Happy Valentine's

I wrote this blog a few days ago, and I am hoping that I will have enough ability to click the 'Publish' button of this blog article on Valentines day, if this was published on the 14th February i am happy to say that was possible, if its later then i haven't been able to.

So, (hopefully) Happy Valentines day!

Valentines day used to be a just a day where I had to buy a card and a present. Since cancer, celebrations seem even more of a milestone. For valentines I have been thinking about the people around me, and In the sprit of the blog, I wanted to say thank you to everyone who as supported me through this cancer journey, I know this sounds a bit mushy and I can see most of my friends clicking the little X in the top right hand corner right now, but I am hoping due to it been valentines day, I will get away with it.

I am very lucky to have a lot of friends and family and even the ones that live away are always in touch and sending there wishes. My Mum comes to chemo with me and help run the business, Terry my step dad helps my business is able to still run, my Dad and Rita my step mum are back from Portugal and washing our clothes, Mary Robs Mum and family, Lee and Carrie, Graham, Josie, Michael, everyone at work, and all my brothers.... I really could go on, and I know you all know that, and I'm very thankful.

The reason why I have written this blog earlier is not because my Rob and me will be going out on valentines day for romantic meal for 2, the chances are he is probably running around with a sick bowl right now, whilst I'm calling his name each time the room spins, due to it been a chemo week.

Over a year ago at the hospital, when I found out I had cancer and was waiting for my operation, I was in the adjacent  ward to a 30 something woman who had come in with her finonce, she found out she had a few weeks/months to live. Her finance left and never came back, he could not handle it, it would be easy to judge, how could someone do such a thing in those circumstances, I can honestly say, quite a few, It does happens a lot, and I would also say, I understand why it does too.

I know Rob and I didn't sign up to this when we both started out in a relationship, we were buying an house and creating our own family, Rob me and the dog.

If it wasn't for Rob I would not be alive now, I don't mean that using dramatic chat show style terminology, I mean it literally. It was Rob that pushed me to the doctors to get checked out and it was him that saw I was getting jaundice and pushed me back into the doctors, but I guess I also mean it in the chat show style too, I not sure how I could have done all the treatments, etc without him.

Rob will not be happy writing about him and sharing his name on such personal subjects, but I am hoping due to to the honesty of the blog and about writing about pancreatic cancer in all areas, I'm hoping by writing about reasonships and friendships, and it been valentines day, he will let me off :)

The thing is when something happens like cancer, the person with the cancer gets most of the attention, meanwhile, the ones supporting get very little.

I am not sure if i knew how much responsibility it would take to look after me. Everything from hospital visits, caring when sick for days, cooking and cleaning, taking to the hospital in the middle of the night when something as gone wrong, then re-organising all work plans due to no sleep. Trying to sort everything around chemo, and picking each other up when the others is down, and running Market Wraps, my business. It is not easy for Rob, or any other partner, family or friend looking after a cancer patent, and especially when they don't get many pats on the back for it.

I think back to the woman in the hospital, and I know how lucky I am.

At our civil partnership last year we left the organisation not just to the last minute, but to others to organise, (I can still see Robs family and mine running around making sandwiches) but at the end, it all came together, because the right people where there, the ones we love, and the ones that could not make it, we know they where thinking about us.

So, i wanted to turn that attention on everyone who really deserve it, and I wanted to use my blog this valentines day to say a very big thank you to Rob for all his support, and all my family and Robs family and my friends who gives me help, and I know they will be there if needed.

I wish you all a very happy valentines day...

 

BNP, Justin Bieber wigs and hypnotherapy

 

Now all my hair has fallen out, I do walk around with an hat on, but the top of my head is very sensitive, it's a strange sensation it feels like heat, so at times I take my hat off. I could be just paranoid but I am sure a small child called me baldy the other day in Poundland, we was with his parents and they didn't seem to say anything, I would like to think for my own ego is was inflicted by torretts, and it wasn't his fault. 

I look at myself in the mirror and can not decide if I look cancer victim or BNP member, Oh Christ! May be people think I look like a BNP cancer victim! 

I have been looking at men's wigs, and I am surprised about the choice.

   http://www.wigshow.co.uk/mens-kids-wigs/mens-wigs.html

There is even a Justin Bieber wig! I don't think I would suit that, I would look more like Elton John.

And there's these little numbers available. 

The above one doesn't look too bad, but I am not sure if his eyes distract me from the fact it's a bad wig.

They maybe a big choice but for now, I think I will stick with the BNP look. 

A friend posted this pic on Facebook...

