Dr P. did warn me I was in for a 'difficult' few weeks. And oh boy was he right. This is my 7th week on continuous Sutent at the highest dose and the side effects have peaked, I simply cant imagine them getting any worse.
Im having to type very slowly, using my nails, because my fingers are all split and sore and infected. My feet, who have behaved themselves until now, have decided they want a piece of the action so now the balls of my feet are incredibly sore. I can walk, but not very far and only by waddling along putting most of the pressure on my heels. I look like a penguin !
I can eat, but just a small amount at a time. Any more and I feel sick and end up rushing to the loo very regularly. The one thing I seem to have conquered though is the dreadful indgestion I was getting. Whilst we were on the cruise Caroline told me to try decaff coffee and caffeine free coke. The improvement has been amazing, I hardly ever get any indigestion now I steer well clear of caffeine - its in chocolate too which is a bit of a bummer.
The exhaustion is still a major problem and thats now exacerbated by the fact Im having trouble sleeping at night. I often wake in the early hours in discomfort, I wouldnt really call it pain, and have trouble getting back to sleep again. So Im permanently tired and find myself nodding off at the most inconvinient moments.
Every single hair on my body is now platiunum blonde (ok - its white), my arms, legs eyebrows and eyelashes and all the fine hairs on my face. Im turning into a Yeti !
Reading the above paragraphs it sounds like Im ready to be shipped off to the knackers yard ! But for some reason my body is coping amazingly well, My blood results are almost normal and no cause for concern at all. Ive lost a little weight, but not much and I still look well.
The best news of all is that my tumours still appear to be stable, buying me more valuable time.
Ive made a start on the childrens memory boxes. Ive bought a lovely photo album and am sorting out all the old family pics from years ago. Pictures of my parents, grand parents, grand grand parents and I even have one of my great-great-great grand father. He looks like Captain Birdseye !
The letters Im going to write them will be the hardest part I think. I need time alone to do this, away from everyone. So next Tuesday Im going down to Brighton for a few days to see my brother Jon and make a start on the letters. With a bit of luck the weather will be nice and I can sit on the beach at the same time and top up my tan !
Thats as long as I dont fall asleep on the train on the way down and miss my stop ofcourse !
7 comments:
I am sorry to hear that you are not so well and uncomfortable at the moment but pleased that the Sutent is working for you and keeping things at bay. I can understand how difficult those letters must be to write but I am glad you are doing them. I think everyone should leave a note "just in case" for their loved ones to treasure. I hope you have a restful time at your brother's home and get lovely weather to sit on the beach. Sending you a big hug. Tells x
Dear Jane it is so good to get your latest news, I do miss you when you are not around. It is so hard to say anything that would take your pain away...It is a real "bummer " It is good that you have started the memorie boxes and I hope that you can write the letters. Only yesterday I was brave enough to get out my will that of course I now have to remake sinse my darling God daughter died almost 2 months ago now. I had also written her a letter....it almost broke my heart when I re read it ....and I had written it !! but that was almost 15 years ago...never did I think I woul have to change things. Anyway love take great care of yourself and have a lovely time down at Brighton I will be praying for some nice weather for you. Much Love Syil xx
http://journals.aol.co.uk/sybilsybil45/villagelife/
Hello Jane,
Good to hear from you, and good to hear you are not showing progression in the disease. The side-effects are no teaparty, but you are coping supremely well. Next week, all strength when you write those letters. Keep us posted.
Guido
Keep fighting!
jane,sorry for your pain,but its worth it isnt it? keep in there hun, you put me to shame. on the crappy days i get, when im really down,i come and read your journal. and stop my whinging lol. in awe lots of love mort xxx
Wanted to remind you, your not alone, many people here in J-Land are keeping you in their prayers.
God bless you & family.
Sugar
http://journals.aol.com/sugarsweet056/SUGARSLIFE/
Hello Jane - so pleased to hear things are going well for you, even tho you are not feeling so good.......swings and roundabouts for you isn't it. ?!?! Memory boxes, well that is a hard task you have set yourself - but i have no doubt in my mind that you will make them superb, something that will be cherised always. You are a very brave woman, and have touched the hearts of all who read your journal.
Enjoy Brighton.
Big Luv - Jaynee X
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