I Don't Want to Slow Down!

 "I can't do anything!"

My cry of frustration came at my hospital exercise class.  I was on the exercise bike, pedalling ridiculously slowly, and my heart rate monitor was already beeping warningly.

"You need to slow down," the physio told me reprovingly, seeing my heart rate zoom well over my 'safe' range'.

"But I am going slow!" I wailed.

She looked more closely and asked, "When did you last have chemo?"

The truth is that weekly Taxol provides no opportunity to take a break on chemo days or you'd never do anything at all.

I shrugged sheepishly and confessed, "This morning."

"There you go then," she said with an exasperated sigh.  "Slow down!"

But I don't want to slow down.  I have two primary-aged children who are full of primary-aged energy and want me alongside them.  It's almost Christmas and I want it to be a 'normal' Christmas.  I want to help at my daughter's school Christmas party while she is still young enough to want me there.  I want to make mince pies like every other year.  I want to have a fun school holiday.

So the first day of the school holidays I plan to take the kids for a long promised trip to the ice rink.  I ask a good friend if she and her kids would like to come with us.

"Are you sure it's a good idea?" she asks me.  She knows I had chemo the day before and I'm now also on a course of Neupogen shots because I'm heading towards neutropenia again.  She knows that I did help out at my daughter's party and went to my husband's office party... and that I'm utterly exhausted.  "You're tired and it'll be cold, not good for aches and pains."

But I am determined so she agrees to come along.  It's utter chaos when we get there: everyone else had the same idea and the ice is packed.  It's exhausting just getting through the crowds to get our skates and the noise is unbelievable but soon I'm on the ice with the kids and having a great time.  We hold hands and go in a long line together.  We go one behind each other and make a train.  We do loops and try to go backwards and soon they want to play tag like we usually do.

But all of sudden I have a problem.  I can't see.  This isn't a new chemo side effect, it's an old friend come to visit, one I haven't had for a long time but I know all too well.  There are flashing lights in front of my eyes and I have a migraine coming on.

I stagger off the ice and thank my lucky stars that my friend came with us: she finds me paracetamol and water (I don't even have any pain killers on me, how stupid is that when I should at least have been expecting bone and muscle aches?  I am living in denial of my sick person status perhaps).  I breathe deeply and find that eases the problem, perhaps it was just over-exertion after all. 

I feel better and offer to take all the kids home to my place.  Gently but firmly my friend insists that they are all going back to her house.  On the one condition that I go home and sleep.  I protest but not too vigorously and when I get home I realise that she is right.   I fall straight into bed and sleep for two hours straight.

When she brings back the kids she says, "You need to slow down."

Well, maybe.  I'm certainly glad that I didn't take the kids ice skating on my own as originally planned.  But I'm also super glad that I made it on the ice with them and had some fun, for a while at least.  So, what's the moral I am taking from this story?  Life doesn't have to completely stop while you do chemo - if you feel well enough then you should keep doing as much as you can.

Just take a friend to make you slow down when you are doing too much.

Everything comes in twos

Sometimes nurses are like buses: you wait and wait and finally two arrive at once.

I arrive on time for chemo and am duly assigned a bed, where I organise myself comfortably as usual with my book, phone, headphones, water and snacks on the table and (of course) my woolly socks on my feet.  I start a book and wait....and wait.  It is a whole hour before two nurses bustle in at once, full of apologies - they both laugh to see the other and one stays to insert the IV while the other bustles off to the many other jobs that need doing. 

Pre-Christmas isn't the best time to be fitting in weekly chemo sessions apparently, everyone is trying to pack in appointments before the festive season arrives so the nurses are rushed off their feet.  The two December general strike days we had here in Brussels haven't helped either; the hospital did its best to  carry on serving but it wasn't easy for staff or patients to get there with no public transport and blockages on the roads.  (I was lucky enough not to have treatments planned for the strike days though I did have to go for a blood test on the day of the police protest.  This one took the form of stopping every car to check papers and do breathalysers and generally slow the traffic down.  Bonne fete everyone!  I managed to outfox them though by taking a winding back route, hunched over my sat nav and swearing at it every time it tried to direct me back onto the highway.  It all adds zest to my routine, I guess).  I hope we only have two strikes though I suspect that Belgian militant tendencies combined with austerity measures mean that we are in for some more.  The kids will be thrilled - the schools close on strike days as well.

Today my theme of twos carries on when my doctor makes an unusual appearance by my bedside.  My white blood cells have plummeted from last week's glorious high and are low again, not too low for chemo today but low enough that the doctor doubts that I will be able to go ahead next week without intervention.  So I will have a course of Neupogen alongside the chemo this week.  Two treatments at once equals Taxol muscle aches plus Neupogen bone pains for five days, yippee!  Still, I hope that this will be enough to get me through the last three weeks of Taxol.  Wait, did I just say last three weeks?  Yes, the end is in sight!

