Tuesday, 6 May 2014

The new normality

 I have not written a blog item for quite a bit of time now. I am currently about to have chemo (Thurs), after that I have another 2 to go.

My hair as started to grow back, I am not sure why, as i have not finished chemo yet, it is more fuzzy felt more than hair.

It does seem that last time the chemotherapy made me sick less that usual, but this sickness has been replaced by a bit more pain.  The other day I had abdominal pain, and I went dizzy and thought I was going to pass out, i am not sure if this is side effects from the chemo.

So, my future plans are:

3 more rounds of chemo, then after that a CT scan, then I am hoping to put a bit more normality back into my life.

I will be going back to work at this point, now I am not sure what good I will be, due to this amount of chemo. My brain feels like it has been taken out, and replaced by a brick.  My official title may change from web developer to flower pot, as they sit me next to the window holding some flowers.

But whatever happens, I am looking forward (and a bit nervous) about going back to some form of normality. 

When I say, some form, I guess I know the situation probably will not allow me to go back to the normality I used to have, I guess the key is to get it as close to it as I can. 

Cancer has changed me. It has changed me physically and what I am able or unable to do, my body will not allow me to just get up and go anymore, but my brain does, which adds to the frustration. I get really tired and there is sometimes pain, and my thought process can be very clouded.  I am now classed as disabled, by looking at me, no one would know there is anything wrong. I have applied for a disabled car parking badge, this seems to be a controversial subject. The government does regard this as a disability and have been helpful with advice, but when I have told some that I have applied, I have felt a bit of hostility, I guess people judge on the better days, sadly it's only my close family that see me on my worse days, a parking badge will help not just me, but Rob and my family at the hospital when I am leaving after chemo, there is never any parking spaces, and 4 flights of stairs while been sick is never very nice. I now know and accept that it is a disability, no I am not severely disabled, and it is not one that people see, a missing pancreas is not like a missing arm, but a pancreas as got it uses, and with half of it left, I do miss the other half! It has also changed how I look, from scars to experience, it as changed me physically and it has also changed me mentally, and I don't mean just chemo frying my brain, I mean the whole experience as made me see life in a different way.

I am really looking forward to get back to my street food business too, I have really missed it. I was talking about this to one of my doctors and how much I miss the work, she told me to do it from my sick bed, I am not sure if she understood what street food is, I know it involves a bit of theatre, but I am not sure if making pulled pork wraps from a bed while not being that well, in the middle of Briggate would work.

But I took her advice, and started making plans of some changes of "market wraps" from my bed. A change in menu, a change in the look of the stall, and a change in doing what we do now, but just doing it more. I decided to call the bank during one of my better days to see if they were the new helpful bank they now claim to be on there advert. All was going well on advice of how to ask for a bank loan, until we got to the point of pancreatic cancer been mentioned, I felt the draft from the virtual closed sign been shut down on the phone. This is what I mean by accepting that things won't be the same again.

I was able to work on the stall this weekend, and with that I brought in my new idea of the new menu, gourmet wraps and sandwiches, made in front of the customer in the morning.

They went down well, and we sold out, but more than that, it felt great doing something different, working at the stall, and seeing everyone at the market. Just a small sense of normality again.

On talk radio was a discussion about what it is like to live with cancer. I found it interesting, not as many would think. I was not comparing notes, it was more seeing how others do it and try and follow suit. If someone asked, how do I live with cancer, I am not sure what I would answer. 

To go through this experience, it is bound to give you some lesions in life, and it as! I think... And it would be great to reveal and share those big life's lesions in an almost revelation way! Sadly due to chemo brain, I think I have forgot most of them! Shame really as it would make a great blog item! 

I was thinking about how we treat getting older. Last December I hit 40, I did not really experience the hitting 40 in a normal way, so I am unable to write about it from that view point. I am guessing that you get to 38 and then suddenly you start to prepare mentally for the big four zero. For me it was different as I found out I had pancreatic cancer at 38, so the last thing on my mind was, I am 40 in two years time. 

I hit forty, and was asked the usual questions, "how do I feel about hitting forty" "it's downhill from here" etc.....

My blank face probably gave the game away that I had not put any thought process into this subject.

I guess I asked myself those questions after I got to 40. When someone hits a rounded age, questions like that I guess are standard, it's what we all do, we send joke cards about getting old, showing images of a couple of old dears with various body parts hanging low, or someone loosing their mind etc.  We all seem to treat getting old as a negative thing, and that is something that has changed for me.

How do I feel about hitting forty? I'm extremely thankful for it. A birthday does represent getting older, it represents another year of surviving, and a year of the experience of life. A year of sharing moments with love ones. It's a shame we all treat getting old as a negative experience, imagine how it would be if we all saw it as a positive, that would truly be a celebration.