Thanks Neupogen - A Good News Update

Last week I reported that my white blood cell count was stonkingly low so I had to have a week off chemo as well as the dreaded five day course of Neupogen injections ('Ouch - Neupogen').

Day two duly delivered back ache and leg bone agony and I was dreading the remaining injections.

But I have good news to report: the next morning the pain had utterly vanished.  I had the third injection with a the glum certainty that the pain would be back by lunchtime....and it wasn't.  In fact, the rest of the course passed without incident. 

My husband did a splendid job of sticking the needles into my belly every morning and today I have been feeling much better.

I'm told that you can't tell whether your white blood cell count is up or down but I don't believe a word of it.  A few weeks ago I posted about how remarkably well  I was feeling and, hey presto, my blood test revealed my highest count yet.  And last week I was really struggling to cope - hardly surprising as my count was so magnificently low.

Today I might not exactly have as much bounce as a Tigger but I could definitely compete with a small frog.  So it was more with relief than surprise that I got my blood test results and found that my white blood cells have recovered.  They're still on the low side but they're high enough - so back on Taxol tomorrow!

Neupogen did the job and I survived a horribly low white blood cell count without catching a thing - despite the snotty kids.

On the other hand, I still have six Taxol to get through so it seems a pretty good bet that my bone marrow is going to struggle.  I asked the doctor what we could do about this and the short answer was...not much.  A low count will mean another missed week and another course of neupogen.  So I don't think I've seen the last of neutropenia and all these delays mean that chemo will end up stretching further and further into January.

But if there's one thing that chemo has taught me, it's to go with the flow.  So for now I'm just enjoying my restored white blood cells and my little frog bounce. 

Eyebrow Denial

The hair on my head fell out first, followed by the hair under my arms and on my legs.  Even my nose hair fell out. 

But my eyebrows have hung on.  Or at least, so I have told myself.  Okay, they might not be quite so full but not that anyone would notice, right?

Then the other day I was chatting with the ladies in my hospital exercise class, some of whom have finished chemo and are now sporting short, grey hair on their heads.  We were discussing the loss of eyebrows and one of them looked at me sympathetically.

"Yes," she said.  "I used make up when I was like you.  Otherwise you just look ill, don't you?"

When I got home I had a proper look in the mirror and realised that I have been in Eyebrow Denial.  The poor things are looking patchy at best.  And it's true: thinning eyebrows do make you look sick.

So what to do?

If I'd thought about it before starting treatment, I could have gone down the tattoo route.  But it's not advised for people with dodgy white blood cell counts as it can risk infection (thank goodness, I'm far too much of a wimp to let a needle anywhere in the vicinity of my eyebrows anyway.)  There are also eyebrow extensions - i.e. stick-on eyebrows.  Hmmm, I usually take off my wig with a sigh of relief as soon as I get home.  I'm not sure I want to be sticking hair on my face.

So that leaves make-up.  Eyebrow stencils are, apparently, a must for people who have no eyebrows left, but you can do some pretty effective filling in when they are merely patchy.

One good tip is to use a photo to remind yourself what they used to look like so you can recreate the look (don't depress yourself by digging out a pic from the days of well groomed locks - choose a Bad Hair Day Photo where your hair looked greasy and lank so you can comfort yourself with how much lusher your hair will be when it finally grows back).

Then take an eyeliner pencil in a shade lighter than your natural colour.  Don't use black or you will look as if you are preparing for Halloween.

Put the pencil alongside your nose and put a dot where it meets the brow.  Then rotate it at the corner of the nose, over your cheek and eye and put a dot at the far corner.  Now you know how long it should be.  Fill in with short, feathery strokes in the direction of growth.

Finally brush over some powder in the same colour as your existing eyebrows to blend in the lines so they don't look too harsh.

Now take another look in the mirror.  There is a good chance that your eyebrows will now look weird.  This is where your old photo comes in: take a good look at that and I'll bet that your eyebrows looked pretty weird then too.  After all, having a curve of hair above the eye just IS weird and the only reason we don't notice is because no-one ever actually looks at eyebrows (unless they are super hairy, join in the middle or are chemo-absent).  So don't worry, so long as you have done a reasonably passable job, no-one is going to look at your make-up eyebrows long enough to notice they aren't real.

