have to admit noticing a decided turn for the worse in the last three sessions.  The aches in muscles and bones became bad enough to keep me awake at night and I started taking paracetamol before bed.  Combined with increasing hot flashes and endless irritating itching around the vagina (caused by dryness), insomnia became a problem again.  The symptoms started to last for longer until I would start the next cycle still feeling achy from the previous cycle.  By the very end, I felt weak in my arms and legs and struggled to make it all the way up the stairs without pausing for breath.  But at least by this point I knew it was nearly over.

All the way through, I have tried to eat healthily, exercise, drink lots of water and avoid caffeine and alcohol.  I think it helped. 

If you're starting down the chemo road, take heart.  There's no denying that it's a long haul and there will be some downs along the way.   But life carries on...just make sure you celebrate every stage of the way.  

Running the last chemo mile

I confess to starting yesterday in tears, though I finished it in smiles.

Yesterday was Back to School Day so at 7am I was dragging myself out of bed feeling rotten after yet another sleepless night and making the kids breakfasts in a puddle of self-pitying tears.  How can I describe how I feel at the moment?  The worst of the weekly muscle aches and stabbing pains worked themselves out over the weekend but I still have various niggles including a return of mouth ulcers and an embarrassing itch which is bad enough to give me sleepless nights.  But overall I just feel....weak.  I have wobbly legs and no strength in my arms.  Halfway up the stairs I have to rest, gasping for breath.  It is as if I am getting over a horrible bout of flu that has sucked my strength away.  You might even have thought I did have flu over the weekend as I was coughing all the time, but apparently that's just fluid on the lungs...

Anyway, yesterday I got the kids off to school and headed up to the hospital for my weekly blood test: another bruise to add to the collection up and down my forearm.

The good news is that this should be the very last week of chemo.  The end of my five-month FEC-Taxol chemo marathon is in sight!  But last week my white blood cell count spectacularly crashed again so the doctor warned that I was unlikely to be able to go ahead with chemo this week.  Another delay, another week of chemo dragging on.  Not a big deal perhaps, but every extra mile at the end of a marathon seems a long way.  And to make it worse, the chemo that should have been finished by Christmas looked as if it would drag on into a celebratory weekend with a friend visiting from the States after all - bummer.

At the hospital, things were busy with post festive-season appointments and we had to wait an hour and a half in the dismal waiting room to see the doctor.  I started on conspiracy theories.  She must be consulting my oncologist about my white blood cell problem. What would he recommend?  Would I have to do yet another course of the dreaded Neupogen shots before I could progress to the last chemo session?

Finally I was shown in.  My doctor smiled.  She can't explain why, but  my crazy white blood cell count has gone back up again by itself despite last week's Taxol.  Still low - but high enough to go ahead with chemo. 

So today I arrived at hospital and followed the 'Route 42' signs to the chemo ward for the very last time(as one of my visitors said, it sounds like directions to a motorway).  I nipped down the short-cut tunnel that I only found because a friend tipped me off and straight to the bank of lifts that took me several visits to work out how to operate.  How well I know how it all works now!  Was there a trace of nostalgia as I effortlessly found my way to level 4, watching the newbies bewilderment as they tried to figure out the system?  Well, maybe just a bit. 

But three hours later I walked out, a little slow and weak, with one, big, happy smile on my face.


I feel like a marathon runner who has suddenly realised that the finishing line is a mile closer than expected.  There's still a bit to run but my flagging footsteps have gained a bit of extra bounce. 

Staggering towards the chemo finish line

I'm in bed and I'm cold, cuddling the hot water bottle I made to soothe my muscles aches and the spasms in my joints.  The next moment, heat creeps across my scalp and I'm pulling off my night cap (very unflattering but bald heads do get jolly cold) and throwing off the duvet, expelling the hot water bottle from the bed.  The heat radiates down my body and dissipates: hot flash over, I'm freezing again.  My night cap has vanished and my hot water bottle is sulking under the bed and the duvet resists my feeble tug. 

No wonder I'm tired in the mornings.

Tired, achy all over, numb at the tops of my fingers and worrying about the brownness of my nails (but no flaking yet) and itchy in places I really don't want to describe in detail.  And so, so very glad that it's nearly all over. 

My doctor is glad too: my white blood cells are low yet again this despite my post-Neupogen peak last week.  My bone marrow is 'sensitive', apparently and she doesn't think I could do much more.  But I got the green light for the eighth of my nine weekly Taxol today so next week will the last....if my white blood cells hold up.

On a more positive note though, I had imagined that I might be languishing in bed by this stage of chemo and I am most definitely not that bad.  We had to stay home this Christmas due to the weekly treatments but we've still been out and about on day trips and I've coped fine - with a more restful day in between anyway.  My appetite is positively good now (unlike on FEC) so I've enjoyed all the festive fare, though a weekly weighing does have the disadvantage that I now know exactly how much I put on over Christmas...oops.

Chemo has definitely been tough but nothing like as bad as I had feared.

So all in all, I might be staggering towards the finish line -  but at least I'm still getting there on my own two feet.

Taxol Intensifying

The last few days I have been feeling rather sorry for myself.  I am so tired, I feel like a yawn machine.  I'm at the end of my weekly Taxol cycle but I'm still miserably achy and the hot flashes continue so I haven't had a good night's sleep all week.  And now I am dizzy, breathless and my chest feels tight...could I be coming down with the dreaded cough that is working its way through the school?

