Running the marathon

A reminder just popped up on my calendar that I’m supposed to be running Berlin Marathon tomorrow! Obviously I won’t be, but that was the plan up until 31 May. I have run two marathons before, Copenhagen in May 2008 in 3:34 (went like a dream) and New York in November 2009 in 3:47 (struggled through having contracted a lung infection 3 weeks before). Berlin is supposed to be a fast course and I really wanted to finally break that 3:30 barrier. I would like to run another marathon next year, mainly to prove I can. The 3:30 target seems less important these days and I’ll settle for a fun marathon experience (though if I can do that AND break 3:30 I will be very happy!).

Though I won’t be running in Berlin tomorrow, the nurse who usually administers my chemo will! I think it is so cool to have a nurse that is also into running and I will be mentally cheering her on. One day we were chatting about how there are a lot of similarities between getting through chemo and running a marathon.

Of course there are differences, the biggest being that you choose to run a marathon – I guess at some level you also choose to undergo chemotherapy, but the alternative isn’t really much of a choice…. I think everyone running a marathon has moments when they think “maybe I should just stop now”, but believe me, no matter how horrible chemo is, it doesn’t cross your mind to stop. Getting through chemo is a bit like running a marathon with a sniper after you.

However, while you don’t really choose to go through chemo, my running nurse pointed out that you do choose how you react to the process. That reminded me of a comment made by a fellow cancer blogger, Helena, which inspired me at the start of my chemo journey. She says:

“You will be met with sympathy by all. It comes easy and can be sapping. You need and can bring about the uplift that only admiration ever gives. Be the hero not the victim.”  

OK, you generally don’t meet a lot of sympathy when you choose to run a marathon – more like raised eyebrows and looks that communicate “you are crazy!”. But during the marathon itself the uplift you get from the cheering crowds is really what gets you through when the going gets tough. In New York, where I wasn’t in top form and was really struggling, it was the cheers and encouragement and that kept me going and stopped me from giving up. In Copenhagen, where I was in top form and enjoyed every moment, it was unbelievable to see my family pop up cheering again and again throughout the course (I think they managed to plan a route where they actually saw me 9 times throughout the course – I think you are probably getting the idea about how much support I get from my family!).

But it has been like that with the chemo too. I can’t describe how much energy and motivation it gives me when I get comments from all of you, here or on facebook, in emails or in person, cheering me on and encouraging me. I can’t believe how many of you take the time out to do that cheering and I appreciate it more than I can say.

They say that a marathon really starts at 30 km. The first 30 km are relatively easy. The last 10-12 km are tough and you get through them purely on will power. I have just had the 6^th out of my 8 chemo treatments and it feels a bit the same way. The last couple of times it has taken me longer to “bounce back” after the treatment, and I think I can say that this last couple of weeks struggling with the infection and being hospitalised have been the equivalent of hitting the wall.

From now on it is going to be willpower and your cheering that keeps me going, so keep it coming! And while I’m struggling through I’m already fantasising about those cheers I’m going to hear when I run my marathon next year and the amazing feeling I’m going to have when I cross that finish line……

A detour from the plan

When I first started out on my chemotherapy journey it sounded reasonably straightforward – 8 times chemotherapy at 14 day intervals. I immediately went home and plotted the dates in the calendar with a big star on the final date. I guess I was naive, or maybe I have just been unlucky, but those dates have been changed so often now that I have more or less lost track….

Basically the problem is that chemotherapy can’t distinguish between the good cells and the bad cells, so the good ones take a hammering along with the nasties. While this is irritating in terms of hair, digestive tract etc., it is pretty serious with regard to the white blood cells, which popularly speaking constitute the immune system. The white blood cells get killed off by the chemotherapy but then gradually increase again ready for the next chemo treatment 14 days later. However in my case the counts have generally been low and already chemo #3 was postponed a week to give them a chance to get better. The problem with a low count is that not only are you more susceptible to infections, but if you get one the body isn’t able to fight it by itself.

The last time I wrote chemo #6 had just been postponed by a week due to a recurring infection at my catheter entry point, so Friday 10 September was again blood test and doctor consultation day. The infection wasn’t completely cleared and it turned out that my white blood count was even worse than the previous week, but since the effectiveness of my chemo is dependent on it being administered regularly, the Doctor decided that we needed to go ahead with it on Monday 13^th regardless, but with caution that I needed to be extra paranoid about infections.

During the course of that Friday evening I developed a pain in my neck at the place where my catheter tube enters the main vein (under the skin) and it was a bit swollen. But it wasn’t red and my temperature was normal, so we decided to wait until the next day to see how it developed. However I woke up at 1am shivering and soon discovered that my temperature was 40.3°, so after a quick call to the duty doctor, we rushed off to the hospital. It turned out that the infection had spread up the catheter and into my blood. This would be bad news for anyone, but is definitely not good when you have a non-existent immune system!

