22nd
May 2005.
Hello
to all family and friends,
I am
acutely aware of how long it is since I have written an update in English and
although I do feel a bit guilty, I know that you realize that if anything
terrible had happened then you would have heard it by now on the family
grapevine. The reason why
I have not written in Philippa’s diary for such a long time is down to
my inability to face the truth about how her illness has affected me. In order
to keep putting one foot in front of the other it is essential to put on a mask
and pretend that you are handling everything. If you say all is well then you
hope that it will be, you keep smiling because you can’t afford to break down.
You can’t allow yourself to start crying because you can’t be sure you can
stop. Writing Philippa’s diary was just one more facade that I couldn’t deal
with. When I started to write the
story of her battle with cancer I was bearing my soul because I had to get rid
of the unbelievable amount of stress that was building up inside me. As time
went on I became ashamed of not being strong and brave and it became easier to
wear the mask than to show how her treatment was getting to me. I genuinely
thought that people around me did not want to be burdened with my grief and
insecurities. Lying to everybody in her diary, which to me should have been a
truthful document, was something I couldn’t do.
When the
intensive treatment finished René and I breathed a sigh of relief, the worst
was over wasn’t it? In fact this heralded the start of the acceptance process.
Up until this point we had not had the chance to breathe let alone deal with
what had happened in our family, suddenly the waters had become calmer and the
treatment simple – everyday the same dose of chemo and Philippa seemed to be
fine. Why then was I starting to fall apart?
The enormity of it all had finally dawned on me. I had already developed
a cleaning and tidying habit during Philippa’s intensive treatment which
stemmed from the insecurity of thinking that all is well and having to leave for
the hospital unexpectedly in the middle of the night. When the stable and secure
world you know suddenly goes haywire you control the only things you can.
Bacteria and viruses are potentially critical when her resistance is low and I
found myself using Dettol and Ajax until the skin was peeling from my hands. A
tidy and clean house had become a symbol for how I was doing but it was far from
the truth. The mask remained firmly in place for the public but in private I was
far from happy. I feel as though I spent the months from September to February
living a double life, a public smile and a private depression. I was brought to
a standstill in March by a lung infection which I had been ignoring until it was
no longer possible to live with. Time to face up to the reality of what we are
fighting. Some days we are able to concentrate on how well Philippa is doing and
then there are the other days .....like those days that you hear from parents in
the hospital that the treatment of several children has been stopped because
they have no chance of survival. There
are no words for these feelings, you just hope that you’ll never be in that
position. In the last couple of months I find myself beginning to feel
more positive. It is a question of finding people to talk to who understand
exactly what you have experienced and who are not afraid of the emotions
involved. Understandably many people are afraid because it isn’t often that
you come across children with cancer in your direct circle of friends.
Philippa
is doing well in this phase of the treatment. Her blood values continue to
surprise the oncologist, remaining
constant for several weeks and then becoming very erratic suddenly.
The medicine dosage has been changed a few times; first increased in
order to bring her white blood cell count down and then reduced again because
her liver function rose above the critical values. Every time her blood values
are checked I get very nervous, we never know what we will hear. She remains a
cheerful little girl with an uncomplicated love of life; in a world where
everybody seems to be worried about just about everything Philippa could teach
us a thing or two about “chilling out”.
I hope
that I have not painted too somber a picture of our lives, but sometimes you
just have to tell it as it is. To end on a good note, we recently had a holiday
on a farm nearby which was specially for young cancer patients. We had a
fabulous time and you can see the photo’s in the Dutch photo album. Hopefully
now that I have been honest about how things have been, I will update this page
more often. Until then, lots of love, Rhian.
xxx