A thank you to O2

Due to my private healthcare I have had my CT scan, I now know where I stand and I have arranged to start chemotheapy a week on Friday. I will then start to have my treatment again in London in an private hospital on Harley Street.  If it was not for going private I would not know this yet as my NHS CT scan is on the 14th Jan.

Dont get me wrong, I love the NHS, and I am thankful for such a system, but it is also nice to have the support from private hospitals.

I am one of the lucky ones, I am not rich, I haven't got a lot in savings, but due to O2, my employees, I was given a package that included a very good health care insurance and to put it bluntly if it was not for this the chances are I would not be here now. Thank you O2, and with this backing I am going to do my best to beat it again.

I talk about my street food business on this blog, but I also work for O2 part time.

I remember getting my healthcare number through the post years ago. I put it aside and forgot about it, not thinking that one day, that card will be a pass to save my life. Now when it came to bonus time! well, instant gratification, but health care! well, lets just say I enjoyed the bonus more. But now I realise how important this card is to me, I have used it quite a few times in the past 2 years, worth more than any bonus. I am thankful O2 have contiually supported me on my cancer journey.

Also messages from friends and family, they are all empowering, they help me stand tall. Robs Mum and Sister came to see us today, this was therapy and due to not been able to see them at Christmas it was great to see them.

I am about to go to my step Mums and Dads house in Portugal for a couple of days. I have had good news and I can start chemo and I can have the ablation (the treatment in London), but I do feel a bit of fear, at least this time I know what chemo can do, and I can arm myself in everything possible to be able to cope with it, everything from hypnotherapy to sickness drives to a sea band (I have been recommended this but not used it).

Also Michelle, a friend of mine as recommended some cream called uddermint, from mole valley farm this is for my shoulder. I am getting pain from the liver cancer which is passing the pain to my right hand shoulder. This is quite common and nothing seems to be budging it, but this cream really helps and seems to be better than deep heat.

http://www.molevalleyfarmers.com/mvf/store/products/teisen-uddermint

I have just had my haircut which seems a bit of a waste of money due to been prepared to shaved it all  off in a couple of weeks (this time, i will do it, not chemo). When the hairdresser said to get the style i require I needed to grow it more, it did kind of kill the conversation when I said, theres no point it will all be gone in two weeks! he listened, while talking scissor or any other sharp objects from arms length away from me.

So right now I am looking forward for a few sunny days away, yet again, thank you for all of your emails and messages.

Thank you x

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.

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.

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. 

Reaction to chemo

Well...

I did want to do a more upto date blog article.  I was going to have chemo and then after write what the chemo was like, but sadly I fitted into the 5% that had a bad reaction to them.

I even planned to do a picture every day of the changes to me and what the effects of chemo can have (in my head i was going to re-enact the person on youTube signing and dancing in the chemo ward attached to a drip while dancing to a Kelly Clarkson song) but believe me i was unable to lift my head off the pillow, never mind smile for a selfy!

I can not really remember what it was like, after having my treatment all was well until i got home,
thinking back it's all bit of a blur but first there was sickness, a lot of sickness. I did not eat before the chemo and i wish i did, i felt that maybe i should not have had chemo on a empty stomach. The sickness is grim, like i said i did fall into the 5% that have a reaction so if you are reading this and about to have chemo for the first time, try and not to worry.

The sick was green! a very bile sickness, it was not nice. I had to go back into hospital and I think I was there for about 3 days, but yet again i am not sure. I was in and out of sleep.

My visitors probably regretted visiting due to the high costs of the Yorkshire Cancer Centre car park and the lack of communcation out of me (on the other hand this may of been a blessing).

It was nice to get back home, but then the diarrhoea started, and at this point of reading this blog, you probably will be thinking why didn't I read the blog about flower arranging or something a little more plesent.

So back to the hospital it was for another 3 days, the good news is each night i stay in hospital  I get paid due to my private health care, which is almost getting to be my full time job these days.

The nurses had a welcome back party for me (which i was so out of it the first time I went in I could not remember what i had said, or who they all were) but still, there were really caring.

If you ever want your own room in hosptial just say you have diarrhoea and you will get your own private en suite room, this does come with a warning, the only down side is your not allowed to leave the room, and after 3 days you do realise why the windows don't open.

Another 3 days in hospital and i started to come back to the land of the living. When your sick after chemo, you really appreciate the time when your not sick.

The next time I have chemo there are going to fill me with sickness drugs, i am hoping that all will be better the next time around than this.

Whats next, Chemotheapy and nanoknife

I haven't purposely asked certain questions on what is about to happen, so i appoligies for someone who is going through the same thing and is looking for answers.

This may be quite vague but to my knowledge this is what is about to happen.

I have been told that I have to have 6 months of chemo, now i believe that they do a CT scan after 3 months to see if it is working. I will keep a blog to let you know how I am feeling on this chemo, but i must admit, i am scared.

The last chemo took around 30 minutes to put into my system, this is going to take 2 days. I feel OK right now, so to hook myself for 2 days to make myself feel sick just seems strange.  I am up and about right now, back at work and about to go on holiday to Prague, so to visualise someone one sat in bed, thin and hair falling out been sick, plugged into a machine seems very far from where I am but I may be in that state next week.

I know that they send a district nurse to our house to see if all is OK with the chemo, (mental note, i must tidy the bedroom).

The doctor said that some of the side effects are, hair falling out (which i am not that fussed about - i have just bought a flat cap so at least i will get money out of that) and feeling cold sensation in a different way (I may have to wear oven gloves when I get something out of the fridge, and I may not be able to drink cold drinks) but all in all, its sounds grim!

I have found a some inspiration on twitter! there is a young man (aged 13) called Josh Wilson (@SuperJosh) not only as he reoccurring brain tumor, but also neuromuscular disabilities, and his attitude is really positive, he is really amazing.

Also, I am starting hypnotherapy, the last time I had chemo I built an association with the hospital (even the car park), so when i smelt disinfectant  i was sick, when i parked the car in a mulit story car park i was sick etc... so hopefully the hypnotherapy will take off the anxiety of this.

I am also having what is called nanoknife, I believe this is a new technology that electrocutes the tumor to kill it. I will let you all know how this goes too, it is not available on the NHS and will cost around £11000, but this is covered on healthcare (if you do call your private healthcare and they say they do not cover nanoknife, it may be because it is known as another name, all i needed was a letter from my surgeon.

I am also taking Kinoko gold AHCC 
This suppose to work well with pancratic cancer, it is expensive, but if it works its worth it.

I am also making my own bitter melon tablets.

Well! I have my pre assessment tomorrow, and then 3 days in Prague, and then back for chemo. I am looking forward to Prague!