My second round of chemo

Over a week later and I woke up in bed to think where the hell have I been in the past 8 days.

Chemo was hard,  for people that are about to have the same chemo, I must inform that my experience seems to be not normal, so please don't read my words and think this is what it will be like.  Please read this about the cancer treatment and side effects 

But it seems for me, I fit into that 5% that have a bad reaction to it, bloody brilliant! its been Hell.

 The collection of drugs I take is called 'Folfox' which makes it sound more like a Northern 80s nightclub more than something that beds you for a week but when  looking up one of the drugs (oxaliplatin) I was  surprised to what it read on the Macmillan website.

Hair loss

Your hair may thin but you’re unlikely to lose all the hair from your head.

I had one chemotherapy, sneezed over breakfast and my hair was in my Frosties, what the hell is all that about.

So, Mum and me was in the chemo ward a week last Monday, I have an injection with a type of drug to stop two of the side effects happening from one of the chemotherapy, and thats sickness and abdominal pains, half an hour into the chemo the abdominal pain started.  I guess i freaked out due to thinking that they have given me the drug, so why was it happening, its not a small pain, its a heavy paralysing shooting pain and due to the amount of pain, both me and my Mother both seemed to jump.

The nurse called for the Doctor and he came, the pain eased, and then came back, but then eased again, so I learnt, when it starts to hurt the best thing is, is to breath though it, as I knew it would settle down. Then I was sick.

After 3 hours of chemo, I am attached to a small plastic container with a deflating balloon inside, which pushes more chemo into my system for the next 48 hours, and dangling from my other arm is a  compact plastic box containing a large injection that pushes anti sickness drugs for the next 48 hours,  and with a look in the mirror, Im ready to hit the town!

Well, to be fair at that point the only thing I'm hitting is my bed.  I guess I walk out of the ward and I kind of remember getting into Mums car, I'm not sure of the whole details, as from that point I feel totally drugged up, and I guess thats exactly what I am.

I have an idea on what happens throughout the week of been in bed, it starts off with a lot of sickness, and when sick my temperature raises very high, very quickly,  its not a nice feeling, if feels like all the chemicals and poisons of the chemo are trying so hard to escape you are not just throwing them up, they are sweating out of every pores. When having chemo you should always watch your temperature, and if it goes over  37.5C, thats when you start to worry.  But with this type of reaction I am sure my temperature goes sky high every time I am sick.

The sickness, wow, I am sick until nothing else can come out, but that doesn't stop my body from trying to get more out, and when it gets to that point, this vile green liquid spews, which I can taste the chemicals in, which makes me gag more, its bad but looking on the bright side! I know this only lasts two to three days.

Day three seems that there is a small light at the end of the tunnel, the sickness started to easy, there is a light.

But then the next stage happens and it is more subtle that the sickness stage, but it seems to last a lot longer. I felt I was hit by a bus, and then was in a comma, and then on day 8, when I woke up,  i cried,  In the joy that it felt like I had just got home form a very distant and dark and different place, a little battered and a little bruised, but still home.

I am having the nano knife surgery done a week on Thursday and a problem been, my chemo is on monday, I feel I am going to be in no state to have the chemo, and then days later travel to London to go to that ( I feel sorry for the person I will be sat next to on that train journey!) not sure what to do at this moment in time, the surgeons in London like you to have the chemo, and so do the Oncologist in Leeds. I'm not sure if it's physically possible. 

Luckily that's where Pancreatic Cancer UK are great for advice, and there are always well known  about each of the treatments. will call them today for advice.

When writing this blog I found it difficult to write about how the chemo was. I have three other blog items I have not published which where even more random than the ones I publish. I have been avoiding this one. But, last night I started to write it and once I did, it felt better. I know I have been quite descriptive on how bad it's been. I hope I have not offended anyone. 

I have an pre-assessment, and I will let them know how it has been, hopefully they will give me more sickness drugs, but I will write about it on here.

This is now nine days after and I still feel light on my feet, but It's so nice to feel back to some kind of normal again.

Trip to London for Nanoknife

Rob and me went to London today, this was to find out if I was able to have the Nano-knife procedure. 

Nanoknife is only available privately and not on the NHS and only available in London. We have come to see if it would be possible to have the procedure, this involves electrocuting the tumour to kill it. This means another scan and I always get nervous about having scans, the tumour is on the liver and is about 2cm, so you get scared it's grown or spread.

Pancreatic Cancer Action was on the radio about its new adverts with its slogan: "I wish I had testicular cancer" and also "I wish I had breast cancer" on LBC

http://l-bc.co/b11vFh

I was interviewed on the way down to London after the gentleman who had testicular cancer and said it was disgusting, at this point the interviewer said we are going to talk to Carl next and he has pancreatic cancer and it may be a good thing to bring us both on to say our point of view, I am happy to say that they didn't do that, as that may of been slightly awkward.

I said that all cancers are terrible, but testicular has a 97% chance of survival when Pancreatic cancer as a 3% chance. I wish I had no cancer, but I wish I had the percentage of survival that testicular as. 

Also if the advert said "I wish I had no cancer" then no one would be talking about it on the radio and it needs more media attention due to not changing in the past 20 years. 

There has been mixed views on the subject on twitter about this.

