A Christmas Gift

It's Christmas week, the festive lights are twinkling, there are presents under the tree ...and Santa delivered an early Christmas gift. 

Last week those pesky white blood cells were low again so my doctor prescribed another five day course of Neupogen to stimulate the bone marrow alongside my usual weekly course of Taxol.

So my handy husband has been 'nurse' again, administering the injections in my festively bulging belly, and I have endured a week of Taxol muscle aches plus Neupogen bone pains.  It's been tough, especially during long, painful, sleepless nights.  But it was worth it.

Today I got just what I wanted for Christmas: my blood test result was NORMAL.  That's the first time since I started chemo in August.  And as a bonus gift, my blood pressure (normally very low) was also normal (clearly due to my excellent efforts to increase my salt intake as instructed.  More crisps, please!).

As the pains wear off, I'm feeling good.  It probably won't last too long as I will have chemo again tomorrow but hey, I'm going to enjoy this Christmas bonus as long as I can!

I'm grateful to be in such good shape so near to the end of chemo.  I had never expected to feel such vitality at this point, even if it is just a brief window.  My body seems to be determined to bounce back; I even have a fresh crop of fuzz growing on my baldie head.

Yah-boo cancer - you can get this babe down but you can't keep her there.

Happy Christmas everyone!

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.