End of chemo

Well, i have finished my chemo, and my line is out! It feels strange. I don't miss a plastic line dangling from my arm, but I keep acting like it is still there, (careful when I pull my sleeves up, etc). My hair has grown back and I had my first haircut in the past 6 months.

It is a good job that the line has come out, I had pulled it out by getting it caught of a number of items that I could of almost used it as a skipping rope. When the nurse puled it out, you prepare for the pain, in my head it had been tangled around my heart. It does not hurt and I didn't feel a thing.

When I talk to the nurses some make it sound like my chemo as not finished, and this is just a break. For my own sanity I'm going to see it as finished. 

In my last blog post I wrote about how I was in hospital with an infection in my line. Well they kicked me out after about 4 days. I did feel like I was just there for the meals as I felt fine. The chemo is making my feet and hands feel really numb this is getting worse and sometimes can be very painful. The side effects is also frying my brain. I forget what I'm talking about,  but when that happens I don't just go to the next subject, I try and remember. You can see it in peoples faces that after five minutes they really wish they had listen to the conversation as they may be able to help and remind me what I had been talking about.  After ten minutes when I remember, I realise why they didn't bother listening in the first place.  

I have had backache that has driven me slightly crazy. Pain is not just a sharp ache, but now a constant reminder that things are not, and never will be the same again, and it's impossible to ignore. 

I have another CT Scan this week, I am not sure when I am getting my results as they haven't told me yet. It doesn't matter how many scans you have, or what the results are, on each one It fill your head with anxiety. I don't want to do it! I have always been one of them people that stick my head in the sand for most situations that I don't want to do.

My last blog I wrote about living in the now. I know what I am about to say is hypocritical, but since my chemo as finished and I'm about to venture back in to normal life, I'm a bit scared. I feel like each step I have to tap with a stick to make sure the ground doesn't fall. Anxiety as become a normal part of my life. I catered for a party and the majority of people there where around 40. Due to my situation sometimes I feel so old. Then I see a group of people, laughing and dancing and enjoying themselves and most of them were about my age. I then realise I am not that old.  I know this type of thoughts are not my usual ones I write about on my blog, I also prefer the more upbeat, positive thinking self. But it would be also wrong to deny myself of these thoughts.

But distraction is for me the best medicine, and like I said my chemo as finished so it's now time to find more distraction and time to move on to the next thing. We have started getting more bookings for private events, and I keep pushing for more.

 

I am going back to work in a few weeks. I have also started to put some plans to work for my business.

But to say that the title of this blog involves the words "street food", I haven't really spoke much about it in these blogs. 

A few years ago I started my street food business.  I wanted to do something that involved the 3 loves in my life, cooking, eating, talking! And after a brainstorm session, I started Market Wraps. A market stall selling food that I had made, not knowing what street food was. I just wanted to do something I enjoyed.

At the start I never had a queue, I never really had a customer! The occasional pigeon seemed teasingly interested, but that's about it. This went on for months, I spent 40 pound on food, and never took anything. My business plan was not going to win me Business person of the year.

Leeds market decided to move one of it's twice monthly farmers market, and put it on one of the busiest streets in Leeds. This was one of the best moves for us. From there on we had customers! 

I see Market Wraps not as working. Rob and me knock ideas together and then put into practice, some work, some fall on miserably on there backside. I see it more as playing. Our menu changed, and we once put pulled pork on the menu, during an holiday we decided to risk losing our queues by taking everything off the menu and just do pulled pork, but make sure we do it to the best of our abilities, it worked and we got busier.  

A few weeks ago when I said to my doctor I want to work again, she told me I could occasionally work between sickness from my bed. Not capable to do much physical work I started to work on a business plan.

The bank, due to my situation have said NO! to a loan, so I have turned to a enterprise scheme. It was probably not one of the best ideas writing a business plan while I was off my head on chemo. I got to a certain point, realised that the idea would not work, went back and re-wrote it. This happened about 4 times, and when I got to the end and I had got the idea to work on paper I read at the bottom of the pre-formatted word document that I should only have wrote two a4 pages. I had written a book! One that involved drama, blood, tears, highs and lows!  And about 4 trees worth of paper. It took too much time to make it condense, so I sent it off. I think when they received it they thought it would not make any sense to read it, as it would cost more money in man hours to go through the business plan, than it would to just give the loan.... It worked!  I must admit I was surprised when I got the loan, and it has now put me in the situation where I now have to do something about it.