Except of course, for your fellow chemo-sufferers.  And we'll probably just ask for tips.

So now I spend a few extra minutes in the bathroom in the morning painting in my eyebrows.  I can't complain about that - just think about all the time that I save by not washing my hair and shaving my legs!  The question now is: will my eyelashes make it?

Anyone for Fancy Dress?

I got out of a  hot bath the other evening after soaking my achy bones and put on my red dressing gown.  I left my bald head uncovered, took out my contact lenses and put on my gold rimmed glasses.

I was just about to brush my teeth when I glanced in the mirror and got the shock of my life....a Buddhist Monk was staring back at me.

Honestly.  A Total Dead Ringer.

I'm dying for someone to have a fancy dress party 'cos my costume's all sorted.

The Write Way Through Cancer

I've just discovered that I'm not quite as crazy as I thought.

Back at the end of June when my doctor uttered that terrible word ... cancer... the first thing I did when I got home was start this blog and write down how I felt.  It was almost a physical need to get it all out of my head and into black and white.  Then I knew I might get at some sleep that night.

A pretty crazy response to a cancer diagnosis?

Apparently not.  According to studies done by James Pennebaker, writing can help people deal with heartbreak,  tragedy and anxiety.  And cancer.  Therapists have been telling us for a while that talking about our troubles helps us cope but we all know that it can be difficult to find someone to talk to about cancer.  With all those hospital appointments, there's no way I'll find time to talk to a therapist.  I'd talk to my husband but, frankly, he has enough to be coping with.  It helps to talk to my friends but I don't want to spend every social occasion going on and on about my cancer.  Anyway, that can be a bit scary, right?  James Pennebaker says:

"The killer problem is when you talk to a friend or even a therapist, you’re putting yourself on the line. For it to work that other person has to be completely accepting, and the reality is we don’t tell our friends a lot of really deep and personal things because we think it might hurt the relationship. That’s the beauty of writing. You don’t have to worry about other people looking down on you or feeling nervous about putting yourself out there."

But tapping away at a computer keyboard is not quite the same as sharing a coffee with a friend.  Can it really have the same effect?  Yes, says James Pennebaker.

"Across multiple studies, people who engage in expressive writing report feeling happier and less negative than they felt before writing. Similarly, reports of depressive symptoms, rumination, and general anxiety tend to drop in the weeks and months after writing about emotional upheavals (Lepore 1997). Other studies found improvement in overall well-being and improved cognitive functioning (Barclay & Skarlicki 2009)."

According to his analysis, writing helps us sort out our thoughts and make sense of them.  We need a sense of being part of a story rather than simply being buffeted by the misfortunes of life.  Blogging was an addiction that I discovered when I was fortunate enough to live in Africa for a few years.  I started as a way to keep family in touch with how we were getting on, but soon I found that I was writing for my own benefit.  I loved the splendour, the beauty, the adventure of my life.  But that came with a good dose of squalor, difficulty, setbacks and struggle.  Soon after I started blogging, we were on holiday when our car broke down in the middle of no-where and we were left trying to figure out what the heck to do under a hot African sun with no RAC to call to our aid.  Instead of being upset about a holiday 'ruined', I found myself mentally planning my next blog post.  Instead of a being a disaster, it was a great story.

So perhaps that's why I instinctively turned straight to the comfort of the blog as soon as I was diagnosed.  Cancer - that's one heck of a story!

I like blogging because it's open to those who want to read it and I know that my posts have helped others which gives me a lovely, warm feeling.  But I'm ambivalent about going 'public' with the rawness of it all so I write this under a pseudonym and I haven't shared with friends or family.  According to James Pennebaker, you don't even have to go that far to gain the benefits of writing.  Just write twenty minutes a day for four days, he counsels, and plan to tear it all up afterwards. 

