Ablation in London

I am having a lot of strange dreams. 

Tonight's involved me going back to my childhood. The only difference was I took my illness with me. There was a charity event, and I was voted to go play football with Leeds United. 

I was an over weight child and after ten minutes of football, Leeds United decided that even charity had its limits and they all booed me off! 

I awoke. what the hell was that dream about! - I don't even like football! 

I'm in pain this morning. The level of pain, well, I can not tell if the pain is from my cancer or trapped wind. Mental note, must suck a rennie and find out. I have now been in bed for seven days due to chemo. This does drive you crazy! 

Tuesday 2nd March

I have returned back from London. Yesterday I had the ablation on Harley Street, at the London clinic, there's been a refurbished in the hospital since last time I was here, the rooms are now larger even more nicer than before. This is the hospital that Prince Philip was in a couple of years ago, and if you look closely you can see his imprint of his head in the pillow! (I haven't slept much) It's a private hospital, and you are really looked after in there. For this procedure it costs around £10,000. My mind right now belongs to a person that as not slept for two days. I believe this is due to the drug that they give you to awake you up after surgery, that and getting up at 4am the previous day to travel down to London.

One of the effects of cancer for me is that every scan, every result, every step, I do not relax and wait, I observe body language, I analyse the spoken word, I read facial expressions, I measure the time that it has taken to get answers, and then predict the results before they are revealed. Sometimes I hit the jackpot and I am correct, sometimes I confirm that cancer as made me one hell of a ultra paranoid person.

The nurses and anaesthetist and of course the Professor are lovely. They make me feel at ease but of course when I said I was nervous about CT scan which I was having before the procedure the anaesthetist explained he could not say everything would be ok, he explained that whatever the results it can not be changed. 

They asked where my favourite place in the world was, and before I told them about Hunslet retail park :) , I was asleep. I'm guessing it was around this point when Rob got a call from the Professor asking if he had a copy of the previous CT scan. We sent one down from Leeds and the team that was doing my procedure was not at there usual hospital so I'm guessing they didn't have this information there. He asked where was the tumour and if I was having chemotherapy. Rob started panic at this point but the Professor explained that all was ok. 

I awoke, and instead of opening my eyes slowly and asking  how it had gone. I jumped out of bed and accused one of the staff of having MY procedure! They sat me back down I came around, and luckily they found it funny. I asked if all had been ok and I was told the Professor will see me later, I asked if that was good, and was told the Professor was happy. 

I went back to the room to join Rob again and wait for the Professor, and after not able to eat for several hours ordered a delicious three course meal from the menu.

The professor is very busy, and he arrived about 5 hours later. He explained that he would see me tomorrow.  Rob and myself stayed in the room, Rob slept on the chair, it would've cost £250 for an extra room, Now I know I'm from Yorkshire, and Yorkshire people are famous for being tight, but £250! You can go to an all inclusive in Benidorm for a fortnight with a family of four for that, and still have change for a bag of chips.

This morning we were signed out of the hospital, and set off to go back home at 7am. At about 8.30am we got a text to call the Professor back. 

With the copy of the previous scan he was able to look at them both, he had done the procedure on the tumour that he originally killed as it did look bigger, but as for the other two, it looked like one was inflammation on the liver and had gone, and the 1.2 cm tumour had disappeared. He wants me to have a MIR scan to work out what has happened.

We travelled up from London, not quite understanding what has happened. We called friends and family and passed on the situation, not just to let them know but to also absorb the information ourselves.

That was now two days ago, and I have spoke to my oncologist, there are a number of reasons why this could have happened, but the only way is to have the MIR scan. Sometimes chemotherapy can hide tumours. The chemo could have shrunk the tumour, and the CT scan may have not picked up the tumour if so small. I'm hoping to have the MIR scan privately in the next few days.

This will be quite so just after three chemotherapy sessions, but due to my right and shoulder pain as dramatically become less, and my tumour account has gone from 1700 to 600. With the result from the CT scan my oncologist said it is all pointing to shrinkage. But on the other side sometimes chemo of the ability to hide tumours, so will feel better after that M I R scan.

February 2015

JIt's 2.42am and I have woke up again after having a dream, I keep having the same type of dream. The dreams genre changes but the feeling when I awake stays the same. The setting is always hostile,  a place I don't feel comfortable with, and I guess the theme is always about learning how to survive in that hostile environment. Tonight's dream I was hidden in a traveling van, looking wide-eyed at the other passengers and not sure who's side the on lookers were on, while traveling down the dusty war broken streets of some exotic far place and been relived that every minute of the journey, I have survived. A psychologist would not be putting much study to work out the reasoning behind these dreams.  Last night was set in Leeds, but was in a dark rough part of Leeds and the theme was about getting to one part of town to the other, maybe not as dangerous as tonight's dream. 