I have so many ideas what I want to do with Market Wraps, but it is impossible to do as I need a bigger kitchen to pull it off, so that's my first plan, and I should get the keys in a week or two for the new premises.

 

I am also had meetings with a marketing company to see how I can push Market Wraps out to a wider audience, I will write about is in the next few weeks.

My man made distractions battle with my anxiety, some days anxiety wins, but most days it doesn't. 

Yes the future makes me nervous, but with a switch of direction of thought, it also excites me.

     

What's next

It is 3am, I am not sleeping, and I am laid in an hospital bed. I have forgot how hospitals have a special way to see how you deal with sleep deprivation. I have had a infection in my picc line. A picc line is a tube that has been dangling from my arm that feeds chemo near my heart, and for the past 3 months this line as made it possible for me to have chemo without injections once every 2 weeks. Then just before my last chemo this has happened. 

I'm feeling ok now, but yesterday my temperature was up to 39, 39 is fever. Yesterday I laid in the hospital bed with my eyes at the back of my head acting like I should be in A&E on a Saturday night. When your temperature goes up and blood pressure goes down, you basically act pissed. Which when your temp falls back down and your blood pressure goes up to normal and you're back in the room, it can be slightly embarrassing when your not sure if you have been swinging on an  cancer patient next to you while trying to organise a singalong in the oncology department.  "Come on everybody! Always look on the bright side of...".  I apologised to the nurse, which, luckily I was told I had nothing to apologies for. Later on Rob told my that the only thing I was organising was the structure of a sentence, which I failed. 

As for the side effects, my hands and my feet feels a sensation like pins and needles, and also numb. I was told that after the chemo, feelings may come back, but also they may be permanent damage, not great if your playing Twister, but great if your trying to get away with the washing up.

So, my last chemo is coming, the tumour I had has been cooked and destroyed using the new treatment in London.  My doctor as told me I am his first patient that as had it, and let's see where we stand in 3 to 6 months, so what next, scared about the future? Well, I guess a little, but then I think about what I want to do.

And then I'm buzzing with ideas! 

Those ideas, I have already started to plant, and I'm sure that's another blog post.

I have always wanted to write about things I have learnt during this process as I know what is happening is, I guess is rare. But due to my brain been fried with chemo I know I haven't got my faculties to be eloquent, to be fair who am I kidding I have never been eloquent! Also I am conscious it may come across as been slightly pretentious. I have had THIS 'rare' experience so I know better!  I don't think I now know better, but I do think I now think  differently. But to say I now think differently, does that mean?   I now know better? No, due to me being still alive, I am also still learning.

So, the future? Well, I really don't know! I can use percentages and live scared, but two years on, I don't use percentages or probability anymore, so with that, I have only one thing, and that is the present tense, and personally that's not only magical, it's powerful. To totally fully appreciate the now. 

To live life in the now, and not fear the future anything is possible, I don't mean live life recklessly, but I do mean live life. Should I worry about something happening to stop my plans? No! What's the point, The only thing I should worry about is not acting on those plans now, as now is the only thing we have all got.

Of course there is always that voice, I think we all have it, unless it's just me! that voice that edits our actions, that stops us from doing things, that puts worry on our shoulders, and also that has the power to blind us of the now. But for me that voice doesn't place much worry about the future anymore.

I can see the irony, all those years of being healthy and well and at times worrying about the future, then suddenly you  have something to worry about and I then decided to stop worrying about it!   And with that, when I say I'm buzzing with ideas, those ideas have the space to grow, and be far more creative.

Now is the truth, now is really appreciating the conversation with our love ones, now is just stopping and looking, now is not only making that decision, but acting on it,  now is just enjoying the moment, now is saying, sod it! I will give it ago and try my best.  

I guess what I'm trying to say is, we all might as well make now the very best we can, because now is the only thing we have got.

Regarding that voice,  it may not worry much about the future, but it is still there and it still try's to edit. My voice right now even though It shouldn't is letting me worry how I am coming across in this blog, Its saying, most people loss there hair after chemo, you turns into Oprah! This suppose to be a blog about my experience, not "A road less traveled", but then turn that voice off and appreciate the now, and just think sod it, push the publish button. 

The new normality

 I have not written a blog item for quite a bit of time now. I am currently about to have chemo (Thurs), after that I have another 2 to go.

