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When I first found out I had cancer, I never thought I’d be drawing a comparison to Anne Frank. But having just been round the Anne Frank House, I now find myself sitting in the cafe at Prinsengracht 267, in beautiful sunshine, with my health, my freedom and my iPad, and a compulsion to write.

A place like this, a story like hers, puts things into perspective. Nineteen years ago, I lost my brother. Despite growing up bickering, by the time we became teenagers we were incredibly close and he was my best friend. So losing him was awful. Cliche it may be, but I cannot find a word to describe it. I guess that’s why I felt kind of numb and focused on other things… My parents had lost their son – how must that feel? God knows. Other people lost loved ones in even worse ways – Lockerbie, for example – at least we’d had nine days to prepare for the worst, they’d just been hit with it. So after Simon died, the mental strength which kept me going was the thought that there was always someone worse off than me.

This same mentality came out in me when I was diagnosed with cancer – ok I have cancer, but it could be so much worse. A friend recently told me about a group of her friends who are cycling across India to raise money for brain tumor research – apparently, funding for research is allocated based on the likelihood of success/improvement, so the harder a cancer is to treat, the less likely it is to get funding. I’ve no idea if this is true, but the amount of funding that goes towards breast cancer is phenomenal, and the improvements in treatment as a result have been amazing. So if I’m going to have any kind of cancer, I feel lucky to have this one.

I’m nearing the end of the first part of my treatment – chemotherapy – which is perhaps one of the craziest things anyone would voluntarily put themselves through; so crazy that many cancer patients opt not to, in favour of almost anything else. I opted to go for it – nasty as it is, if it kills the cancer it’s the lesser of two evils, right? The journey has been horrible, but thanks to the drugs I’ve been taking to offset the side effects, it’s nothing like as bad as it could have been. Many people have it a whole lot worse.

OK so I’ve had to spend months at home, unable to go out of the apartment for long periods of time, unable to train, unable to travel, unable to socialize, unable to go to work… but reading extracts of Anne Franks’s diary today, seeing where she and her family had to hide, and reading about their ultimate demise, what on earth am I complaining about?

I have air in my lungs, sun on my face (yes dad, I have sunscreen on, don’t worry!), space to walk and the freedom to do all these things without fear for my life. There are millions of people out there, even today, who do not have any of this; who cannot walk to the end of the bed, let alone the end of the street, who are in hiding or fear for their lives, who have no idea if their loved ones are alive or dead…

…and here am I, sitting in the sunshine, in a cafe on a canal in Amsterdam, writing my blog on my iPad, with a cup of tea and a stroopwafel, planning how I’ll make up for lost time; who I will visit when I can travel again, where I will go to explore and inspire myself, what I’ll get stuck into when I get back to work, how I will celebrate my 41st birthday…

It’s all about perspective, and there’s always someone worse off.

#humble #thankful #positive #strong #hopeful

#luckyboxy

They say that when you don’t talk to someone for a while, or you have an argument, you shouldn’t sleep on it – it’s best to clear the air before it becomes difficult to know where or how to start talking again.

Having not written a blog update for about a month I feel a bit like this now – not quite sure where to start. Perhaps the first thing to do is explain why I haven’t written for so long.

I kind of eluded to it in my last post, when I said the mental battle was a whole different conversation. At that point, with hindsight, I think I was probably on the verge of a downward slope but not yet ready to talk about it. And I haven’t been ready to talk about it since, hence the radio silence. But after a few days in the real world – one which isn’t built around me, my blood levels, my apartment, my hospital visits, Nike, or Amsterdam – I now feel on the up again, and in a better place to talk about it.

In short, my mental strength and positivity just ran out. I had a few setbacks, one after the other, followed by uncertainty and disappointment, followed by a lifeline, which then disappeared at the last minute, and I just didn’t have the strength to be “Little Miss Positive” anymore.

In isolation, each thing that hit me wasn’t a major issue, and I’d typically have just said “this is ok, we deal with it and move on.” But like the chemo treatment, every time you take a hit your resilience reduces, and eventually the last hit just takes you out. That said, the way I reacted to the individual things was, I think, also part of the problem.

So what happened?

The first thing was work (quelle surprise!) Someone new was assigned to cover my role. The thinking behind this was bang on – they still needed someone who could be there when needed (not someone who was there one week and not the next) and they wanted to give me space to focus on my wellbeing. But as work is such a huge part of what makes me tick, it had the opposite effect on me. I went from going into work regularly (staying in touch with people, projects, my support network and just a sense of normality) to feeling like I c/shouldn’t be there (as it would confuse people having me and my cover around at the same time – who’s who, who’s doing what…?) Even if I wasn’t able to pick up projects while I was off, still being around to support my team gave me a sense of purpose and helped me feel I was still part of the team.

But I tried to think beyond all that and do what they told me – focus on my wellbeing. I was aware that my immune system wasn’t super strong and that my platelets had taken a hit. So I started to stay home and avoid contact with large groups of people, to remove as much risk of infection as I could. I was entering the final quarter of my chemo plan and didn’t want to screw things up. 

Then there was training; I was missing training like crazy, I could feel the steroids taking take their toll on my body, my clothes weren’t fitting any more, and there was nothing I could do but watch it happen. 

But again, I tried to work around that. I ordered a couple of training balls and figured that at least I could do some little bits in my lounge. And it worked at first – my mental strength started to come back as I felt better from training, I hadn’t had a cough, cold, sniff or sneeze for a couple of weeks, and I was totally ready to hit cycle three of chemo HEAD ON. 

Then came the biggie; when I went to hospital for my bloods on the Monday morning, the nurse even commented on how excited I was about chemo! My response was “I’ve only got four left! Cmon!!” My friend Lucy was over and we went back to hospital on the Monday afternoon for chemo, only to be told that my bloods hadn’t recovered enough… WHAT?