I haven't published much on my blog recently, I have wrote stuff, but I haven't published it. I am not sure why. Not because I feel it is private, more to do with a cross between it reads like a shopping list, and/or bbvggguhwhen I read it back it sounded sanctimonious.  I am about to have chemo, I am having chemo, I am sick, I am in bed, 7 days later I'm getting better blar blar blar.  One reason why I write is to process the, well process I guess. But the thing is, I have wrote about this process loads of times, this is the third  cycle of chemo, surly I am able to get this by now. Also I wrote about how I feel, there is nothing wrong with that. But for now, it is not important how I feel about the chemo, what is important is the effects from it. My right hand shoulder pain as become less, this is good news as this pain is referred from the tumour on the liver, meaning that the chemo seems to be working.  To get pancreatic cancer is tragic, to get secondary pancreatic cancer is helpless, to get secondary pancreatic cancer three times, and get rid of it each time is unique, but something tells me not impossible, and that's why they are still giving me treatment, and with the help I am receiving I guess in the next few weeks I will find out if it will be possible with me. 

There was a programme called "How to cure your cancer", now due to the situation I am in, you would think I would sit there, watch it, and take notes, in the preparation of survival, but the truth is I watched five minutes and it was boring. I then sky+ it! But a couple of days later when sky+ was full, I deleted it.  It is coming up to who killed Lucy Beale week on EastEnders, and I don't want to miss an episode of that! Priority's! Knowing my luck I will be walking into the chemo ward next week when there be crowds of bald people, cutting the cords from the chemo machines and skipping away from the building and chanting thank god we watched  "How to cure your cancer" it worked! And I will be there running after them asking if anyone as it on DVD. Also a lot is happening regarding market wraps and Hosptal visits which I will reiterate about next 

I had my head shaved a few weeks ago, this was in preparation of it falling out. The haircut before I asked for a certain style, the hairdresser said I had to grow it to get that, and I said there was no point as I was having chemo and it would have fallen out by the time I would have reached that look, that was a long silent haircut! I also told the hairdresser who shaved my head that I was having chemo, not because I thought it may excuse me for leaving a shit tip ( but he did charge me less!)  but more to do with I was paranoid that it would just all fallout when he washed it in the sink, now that would make a great YouTube video! "What the f### have you washed my hair with!"  That was 2 weeks ago and it has not fallen out! I could have got the style I wanted! I haven't walked past the hairdressers since in case he thinks I told him Im having chemo just to get a couple of quid off my haircut.

The cancer zapping procedure is booked and I will be going back to Harley street the first week in March.  I will write soon and say now the results are. 

Rob and me have been to London for a couple of days, it's been great. It's so nice to go away, you leave the bedroom that I spend a week in and an environment where there is always a bag of pills or a sickness drive or a sharps bin to remind you of the situation we are in, of course you always have to go back and we are back now, chemo tomorrow.  A lot is happening in the next few weeks, with Market Wraps, and hospital visits things have gone crazy. I will right about that no next  blog x

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

Action plan

Right this maybe a long one....

I have had time to think about it now, and I think I have worked it out...

This is a rough draft, but bare with me. 

I was interviewed for an article for pancreatic action websites January campaign, I was asked what my wishes were for the new year, I was back at the gym, and for the first time feeling a little more towards normal than I have been in the past two years. I had plans for my business in the new year,  I talked about how I try and face life and not anything negative, and my new year hope is to carry on with that, two days later, I failed, I stopped that path when I was told it had come back.

Our plans of seeing friends and family over Christmas and New year seemed to get taken over by my lack of sleep and pain, in all fairness I know I could not have changed that, but still it's annoying, and it got in the way.

The cancer charity wanted me to do an online video to talk about any messages They wanted me to give someone who had just found out they have pancreatic cancer advice and meanwhile I had felt I had gone back on my word.

I have been told with this type of chemo that I was on in the past, you can only have it every 6 months.

Now I have talked to the doctors about the situation, the response was surprise, but not because it had come back,  more that it's had not come back in 7 months and that's an achievement.

I think I know now what I am going to talk about on the pancreatic cancer video. 

When you first find out you have cancer it's a shock, you then find out it pancreatic, you then slowly find out what that means, you find out the percentages, you find out that this is truly a terrible situation to be in, and mainly how a cancer can come and simply take your life away. 

But, what they don't tell you is, it can also take your life way while you're living, it can stop your dreams, limit your living, consume your thoughts and push you off course. I know this, as it has done this to me in the past week. But, my personal advise is this, do everything not to let it, everything.  Don't get me wrong, when you are being sick in bed, I know you can not live life like nothing is wrong. But if you don't let it win taking your life way, every now and then In life, you will have moments when you will smile, you will have joy and you will still have dreams and with that, you're free and it's not winning. 

