Moral support

My blood tests on Friday were OK, so my third chemo treatment went ahead on Monday. This time it went according to plan, my catheter behaved impeccably and I was in and out again within a few hours – thank goodness!

While I was there, an older man fell over and banged his head. He was generally very confused and upset by everything and I commented to the nurse that I thought this chemo business was pretty nasty even for someone like me who was in good shape and that I just can’t imagine what it must be like for someone who is frail to start with.

Interestingly, she commented that they find that THE most important factor for how well people cope is not how frail or not they are but rather how strong their support network is! Then last night I saw on the news that research is now showing that having strong social networks is just as important for fighting the risk of cancer as things like diet, exercise, not smoking etc.

This makes sense to me – I honestly don’t know how I would get through this without all the support I get. Number 1 is my husband who unfailingly helps me every day with the practical things as well as moral support, and also my family and close friends who are being fantastic. But there are also so many other friends, colleagues and acquaintances who send me messages, post comments on facebook,  pop up for a chat on skype and keep me in touch with what is going on, make me laugh or let me know that they are following my blog and sending me positive thoughts.

It all helps more than I can say!

Chemo Brain

Well, I didn’t make it past Saturday before I started having a sore throat and I woke on Sunday morning with a full-blown throat infection. However a call to the Duty Doctor at Herlev resulted in a prescription for penicillin which did the trick and by Sunday evening my temperature was well back down and my throat a lot better. Fingers crossed it also takes care of any other lurking nasties.

So, so far I haven’t been able to enjoy the added physical well being that the postponed treatment should bring for a week, but I am enjoying a respite from the mental side effects of the chemo. And here I am NOT talking about the psychological aspects of finding out within a short period of time that you have a serious illness and having your life turned on its head by an aggressive treatment plan. No, what I mean are mental side effects like losing my ability to multi-task (indeed some days I struggle with single-tasking!), forgetfulness, and so on. Nothing had prepared me for this and it is probably the aspect I find most frustrating, because it actually feels as though my personality as changed. I’ve gone from being a super-efficient, pro-active multi-tasker to a passive ditherer with no initiative.  I’ve gone from travelling regularly all over the world to all kinds of weird and wonderful places, often on my own, to having a near panic attack at the thought of driving into Copenhagen. Of course, some (my family?) might argue that it also has its benefits in that I am probably also much more easy going and good natured than usual! My sister, who knows me better than most, assumed that I would be dealing with everything by being more of a stroppy cow (her words not mine!) than usual, but I’m not! At times, sad and upset, but never stroppy!

Here are some examples of what I mean…..

• One day I got lost driving home from the hospital (where I have been a zillion times and it isn’t even a complicated route!).
• Last week I was paying for something in a shop using change and I just couldn’t figure out the right money and the shop assistant had to do it for me….
• In the supermarket queue I stood staring into space for ages wondering why the person didn’t get a move on and pay when finally I realised (after the checkout person nudged me) that it was actually me and everyone was standing staring at me.
• Making dinner one night I needed to coordinate 4 different things and had no clue how to do it and my husband had to come and help and give me instructions.
• Another night when we had guests my husband had singlehanded produced the dinner but asked me to help by putting the drinks on the table. I was totally blank and he had to tell me exactly what I should do.

While it provides lots of material for funny stories, this has been quite scary, particularly since no-one had warned me about it. However as usual Mr. Google came to my rescue and I found out that I am not alone and that chemo brain is actually quite a common side-effect.

I am finding coping techniques to deal with it:

• Lists: I’ve always been a list writer, but we are into a whole new dimension here – 2 item shopping lists anyone???
• Visualisation: I’ve used this technique for running before, but I’m finding it helps when I have to go somewhere e.g. visualise the drive into Copenhagen, the route and the junctions, where I’m going to park, buying the parking ticket etc.
• Lowering my expectations for myself: I just don’t try to multi-task, I give myself longer to do things, I don’t expect to be able to produce complicated food etc.
• Asking for help: This is the hardest one for me. I mean, I don’t normally ask for help – I GIVE help! I manage things independently! It is very humbling for me (and I am trying hard to mean humbling and not humiliating) to have to ask a shop assistant for help to count my money or to admit to my husband that I don’t know how to set the table and ask for his help. But it is also amazing to experience that it is OK to be dependent on others and that they are happy with that and happy to help me.