"Find a place you won’t get disturbed, and I want you to sit down and just begin writing about the thing that’s bothering you. Don’t worry about grammar or sentence structure or spelling. Just write. This is for you and for you alone. Plan to tear up what you’ve done when you finish. It’s not a letter to somebody. It’s not something for you to show someone to convince them that you are right. This is for you alone."

Try it.  Take all those cancerous feelings of anger, frustration, unfairness, fear and helplessness and put them down on a page.  Work through them and get them out of your head.  No-one will judge what you have written so write exactly how you feel.

Then tear it into a million little pieces.

Honestly.  It helps.

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 third of the way through Taxol...and severely neutropenic

I'm on a downer today.

I feel as if I've done the tearful drive home from the hospital too many times.  And it always seems to be raining...  I went for my routine blood test this morning and my white blood cell count is super low;  severely neutroprenic at only 200.  So there's no question of having my weekly Taxol tomorrow and instead I need to have five once-a-day injections of Neupogen to boost my bone marrow.

It's not a big deal.  I guess I'm just not very good at coping with changes of plan.  It's another week's delay, so  it looks as if I'll be on chemo into the new year.  That's a bummer when I'd hoped to be done before Christmas.

And I'm a bit scared of this injection as I've read reports of people suffering severe bone pains - oh, I so shouldn't have Googled! 

On a more positive note, I've been coping well with Taxol.  The worst thing has been the lack of sleep: first of all I'm steroid-jittery for a couple of nights.  Then come the hot flashes that have me throwing off the duvet one minute, then pulling it back on when I'm all shivery again the next minute.  Then come the muscle aches. 

But none of the symptoms have been too severe.  I've been able to get on with life as usual, with just the occasional afternoon nap (though I did fall asleep in front of the computer once and woke up dribbling on the keyboard...). 

And I haven't been on a downward slope in quite the way I expected when they told me the symptoms were 'cumulative'.  Week two was my toughest so far with painful aches and lots of tingling in finger and toes.  Here we go, I thought.  Already this bad and still seven sessions ahead of me...  But Week Three has gone rather well with barely a tingle in my toes.  Perhaps my lovely friends who took me on a spa day made all the difference.  That sounds like a splendid excuse for a weekly spa date.

So it's only those pesky white blood cells causing the problem and there's not a lot I can do about that.  I just need to pull myself together and be grateful that it's not been worse.  And now I have tomorrow morning unexpectedly free.  Hmmm, perhaps I could fit in another spa?

Keep Moving!

Twice a week I drive up to the hospital and head down to the gymnasium in the bowels of the building.  Usually when I arrive, the previous exercise group is just finishing up but I can always tell who is in my group: the other group has babies and bags under their eyes, my group has headscarves and wrinkles.  It really doesn't seem so long ago that I was in the antenatal group myself...

My group are a jolly bunch, all things considered.  Sometimes someone has to sit down for a bit because they feel dizzy and none of us exactly drip with sweat due to exertion but we all have a go and a bit of a giggle at the same time.  Not bad when most of us are doing chemo, some have metastasised breast cancer, one has ovarian cancer, all of us have been under the knife.

We do the machines first and I always get frustrated because I have to go slowly or my heart rate flies up.  Apparently this is because of low red blood cells: the heart has to work harder to get enough oxygen around the body and so the physios circle round us reminding us again and again to breathe.  Then we do some work on the mats, the sort of small movements that look easy but cause agony by the time you've done it twenty times. Picture a hall full of women of a certain age wearing headscarves and attempting to exercise with strips of elastic and ankle weights...we must look hilarious.

And why does the hospital provide these sessions?  Because research has shown that physical exercise reduces the chances of the cancer returning.  Significantly.  In the old days they were always telling you to rest when you were on chemo, now the advice is to keep moving.  And it makes me feel better too: often I don't feel like going but I always have more energy afterwards.  Today my muscles still have the Taxol ache but at least they have a good reason to ache now! 

I have to confess that, before all this, I was getting a bit on the middle-aged flabby side.  Is it possible that I'll end up in better shape than I was before my diagnosis?  I can live in hope.