Ive survived my second infusion few days ago with no major side effects. Apart from feeling very sleepy on a day of infusion and day after, I was fine. However, my hot flushes seem to be worse than ever! This wonderful, sunny weather doesn't help at all. It seem to trigger my hot flushes even more.
Also I ve been told to avoid sunshine if possible, but how can I? I absolutely love my long walks. What I enjoy the most is having friends visit me and doing fun stuff with them that makes me smile Unfortunately, all that involves being outdoors :( most of the time.
Fortunately, most of my dear friends are very understanding of my needs so we try and balance it nicely.
Unlike chemo, which was absolutely awful, this PDL-1 infusion is great. I don't have many side effects, which means I can have more enjoyable days/weeks.
So this is some of the fun stuff Ive done so far:
I had my ice-cream
dipped my feet in
Thames water
" London beach"
Felt sand under my feet
Ive been in Cable Car and had some wonderful walks
Bought some lovely shoes while shopping with my friends
..... and boat ride too.
Mainly, I ve tried to be silly, have fun with my dear friends and enjoy life like no one is watching.
Simple things in life make me the happiest
Im so grateful to have such a wonderful friends and people surround me and never allowing me to have a dull moment in my life. I just hope my scans are ok so I can continue to enjoy my shortened life for longer. Im gonna have CT scan after my 3rd infusion and thats when I ll find out if treatment is working. Im so anxious about this. At the times I feel great. I even forget that I have cancer. However, dark thoughts are never too far away. I worry if this treatment will work. If my cancer will spread even further. I worry about the prospect of going back to chemo which I fear will most certainly kill me. Most of all I worry about my family and how they will deal should my heath worsen and should they loose me. We all had some losses in our lives. Some were very close to home and others not. Losses always tend to leave that empty space, that gap in our bodies and in our lives. That empty space never gets filled, it never heals and its always there. You just learn to live with it. I ve lost some dear family memebers and friends in my life too. Its never easy.
One of the things that made me cry and very upset is when my ex boyfriend asked me where I will be buried when I die... he said he d like to come and visit my grave from time to time. Thoughts of me dying and having my parents, close family and friends come to visit me at the cemetery still make me cry each time I think of it. I often wonder if I could have done more to prevent this illness from happening to me. Could I have done more to keep healthy and would that have done the trick or is this something that just randomly happens to us. 1 in 3 people get cancer and thats rather a lot. Have we become our worst enemies by creating fast and stressful lives ?
All I ever wanted is quiet, simple family life, it didn't have to be wealthy life just simple life filled with laughter, fun, health and happiness. Was that too much to ask for?
Recently, I ve looked online to order some DVDs. They are not out yet. One of them was available to pre order for 6. Oct '14. I was thinking that I might not live that long to see this movie on preorder. So I ve not bought it. I know people say we don't know how long each of us will live for and that you can go out on the street and be run over by bus the next day. Yes thats all true but with some of us cancer patients and cancer patients families its all very different. We live with a death for prolonged period of time. Its like family has to go thru extended grief but of course, whether it comes suddenly, slowly or unexpectedly death of the loved ones leave us with a feel of loss and its never easy
I wonder what my family will go thru after Im gone but I hope and prey that I ll be here for a little bit longer.
After all I ve been told I was too stubborn to die ....
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