My hair as started to grow back, I am not sure why, as i have not finished chemo yet, it is more fuzzy felt more than hair.

It does seem that last time the chemotherapy made me sick less that usual, but this sickness has been replaced by a bit more pain.  The other day I had abdominal pain, and I went dizzy and thought I was going to pass out, i am not sure if this is side effects from the chemo.

So, my future plans are:

3 more rounds of chemo, then after that a CT scan, then I am hoping to put a bit more normality back into my life.

I will be going back to work at this point, now I am not sure what good I will be, due to this amount of chemo. My brain feels like it has been taken out, and replaced by a brick.  My official title may change from web developer to flower pot, as they sit me next to the window holding some flowers.

But whatever happens, I am looking forward (and a bit nervous) about going back to some form of normality. 

When I say, some form, I guess I know the situation probably will not allow me to go back to the normality I used to have, I guess the key is to get it as close to it as I can. 

Cancer has changed me. It has changed me physically and what I am able or unable to do, my body will not allow me to just get up and go anymore, but my brain does, which adds to the frustration. I get really tired and there is sometimes pain, and my thought process can be very clouded.  I am now classed as disabled, by looking at me, no one would know there is anything wrong. I have applied for a disabled car parking badge, this seems to be a controversial subject. The government does regard this as a disability and have been helpful with advice, but when I have told some that I have applied, I have felt a bit of hostility, I guess people judge on the better days, sadly it's only my close family that see me on my worse days, a parking badge will help not just me, but Rob and my family at the hospital when I am leaving after chemo, there is never any parking spaces, and 4 flights of stairs while been sick is never very nice. I now know and accept that it is a disability, no I am not severely disabled, and it is not one that people see, a missing pancreas is not like a missing arm, but a pancreas as got it uses, and with half of it left, I do miss the other half! It has also changed how I look, from scars to experience, it as changed me physically and it has also changed me mentally, and I don't mean just chemo frying my brain, I mean the whole experience as made me see life in a different way.

I am really looking forward to get back to my street food business too, I have really missed it. I was talking about this to one of my doctors and how much I miss the work, she told me to do it from my sick bed, I am not sure if she understood what street food is, I know it involves a bit of theatre, but I am not sure if making pulled pork wraps from a bed while not being that well, in the middle of Briggate would work.

But I took her advice, and started making plans of some changes of "market wraps" from my bed. A change in menu, a change in the look of the stall, and a change in doing what we do now, but just doing it more. I decided to call the bank during one of my better days to see if they were the new helpful bank they now claim to be on there advert. All was going well on advice of how to ask for a bank loan, until we got to the point of pancreatic cancer been mentioned, I felt the draft from the virtual closed sign been shut down on the phone. This is what I mean by accepting that things won't be the same again.

I was able to work on the stall this weekend, and with that I brought in my new idea of the new menu, gourmet wraps and sandwiches, made in front of the customer in the morning.

They went down well, and we sold out, but more than that, it felt great doing something different, working at the stall, and seeing everyone at the market. Just a small sense of normality again.

On talk radio was a discussion about what it is like to live with cancer. I found it interesting, not as many would think. I was not comparing notes, it was more seeing how others do it and try and follow suit. If someone asked, how do I live with cancer, I am not sure what I would answer. 

To go through this experience, it is bound to give you some lesions in life, and it as! I think... And it would be great to reveal and share those big life's lesions in an almost revelation way! Sadly due to chemo brain, I think I have forgot most of them! Shame really as it would make a great blog item! 

I was thinking about how we treat getting older. Last December I hit 40, I did not really experience the hitting 40 in a normal way, so I am unable to write about it from that view point. I am guessing that you get to 38 and then suddenly you start to prepare mentally for the big four zero. For me it was different as I found out I had pancreatic cancer at 38, so the last thing on my mind was, I am 40 in two years time. 

I hit forty, and was asked the usual questions, "how do I feel about hitting forty" "it's downhill from here" etc.....

My blank face probably gave the game away that I had not put any thought process into this subject.

I guess I asked myself those questions after I got to 40. When someone hits a rounded age, questions like that I guess are standard, it's what we all do, we send joke cards about getting old, showing images of a couple of old dears with various body parts hanging low, or someone loosing their mind etc.  We all seem to treat getting old as a negative thing, and that is something that has changed for me.

