I feel like I've come
through the hardest part of the treatment for now and moved on to a
plateau which will hopefully remain fairly constant for the next
three months. I'm getting used to the daily injections and am
determined to learn to do it myself very soon. It will mean not
having to wait around for the district nurses every day or ask
friends to wait in the kitchen while I'm jabbed in alternate thighs.
Don't get me wrong, I have my down days. It seems to be about once a
week. Partly due to the frustration of being so limited physically I
can hardly make it to the end of the road. I used to skate or dance
for hours on end. How can I be this incapacitated?! I spend Thursdays
at my friends' beach hut having an art afternoon and we lunch at the
cafe next door. I love it, even though the weather is always grey and
usually rainy when we go, it's the sight of the waves, sometimes calm
and serene, sometimes tempestuous and angry. Moods all of its own.
And it's okay to be like that I realise. Okay to always not be okay.
As long as I keep shining the light of positivity and banish fear I
can deal with this.
So it's been ten days
now. I'm still not quite used to having no hair. I hate it really,
even though what little I do have feels nice to touch. Soft and
bristly underneath my fingertips and tingly on my scalp. I wear my
wig most of the time except if I'm in my room with the door locked
but it gets uncomfortable round my ears after a while and I'm
starting to wear my scarf a bit more when no-one is about. Emily
shaved it for me last Tuesday evening. I stood there with the
scissors in my hand and tried five times to bring the blades together
to cut off a lock of my hair. My thumb and forefinger would just not
come together. Emily had to take over. The actual act wasn't so bad.
A few silent tears rolled down my cheek when the scissors took the
first couple of hacks out of my long blue hair, but the shaver felt
nice against my head. Kind of like a massage, vibrating against my
scalp. So I felt quite calm. I didn't watch though. Better that way.
After Emily left, Asa turned up within about half an hour so I had to
deal with wearing my wig straight away. He gave me a big hug and
thought nothing of it so it was fine, even if I felt a little
self-conscious.
My hair had thinned
over a few days, not really noticeably but if I brushed my hand over
the top of my head I ended up with a bit of hair coming away on my
hand. I kept it in a ponytail and didn't brush the top of it from
then on. A couple of days later I was sitting in the bath and when I
washed myself most of my pubic hair came out and I realised I didn't
need to shave my armpits anymore either. The one thing I did have to
do was shave my legs though! I'm trying not to touch my eyebrows or
eyelashes too much so that hopefully they will stay as long as
possible. Mascara is a no no and the odd eyelash has started to come out when I put
eyeliner on.
The day following the
head shaving I felt pretty low, cancelled a lunch visit. I just
couldn't face anyone. I was having a bad wig day! I went to my
hairdressers in the evening and got my wig cut which made me feel a
bit more confident, so by Thursday for my next chemo I was feeling
generally okay about it. I've had quite a few comments from people
saying it looks really good. Mum said “Have you not lost your hair
yet?” The kids Dad asked if I'd had extensions put in at the
hairdressers and then incredulously “Nooooo! Is that your wig?!”
when I said I hadn't. Even my hairdresser asked where my wig was when
I turned up! I'm still a bit self-conscious. To me it's obvious it's a wig. I don't think I will let anyone apart from Emily see me
without a wig on. Even a scarf I can't quite manage yet. I'm sure
that will change as I start to get fed up of the uncomfortableness of
it. Half a day is alright but it makes the skin by my ears sore after
too long. I always wear it around the kids. It is enough for them to
deal with without seeing their Mum like that. The boys have been ill
with colds and tonsillitis so have been staying with their Dad. My
poor parents have had them during the day all week. I haven't really
seen them. There is an ache in my heart and a sadness. They are only over the road but the distance seems immense.
They lowered my second
dose of chemo drugs. My body had not coped so well with the toxicity of
the first. It took a couple of hours of sitting around and only about
twenty minutes at most of actually being syringed full of drugs but
it was painless and sensation-less and over with for another three
weeks. I didn't like being back at the hospital again after the last
stint I had there. I felt a little on edge and was glad to get back home.
I had a lovely weekend out in the sunshine in my garden hammock and felt
really well, buoyed up by happiness. Very little nausea at all and
quite good energy levels. But by Tuesday I felt rough, like I had a
cold coming on. I'm hoping it won't lead to hospitalisation again but
I've packed my bags just in case and take my temperature every few
hours. I need to try and boost my immune system before it depletes to
rock bottom. I felt low in spirits that day too. After playing the piano for about
an hour I went back to bed and spent most of the day there.
Completely unmotivated to do anything.
Wednesday was a busy
day. I had a heart scan at 8am at a GP surgery in Lancing. It was a
detailed ultrasound of my heart, very much like when you have a baby.
You can hear your own heartbeat too. The cardiac specialist said my
heart was very healthy and he could tell I was very active. I have to
have another one in six months. The chemo drugs can sometimes
temporarily affect your heart but mine is fit and strong. Good news
number one. After the nurses visit it was back to the hospital for an
appointment with the oncology consultant. They had weighed me the
previous week. The nurse said I didn't need to take my coat off as
I'd just struggled to put it on. My arm is still slightly sore but I
can move it pretty much normally now. It's just awkward with the
plastic bit on the end of the tube to put long sleeves on. So I had
apparently put on two kilos. I think that's about five pounds. In ten
days! They weighed me again without my coat on this time. I think I
need to have a sort out of my pockets - my coat weighs two kilos!
I went into the
consultant and he had a listen to my chest as I have started to cough
quite a bit and my throat is sore. He said it sounded fine and to
keep an eye on my temperature but I'm confident I won't end up in an
isolation ward this time. He said my bone and CT scans were clear so there was no cancer anywhere else and then he measured my tumour and announced that it
had halved in size! I was completely amazed. It doesn't feel like it
to me. I wasn't sure it had changed in size at all but he was very
smiley and pleased with progress. Wow I walked out of there on air. I
even did a little run! Good news number two!
Just under two weeks
and I will be half way through my chemo sessions :)
Total so far £2635
Please donate if you haven't already. I really admire Emily for doing this and it makes me really happy as we raise more and more to support people in my situation. All the links are top left of this blog.