Third time apparently not so lucky…

I was at the hospital for my blood tests and a consultation with the Doctor today. The chemo “damages” the blood so I have to go and have blood tests before every treatment (plus before any other procedure, like having my catheter installed).  

I had my new catheter installed on Wednesday. The operation wasn’t nearly as unpleasant this time as it was the previous time thank goodness. The bad news is that my chest is beginning to look like a dart board with all the wounds on it – they had to put the new one in a different place from the old one. But who cares? Because the good news is that the new one worked beautifully when I had my blood tests this morning!

But that was the only good news this morning. My white blood cell count is way too low, so my chemo has to be postponed. I have to go back next Friday for more blood tests and hope that the count has improved enough so they can give me the chemo the following Monday. The Doctor explained that postponements don’t affect the overall effectiveness of the treatment, but of course, every week it gets postponed means a week more before it is all over….. And if I’m already struggling with a low count after my second treatment, I can’t imagine this is the last time this will happen.

With such a low white blood cell count my body simply isn’t able to fight infection, so I now need to be extra paranoid about avoiding any infection risk plus call the hospital at the least sign of a temperature (38.5 or higher!) or sore anything in which case it is antibiotics for me!

Although I’m disappointed – I just want to get this phase of my life over – a small part of me was also cheering that I get a week’s respite from the chemo. Hurrah! Another week of feeling “good”, before the next dose of chemicals!

Keep on running 2

I thought it was about time for an update on the running. The last time I wrote about it was BC (before-chemo) and therefore rather aspirational! Then I said that I was going to keep on running no matter what – and so far I have kept to that….

Though to get it in perspective:

A typical training week BC consisted of 4 runs (though I had been plagued by an ankle injury this spring so sometimes only 3 runs) covering around 30 – 45 km (depending on what I was training up to) plus a day swimming and/or biking (sometimes a long ride on my bike outside, sometimes an interval session on the exercise bike). On top of this I have two different exercise routines – one for my legs and one for my core, which I would typically do 3 and 2 times per week.

 A typical training week now consists of training 3 times a week – 2 runs and one session on the exercise bike. So far my runs have been between 4 and 6.5 km and my average pace has dropped by 30 – 40 seconds per km. That’s all I can manage. No exercise routines, no biking outside (I’m scared in case I start feeling bad when I’m far from home) and I’m not allowed to swim because the risk of infection is too high(chemo destroys the immune system).

But I have run/biked 3 times every week since I started chemo!

One of the things about the chemo that I find hardest to deal with is that in such an incredibly short time I have gone from feeling super-fit and physically robust to feeling incredibly physically fragile.  It takes me an incredible amount of willpower to go out and run on days where I am feeling pretty rotten. Sometimes I have to have a nap beforehand just to get the energy together to do it. But I have decided that the goal is simply to get the running kit on and go out. If I then only walk for 5 minutes, then I have still accomplished my goal. So no matter how far I run I feel great because I have exceeded my goal!

There is a difference on how much I can manage on different days of my cycle, and since I’m only on my second cycle, I’m still learning about this. Interestingly, there doesn’t seem to be a direct correlation between how bad I am feeling generally and how it goes with the running. The middle Sunday of the cycle, which is when I start to feel less fatigued, is the day where it is hardest to run! On the other hand, the final Sunday of the cycle, which is when I feel best, also seems to be the day where I can train hardest.  In the beginning I was very careful, but now I’m beginning to feel more confident and starting to experiment with picking up the speed or running hills…..