Bang. Stopped dead in my tracks. How could I not be strong enough? I’ve been so good? I feel incredible? This can’t be right? But it was, and it got worse.

My Oncologist was considering reducing my dosage, to give me the rest of my treatment in smaller doses over more sessions, because my bloods weren’t recovering fast enough. WHAT?

So they’d taken me off the bus (stopped my treatment) AND were moving the finish line further way, and not telling me how much further away it was getting.

The following week was shit. I had to wait to see how well my bloods recovered before they’d confirm if my plan was changing. All the things I’d been focusing on to get me through chemo had suddenly gone – the countdown, the end date, the holiday afterwards, although by that point I really didn’t give a shit about the holiday, I just wanted chemo over with. It wasn’t getting me with side effects, it was totally screwing up my head and I was getting more and more depressed. 

Then came a lifeline. My best friend Alex had been planning the party of the century – she’s a party planner by profession, but this was her own 40th birthday party so it promised to be epic! I’d said from the start that I was unlikely to be able to go because I’d be in between chemo sessions. Al understood totally and kept me involved as the plans evolved, so at least I still felt part of it, but I was gutted that I couldn’t go, as it was my best mate’s big weekend and I wanted to be there for her. But on the Wednesday it suddenly dawned on me that, as I hadn’t had chemo on the Monday, maybe I could actually go?! I could get the overnight ferry (no way I could fly), sleep in my cabin all the way there and back, and travel by car (so avoiding public transport)! OK I couldn’t go to the party, but I knew Al was having her nails done in north London in the morning, so I could just turn up at the salon and surprise her, sit and shoot the breeze while she got pampered, then head back to the ferry afterward! It was only an hour’s drive each way, a good sleep in between, no risk of infection, and I’d get to see my best mate on her birthday! So I bought the ferry tickets and suddenly I had something good on the horizon!

Unfortunately Storm Doris had other ideas. I spent all day Thursday listening to the shipping forecast and on the phone to the ferry company, and by 7pm had to make a call on it. Doris had done her worst in the UK but was heading over to the Netherlands, so as my ferry sailed across the North Sea, it’d be going right through the eye of the storm. Force 10 gales and very rough seas – I’ve never had any kind of travel sickness, but if I got ill in the middle of all that, with a low immune system, things would get very complicated. It was a risk I couldn’t take, so I didn’t go. Instead I just sat at home and cried. And cried. And cried. 

By Monday morning when I went back to the hospital for my blood tests, I was beyond caring what the results were. If I felt great, it didn’t seem to matter. If I felt ill, I didn’t seem to matter. I just felt numb, I let them take the blood and came home again while they decided what to do with my treatment plan.

By this point, a few people were starting to wonder why there’d been no chemo photo on the Monday, and no blog update during the week, or the previous week…? I’d told my close friends and my parents what was going on. It was tough – I needed to be straight with them but didn’t want to worry them. But good friends and family tend to see right through you and they could tell I wasn’t happy. So waiting for the call from the hospital on Monday with my blood results was like waiting for a child to be born – regular texts asking “any news…?” and “please let me know asap!” And it reminded me that it’s not just me going through all this; I have a huge network of people who are right behind me.

When the call came, the nurse told me “your bloods have recovered enough for chemo today, so we’ll see you at 1pm” …OK we’re back on the bus… “but Dr Kerver wants to reduce your dosage to 75%” … at which point I’m desperately trying to calculate how many extra sessions would be needed to give me the remaining chemo at 75% of the original rate… “but he’s happy at that” …That? What? Happy at what? “So your last session will be 27th March.” Hang on, no extension? No extra sessions? Nope, just the three remaining sessions as planned. 

So, I’m back on the bus, I have a finish line, and it’s no further away! 

At this point I should have been bouncing off the walls, but having been so mentally exhausted over the past few weeks, I didn’t bounce back straight away. Instead, I called my parents and asked if I could come home for a few days. 

While all this is happening in my world, talking to mum reminded me that there’s a world going on out there which doesn’t revolve around chemo, hospital visits, blood tests, missing work and training. However much I think I can cope with this, be strong for everyone, and show cancer that it’s not in charge, there are other people involved in this too. Going home for a few days would give me some R&R but also show my parents that I’m ok, and give them one less thing to worry about. It made me realize that, in the same way that I need to feel I have a purpose, feel included and feel and part of the team at work, my parents have exactly the same feelings with my fight back against cancer. 

So this week, I used the tickets I saved from Alex’s birthday and took the ferry home to Yorkshire to see my parents. I planned to go up the White Horse to see my brother, maybe a ride out to Whitby, Roseberry Topping, Hutton Le Hole, the obligatory visit to Betty’s and a Minster photo or two. But instead, I just spent two days with my mum, drinking tea, putting the world to rights and meeting up with her friends at their ‘Friday morning coffee club’. 

So what now?

I’m on the ferry back to Amsterdam. I dock at 5:30, collect Kari from Schiphol on the way home, and get ready to fight again!

On Monday we’ll head back to the hospital to show this thing WE ARE BACK – we’ve taken a beating, but we are NOT beaten!

The nurses have confirmed when/where I can go on holiday, so I’ll book that on Monday.

I’ve brought some proper (Yorkie) chocolate back for my team, so will go into work this week and see everyone again. 

And my last chemo session will now be on 27th March – my 40th birthday. So Sarah, Alex and Kari are flying over and coming to hospital with me – we’re going in armed with cake, balloons and (non alcoholic) bubbles, and we’ll rock that place for the last time!

Mum says it had to happen at some point – there’s no way I could get through all this without breaking down, but you know what I reckon…

#speedbumpnotaroadblock

#BoxysBack xx

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!

#BoxyOut