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.

Why I'm Finally Celebrating the End of Chemo

"What are you doing to celebrate?"

This was the question everyone asked when I told them that I'd had my last session of chemotherapy.  And why not?  We'd made a policy of celebrating every step of the way so surely we'd have a big celebration planned to mark the end of the chemo era?

The only problem was that I didn't feel like celebrating.  Give me a week, I told people, when I feel better and then we'll celebrate properly.  But here I am, two weeks later, and I still don't feel like a celebration.  My arms and legs still ache and feel weak.  I get short of breath if I attempt more than one flight of stairs.  When I look in the mirror I see a bald head, no eyebrows or lashes and ugly red Taxol cheeks.  My nails are brown and painful.  And I don't sleep well thanks to ongoing hot flashes and embarrassing itching. 

I'm still waiting to celebrate being free of chemotherapy.

Today, however, I met good friends for a catch-up lunch and we went somewhere I have wanted to go for ages - the restaurant on the top floor of the Brussels Museum of Musical Instruments, a beautiful art deco building with great views over town.  As our food arrived, it occurred to me that I would normally be at hospital at that time, every week, with a needle in my arm.  I might not feel better yet, but at least I don't have to do that anymore.

I took my first bite of delicious steak, shared a laugh with my friends and looked out over the domes and rooftops of Brussels - and raised my glass to celebrate the end of chemotherapy.

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.  

Sugar: Good or Evil?

Recently a friend with breast cancer forwarded various links to websites claiming that 'sugar feeds cancer'.  What do you think? she asked me imploringly.  Do we have to cut sugar out of our diets to beat cancer?

Sigh.  On top of everything else we are going through, do we really have to give up the little sweet treats that get us through?

I checked out the links and could see why she was alarmed.  'Sugar and cancer are in a death grip' one proclaimed ominously.  Cancer feeds on sugar, therefore the answer must be to cut all sugar out of our diet and starve the cancer to death.

Like most things scientific, it seems that the truth is a lot more complicated.

The excellent link below to Cancer Research UK debunks a number of 'myths', including this one.

First of all, they explain that our body breaks our food down into building blocks.  Sugar, the white stuff on the table, is broken down into the building blocks glucose and fructose which are used to feeds all the cells in our body and give them energy to do their jobs.  Glucose is supposedly the evil villain which is feeding our cancer.

Eating sugar will obviously release glucose into your system.  But actually, glucose comes from other sources too.  Like milk.  And even vegetables.  Our cells, including the cancerous ones, don't mind a bit where their glucose-food came from originally.

Now it is true that most cancer cells grow fast and therefore gobble up more glucose than most other types of cells, often up 200 times as much (this is known as the Warburg effect after the scientist who discovered it).

But other cells need glucose too.  In fact some pretty significant cells also need large amounts of glucose to do their jobs.  Cells in our immune system and stem cells gobble up glucose too, and personally I'd like  my immune system to be in tip-top condition and for my body to be able to replace old cells with new ones.

Your body knows it's got an army of cells that need feeding and so it will do its best to keep its glucose levels stable whatever you eat.  Even if you starve, your body will find other ways to make glucose for as long as it can.

And more recent research has shown that it isn't even true that all cancer cells need a high glucose diet.

The more you dig into this, the more you realise that the picture is very complicated.  Simplifications like 'sugar feeds cancer' really don't help much.

But before we scoff down a bag of cookies, there is another message out there which is super simple as well as being consistent and supported by every scientific study.

A healthy diet - high in fruit and vegetables and low in sugary and processed foods - combined with exercise and not being overweight is the best way to combat a whole variety of horrible diseases.  Including cancer.

So this is my simple conclusion.  My best way back to physical health is to eat healthily, exercise steadily and keep my weight under control.  But my mental health is also important.  If the odd bit of chocolate or a sticky pudding, taken in moderation, can get me through the stress of life with a smile on my face...then that's just fine too.

http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#sweet-tooth

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. 

Cancer: Bad Luck or the Best Way to Die?

This week the news revealed a few fascinating cancer-related stories.

The big headline was about why we get cancer: researchers at John Hopkins University School of Medicine have concluded that it's basically bad luck.  Only a minority of cancers are caused by lifestyle, environment or genes, most of us just had cells that made random mistakes when they divided.  You can just imagine the daft cell in my breast that got bored with making exact replicas of itself and one day decided to spice it up a bit (how about swapping this bit of my DNA with that one, how does that look?  Er, actually looks rather scary...oops).

I have mixed feelings about shrugging it off onto bad luck.  On the one hand, it's a relief to think that it isn't my fault that my family and I are going through the misery of chemo (there's always that little guilty voice that wonders...if only I'd exercised more/eaten bio products/or even that weird one, not used the microwave so much...). 

On the other hand, 'bad luck' leaves us powerless to prevent the nightmare of recurrence.   If it's just down to some daft cells then I can't do anything to stop it happening again.  And apparently those of us with Lobular Breast Cancer in one breast have notably increased chances of the cells in our other breast being equally daft at some point.  

Anyway, a little more digging reveals that this research didn't include breast cancer because the existing information on stem cell division rates in this part of the body is unreliable.  So I'm going to stick with the research that showed that exercise can reduce chances of breast cancer recurring and my new year's resolution is to get fitter...even if that comes with a faint reproach that perhaps I should have joined a gym ten years ago. 

At least science isn't just shrugging its shoulders and saying, bad luck guys, time to die.  Which is basically what the lovely Dr Smith has said in the British Medical Journal.  Cancer is, he claims, the best way to die and a jolly good thing for an ageing population.  Bonus all round - we get a protracted death which gives us lots of time to say goodbyes to our loved ones and the planet gets a bit more room when we've gone!  Thanks Dr Smith but I am not yet prepared to 'say goodbye...listen to favourite pieces of music..and prepare...to meet [my] maker.'  I'll stick with my own doctor and take the chemo if it's all the same to you.

And finally, that brings me to a lovely story which shows that nature has its own sense of harmony and balance.  Josie Conlon is in the news because her 2-year old collie dog, Ted, discovered her breast cancer.  She was alerted to the problem when the dog urgently nosed and whined at her breast: tests revealed a particularly aggressive tumour that was caught in the nick of time.  Crazy?  Not so!  Dogs have already been shown to be able to diagnose a number of diseases and there are now trials on-going with dogs able to sniff out breast cancers.  It's still in early stages, but how lovely to imagine a future where cancer can be diagnosed by an enthusiastic, wet nosed doggy instead of flattening your breasts for a mammogram. 

So there you have it, most cancer might be largely bad luck but regular exercise could still reduce your chances of breast cancer coming back.  Best way to die or not, I'm thinking it's time to get a dog to take on brisk walks in the park.  I've got a lot of living to do yet, Dr Smith.