Who is NED I hear you ask? When you’ve had cancer, NED is very much your friend. Or least, everyone wants to be NED. No, NED isn’t the popular one at school. NED is ‘No Evidence of Disease’ - the best you can ask for post-cancer treatment.
A few days ago, I went for my regular check up with my
consultant. I have had 6 of these appointments in the past 12 months, but this
one was significant because today it has been a whole year since I finished treatment.
12 long months. ONE WHOLE YEAR of having no evidence of cancer in my body. And this, it seems, is how long it takes for your hair to grow back to a length you can tie up!
I was reflecting on this during the car journey - the way cancer changes your perception of life. Cancer survivors no longer think of life in terms of birthdays and Christmas and school holidays, but rather of appointments/scans, the time between those appointments/scans and how long you have been lucky enough to escape the scythe of the grim reaper. I no longer define myself as a 48 year old woman (although indeed I am one of those), but as a person who is one-year NED. It becomes almost like a new identity.
The question is then how to count - which date are you meant
to look at? Surgery - when the big gruesome lump of disease was hacked out of
my throat? The start of treatment? The end of treatment? The first MRI scan? It
seems the protocol is to count from the end of treatment, so for me that will
be October 11th, a date I will never ever forget.
So in theory, today I should be celebrating being one-year
NED. And don’t get me wrong, I do feel an enormous sense of relief. But with
cancer, the celebrations are muted. It’s not a real celebration of being NED,
because you know too well how quickly, quietly and easily it could come back.
You are only ever as well as your last scan. And my last scan being almost a year ago
doesn’t fill me with confidence. I talked about this in a previous post - about
how most cancer survivors have regular scans, but with Head & Neck cancers
it’s just a quick look up your nose and down your throat with a camera and
you’re on your way. I’m downplaying it of course. There is also a neck and
mouth check. But it’s very dependent upon the presence of a visible or palpable
lump, so anything lurking beneath the surface won’t become known until it starts
to grow and cause issues.
Pre-cancer I would have been celebrating my one-year NED with a glass of fizz, but it will more likely be a cup of tea and some cake this evening. Having a Head & Neck cancer has made me extremely wary of alcohol. I have said previously that my consultant has been very clear that this cancer was in no way caused by alcohol, it was caused by a virus, but when you have had cancer in your throat and each time you sip a drink it has to pass by the mutilated, burned site where your cancer was, well, it really puts you off. So I rarely drink these days, unless it's a special occasion.
So the reality is that this is as ‘well’ as I am going to be at this moment in time. Physically at least. It’s quite a hard way to live life. We all crave reassurance about our health. And when you know your body is capable of growing a decent sized tumour in a short space of time, you will inevitably worry. But I’m told the worry becomes less the longer you go without a recurrence, so fingers crossed that’s true for me too.
Overall, I’m feeling relatively well one year out. I am able
to eat and drink everything now, but my tastes and preferences have changed
quite significantly, partly because some things are so much more difficult. I
eat a lot less meat and bread - both too dry and chewy - and I tend to prefer
things with some sauce. I still mostly prefer sweet things over savoury, which
is another remnant of the time when I couldn’t swallow during treatment, and
not an entirely healthy way to eat, but back then calories were calories and those
delicious sweet puddings ultimately stopped me from needing a feeding tube.
I still have less saliva and more mucous and I don’t think
that’s ever going to change now. Similarly, I know that I still can’t fully
taste certain foods because I remember how they used to taste and now the
flavours are muted. And I still have the very random thing where I can taste
the first few bites but after that the taste pretty much evaporates into thin
air.
I also still have quite significant fatigue. Having never
been an afternoon nap person, I now find myself needing a cheeky nana nap every
couple of days, despite my best efforts to try to stay awake through a whole
day. Sometimes I get back from walking the dog and I am absolutely exhausted - again, not something I am used to but it's gradually starting to feel like a new normal. I'm told it can take 18 months for the fatigue to die down, so I am hoping my energy comes back at some point.
All of these physical aspects are annoying and frustrating, but in reality I believe the emotional side of cancer is a far steeper mountain to climb than the physical side, and that part I am still trying to work through. Being told you have cancer when you are in your 40s really does change your life (I can’t begin to imagine how hard it must be to be even younger). Of course, there have been some positive aspects, such as re-evaluating your priorities and living life in a different and more positive way. But there are also plenty of negatives, and as my consultant said to me at my appointment, ‘you have been through some of the most brutal and damaging treatment available’ so it is no wonder I feel as though I have been hit by a train.
I came across this photo of my daughter in my mask today - it popped up as a reminder (as if I needed one) - and I am very glad that I do not have to put that awful thing on again at this moment (hopefully never, but I am touching a lot of wood here!).
These challenges are of course minor in the grander scheme
of things. I can easily live with them. The alternative - well, the alternative
doesn’t bear thinking about, so we will leave that there. I am very grateful to
be alive and I can only hope that the cancer doesn’t return, but in the
meantime life is for living so I will be doing my best to make the most of
every minute, even if that means snoozing through some afternoons!
