Every week, people ask me how I’m doing. This is great, and knowing so many people are behind me makes such a huge difference, that you almost feel guilty telling people how well you feel.
But behind every good tale there’s a far bigger picture, which you don’t always have the time, energy or inclination to explain.
The artificial army
People seem to know about the major side effects of chemo – the sickness, the fatigue etc. And the doctors do a lot to try and ease these by prescribing a cocktail of drugs – some to offset the chemo, some to balance the side effects of the chemo, and others to tackle the side effects of the side effects…
Everyone is different, and they prescribe what they think is appropriate for each individual case or patient. For me, the recipe is something like this.
The night before chemo, I take my Dexta. This is my marmite drug – it does a great job at doing what it’s meant to do, but has side effects of its own which are frustrating beyond belief (but I’ll come to that later). I also take this an hour before chemo, along with another drug called Grani Auro. Grani continues into day two, and reappears on days seven and eight. Meanwhile, on days one to three, I also take another drug called Emend (which I affectionately call my horse tranquilizer – it’s huge). For a little extra kick, I also have the option to add a dash of Meto, just in case my cocktail isn’t strong enough. This concoction can cause additional side effects, for which I also have Mag to hand, just in case I need that too.
I feel smashed just thinking about it! But yes, of course, I have it all on a spreadsheet 😉
The numbers game
Despite the drugs, there’s also a heap of stuff you can’t control. And this week, this is what’s hit me. Despite the drugs doing the best job they’ve ever done (I’ve felt zero side effects, none at all!) I’m in quarantine. Yep, I’m confined to my apartment, unable to take advantage of the energy (and the snow outside!). Why?
Before each chemo treatment, they check my bloods to make sure my body has recovered enough to take the next hit. When they did this a few weeks ago, my reds were too low, so my schedule slipped a week and I was gutted. So I focused hard on all the things which increase your red blood count (iron, protein, etc) – I went to France, drank vin rouge, ate fromage and lived off charcuterie 😉 My red count went through the roof (boom!) and I was back on track. However, when they checked my bloods this week, the reds were still fine but my white count was low. ‘Normal’ is considered anywhere above 1.0 (my previous counts have been 2.4, 3.4, 2.5 and 2.9) but on Monday they came back at 0.7. Bugger. They were happy for me to continue treatment, but sent me home with the words “You have almost no immune system, so avoid busy places and don’t let people sneeze on you!” Right. OK.
I know the Dutch are practical and direct, but short of wearing a sign saying “don’t sneeze on me please, I’m running on empty!” there’s not a lot I can do here, except stay at home. On Thursday, I did venture out for a walk around the block, but in sub-zero temperatures even a huge coat and two hats won’t stop your nose running, which then just invites the inevitable. So I’m playing it safe; staying at home, drinking OJ, eating green veggies, chicken, tuna, yoghurt, and pretty much anything which will help boost those little white cells.
The physical fight
It’s amazing how much this disease teaches you about your body.
On the outside (apart from a slight lack of hair) I look normal. And with my body’s incredible response to chemo so far, you could forgive someone who recently told me that this has been a walk in the park for me.
But on the inside there’s heaps going on, both mentally and physically, which people just don’t see. And that’s where the real battle is. The mental bit is a whoooole different discussion (which I’ll save for another day), but this week, the physical fight is the one I’m fighting behind the scenes.
When you get ill, people share advice like “feed a cold, starve a fever”, you dose up on Lemsip or Beechams, you wrap up in bed for a day or so, and you “sweat it out”. But this is all based on the assumption that your body has an immune system which kicks into action, and you’re just giving it a helping hand. But when you’re consciously injecting drugs into your bloodstream which kill your healthy cells and knock out this immune system, there’s no defense against the simplest of infections.
This morning, I was putting moisturizer on my legs, and managed to graze my left hand with the nails on my right (as you do!) But I now have a cut on my hand, anything can get in there and I’ve nothing to stop it. So I’m wearing a plaster – for a little cut?! It feels pathetic!
I can’t let myself catch a cold or flu, so I touch things with gloved fingertips, open doors with my arms/elbows, avoid people breathing on me, and when someone coughs within a 10 metre radius I dive my face into my coat to avoid anything airborne – it’s ridiculous!
In the past couple of days, I’ve sneezed a few times when I’ve woken up, and have a little catahr in my throat which makes me cough. When I cough, I spit, then rinse and gargle with salt water. I then clean the sink, wash my hands and apply antibacterial handwash. It’s a delightful routine! But when I can’t rely on my immune system to do the basics, I have to do everything I possibly can to fight the slightest thing which could make me ill, because if I get ill, things get complicated.
Then comes food – without going out, I’m not exercising, so I’m not burning off calories. I therefore don’t want to eat too much, but know I need food to give my body the fuel it needs to repair. So I walk to the back of my house and back regularly, just to keep moving (how lame does that sound?!) and I was doing some basic exercise at home – squats, mountain climbers, russian twists, sit-ups, press-ups etc – but I daren’t detract my body’s strength from doing what it needs to do to rebuild my immune system.
It’s infuriating! Especially for someone who thrives on training! But it’s not forever; in the same way that my red blood cell count bounced back last time, my body’s natural defence system will undoubtedly regroup. I just need to hold the fort in the meantime.
So bring on the box sets, no walks in the park for me this week, I’m digging in to fight the physical fight!