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.

CT Scan results

I have not wrote in my blog for quite a while now, I knew my CT scan was coming up, and I did not want to talk or write about it until now. I have had some message from friends that I have met via these blog post asking how I am, and why am I not writing the next artical, (especially you Nan, from sunny California) I'm sorry, I have just needed to see where I stand with everything.

It was my three month CT scan results today and all is OK. One part of me cannot believe it was only three months ago from the last one, but the other part of me feels like 30 years have passed.

A radiologist did not see the scan, but my oncologist said, looking at the scans all looks ok, and nothing looks sinister. I also had my bloods tested, the tumour count as risen slightly (from 13 to 18) but still all is in the safe zone.

The scan was taken 3 weeks ago, waiting for the results has challenged us to say the least.  To put it bluntly, I lost the plot in the three weeks of waiting.  Without the experience I have had, I would of thought that each scan would become easer, but for me it just becomes harder.

The anxiety was unbearable. In the past three weeks I have become introvert.  Sleep as been minimal. Plans have been put on pause. I know how I should be viewing this period, I should look at it with some form of zen approach . If I only could take a more spiritual outlook, then none of the doctors findings would be important, I could categorise it as a unknown journey. I am still working on this higher viewpoint, and to be very honest about it, how I should be feeling and how I am feeling are in very different areas right now. Last night I went for a drive, one minute I was ok, the next minute uncontrollable sobbing (Diesel is so expensive these days ;))

I guess we create anxiety for a reason, maybe parts of the brain is temporary shutting down, while other areas make up for this and go into over a drive. This is to give the ability to cope, I guess, flight or flight. I am not sure which one I was doing. I know I was walking around with a bewildered look on my face, almost like I have witnessed a bad accident. I also start yawning at this point, as stress always has had this effect, sadly if I get told something tragic, and I just looked bored at the news.

 

Both Rob and myself walked back into the hospital today, the memories came crushing down. A knowing glance between us, we both have not been to the hospital for a bit and for myself it seemed to surprise me. All the stimulants to make the hospital more pleasurable, the art work, the gentleman playing the piano in the forum, reminds me of why those stimulants are there in the first place, when the reality is for most of the people in this ward, it's not pleasurable at all.  The people walking around the atrium area, pulling there connected drip, some looking ill and frail. I look, smile, and give a respectable nod with my eyes. Even though you haven't been to the club for a long time doesn't mean you ever forget about your membership.

The anxiety I had collected in the past three weeks was all around me and Rob for everyone to see, A an elderly woman in the waiting room came up to us before she left and said good luck, and you will be in my prays. My doctor waved me in, as we walked down the corridor I asked "How are you"?, He smiled and replied  "I am good, and so are you." - three weeks of collective anxiety started to lift.

I know and I understand the situation I am in, but I will always challenge it, as much as it will always challenge me, but for today, I won, and with that, the pause button, thank God, changes back to play.

For the past three weeks, I have imagined the good news, but at the same time not sure if that was just a foolish game, and should I replay a more negative outlook as then if it is then maybe the shock would be less painful.  

When I was telling one of the doctors about my plans, and then saying but it all relied on the results, she said, why? Do it anyway, whatever the results are, I agree with her, but yet again, I'm still working on this more zen approach.

We both left the hospital, Rob went to work, I went to get ready for the weekends market, and life strangely goes on.

All the plans that I have had on held I am now able to push forward again. I am so please to.

So, first we have a new logo for the businesss (Thanks Nick) and I am re-launching with a new look for the stall, The joiner is working on this now, for those that follow this blog, or know me, will not be surprised about this due to having a re-launch most weeks!

The Market Wrap kitchen is now done, and set up. It is so much better having the kitchen, which means we are able to do more, I love it.

*must now change old logo!

 We have started selling The Market Wrap BBQ sauces separately. In November we will be working with a company that distributes luxury food via its monthly hampers and our Lousiana sauce will be featured in the hamper and we will be in there promotional magazine. Links going back to the market wrap website will have on-line videos advertising what can be done with our Louisiana sauce.

This is what will be going into the magazine.

The website will have a new look, and will be promoting the new delivery service that will be starting in the next few weeks. We will be delivering around the Leeds area, and will be pushing this via social networks and Just-eat.

www.market-wraps.com (still a hell of a lot of work to do on this!)

It has been challenging the past few weeks, but I am looking forward to looking forward again. 

X

Robin Williams

At the age of 63, actor and comedian Robin Williams has died. The verdict was suicide.  In the press it was first speculated that is due to money problems, and then depression (which seems to state the obvious) it was then reported he was diagnosed with early stages of Parkinson's disease, this was not publicly known.

This made me think not so much about the physical aspects to a disease, but the mental view point. For me, this blog help me translate my feelings and emotions and once written down I can then categorise and put in some form of order.

When I left hospital after the operation, I was advised to have counseling to deal with the situation that I had a 80% chance that the cancer may come back, and if it did they would not be able to do anything about it. The nurse explained, when in hospital and getting told about having a disease, it is easier to cope with in the hospital environment due to the many distractions happening around the patient. It is not until vacating and the patient become the person again that they have time to think about things and then they have to deal with the changes within there life.

In the first counseling session I had to sign a contract to say if I talked about suicide with the councilor, they would  have to report this to the doctors.  I do understand why this is the case, this is not only for the care of the patient but also to protect the councilor too.

I think most people that have to face a disease that may limit your life or a disease that may dramatically change your lifestyle, myself included, may pull the suicide card out of the pack that represents the freedom of choice.

Don't get me wrong, for me and for most that card went into the, not an option pile, but still, the card was there.

Only Robin Williams knows what was going through his mind at the last moments of his life, it was obviously such a dark place, he, at that moment in time, just could not see anyway out. I know Parkinson's disease and Pancreatic cancer are very different beasts but I study that keeping a positive and optimistic mind on any disease is the answer? This is not an easy concept, and as I am writing this, there is a tug of war between my own thoughts.  How do you keep optimistic about facing a life limiting disease or a disease that makes you excessively disabled? You know, for me, some days, I simply feel rubbish, and by visualising a clown like face forcing "a positive and optimistic mind' onto myself would just want me to punch the clown!  But, on-balance, by admitting and allowing that some days you won't be optimistic or feel optimistic, allows and frees the days that you do.

Response from Mr Nick Clegg

Last month i wrote a public letter to my MP, Mr Hillary Benn regarding attending a debate at parliament on pancreatic cancer. I have not got a response from Mr Benn, but a friend (Lisa) also sent a email to Mr Nick Clegg and had a response, thank you very much for spending time and sending this Lisa, and for Mr Lord Clifton been involved in the APPG group, and for Mr Clegg's response.

http://pancreaticcanceraction.org/what-we-do/goals/party-parliamentary-group-appg-pc/

This was Mr Clegg's response:

Thank you for your letter regarding pancreatic cancer, and I am sorry to hear about how it has affected people that you know. 

Unfortunately I will be unable to attend the debate on the 8th September due to other commitments, but I support the work that Pancreatic Cancer UK, as well as other charities, does to raise awareness about this type of cancer. 

Additionally, my Liberal Democrat colleague Lord Clifton is a member of the APPG group, and he will be working within Parliament to make sure this serious issue gets the attention it deserves. Thank you again for your letter, and I wish Carl Denning the best of luck in his fight against pancreatic cancer.

If you wish to discuss this issue in person please contact my office on 0114 2309002 to set up a meeting.

Yours sincerely,
Nick Clegg MP

I am still in hope that Mr Benn will be involved on the 8th September, and if I do get a reply will be puting the response on this blog.