Here Comes Another Blister

Recently my days have been ok and with not many problems. I am continuously getting my hot flashes probably more than 20 / day !  I regularly have an embarrassing moments in the shops, London underground, buses, etc. You name it I had it ! Firstly I get really red face, get really hot, feel like jumping in a cold pool and than i break out in this horrendous sweat. Not a great look for a girl i tell you ! Following this I wipe the sweat off my face / my neck and with embarrassing wet patches around my T-shirts walk out of the shops, buses etc. Even my Japanese fan is no longer helping !
Im glad weather is changing slightly these days.

Aside from my very uncomfortable hot flushes Im doing ok. Im spending my days looking after myself, enjoying cinemas and ice cream with my friend in soho in London, being happy to have found edamame beans so I can actually make them at home and generally trying my best to contribute to my clinical trial treatment.   

However, I did have a little bit of the problem with my picc line (tinny little tube in my arm used for bloods and treatment infusions). It started bleeding a little around the site and I had this massive fluid filled blister pop up. My skin is very sensitive to various dressing as it seems. 

As it was saturday morning and district nurses are not fully operational I had to go to A&E only to be told after 3 hours of blood testing and waiting around that they can't change my dressing and I had to go back to my hospital where I spent many months undergoing gruelling chemo regimes. I wouldn't have minded waiting in A&E so much if my good friend Tes wasn't coming around to stay with me for the weekend. Also air-conditioned hospital was great for my hot flushes too ! I only had one whilst waiting for 3 hours !

On the good note my bloods seem to have gotten better, only ever so slightly but little things these days make me happy. 

Elana perfectly described how little things in life can make you happy and here is a part of her blog that she kindly allowed me to share with everyone:

(also I should point out that she has finally created cancer ebook that you can download for free)

From Elana's blog at http://zenpsychiatry.com

Afternoons were for lounging. Maybe I’d sit in my parents’ garden with a book or my computer. It would be quiet, but I felt I could hear all those little sounds—the buzzing of bees as they flew around the rosemary bush, the crunching of dry grass as deer picked the ground for food, the constant “whoosh” of the freeway a few miles away. I felt so joyous and appreciative for where I was and everything I had. I don’t think I had felt so happy in my entire life.

You might not have guessed that at that moment I was in the middle of battling an aggressive form of lymphoma, and was undergoing one of the more arduous chemotherapy regimens that exists.

I could no longer work, could no longer drive, could no longer take care of many basic needs. I looked in the mirror and saw a bald, atrophied, chubby-faced version of myself that was a far cry from the Elana I used to see. So how could I be so happy when so much I loved about my life, so much that identified me, had been taken away?

I was so happy because I had gained far more than I had lost.

I was happy because a month before, I couldn’t eat because either my mouth was covered in sores, making eating excruciatingly painful, or I was nauseated to the point where I’d throw up anything I’d eat. Meal times were a cruel joke; I would be starving, and want nothing more than to stuff my face with a hamburger, but instead would have to eat unflavored popcorn, waiting 15 seconds before putting each kernel in my mouth to make sure I wasn’t going to throw up.

Or, I’d have to perform an elaborate ritual to numb my mouth before eating something soft, bland, and unsatisfying (first, take two oxycontin and wait an hour; then, swish numbing mouthwash for at least a minute to numb entire mouth—also taking away my ability to taste; then, apply numbing liquid to each individual sore; finally, eat meal, but make sure to finish within ten minutes before everything wears off).

Now, I could eat with gusto! I could taste my food!

One day I went out to lunch with my mom and birth mom at a nice outdoor cafe. I was in such anticipation of the meal that I found the menu online and picked out my meal ahead of time. I savored every bite; I savored the conversation. I ordered a glass of chardonnay even though it was the middle of the day (why the hell not?). I ordered the biggest dessert on the menu even though I had ordered an appetizer, too (why the hell not?).

I was happy because whereas before I felt crippled by chronic body pain, my pain was now well-managed with medications and alleviated as I healed in this better environment. It no longer hurt to stand up, to walk, to do basic tasks around the house.

I could get my own glass of water. I could make my own breakfast. I didn’t wake up hurting so bad I almost couldn’t breathe, grasping for my pain medications by the side of the bed (because their effects had, unfortunately, worn off at some point in the middle of the night).

I was happy because I could now focus enough to read a good book (or a trashy magazine), I could get off the couch and go for walks in the near-perfect Bay Area weather, I could go to the bathroom without feeling like my butt was being stabbed with a kitchen knife (I wish I could say mucositis just affects the mouth… but sorry, it doesn’t). How could I not feel like my life was wonderful? How could I not feel blessed?

Yes, cancer has caused me pain. But—more notable than the pain is the appreciation for life my illness has given me. There’s nothing like the threat of having your life taken away to make you appreciate the small joys all around you.