My temperature hovered around 40 degrees for the next 48 hours. On Saturday evening they decided to remove the catheter which made sense. The only problem was that from then on I had to have all the fluids, antibiotics and when the time came, chemo, into a vein in my arm – and my veins are not great (the reason I had the catheter in the first place) so that wasn’t a lot of fun! On Monday morning they got the results on the test on the catheter and discovered the bacteria causing the problem was resistant to the broad spectrum antibiotics I had been getting, so then adjusted to the right ones and by Tuesday morning my temperature was back to normal. With the infection under control, they decided to go ahead with the chemo on Wednesday, which immediately made my temperature shoot back up over 40 degrees, resulting in a new batch of blood tests and x-rays, but it seems that it was just a reaction to the chemo, and was back down again on Thursday. However I had to stay in hospital until Monday so as to complete the course of antibiotics (which were administered intravenously).

So it has been a bit of a tough time since I last posted! But there have been high points. It was my birthday last Tuesday. I woke in the morning (they woke me each day at 6am for my first dose of antibiotics) with a pounding headache and feeling very depressed that this was probably going to be the worst birthday ever. But then, a little after 7am, my daughter stuck her head round the door, which was a total shock (I thought for a moment I was hallucinating!). She and my son and my husband  waved to me to come out and then lead me to the staff meeting room where they had set up for a birthday breakfast with flags, and presents and all the works! It made me cry – that really is love! During the rest of the day I got lots of birthday wishes on facebook, phone, sms etc – plus from all the hospital staff and my family came back in the evening for a birthday dinner in the hospital canteen. I think it probably turned out to be one of the best, if somewhat unconventional, birthdays I have ever had!

I’m home again now and feeling a lot better, though very wobbly!

Halfway scan results

Today was blood test day AND scan result day. A few of you have asked me when I was going to get the results which actually made me feel a bit guilty because I had nearly forgotten all about it! I guess I ought to have been anxious about it, but I haven’t been at all! I have just been assuming that the news would be good (on the basis that there would be time enough to worry about it if I found out it wasn’t I suppose…). Anyway….

Good news!

Before starting treatment I had active cancer cells in 4 locations (both sides of my neck and both armpits) but now only in one location (forgot to ask which, but it doesn’t really matter)!

My blood tests were actually fine – not great but good enough. However I have been having some problems with a recurring infection in my catheter entry point. I finished a course of penicillin on Tuesday, but it has flared up again since then. So the Doctor decided it would be tempting fate to go ahead with chemo on Monday so it has been postponed for a week and I get another course of penicillin to see if we can get it properly cleared up.

I am actually quite pleased it has been postponed. I’ve been feeling very tired this time around. Last week I was really out of it for several days and while most of the other times I have felt a lot better around the start of week 2, this time I still haven’t really reached that point. So, even though it means the end of chemo is delayed another week, it is a relief to have an extra week just now to recover a bit more.  

And now I can enjoy my weekend without chemo-Monday looming!

Krop og Kræft

There are frequent media reports about the sorry state of the health service in Denmark with long waiting times etc. I can only speak from my own experience which so far has been close to exceptional.

Another example of this is Krop og Kræft (translates as Body and Cancer) which is an offer for chemo patients in this region. Based on the principle that physical exercise can relieve some of the physical and mental side effects of chemotherapy, it is a programme with strength and condition training, relaxation and massage four days a week for 6 weeks. This is offered by the health service – free of charge!

I started Krop og Kræft this Monday, having been really looking forward to it since I found out a couple of weeks ago that I had got a place. Actually the main thing I was looking forward to was not the training itself, but having a fixed weekly routine. I’m used to having a really busy calendar a bit like a jigsaw puzzle and I have been a bit depressed by the feeling of being on “standby” while everyone else is buzzing around in their busy lives.

I had also been looking forward to getting out and meeting some new people. Until now I’ve deliberately avoided participating in anything like cancer support groups. The idea of sitting around with others discussing how awful everything is horrifies me! I’d much rather be with friends and family who can talk about other things and can have a laugh. Yet, in some way there is an appeal to being with others who are going through some of the same things and in Krop og Kræft we are getting together over something positive.

So far it is absolutely living up to my expectations, though I’m actually finding it quite tough having a routine – and this is my “good” week! We have training Mondays, Wednesdays and Fridays from 12.15 to 15:45 and on Tuesdays from 10:30 to 12:15, and I have to commute into Copenhagen. Before this week I have been having an afternoon nap most days and I can feel that I am missing it! I have no idea how it is going to go when I have my “bad” days, though I will of course need to miss it on my worst days – those days when even brushing my teeth seems like a huge challenge… (but luckily that is usually only 2-3 days out of every 14!).

It has also been great meeting the others. We are a “team” of around 15, though we are never all there at the same time as obviously people have to have days off when they are having their bad days. There is plenty of “space” in our programme for chatting and sharing which is really great. And it is amazing to see how we all arrive in our various stages of fatigue, depending on where we are on our chemo cycles, and yet everyone throws themselves into it with much enthusiasm and laughter! I’m not sure that a stranger walking in who didn’t know would ever guess that this was a bunch of chemo patients (apart from the fact that we are all bald of course!).

We started off by having individual strength tests on the machines as well as a cardio test and based on that have been given individual training programmes. On Mondays, Wednesdays and Fridays we start with a warm up before doing our strength and cardio and then have some kind of relaxation exercise afterwards. On Tuesdays we get introduced to different kinds of “body consciousness” exercises (yoga, meditation etc) and once a week we get a massage!

The programme lasts for 6 weeks and I’m looking forward to it! It has made a huge difference to how I feel about the last part of my chemo treatment and I think it will be a great springboard for getting back to “normal” after this is all over…..