To be honest, the truth is that I've let it get me down.  I've convinced myself that the reason I feel so rotten is because my white blood cell count is down again and I've talked myself into a depression because more delays will mean that chemo will drag on well into the new year.  

The road ahead was starting to look long indeed.

But it seems that my little white blood cells are determined to catch me out.  My blood test this morning showed that they have zoomed up to their highest level since starting Taxol - a wonderful 3000!  So I will be able to go ahead with my fifth Taxol tomorrow, taking me over the magic half way mark.

Apparently my breathless and tight chest is due to water retention on the lungs, a normal side effect, and not an infection at all.  The dizziness is due to low blood pressure so I need to eat salt and sit with my feet up while wearing support stockings.  (What a sight I will look, watching TV in the evening with my headscarf, bags under my eyes, flat chest, feet up and sexy support stockings....munching on a salty bag of crisps!)

So I'm still achy.  And tired. And yet I feel so much better than I did this morning, just because I know I can go ahead this week, and probably next week too.  Taxol may be intensifying its relentless, weekly pressure but I can cope if the end is still in sight.  

Hold on little white blood cells, we're nearly there. 

Ouch - Neupogen

Ouch.

Now that I am neutropenic (with a titchy white blood cell count), I can't have chemo this week and instead I have to have a course of 5 injections of Neupogen to boost my bone marrow.

And Neupogen has put my Taxol aches in their place.  The first injection was fine but today the nurse arrived to give me the second and, soon afterwards, the bones in the base of my spine, hips and upper legs started up a major protest.  I even skipped my exercise class, thus breaking my own rule to keep moving no matter what to get through the symptoms,  but today even walking felt something of a challenge.

So I sat on a hot water bottle at home instead.

At least the pain reassures me that perhaps the injections are working. It is a little scary walking around snotty, sneezy, wintery Brussels with a white blood cell count of only 200.  Basically, my immune system can't fight off anything just now, so I'm keeping everyone at arm's length and using antiseptic gel on my hands all the time. My husband would rather that I just stayed at home but I pointed out that most days I end up in a lift with a load of sick people at the hospital anyway so I can't see the harm in making my coffee date. 

And I was an utter rebel today - I had a real, caffeinated latte!  Coffee is supposed to reduce the effectiveness of Taxol but I figured that it couldn't do much harm if I have to have a week off from Taxol anyway.  Oh my, did it taste good!

I'm not sure what to do about the pain.  The doctor told me yesterday I could take paracetamol or neurophen if I needed it.  But my oncologist warned me about taking anything which might mask a fever: if I get the slightest temperature I have to rush to A&E in case I end up with sepsis.  Anyway, this morning I felt so rough that I daringly took a paracetamol and that did take the edge of it.

At least the injection itself doesn't hurt, it goes straight into the roll of fat at my stomach and I don't feel a thing.  It is annoying to wait at home for the nurse though, and I'm too much of a wimp to stick a needle into myself.  So the nurse showed my husband how to do it and tomorrow he will become my nurse.

My husband is a highly talented person who could turn his hand to most careers.  But being a nurse is definitely not an obvious choice for him.  And yet he has already surprised me: after my mastectomy he had to change the dressings and clean my newly scarred boy-chest.  Not, I am sure, what he imagined when I swept down that aisle in my white princess dress and he looked me in the eye and said, 'In sickness or in health.'  

I love him more than ever for it.

But I'm still rather nervous about him sticking a needle in me tomorrow.

A Good First Week on Taxol

I can't believe how good I feel today.

Not just 'coping with everything well' but actually bouncingly, energetically, happy good.

It's easy to only post when problems surface so today I wanted to take a moment to remember that there are good days too: days like today when I was up early despite being home late last night after seeing Peter Gabriel live, saw friends, exercised and still feel full of fizz. 

Not bad for someone more than half way through their chemo.

Last week I started the first of nine weekly doses of Taxol - having been advised that my white blood cell count was too low to allow me to have Taxotere once every three weeks as planned.

I wasn't pleased to be faced with having chemo every single week but the first week of Taxol has gone pretty well.  I was surprised to suffer from mild, morning nausea the first few days as I didn't have any nausea with FEC but I guess that's the way it goes.  I was even more surprised to find my cheeks were burning all day the day after chemo but a quick Google confirmed that it's a reasonably common side effect (and not really a problem if you can ignore the sneaking suspicion that you've done something really embarrassing to merit your flaming cheeks).  And then the hot flashes in the night had me repeatedly throwing off the duvet and then pulling it back on as I froze five minutes later...just as well I've already opted to vacate the marital bed during chemo or I'd have driven my husband mad.

I had anticipated the aches in my legs and chest from day three, but they were no worse than the ache you feel after an over strenuous work out.  And finally, my fingers and toes started tingling which suggests that neuropathy (numb fingers and toes) will follow in later sessions. 

But, so far, nothing to stop me doing what I'd planned for a busy week.  So, overall, I think I'm glad to have escaped the 'Taxotere truck' as I've heard others describe the onslaught of Taxotere symptoms.  Of course, symptoms are cumulative and I have 8 sessions to go... but I'm taking one step at a time.

The best news came this morning when I went for my blood tests.  Last week, my white blood cell count was 1,100  - marginal even for Taxol (and too low for Taxotere), so I was sure that it would be lower still this week as there hadn't been much time for my body to recover from the last dose.  But it has actually doubled to 2,200!  It's still half a 'normal' white blood cell count which should be 4,500 but quite high enough to allow me to have my second dose of Taxol tomorrow.

One down, eight to go. 

So far so good.