How do I feel about hitting forty? I'm extremely thankful for it. A birthday does represent getting older, it represents another year of surviving, and a year of the experience of life. A year of sharing moments with love ones. It's a shame we all treat getting old as a negative experience, imagine how it would be if we all saw it as a positive, that would truly be a celebration.

Ct Scan

GIt is now just gone past midnight, I am in bed and I don't want to sleep as I know when I fall asleep I have to awake to my next chemo session.

I have not written in my blog for quite a bit of time, and I have had a couple of tweets asking if I was ok. All is good, thank you.

In the past week I went for my CT scan, which I was nervous about, this was the first CT scan after the treatment in London. This was the important one. 

I had my scan before the Easter holiday and I got my results after. The doctor told me that, on the scan the tumour looked like it had grown on first sight, but because of it's density it was not living. The tumour looked bigger due to the ablation I had in London, the Prof  burnt the  tumour  and the cells around it, which made it then look bigger on the scan. My ca-19 (tumour counter in the blood) had gone down to normal levels and they were no other tumours and due to this I could come off chemo if I wanted to, but they have recommend another 4.

This is big news, for now, I am cancer free, and It is big news as doctors have said that to be cancer free would  probably never be the case. 

Now, I understand that I am long way from a safe zone, and some people have asked does that mean an all clear, this is pancreatic, and sadly it doesn't work like that. 

But it (in theory) does take me back to where I was in December, so the next plan is to keep as healthy as I can, carry on and do as many of the 4 chemo sessions I can take. 

I spoke with the charity Pancreatic Cancer UK today, they are a great charity and I have never felt alone due to them. 

They were equality happy about the results and said do I understand how "groundbreaking" this is. it was not really until that was said to me, I realised how important this procedure is.

The procedure I have had is not on the NHS, now, if this works, and I stay healthy and fit, this could be proof that it is worthy of the NHS, it is available for other cancers, but not for secondary pancreatic cancer.

So it's back on with the healthy eating as I have slipped recently and looking forward to booking an holiday very soon. Chemo  finishes on the 5th June and then I would have another CT scan.   

 

Results from London

It is 6.49 in the morning, the alarm is on snooze waiting to let us know it's time to travel to London. This is to find out the results of the procedure and find out if it worked and got rid of my tumour.

I have not slept, and hope I haven't kept Rob awake by been restless. When I'm on chemo the sickness drugs and sleeping tablets knock me out, but I don't take them when not needed. I wish I had taken one last night.

When I did fall asleep I was having strange dreams, on a day like this you need sleep to cope with all situations the best way you can, I think I may have rely on substitute of caffeine.

Rob is driving me down to London and the appointment is around 12.00.

The last time we went to London, which was about a month ago to get the procedure done, Rob lost a small tag I had bought him at Christmas, to go around his neck that was engraved, it was not expensive and in all honesty due to my cheapskate antics, it was only held on with knot on leather cord, and that's why it fell off! It is replaceable, but I knew it upset him.  

It's now 7.04, and I'm wondering if I pressed the wrong button for snooze.

We are on the motorway, it's 8.45am. My Mum arrived this morning we are getting the bedroom decorated using the money from our civil partnership, birthday and Christmas (thank you, photos to come) so my Mum is at home looking after the dog and pointing which wall should be which colour. It has been a busy household this week, while I have been sick in bed, Rob has been busy sorting out the bedroom and clearing it up, also we had a new boiler fitted yesterday, so it has been a little chaotic.

I have been asked to write a blog for pancreatic cancer action which went live yesterday. I found it hard to write as they wanted information regarding how did I find out, what were the symptoms and how did I feel. I don't really remember, I find it easer to write about the now and I find it hard to remember life before cancer.

I hope today reveals good news, one of my brothers have called and I have had good luck messages from friends by text and Facebook. It's so much more happier to tell good news, it's 9.25. I do realise I am a bit all over the place today with my blog, I am a little tired but we are having a day off the healthy eating so the sugary drinks, sweets and cookies seem to be helping  with the energy levels for both of us.

When the boiler people came yesterday they moved some of our piled up items in the front of the radiator, and when I was sorting this out last night found the small tag that Rob had thought he had lost in London, I have not told him yet and want to get something a bit more secure, like a chain so it doesn't fall off, if I can do this in London I will.    

11.30 and I have gone very quite, Stress and tiredness as taken over. 

12.00, we see Professor Leen I explain that I have not slept. 

It's now 12.50 and we are on our way back, I don't want to go all deep or should I say try and go all deep but I feel so tired and confused and emotional right now, I will blame that.