But no matter what I actually feel great when I run! There are so many weird things going on with my body, but when I start running I forget them all. Sure, it does feel like I am running in slow motion, but I’m running and it feels like running always does. And as always it provides the mental space to work through my thoughts and my feelings. I can feel my spirits lifting for each step I take!

The lifted spirits last for a long time after the run. But I also feel physically better for a couple of hours after a run. Not only does the fatigue lift, but best of all my appetite returns for a while.  So I try to time my runs before a mealtime and I find I can eat much more than I normally can these days AND enjoy my food which might seem like a small thing, but believe me it isn’t!

Bad hair day?

I knew it was going to happen, but it was still a shock when my hair started to fall out!

The first signs were on Wednesday (chemo 2 day 3). I had washed my hair and was just styling it with some wax, and when I took my hands down from my head, there were a zillion hairs stuck to my fingers. Gross.

That was the start, since then my hair has been falling out constantly. It’s a bit like a cat shedding. There is hair everywhere – on the floor, in the bed, stuck to the chair, down my back. Luckily I had decided to get my hair cut very short last week – ready for this eventuality. That was definitely a good move, it is bad enough with all these short hairs everywhere, long ones would have been even more disgusting! It is SO disgusting that there is a very strong temptation to get it over with and shave the lot off. But I’m trying to resist. Some people don’t lose all their hair and I reckon that hats and scarves do look better and less “I am a cancer patient”-ish if you have even a small tuft of hair sticking out!

The thing that amazes me most is how many hairs I actually have. I mean this shedding is constant! If I wash my hair the hairs just cascade out, so I you think that must be it for a while. But then I rub my head with the towel and the towel looks like a porcupine. And then I comb it, and the comb just gets completely clogged up with hair. And an hour later I put my hand up to my hair and a handful of hair comes away. Luckily the weather is good, so I have taken to going and standing in the garden every hour or so and rubbing all those hairs out. My mother-in-law says the birds will be pleased….we’re going to have luxury natural-hair lined nests in our garden next spring!

Unbelievably, after 5 days of this I still have hair on my head and no bald patches. As my husband diplomatically put it, it is looking a bit thin (and believe me, my hair wasn’t thick or voluminous to start with!) but it is there. I’m not sure what percentage of my hair is gone – 50% maybe?

But here is the thing – yesterday evening and this morning, the shedding has slowed down. I haven’t tried this before, so I don’t know if this is just a brief reprieve before the remainder gives up and falls out, or whether I get a break until my next chemo cycle, or if this is it, and I’m going to get away without losing it all (I’m hoping!). But for today at least I seem to have a reprieve from the scratchy hairs down my back!

Hoping for third time lucky….

It would be a mistake to say I was looking forward to going for chemo yesterday. In fact, I slept really badly the night before because I was dreading it so much. Let’s face it, it is more than a little perverse getting up on a Monday morning and heading off for a chemical cocktail that you know is going to make you feel rotten for the rest of the week…. I just kept trying to remind myself that 1. I choose to do this and no-one is forcing it on me (although the alternative isn’t really much of an alternative and 2. I am lucky to have access to this treatment – most people in the countries I work in would not have access to the diagnosis, let alone the treatment, and even in other so-called developed countries people face financial ruin paying for this kind of treatment.

But I’m no saint, and I have my moments of self-pity, but at least I was looking forward to the treatment delivery being a bit smoother than last time due to my newly installed catheter.

WRONG!