*(copy written joke of Carrie Hall) 

So obviously there are a lot of physical changes happening to me, but at the same time psychological changes too.

In the blog I have talked about how I have built an association with the hosptal and feeling sick, so when I parked the car in any Muti-story I automatically felt sick as it reminded me of the Hosptal one, and anything that reminded me of the hospital I was or felt sick. Obviously this is all in the mind, and Rob suggested his friend who is a hypnotherapist.

Now I know she will read this so I hope I don't insult her but my first experience of hypnotherapy was not a convincing one. I had it when I was younger as I suffered from anxiety, and I was what the hypnotherapist called "hypnotised", personally I would of given it the more truthful description of "laid in a darken room with my eyes closed". I didn't want to tell her, as she seemed to get more out of it (not just £30 quid) than I did. I had to squeeze my finger every time I felt anxiety, I used to leave the hypnotherapist with a very sore finger! 

Also at a friends wedding (Rowan.'s) I was dragged up and was "hypnotised", when I was in a trance, he told me when he claps his hand, I would think I look and sound like Robbie Williams, so with the clap of his hand, I pulled a chair forward and danced and sang like Robbie Williams! Sorry Rowan, but I must admit, I was not hypnotised. So why did I do it? Because I KNOW I look and sound like Robbie Williams! It doesn't take hypnotherapy for me to know that! I think the reason why he picked Robbie Williams was he prob heard me singing Angels in the toilet and thought, Robbie is that you....

I have gone slightly off point here, so when Rob recommended Tracy, the hypnotherapist, I did think well there is nothing to lose! 

I am now so glad he did. Due to been ill at times we have done this over Skype. Tracy said she has not done this before and it may not work, I have had two so far, and I take it back about hypnotherapy. Even her voice seems to put me in a trance, and I can tell she puts a lot of work in before the treatment as it is very tailor-made. We are now not just working on my sickness, but how I am dealing with cancer and also even how my body is dealing with cancer.

Is it working? Well, I haven't been sick when talking about chemo, which I used to be, and after the sessions I feel great.

The last one Tracy said, you are in a lift, and you are on floor 0 and your going to floor 4, and the more you get closer the more relaxed you are. Now I got to floor 3 and I thought, it's not going to work this week, there is too much happening in my mind to be so relaxed and in a trance.

The next thing, Rob walks through the door and Tracy had to call him as it was an hour later and she could not wake me up! When Tracy told me what she had talked about it did ring a bell so it had gone in.

I am surprised to say, I am converted and I do recommended. Tracy is in the Rotherham area, but for me Skype works really well. 

 Tracy Is available for treatments and her number is: 07986 855991 (Tracy Woods)

And I am available for a bald BNP lookalike Robbie Williams tribute act, a must for kids party's. 

Never let a doctor sit next to you

A friend said the other day said about my blog and how can i make jokes up when I have to handle all this? and I started to think about that.

Personally I think people who only can understand what it is like to have cancer, are the people that have or have had cancer or the people around them.

For me, how I deal with having pancreatic cancer was this, at the very start, it was like getting hit by a bus, there is so much to take in, you are unable to retain and collect and compute all the information.

I think that when doctors are in training, they are trained on how to reveal bad news to patients, and one of the teaching is, when revealing bad news to a patient in a hospital, sit next to them and make them sure there on the same eye level as you, and then you can communicate the bad news.  I got to a point when the doctors where doing there rounds,  I would lie in bed with my legs spread apart so there were unable to sit down.

But after the dust settles of the total shock of been told you have cancer, after what the body as to go throw via operations then 6 months of chemo, and then the total shock of it coming back again, when that ton of dust settles eventually settles, I ask myself:

I'm not sure how I should be handling this too?

There is no real teachings on how you should behave in these situations, you have seen them in soaps and seen actors performing them but if I am honest, I am not sure how i should be acting, so you act yourself.

I was not sure how people would react to me without no hair, my mates have reacted how they would reacted if I had not lost my hair.... by taking the piss, and people in shopping centres have started to be nice and open doors for me and that kind of thing which i must admit a little, I have started to take advantage of this a little.

Writing about talking advantage! when Rob and me stayed in a hotel a few weeks ago, I did something shameful and please don't judge me on this! When placing the internet booking, I did put "I have cancer" under the dietary requirements, insane? yes probably, but it did get us a free upgrade and a bottle of champaign on arrival!

I guess what I am trying to say is, you learn to live with it and not to feel sorry for yourself or walk around devastated but actually live, yes we have bad days! we have days where we fall apart, but we mostly have good days, and those good days make it all worth it. 

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

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.