Guest Post: From the Patient’s Perspective
Hi, it’s Mark here. I
thought it might be useful for people to have some insight into how I have been
going through all of this, and while it would be impossible to describe
everything that has happened in the last three months, I will try to cover some
of the main events.
Surgery and Recovery (Part 1)
Looking back on it all, the surgery part was probably the
easiest part of the whole process. Sure, I was nervous beforehand, and every
thought imaginable goes through your head, from wondering if you will make it
through surgery, will I still be ‘me’ when I wake up, how much pain will I be
in afterwards, but thankfully this all went well and there were no
complications from surgery and I woke up still feeling like I was myself, knew
where I was, who I was and actually felt surprisingly normal – the pain
medication probably helped a lot too!!
It was only several days after the operation that I began to
notice subtle things that were different. Trying to do some mental arithmetic
or spell a word backwards would start with a feeling of complete ‘blankness’,
and required a considerable amount of concentration to come up with an answer.
And when I looked back later at the answers I had written down, I could see
that some of them were wrong. On the positive side though, repeating similar
tasks for a second and subsequent times got easier, more accurate and faster
which gave me lots of hope that any deficits that I was currently noticing
could be re-learned and that I could ‘work around’ any problems that I might
currently be experiencing – the brain really is an amazing thing.
When I was out of hospital only a few days after surgery I
had to adjust to a new way of life, very different from the normal working week
that I was accustomed to. I had the idea that I would be able to return to work
soon and life could get back to the way it used to be… but that was completely
ruled out when I started working on a couple of personal programming projects
that I have had on the go for some time. When I started looking at some of the
code, I could recognise it without difficulty, but writing new code took a lot longer than I was expecting and was
not up to the standard that I would normally expect of myself. But again, it
got easier with practice and I started to feel reassured that I could return to
the job that I enjoyed so much, and would be able to get back to the point I
was at before surgery.
In fact there were even signs of improvements in things I
had found difficult in the past – like touch-typing, something I had only very
recently committed to teaching myself. I now found it a lot easier to find the
right keys on the keyboard and type with much greater accuracy – bonus!
I was noticing though that my mood was pretty terrible and I
would myself being very snappy with Irene and Seb over the smallest things. As
someone who is normally very patient and the one who tries to bring calm and
reason to problems, this worried me a lot and I didn’t like the person I was
becoming – it’s like being a passenger in your own body, you are aware of what
you are doing but at the same time being almost powerless to stop it. Looking
back on it, I think a lot of this was due to the Dexamethasone, which is a
powerful steroid used to reduce swelling (but you probably already know that
from previous blog posts). Once I was able to stop taking it, my sleep started
improving, and my mood along with it. I also felt like I was getting some
strength back in my body and finally started having some energy to start
helping out with a few things around the house again.
Being on Dex is like being on a caffeine-high, 24 hours a day, which makes you feel
anxious, on-edge, and never able to really relax. I can feel so tired before
going to bed but as soon as my head hits the pillow, I feel wide awake again
and cannot shut off my brain. As a consequence I have had no need for caffeine
from any other sources and have been trying to avoid it where possible.Radiotherapy
I am now in the final week of radiotherapy, and I can’t wait
for it to be over. The actual treatment
itself only takes a few minutes, but when you factor in travel time to and from
the hospital, parking, waiting in the waiting room, then all of the preparation
work in lining everything up, the whole process takes over an hour each day,
and that’s 5-6 times per week.
It’s a painless process and you’re not really aware of much
happening aside from a few noises from the machine and the main part of the
machine moving around to target different parts of the brain (this is to
minimise the radiation exposure to the healthy cells while maximising the
dosage to any areas that may still have traces of the tumour remaining). It’s
only a few hours later that I start to notice the effects, which is usually
just like a wave of tiredness – a good excuse for an afternoon lay down!
There is nothing comforting about the thought of having
X-rays aimed at your brain, and I have often worried about what long-term
effects this may have on me. I can’t help but read things online relating to
everything I am going through, and while I try to be very careful about not
taking everything at face-value, Radiotherapy can cause long-term issues with
memory and cognitive function. This is supposed to only affect a very small
percentage of patients though, so I just have to accept this as a possibility and move on.
It doesn’t help that while going through Radiotherapy, it
actually creates more swelling in the brain while the body tries to heal the
damage done by the X-rays, which if not managed can cause more problems – in my
case, briefly losing the ability to speak
or read fluently for a couple of minutes at a time. That was one of the
most frightening experiences for me so far, and it’s at times like this you are
left wondering ‘is this normal’, ‘should I be worried about this’, and it
always seems to happen on a weekend when there isn’t a doctor available to
speak to.
Long story short though, this has been OK since going back
on the Dexamethasone, but as a result I am not getting a restful night’s sleep
again, have to take Temazepam to help me sleep (which has its own problems when
used long-term), and am back to feeling tired most of the time and not having
much energy to do much at all – in fact, writing this blog entry is probably
the longest I have sat in front of a computer for a few weeks now.
It’s a constant balancing act of finding dosages of
medications that are required to get through this stage of treatment, but
trying to minimise the side-effects in the process. I have heard it before that
often you are on medication just to counteract the side-effects of another
drug, and this is definitely what I am experiencing at the moment. I am really
looking forward to being able to finish Radiotherapy, get myself off the Dex
(again), and off the sleeping tablets, and hopefully be able to get back into a
normal sleeping rhythm again.Life from Here –Recovery (Part 2)
I’ve been told to expect to continue to feel tired for
anywhere from 2 weeks to 3 months after Radiotherapy finishes, so even though
my brain won’t be getting blasted with radiation, I will still be feeling the
effects of it for some time yet. I have also been warned that at about week 4,
a lot of people feel like the tumour is coming back again but this is the
body’s final stage of healing, so I have to remember not to panic if and when
this occurs!
This time though, my body should have a chance to recover
fully and I will again have the strength to start doing more, learning more and
just generally enjoying life more. Can’t wait!Conclusion
Well, if you made it this far, well done! It has been a lot to take in all that has
happened in the last three months, and there is still a long road ahead of
us. For me, I think it has put into
perspective how much we can take for granted in our lives, and just how quickly
things can change from what you consider to be a normal life to something
completely different.
The thought had crossed my mind in the past of how do other
people cope when things like this happen to them, and how hard it must be on
them and their family. I won’t sugar-coat it – it’s the most difficult
experience I have ever had to go through in my life, but the thing I’ve
realised is when you are forced into a situation like this, it’s surprising how
capable we can be of adapting to the situation and finding that inner strength
to keep moving on and to fight another day.
Probably the best advice I have for anyone going through any
turmoil in their life is to try and live in the “now”. You can’t change what has
happened in the past, and there’s no point worrying about what may or may not
happen in the future – they are both out of your control, the only thing we
have any control over is what we do right
now. Easier said than done I know, but it has helped me a lot to calm the
doubts and fears that go through my mind at times.
It’s not easy, some days you feel like giving up and saying
“it’s all too hard”, but that’s not what life is about – you don’t get to quit,
just like you don’t get to quit being a parent when you are sick or have a
child that is misbehaving. I’m not angry about the diagnosis and the chaos that
it has brought into our lives – if anything it has given me a chance to stop
and reflect on what’s important in life and give me the opportunity to address some
of the imbalances that were there in the past. It’s all too easy to get swept
up in day-to-day life and lose track of the things that are really important to
us, so for me I think this has been a wake-up call and a reminder to think
about what really matters in my life.
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