My body has done something remarkable, it as allowed me to live cancer free for 7 months, thank you, it has now allowed me to have the time to get over my last chemo sessions and have the energy and fight to do it all again, and given me the 6 months time to be able to do it. The only difference is I know what chemo can do, so this time I know what to expect, which will empower me.

So, I am not sure when the chemo starts or any other treatment, I don't want to do it, but I also know I can and I'm ready. 

But on reflection about the written interview, and the advice to others, I am also going to go back to my plans, push my dreams,  and live as cancer free as I can, living with cancer, and at the same time, aim to live cancer free again.

CT Scan results

Thank you to all of your support, the messages we get do give us strength, so just wanted to say, a very very big thank you.

I had the CT scan, due to it been Christmas time we could not get one on the NHS Until the 12th January, so I went private and had one on the 29th Dec at Nuttfields hospital.

Now to be fair to the NHS, within the 29th to the 14th, I don't think the situation would have changed much, but at the same time what helps me and also Rob and my family is been proactive about it all, it just makes you feel a bit more in control of the situation.

My surgery in London, Proff Leen made the request to see the scan to see if there was anything he could do, like he did last time. To use type of Nano-knife technology (ablation) to cook and kill the tumour.

I had a copy of the scan on disk and the day after we then sent it to Prof Leen in London (this was at 4pm) Prof. Leen was also on holiday so I was surprised when at 8pm that night he called me with the results. I must admit I am a fan of Proff Leen.

It looks like I have a 2cm tumour on my liver, and also a small second tumour, with maybe a possible third. 

Of course I wanted to hear, it's all a mistake and there's nothing, but with the pain I have been in, I knew there was something.  

But, due to where it is, I can try again. 

So, this involves going back on chemo, and then Harley Street. He thinks it works best while on chemo, so I have to call them today and start that again. 

I always knew the chances where high it probably would come back. I wish they didn't. But right now I'm glad that at least it can be done something with.  

Slightly off course there's a BBC article on the web today about  cancers (pancreatic) been down to just bad luck. I have always blamed myself, reading this article, I guess it's time to stop blaming myself and just get on with doing what I have to do to survive. 

http://www.bbc.co.uk/news/health-30641833

I feel angry about it this time, I had so many plans with Market Wraps for the new year, we was starting a new business and everything was set up. I haven't given up yet on the plans, but may be just a slight delay.

Yet again, thank you for all of your support. I hope you don't mind but they will be more blog posts as it helps to get my head around it all, and it just keeps everyone in the loop too.

Happy new year too! 

Carl xxx

Latest results

'Hope you have all had a lovely Christmas. 

It is 3.00am, I can not sleep, this is about the 7th night of broken sleep. Sadly it looks like my cancer as come back for now the third time.

I found out a couple of days before Christmas, my tumour count in my blood as gone from 20 something (under 30 is normal) to 230 something. It is not fear or stress why I can not sleep, but more to do with the pain in my right hand shoulder which seems to of been building up now for a few weeks. According to the doctor this is probably be referred pain from the liver. I am having a CT scan tomorrow (today) to see where I stand. I am talking a lot of pain killers and sleeping tablets,  they don't seem to be working.

I have only told a few, it seemed wrong to say sprinkled with the words Merry Christmas, so I thought I would wait for Happy New Year instead :) 

So at 3.am I go from Facebook, to BBC, to Twitter back to Facebook. Please can you all start posting at around these times as its a quite time.

I have recently been interviewed for a campaign for Pancreatic Cancer Action, I was asked, "what is your New Years wish". Before I found out about the cancer coming back. I felt I was slightly getting my life back in some order, I had gone back to the gym and slowly normality began. All is going well with Market Wraps, so my new year wish was to carry on the journey. I must admit this news does seem to have knocked me off my perch.

If it has come back, and it's looking highly likely, then I also have go get my head around the outcome. It is now the third time I have had cancer so things should be easer to understand. 

Chemo.

That's the hard part to get my head around right now. The next few weeks will tell me where I stand and what I can do about it. I should get the results back from the scan soon. 

Sometimes in my blog I write to enjoy. I write for therapy, I write just to update. I guess this blog item is to categorise. To place in some order.  Reading what I have wrote the one thing I should do, and can do is get back on the perch again. I had quite a few plans ready for the new year, of course there is nothing I can do about the fact that those plans will now be challenged. But at the same time, it also doesn't mean that I can not challenge them from not happening.

Sorry about the bad news, I am hoping that it will be not that bad, and I will put in the blog as soon as I find out. 

Happy Pancreatic Cancer Day!

How do you feel about cancer....

