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It does seem that last time the chemotherapy made me sick less that usual, but this sickness has been replaced by a bit more pain.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.

Result...

I work myself up when waiting for results, anxiety takes over.  The doctors are trained on how to give bad news, so you always know when it is about to happen (they seem to slow down and prepare you before revealing the news).

I get scanned next week to find out how successful the Radio frequency ablation was.

But, by axcident I have been given some results already.

My blood gets tested, at the start it was every 3 months, and now i think its every 2 weeks, this is called CA19-9 and every this below 32 is classed as normal.

When I got the call in December to say that they thought the cancer had come back, my reading was 90, a few weeks later it was 230, after that, I did not really want to know what the reading was, so I ignored it, and I think the doctors knew this as they stopped telling me.

Anyway! I am glad (shocked) to say that i found out yesterday that 2 weeks ago it had gone down to 78, this was after the treatment in London. I had a new test yesterday and I have just got the results from my GP, its now 31!

So, whatever we are doing, if its the treatment in London, or the chemo, or a vegan meal, or sucking on a lemon, whatever it is, it seems to be working, and for now, I am buzzing at the news!

Its chemo tomorrow, and you know what, I'm not scared, actually I am now looking forward. I suddenly see it has a friend, ok a badly behaved one, but still a friend.

How to wind a vegan up!

After my operation last year, i was told i will now start to eat only small but often, and i do eat often, but i also eat a lot which at least I have got one of those things right.

Now people in my situation hang on to any hope they can get there hands on, and I had heard about this thing that people call "healthy eating" but to be honest Im not really into those faddy ideas and I prefire to stick to lard thank you very much, but when I met this lady in the chemo award and she told me about moving on to a diet that is vegan and with that her tumor had shrunk, me and Rob my partner decided to do the same.

Now i must admit, I can not really call it vegan, as very occasionally we do eat fish and organic chicken for protean, but if I get frustrated by my situation then the best therapy is find a vegan, tell them you are vegan, and then tell them you eat chicken and fish (its like lighting up a touch paper on a firework) and sometimes a right good argument does you the world of good, and due to the lack of meat, they have less energy to argue there point so you can usually win! A vegan on the internet said I had a ugly soul when i purposeless told her this, which I think is a bit strong for eating a bit of chicken but there you go!

So, the future is nut cutlets! and I must admit, I have really enjoying it so far, we have been a bit more adventures with veg so instead of just boiling some carrots we have added loads of flavorings to the veg (when i say flavorings i don't mean 'beef!') and we are both plesently surprised!

But, when we have gone out for food, it has been disappointing, we went to a vegan restaurant and ordered mushroom stroganoff (and when i was ordering it due to my dyslexic head, all i could read was beef stroganoff which had the vegan effect yet again!)

Do you know when your hungry and you want to fool yourself that your enjoying something, so our first mouthful we both said it was nice, but the 2nd we realised it tasted like dishwater, after pouring on a ton of salt and adding high blood preasure to my list of issues i have right now, i could taste it.

We have been to a few vegan/vegi cafes now and some are OK, but only one as been great and that was Prashad in Drighlington, which is an Indian restaurant and was a pleasure to go into a Indian restaurant and pick anything off the menu (the starters are amazing).

While I am on this rant, when you go to other restaurant and look at there vegetarian range, some can be really poor too. When you go to Franky and Benny's and order a vegetarian breakfast its like a normal breakfast without the bacon and saussage! not a vegi burger or vegi saussage in sight.

I have also been having supplements which I will talk about next time.

If you want any reference on why the hell I have given up meat, read this:

http://www.telegraph.co.uk/health/healthnews/5698784/Being-a-vegetarian-can-cut-your-risk-of-cancer-by-a-half-claim-scientists.html

Foods-That-Fight-Cancer

Dietary Fat, Especially From Red Meat, Dairy, Linked To Pancreatic Cancer

Hair loss

A friend came to see me today and we were sat at the kitchen table when i looked down and saw some hair (which i thought was a bit minging).  I had just cleaned the kitchen so could not understand it.

I carried on talking and saw some hair in my eyes, i pulled it away and touched my head, the next this, half my hair fell out.

Now, i knew i would have hair loss, and it doesn't really bother me, there are bigger things to worry  about, but i didn't realise it would happen as dramatic as it did.

Its a bit like having a spot, you know you should not play with it, but you can not help yourself and each time i touched my head a shower of hair seem to fall down.

I decided to wash my hair and then brush it, not sure why as i haven't brushed my hair for 30 years, but it felt itchy.

I have been wearing a hat most of the night, and i was not going to put these photos on, but then i thought, what is the point of writing a blog about pancreatic cancer and the effects when i am going to hide what happens, and to be fair I'm glad i got to photo 4 and didn't stick to photo 3 for long!

This morning, when i noticed the hair falling

After washing it (the Rooney look) 

After drying it (the chuckle brother look)

after brushing it,  (the breaking bad look)

I did not realise that this would happen all in a day, and the lack of hair makes my ears look even bigger! I am not in pain, and i am not feeling sick. I did say it would not bother me losing my hair and it doesn't but the way it happened is quite symbolic and i think that is what upsets you more than the hair loss its self.  I am not sure if it is just hair loss or if i will also loss my facial hair, if i do I can at least pencil in some large expressive eyebrowes and freak people out in shopping centres purely for  entertainment, or when I'm angry i can pencil them slightly pointy. 

