A brave new day

I know what your thinking! Your thinking, wait a minute, didn't he promise that the last entry in this blog, was his last entry - well I am sorry to say, I am back! and sadly so is my cancer.

It is now in two places in my liver.

The doctors have said that its about containing the cancer, not getting rid - but I have been told this in the past, I plan to get rid of it again.

If you belittle the situation, then it doesnt seem such a big deal. Right now, I am trying to see it not as, ITS CANCER...AGAIN but more, Its only cancer, again...

It as taken the 4th time to get cancer to accept that pancreatic cancer will be part of my life, through my life, and that is fine.  By accepting this, does not take the right away to not challenge it's existence. It never get easer, I would say it gets harder, to not just physically take onboard what is happening but also the weight of it mentally.

After a scan and a trip to The London Clinic and then a meeting with my oncologist the conclusion was that there are 2 new tumours on my liver and the next step is to have a Pet scan.

The Pet scan will give a better image and show if the cancer is anywhere else and then the doctors can choose what is the best direction to go for the long term decision.

I will be having the Ablation/Nano-knife technology again. My doctor said that it is acting in a different way to how pancreatic cancer usually acts and in a good way, while many (including myself) say oh another tumour again! it seems the medical professionals are saying, well, only 2 tumours after 3 years of having this and it coming back 3 times is very positive.

I am not sleeping that much, this as nothing to do with worry or stress, but just the usual cancer pain, that only seems to come alive at night when you are trying to sleep, it is now almost 2am.

I have been helping out with the charities which I really enjoy.  I have been helping the Pancreatic Cancer Action charity. PCA  are one of the charities that are trying to get Abraxane (one of the chemo drugs) back on the NHS list after the government has taken some cancer drugs off the available list.

There is an disagreement on how much the cancer drug is and its worth, I feel that the debate for that is between the drug companies and the government, but the actual use of the drug is one of a personal issue and one that i can discuss.

This was me on channel four news:

and here is the article I did for Yorkshire Evening post

Here is the link for the petition, https://petition.parliament.uk/petitions/107388 Thank you for all who have signed.

I was introduced to one of the production team of the new cancer research adverts that will be on TV this Christmas, and I may be on this.

So, for now thats the information I have, waiting for results from the Pet scan, and then from that the doctors will know the best direction to go.

As for the other stuff, I will continue to help with the charities as much as I can.

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.