I was not sure how to answer the question.  I was interviewed by Radio Aire (regional radio) last night and this is played throughout the day on the news, which is great for the awareness but I must admit I feel a little downgraded from last year as I was on the TV :) but when asked 2 questions on how I feel, I went silent.

Today is Pancreatic Cancer Day (13th November) it is the first time that Pancreatic Cancer UK have held this day, and they have

 worked with 30 other organisation in the world to create this day, and bring more awareness to this cancer.

So Happy Pancreatic Cancer Day! OK, I won't be pulling a party popper just yet, but this cancer certainly needs more funding and awareness.

It truly is needed as the stats have not changed in the past 40 years. Pancreatic Cancer is become the 5th most common cause of all cancers deaths in the UK.

I have decided to put a blog item to do my small bit towards this day, and hope that my small donation my create a bit of awareness.

The reason why I went so silent at the question, how do I feel about cancer is I am not sure how I feel any more, there is so much that as happened that when it comes to feelings, to put it simply, sometimes I just don't, and then there are other times I can be over emotional and feel too much.

In my blogs I write about 'my situation' and never really spell it out, there is reason behind this and the reason is, at times I find it hard to face 'my situation' that I am in, so for the sake of the campaign I want to share about it on the blog.

September 2011 I was told I had Pancreatic Cancer after going a strange yellow colour, itching, having back pain, and my stool looking like I have had a diet of kabbabs. I was then told that only 10% can be operated, I was lucky, I was one of the 10%. I was then told that even with the lucky 10% the chances are (80%) that it will come back within the next couple of years.

It did come back, it came back to my liver. I sat with my oncologist as he told me that there was nothing they could do about it.

No one said the word terminal, I am not sure if that is normal. We walked away to get ready to tell the family.

Rob, my partner found on the PCUK website some new treatment called Nanoknife, this treatment cooked the tumour, and I could only have this done privately, yet again, with luck, with my work I have healthcare. When I asked my oncolgist about this, he said he had not heard of the treatment. I got the impression not to get too excited about it. Nanoknife was not covered on my healthcare and the 10,000 pound a night hostpial to have the proceedure wasnt too, but after meeting the professor that did the treatment, he said that his team could do a simalar treament in another hospital where the insurance could pay for this.

It worked, the tumour was killed, and with that and a very rough 6 months of chemo my tumour blood count went down from 200s to 18.

I now have a CT scan every 3 months, my oncolgist can not advice me because he as never been in this stiuation before. I can not tell you what my nerves are like that day! but that is now what i call, 'my situation'

I am now back at work, back pushing my business, and back in the gym. I had an email from a lady that I have been in contact with via emails and this blog, (I hope she doesnt mind me putting this in) - she puts (in a more eloquent way than I have put, about how it all can effect how you feel).

"You probably are familiar with the theory of learned helplessness.  It grew out of some unfortunate, cruel animal experiments in the 1960's.  When dogs, or people for that matter, come to feel that they have no control over their situation, when bad things repeatedly happen to them and they cannot escape or avoid these things,  they eventually just stop trying to escape the bad shocks.  And once a window or doorway is opened for them to escape, they do not run.  Depression, anxiety, phobias, and feelings of isolation, etc., can most definitely be exacerbated by learned helplessness.  I have come to believe that this disease, PC, and all its dire outlooks and scary testing, hair loss, set-backs, pain, and all the rest can lead (me, at least) to a place of learned helplessness.  There are many other real world examples of this involving humans.

The thing is, Carl, since I have read your blogs I have felt less helpless, less alone, less afraid.  I have recognized that in the face of this cruddy situation I should do more, try harder, celebrate more often.  It is not easy, the way you have chosen to deal with this, but it is wonderful!  You have seen the humor, learned and documented the lessons, and worked, while enjoying Market Wraps.  So what if it has thrown you for a bit of a loop this round?  You won!  I am so charmed by your looking forward to looking forward again.  Thank you."

I must admit, the email did my ego some good! but its true, with the trauma of chemo, with the changes of the massive operations, with the changes of phycology of yourself and then of others and how they react towards you, this all as a massive effect on how you feel, and then I guess, who you become.

Cancer as played with the way I look in the past 2 years I have had more new looks!

 and as i am now:

The last picture as nothing to do with cancer, its more sadly due to genetics, but at least it proves, whatever cancer throws at me that changes me physically, I have had it worse! and I can deal with it.

With all the changes that cancer can bring, not just physical, but mental, you do get to a point where you are not sure who you are, or who you have become. With all the changes it can make you become 'helpless'.

I find it impossible to ignore 'my situation' but, personally that’s how I try and become less helpless. By getting on with it, and do you very best to brush yourself down and get back up again.

So, yet again, Happy Pancreatic Day! I really hope that it does create more awareness, gets better statistics, and gets more funding.