Its come back!

This is one post i haven't really wanted to write.

A month or 2 ago i got a call saying that my blood ca-19 had gone up to 90, anything above 30 and they are worried.

I had a CT scan booked, i decided to carry on and still celebrate my birthday at the start of Dec 2013, it was my 40th, and we had planned to go to London.

It was a great weekend, the hotel was lovely, and i went to all the good markets of London, and ate a lot of street food, I loved it.

But when i got back to the hotel, i didn't feel that well, i thought it was due to a lack of sleep so with that i went to bed but woke up thirsty around 2am.

I was not sure if i was thirsty or felt sick, I went to the toilet and wanted to go,  my temperature suddenly rose and i fell off the toilet, i won't go into graphic accounts of the evening but my stools where foul smelling and bloody, i collapsed.

I awoke just as quickly and felt my temperature come back, with that the adrenalin kicked in and i stud up and called for an ambulance.

I spent 3 days in hospital, it looked like this was down to a burst blood veslal and had nothing to do with the cancer, but it had shown a 1.5cm mark on my liver.

I got back home and had another CT scan in Leeds, and this showed the same.

So, here we go again! i start chemo next week, 14th Jan, to say I'm nervous is an understatement.

But i will keep a recorded on how it all goes on here.

A year on

It was one year annervercy last week that I found I had pancreatic cancer, I helped organised an event called street feastival! 

It was an aim to use my street food business "market wraps" to do some good and to give so thing back to the Yorkshire Cancer Centre and Pancreatic Cancer UK 

My original thought was to just give the profit to the 2 charities but proceedings seem to get bigger and my the time had come, not only was the venue pushing the event and organising singers and bands and DJs but also other street venders were getting behind the act too.

A company called Equal Experts also donated 1000 pound in raffle prizes.

We haven't counted the whole of the money yet, but it's looking like 1500 pound mark, which is not bad for a Friday night .

I

But for me on a very personal note, the day was as important not just to give something back but to also celebrated that I am still here. When I got told "it's cancer" that moment in time will always stick with me, it's when life changed, one year on, instead of tragedy, good happened and I am very thankful to all who helped create that good.

A few days before the event, I went down to St James to hand out some of the flyers. Due to the kind of light that only a late September can produce it made memory's come back to how I felt last September.  When I was walking up to the hospital I had to sit due to the lack of energy.  This was only a 5 minute walk up a slightly raised hill but to me at that point it was like climbing Everest. 

With this in mind you would think I would of ran into the hospital dropped the flyers and ran the hell out as quickly as possible (especially because I also still had 150 things to do before the event) but I didn't, I sat in the waiting area, but this time not waiting to see if it's cancer, or to see if it's operable or even to get my next round of chemo, this time I sat there not waiting for anything, just because for me it now not only feels safe, but also feels a part of me.

The cancer journey is not only one that involves the physical part, the operation, the chemo, but also invokes the physiological side too, the changes to yourself, your body, your views on life etc.

I sat there, and cried a little, only a little, I don't want you to imaging I was sat there like some type of mentalist screaming in tears in the waiting area, and I must admit if that was the case, it's all fine! But there is something now that for me feels very safe in the hospital. It was only a few months since I sat there, with my work mates as they collected money also for the hospital. We sat there to pose for a picture for there magazine.

Sorry for the blurred image, not sure why it saved like that.  

When I think back through the past year, it's all a blur really. I can not remember much about life before all this happened. Twelve months ago I said to the surgeon using my best baby voice "Am I going to die?", I don't know why I asked him in this voice, maybe because I wanted him to turn around and say "No, now dry your eyes and go and play" but he didn't, he just said, "I am not sure", the baby voice didn't work. But I know I'm lucky to be around now a year later.

After having pains under my rib cage on the right, and then turning a strange yellow colour that first made me look like Hommer Simpson, and then when my eyes turned yellow, i  just looked evil, I went to the doctors, after blood tests, I went to the hospital.

A week in hospital with expected gallstone issues,  (at 38 there was really nothing else it could of been) each test seemed to get more serious, each scan seemed more scary, the first scan was a ultra scan, the last one i was injected with a blue dye and I laid in a tube. 

They found it! The doctors came around the ward every morning, this morning they seemed to be more doctors than usual.

Each morning the doctor and the student doctors walk around each bed and say what is wrong with each patient, and the outcome.

When they got to me, they did the usual of pulling the curtains around the bed for privacy, but that's where it changed, there was a pause, they said do I want to know the results there, or else where.

I guess I knew that there was something wrong at this point, the doctor sat down on the bed, and told me they have found a lump on the pancrease.

I jumped up, and walked up and down, which due to the curtain been closed, was not much space, and five doctors been around the bed, my walking was not that far, the doctors opened the curtain and left.

Shock, Your head trys and fillters information, i stud in the hallway a nurse came, she was talking to me I told her that I can't have cancer,  my parter and i have just bought an house, life is good, we are moving In in the next few months.

In the next day or two I was told it was pancreatic cancer, I had never heard of it, I was calling it pacreasic for at least a week. I was told it was aggressive and I was lucky to be able to have an opperation, if that opperation was a success, and if it had not spread, then there is a 20 percent chance it may not come back.

My blog is about my new life now, part documentation part therapy, every time I have written a blog in the past it's never lasted more than one post! I hope this one lasts a long time.