The approaching end of chemo means that we need to start planning for the start of radiotherapy and the doctor's visit is followed by one from my lovely cancer nurse on that subject.  But she brings bad news: the radiotherapy unit in St Luc's is closed for the next six months for work.  So she suggests that I go to the hospital at Botanique instead.  Botanique!!  It's right in the centre of Brussels so driving would be a pretty awful idea.  Getting there on the metro is easy...but not quick.  That wouldn't matter for an appointment now and then, or even once a week, but radio will be every single day for six weeks.  Luckily, my theme of twos stands me in good stead because when she sees the dismay on my face she has a second suggestion.  St Elizabeth in Uccle -which is actually not much further than my current drive, though I don't even want to think about the traffic to get across town in that direction.  But these long, six months have taught me that I just have to be flexible and get through it somehow.  Six weeks will, at least, seem short after five months of chemo.

My head is reeling with all this information as the one remaining nurse finishes setting up the Taxol.  Two minutes after she departs - the machine starts beeping.  It's stuck again.  I ring but no-one comes.  On these busy pre-holiday days it seems, you either get two nurses or none at all.

My Unfair Chemo-Christmas: Ten Resolutions

It's nearly Christmas.  That perfect time of year when we are surrounded by friends and family, goodwill to all and Christmas cheer.  The time of year when we spend glorious days walking through pristine snow with our loved ones having happy snowball fights, then go home to open delightfully packed presents and share a glass of mulled wine.  We've all seen the movies!

Of course, Christmas doesn't usually work out quite like that.  In fact, it can be a pretty stressful time of year when families bicker and fall out, we all eat too much and feel ill and wish we could go outside but it's too cold and rainy.  And yet that image of the perfect Christmas infects us all, and it's the time of year when we are most likely to feel the injustice of things that make our lives a lot less than perfect.

It's the time of year when we are most likely to say - it's not fair that I have cancer!

When I started my chemo back in August, it was all supposed to be over by Christmas.  Thanks to my dodgy white blood cells, I'll now be on chemo right into the New Year.  And as I'm on weekly Taxol, that means spending a good chunk of the holidays at the hospital.  We won't be able to go back to the UK to see family because I have to be here for treatments.  Reluctantly we have also decided to un-invite our guests over New Year because I fear I'm just going to be too exhausted to cope with six extra kids staying in the house for several days.

It's not fair!

I'm not the only one to find the pressures of Christmas intensifying my misery.  Half of those in a poll done by the Samaritans said they feel low in December, with most of those finding their worries were most troubling during the festive period.  Over a third felt lonely.  A third felt anxious due to relationship and financial difficulties.  Add to that a good dose of feeling chemo-rotten, probably some extra stress on relationships due to illness and maybe some cancer-related financial difficulties too...it's hardly surprising that a chemo-Christmas has the potential to be a difficult time of year.

But even if it's not going to be quite the festive season that I'd hoped for this year, I'm still determined that it's going to be a good one.  So here are ten festive resolutions to help  me make the best of things.

1.       To forgive myself my mood swings.  We don't have to be ho-ho-ho all the time: it's okay to be angry, fearful or just fed up with it all sometimes.  On the other hand, it's worth keeping it in perspective too.  There are plenty of people out there that I wouldn't swap with.

2.       To be realistic about what I can do over the festive season.  No matter how well the chemo is going, I still get tired easily....and achy and sore and a bit miserable on some days.  But the good thing about chemo is that it seems to be the same sequence of symptoms every time around so you can at least plan to do things on days you know you are likely to feel well, and decline invitations on the not-so-hot days.  When my-laws are here, I have resolved to practice my delegation skills and be quite up front about scheduling in rest times.  The day after Christmas is likely to be my most Taxol-achy day, so we're planning a spa day.  Here's the plan - the in-laws can entertain the kids in the activity pools while I'm going to soak my achy bones in the hot tubs.

3.       To be spontaneous when I feel well.   It's not easy to book Christmas activates in advance when you don't know how bad it's going to get further down the line.  All those cumulative side effects, how bad will it get?   We spent ages wondering whether to send out early invitations to our usual mince pies and mulled wine afternoon because I didn't want to commit to anything until I had a better idea how I was going to feel - would I have a dangerously low white blood cell count again?  Then, just a few days before the date we'd chosen, my blood tests came back with good levels and I was feeling pretty upbeat.  But surely it was too late to invite people over when everyone was busy with the pre-Christmas rush?  We sent out invites anyway and had a last minute, lovely afternoon - lots of people came, perhaps making a special effort because they knew it was a big deal this year. 

4.       To opt out if I feel rubbish.  I'm not going to beat myself up about opting out of social stuff at the last minute or not sending as many presents and cards this year.  I'm going to make it as easy as possible too - no staggering around crowded shopping malls for me this year, it's all on-line shopping. 