After taking my pre-treatment handful of anti-nausea drugs and waiting 45 mins for them to take effect, the nurse comes to start the treatment. So I whip out my catheter, and he starts by trying to inject some saline solution into it. Nothing. No movement either in or out, the thing is blocked. He tries a few tricks he has up his sleeve. Still nothing. So then they have to go and call the anaesthetists to ask for help (for some reason that only a Doctor will know, it is anaesthetists who are responsible for installing these catheters). I then have to wait an hour or more, because the anaesthetist on duty is installing some other poor soul’s catheter. Eventually the head-honcho anaesthetist arrives and he also tries to pump saline solution into it – somewhat more aggressively than the nurse – which causes me pain up beside my collarbone. This confuses him a bit, but then he asks me to shrug my shoulders up to my ears – bingo, we have a flow! It turns out I have a rather unusual complication – my catheter has got squashed between my collar bone and my top rib (I didn’t realise my ribs went all the way up there???) which is blocking it. The good news was that by shrugging my shoulder they could use it to give me my chemo yesterday (though it isn’t very comfortable sitting with your shoulder shrugged up for a couple of hours). The bad news is that they are going to have to replace it – there is a chance that the friction can wear a whole in the tube, with the risk that the chemo seeps out into my body, and that is definitely not a risk I’m prepared to play with. So now I have to go in and have this catheter removed and a new one installed, which really doesn’t thrill me.

So in the end I was “only” there for 4.5 hours yesterday. A one hour improvement on last time – I don’t seem to be very good at this chemo thing! I also felt much worse afterwards yesterday than last time – a bit nauseous and generally very yucky. I’m not sure if this is because the chemo went in much faster. But feeling a bit better again today, which matches the pattern last time.

Chemo #1 Day 13

I’m now almost at the end of my first 14 day chemo cycle and thought it was probably time for an update on how I’m doing. I just reread what I wrote on Day 4, which seems like an age away! I can see I was being naively optimistic about my ability to sail through this on a wave of yuckiness at that point, but the two days following – Days 5 & 6 – were truly awful, totally off the yuckometer! I developed a lot of pain in my mouth, face and head which meant I couldn’t sleep for two days and otherwise generally felt very ill. At the time I was sure I was feeling the most ill I ever have in my life, was feeling very sorry for myself and, at times, totally desperate at the thought of having to go through this another 7 times.  However last Sunday – Day 7 – I gradually started to feel better, and on Monday morning I felt that a big fog had lifted.

As this week, week 2, has gone on, I have been feeling better and better each day. I have less energy than usual, but otherwise have been able to function more or less normally. I am really hoping that this will be the pattern – it is much easier to bear a week of feeling ill if you have a “normal” week in between.

I do however have ongoing mouth/eating issues. The mouth dryness is an ongoing problem, though it hasn’t seemed quite so bad this week.  I’m not sure if that really is the case or whether it is just that I am getting better at managing it. I have found it a real challenge to adapt my diet, but gradually we are figuring out what I can manage to eat and what I can’t. I think I mentioned before that the hospital warned me not to lose weight, but despite my best efforts I managed to lose a kg last week:-( . This week, I haven’t lost any more – though haven’t put on any either! Probably the most annoying thing about the mouth dryness is that I wake up approximately every second hour throughout the night feeling like I have been strangled because my mouth and throat are completely dry….

Yesterday I had my catheter installed. I have been worried about the catheter since the beginning, though I’m not sure why. I just think there is something very intrusive about having an extra piece of hardware installed full-time. But as I mentioned before, after my problems in getting the chemo last time, I have had a slightly more positive attitude. The actual installation was done under a local anaesthetic, and it was very unpleasant, but over quickly, thank goodness! I had had problems imagining what this thing was actually going to be like, but basically I now have a thin blue plastic tube – about 15 cm long – sticking out the right hand side of my chest with a sort of peach coloured nozzle on the end with a white stopper in (imagine someone must actually have decided on this colour scheme – what were they thinking????!!!!!!). There are two wounds, one where the catheter comes out and another they made to do whatever they did inside, and the wounds are covered by a big dressing, though the tube dangles free. I’m going to have to have the dressings on it for 3 weeks, and change the dressing every third day. It does look a bit strange to be honest, and unless I wear high necked sweaters (which I don’t intend to since it is summer) it is going to be difficult to hide altogether, but that we have to live with I guess. I’m also not allowed to use my arm excessively or lift anything heavy for 14 days – shame!!

I also had my blood tests on Thursday. The chemo also attacks your blood and if your blood counts are too low they have to postpone the treatment, so I have to have blood tests before each treatment. The good news is that my tests were good!