We arrived in London, an hour before the meeting with Professor Leen at Hammersmith Hospital. I always get so nervous in hospitals. Professor Leen was really lovely, he made me feel at ease. I first had ultra sound, and noting was found, then there was ultra sound again but with dye.

The tumour was found, and this is the video of it, it is the round black shape in the top left, it has not grown, it is still 2cm, so far it had not spread, and it's not around anywhere dangerous so they are able to do the procedure. It's costing 13,000 pound. luckily I do have cover.

Rob and myself are throwing everything at it, and I will keep blogging to pass on to others the conclusions. 

But for now, it's good news. 

Also, thank you to you all reading my random blurs! The blog is getting around 200 to 600 hits a day, and I enjoy writing it, it helps me to put it all down. 

So, thank you, 

Carl x

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

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.

News and Radio

I have been on the TV and the Radio today to talk about the Pancreatic Cancer Awareness month.

The TV interviewer asked me a question: How do I cope with this

I am not sure on the answer i have given, but i must admit thinking about it now, i just keep really busy.

TV interview here

Market Wraps seems to be getting busier! and i am now putting all my engery and time into this.

Personally I think this is how i deal with it all, if i go to a more darker side of my thoughts I then think about how I can push my business more.

There are so many thinks i am working on in the pipeline of market wraps, I am very excited about the future!

The work do!

Last night was the work Christmas do! It was a good night! I work with people that are not just my co-workers, they are also my friends. I did not drink as much as I would of usually drink, as it prob won't be good for my insides and emotionally I'm not sure what I would be like, also on many other work do, I end up dancing and making a prat of myself on a table.

So I ended up drinking slowly, there as been many of new feeling and experience lately and drinking
Slowly was one of them!, as I watched my friends go from sober to, well not so sober, it was nice to take a back seat and instead of jumping up and down to shaking Stevens and his one and only hit, to watch everyone else do it.

There was tears, not mine this time, but some of my work friends, I think the whole experience of this as made me realise that, away from who we are and what we think and what we own, we are all the same.

Throughout all of this in the past few week, I have been told how lucky I have been, this may sound bad, but I have never felt lucky! When I was told I could be operated, I think there is only a few that can be, it is ussual too late, but with the cloud of  'it could always come back' I have questioned how can this be lucky, but as I watched everyone enjoying themselfs, and people opening up more, and enjoying the Christmas party, I had a bit of a moment, and I realised why I was lucky, simply because I was lucky to be there.

Changes in last 12 months

My life has dramatically changed in the past 12 months.

I was 13 stone and ok in health, I went to the gym most days before getting told I had cancer   

I then lost 4 stone and it got to a point where I could not look in the mirror (and when I did it was all ears and teeth and eyes) it not only takes away your identity but also your confidence and there is also a voice saying a lost of confidence is the least of our worries. My partner was amazing though this time, you hear many story's that partners just can not deal with it all and walk away. Mine didn't and very glad that was the case as I am not sure how I could have not done this without him. 

For me, after cancer I dropped from a fit 13 stone to a ill 9 stone. I was all bones, it hurt when I sat in the bath, due to this I felt I had gone from 38 to 80. I could not walk far, at the start it was difficult to get out of bed.

It does return, I put my weight back on (in fat and not muscle) and I can not go to the gym, I cycle to work, and my confidence is better than it was a few months ago.

There're as been a lot of weight loss

And a lot of weight gain in the past few months 

I'm still getting used to the physical changes in the past 12 months and physiological changes too.

In the past twelve months I have also gone part time at work, this is something i would not of dared done before I got ill due to money, (and i still am not sure if I have done the right thing) but I have decided to concentrate more on my small street food business www.market-wraps.com 

Now it is hard work to do this, and i do get more tired than i used to do (I did run Market Wraps before I got ill, but i did not put as much time into it)

But, with something that you love to do, it does give you a purpose, and for me, keeping busy and active distracts you from  any of the negative thoughts that cancer can produce (dont get me wrong, i do have dark days and i can get depressed, but for me, my passion of running Market Wraps keeps me sane.

Theres been so many changes in me and my life, physically and mentally in the past 12 months that I can not write about all of them.

It seems that it has been a journey, that as changed me, for good and for bad.

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.

Changes

There as been strange changes in me in the past few weeks, materialist goods don't seem that needed anymore.  It is Christmas and for the first time, I don't really need anything, I love gadgets, but as I look around currys, there is nothing that I really need or want.

Also another change, the things that used to stress me dont anymore, stressed at work? Get cancer! It does change your prospective on things, I feel in certain situations I'm more calm.

Me and my partner, we have never really argued, well, not much, but now, there is no point to arguing, we get wound up still, I guess more about the situation,  but somehow it feels it has made us even more closer.

Also, at the beginning it drove me  mad, from when I woke up to when I went to bed, the situation was always on my mind, and though out the day processed the information over and over again, that hasn't changed, but I guess learning to live with it has, it seems to get easer.

There as been some changes in others too, some people can not deal with it at all, I haven't heard much from them since this, I understand that, they are not sure what to say so it's easer to just not say anything.

There are also physical changes, I lost at the most 3 stone.  I would of discribed myself has stocky now I am very slim. I have started to put weight back on.

I guess the key to all this is ride Throghout all of the changes, because whatever changes happen, physical or mentally, with me or with others. Behind it all, everyone are still the same.

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.