5.       To keep to my healthy regime.  Christmas often seems to centre on eating unhealthy food and drinking too much and there's no harm in a little indulgence.  But I'm going to stick to my alcohol ban as I figure my body has enough to deal with at the moment.  I won't be getting tipsy this Christmas - and that's a great opportunity to laugh at my drunk friends!  I'm going to do my best not just to vegetate in front of the TV either and to get outside for some exercise (wish me luck with this one).

6.       To plan a chemo-menu.  Stodgy Christmas pudding might not appeal to my delicate chemo-tummy and there are days when the idea of cooking a roast makes me want to throw up.  So I'm going to delegate the cooking and make sure we've got some food in the house that appeals to me even if it's not exactly seasonal. 

7.       To avoid getting sick.  I'm doing my best to avoid catching the winter coughs and colds that are doing the rounds while my white blood cell count is low: my family are endlessly using hand sanitizer and my friends have been warned not to greet me with a kiss.  No mistletoe in our house this year!

8.       To appreciate my caregivers, especially my husband.  Christmas is a great time to say thank you.

9.       To manage the kids' expectations.  I've done my best to make sure that Christmas is the same as it usually is...but they have to understand that I might not have the energy for everything this year.  So that means some delegation again:  handing over to my parents-in-law when I have to be in hospital, having some fun activities planned for them to do alone when I need to have a rest. 

10.   To celebrate! For those of us with early stage breast cancer, we can have every hope that next Christmas, this will all be behind us.  We'll have our hair back and (hopefully) our energy too.  So I'm going to be taking lots of photos to mark this unique Christmas and next year I will look back at them and know that I am blessed to have come through it all...even when the family bickers and it rains outside.

I hope my resolutions will be enough to keep me calm and serene through the exhaustion of Christmas.  Or at least not screech at the kids or lose my temper with the mother-in-law.  Will they do the job?  I'll let you know in January.

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. 

The Healing Power of Friends

I read some astonishing research today about social networks and cancer.

Of course, we already know the importance of friends when we go through life's traumas.  When cancer hit like a speeding truck, I was amazed by the support we received: practically, emotionally and spiritually.

It certainly made me feel better.  It gave me courage, filled me with hope, carried me forward on a rising tide of well wishes.  But it wasn't going to make the cancer go away.  Was it?

According to a study published in 2012 by scientists at Kaiser Permanente, it just might.  The study showed that women with early stage invasive cancer who have strong social networks have significantly lower mortality rates than women who are socially isolated.   

At first I assumed this was probably because people with good support networks get more practical support, allowing them to rest and heal.  Apparently not.  Even allowing for these factors, the research showed that you have better chances of beating cancer simply by having people to encourage and uplift you.  Isn't that incredible?

Great news if you are already lucky enough to enjoy a network of friends who are supporting you through your cancer.  But if you are feeling isolated, then this leaves you worse off than ever with nothing you can do about it, doesn't it?

Maybe there is more we can do than we realise, starting by taking an honest look at our reaction to cancer.  I've said it before and I'll say it again: having cancer sucks.  Who could blame us for being angry and bitter about the hand we've been dealt?  People around us don't understand and can sometimes say the worst possible things, however well meaning. It's only natural to lash out at the people closest to us and then retreat.

Leaving ourselves isolated.

Our challenge is to understand that it isn't easy for the people around us either.  They don't know what to say.  They probably want to help but don't know how.  If we don't guide them, they are likely to back away.

On the other hand, offer people a way in and I've been amazed by the willingness to help and how much support they are prepared to give.  It's up to us to cultivate that goodwill and let people into our confidence.

When I was first diagnosed, I started sending update emails to my friends who are spread around the world.  It was therapeutic to write openly about what was happening to me and, before I knew it, the email list grew as more and more people asked to be included.   Normally I am a rather private person but I guess I was too caught up in the misery of the moment to realise quite what I was doing, though I did do a double-take when I announced I'd be having my breast cut off to an email list so long that I could hardly remember who was on it!   In any case, I did not intend to carry on once I was through the first few crazy weeks so, when I started chemo, I tried to draw my correspondence to a close.  I got back the resounding answer - don't stop! 

I realised that my emails involved people in my journey and helped them know that I needed and valued their support.  In fact, several have confided that my emails have helped them support other friends in similar situations, other cancer suffers who have not been able to be so candid.  People can't help you if they don't know what you are suffering through.

Give people a way in and they might surprise you.  So, next time a friend or neighbour makes an insensitive comment, bite back that acerbic reply and instead try and help them understand by being open and honest about your journey.  Involve them. Don't be too proud to accept support when it is offered - just be grateful.  Let them feel good about it! 

And if you really don't have people around you who can support you, turn to the internet.  There are many supportive groups formed in discussion forums.  Who said your support networks had to be with people you already know?

Don't sit back and wait for that supportive network to form around you.  Go out there and make it happen.  It might save your life.

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?