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Tedavi?
Sırf daha rahat yazayım diye kendi bilgisayarımı ofise getiriyorum artık. Çünkü o kadar çok şey oluyor ve hiçbirini bir yere kaydetmiyorum, çok korkuyorum herşeyi kaybetmekten, unutmaktan.
Son tatilden beri olanları yazayım (bundan sonra da bu kadar ara vermeyeyim!). Onur 21 Ağustos’ta bir nöbet geçirdi ve sağ kolu ve eli belirgin bir şekilde güç ve yetenek kaybetti. Onur’un tümöründe büyüme tespit edildi. Yani ödem azaltıcı-kemoterapi ve kafasındaki elektromanyetik alet yeterli olamadı, tedaviye cevap vermeyen (bağışıklık kazanan?) hücreler atağa geçti. Zaten artık bu işe mücadele/savaş denmesinden de sıkıldım; bu bir savaş değil çünkü, bu bir ordunun tek bir bebeğe saldırması. O yüzden, evet, artık “mücadele” zorlaşıyor hatta bitiyor. Elimizde oynanacak koz yok, ve Onur’a sunabileceğimiz sadece klinik araştırmalar var. O herşeyi sonuna kadar denemeye kararlı diye anlıyorum ama onun da gücü azalıyor (bedensel, zihinsel) ve bazen zor geliyor bunlar ona da. Ama bu işlerin peşinde koşturmak gerekiyor ve her daim sonuca da ulaşılamıyor. Bilemiyorum ben de.
Daha rahat olan Temodal kemoterapisi çok daha ağır ve aslında beyin tümörlerinde çok da önemli başarılar elde etmemiş Irinotecan adlı bir kemoterapi ile değiştirildi. Irinotecan berbat bir ilaç, üç gündür kendine gelemedi. Bu şekilde ne kadar devam etmek ister bilmiyorum, iki haftada bir alınacak bir kemoterapiden bahsediyoruz, zaten alındıktan sonra 5 gün kendini kötü hissedecekse ve zaten tedavi değilse ne için çekiyor bu eziyeti diye düşünmüyor değilim. O anlarda kafam karışıyor ama bunu da ona anlatamıyorum, yani SONUÇTA HAYATI. Hayatıyla ilgili inanılmaz önemli bir karar müdahale etmek istemiyorum, hele ki olumsuz ve negatif yönde etkilemek hiç istemiyorum.
Bilemiyorum ben de. Bazen böyle kafam karmakarışık oluyor...
Looking forward to the summer
It's been a while since my last blog post, three months in fact. I've been trying to keep things as normal as possible; going to work as much as I can and carrying on with life. We've been planning summer holidays (Devon, Dorset and Isle of Wight plus maybe Italy). I've sold the Focus; the DVLA have said I won't be able to drive for two years after the end of my treatment. A bit of a pain, but not too much of a problem especially as I now have a free bus pass! I've used it a couple of times and I've noticed two things: 1) Old people love using their free bus passes. Sometimes there has barely been a free seat in the middle of the day! 2) Bus drivers seem surprised that a young person has a bus pass, despite anyone who has their driving license suspended by the DVLA being eligible. We did a bit of fundraising for Brainstrust. We held a tea party as part of their wider "Tea Fest" event. We got local businesses to donate prizes for a raffle. We sold a whopping 2000 tickets for the raffle and there were some great prizes donated by the following companies: - Little Eaton Garden Centre - The Queens Head - The Bottle Kiln - Hackwood Farm - Horsley Lodge - Derby County Football Club - Derbyshire County Cricket Club - Little Eaton Garage - Barry Fitch Butchers - Be Therapy beauty salon - Angelo's at the New Inn, Milford and many more. After all the money was counted, we raised a whopping £1300! Thanks to everyone who came, made cakes, helped out and donated - you all made the event a brilliant success! A big thanks also goes to Kate Ashton, who raised £2300 for Brain Tumour Research by doing a sky dive! Thanks also to everyone who sponsored her! Anna and I went on a very high ride in Derby market place at the weekend and that made us realise just how scary it was! Well done Kate. Also, thank you to Karl Gardner, partner of Corinne Waterworth (a friend of Anna) who is amazingly running the Great North Run for Brain Tumour Research. Most of the side efects of the chemotherapy have been lessening. I generally don't feel sick on the tablets and my appetite is generally good. I feel quite tired but this subsides usually a week or so after I finish taking the tablets. I had my latest scan and today I got my results. The possible, in order of best to worst, were: 1) The tumour is stable and there is no change 2) The tumour has grown slighty 3) The tumour has grown significantly Obviously I was hoping for option 1. I haven't noticed any change in my symptoms but this isn't an indication of no change. My conultant rang this morning at 09:00 (I was still in bed; no matter what, I always sleep well!) to say there was no change and everything is stable. Great news! Anna and I are obviously delighted and we can look forward to the summer!
