Dagboek van Philippa/ Philippa's diary
Email: philippa@rdenhollander.nl                                   Last update: 22-05-05 20:38.







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Open letter


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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