We can not change things in the past, and we can only steer for the future, so with that in mind the only amazing truth we have is the very now, and right now I am so glad to say the procedure worked, and the tumour has gone, the professor is happy with the results and he thinks my tumour count will go down further.

It's nice to give good news, I can hear the relief in my parents voices when I tell them, and both Robs and my family can continue with there day without worrying about us, it's a friends birthday today and it was not spoilt with bad news.

I gave Rob the lost tag, the engraved tag says "be happy" 

Today's a good day x

   

Result...

I work myself up when waiting for results, anxiety takes over.  The doctors are trained on how to give bad news, so you always know when it is about to happen (they seem to slow down and prepare you before revealing the news).

I get scanned next week to find out how successful the Radio frequency ablation was.

But, by axcident I have been given some results already.

My blood gets tested, at the start it was every 3 months, and now i think its every 2 weeks, this is called CA19-9 and every this below 32 is classed as normal.

When I got the call in December to say that they thought the cancer had come back, my reading was 90, a few weeks later it was 230, after that, I did not really want to know what the reading was, so I ignored it, and I think the doctors knew this as they stopped telling me.

Anyway! I am glad (shocked) to say that i found out yesterday that 2 weeks ago it had gone down to 78, this was after the treatment in London. I had a new test yesterday and I have just got the results from my GP, its now 31!

So, whatever we are doing, if its the treatment in London, or the chemo, or a vegan meal, or sucking on a lemon, whatever it is, it seems to be working, and for now, I am buzzing at the news!

Its chemo tomorrow, and you know what, I'm not scared, actually I am now looking forward. I suddenly see it has a friend, ok a badly behaved one, but still a friend.

Over a week later...

Who is responsible for choosing the word ‘chemotherapy’?Anything with the word ‘therapy’ ending it usually describes something that involves whale music or deep relaxation or bells.

Why can't this just involve bells?

That’s another week on the chemo merry-go-round and it seems that each ride becomes longer, and the queue to recover to get back on gets shorter.

I can’t believe it’s now Wednesday (when I started to write this blog post), and it’s taken over a week again to manage to stagger out of bed.

The sickness drive was in for a week.  A sickness drive is a large injection that with time mechanically pumps more anti-sickness drugs into me, and it did work, but, it also lead me into a false sense of security.

I had my chemo last Wednesday and only two or three days later, I was kind of feeling ok (when I say ok, I don't mean doing an hour in the gym, but I was at least able to lift my eyes and get out of bed). All was OK, my partner and family who run around me now, cleaning, washing, feeding, everything(!) started to get their own lives back again, and Iwas up and about, and doing things for myself, and then thesecond side effects kicked in.

That lasted three or four more days.

Chemo brain is back. Chemotherapy really plays with your thought process, you can be immersed in conversation and then, you haven’t got a clue what you are talking about; or something grabs my attention and then I don’t know what I was talking about again.

This did happen with my last lot of chemotherapy, six months ago, and it upset me then and wound me up. That got me nothing though really, so this time, I’m going to enjoy it and if it does get to a point where I’m walking around taking to walls, and cartwheeling across a motorway, please think, “Oh well, at least he looks happy!”.

Rob has wallpapered the kitchen with things we can and can’t eat, and with this the good news is - I won't die of cancer, but the bad news is - we will die of malnutrition (Rob – I’m joking! :)) No, in all honestly I’m enjoying what we’re eating, and it’s not that hard really.  Mind you, if you saw the two pizzas we ordered last night you’d think, “No it doesn't look that difficult!” - it was a cheat night!

It looks like I have a CT scan coming up to see if anything has spread and also in two weeks Prof Lehm wants to see me to see if the ablation has worked, so we’ll be heading back to London.

As for other stuff in my life, we are currently working on a project with my street food business Market Wraps to cater for Leeds Youth Film Festival, which I’m looking forward to. It’s nice to concentrate on something more normal than chemo.

It’s easy to get taken over by everything that cancer offers. I’m trying to at least have a life around it, your life has to fit around cancer, as cancer won't fit around your life, but I think one of the key things is to make sure that you do your best to fit a life around it. So with that I’m really looking forward to working on this Market Wraps project, we’re working on a Happy Meal style box that’s connected with the film we’re serving at – ‘Scooby Snax’ (to go with a Scooby Doo film) and a ‘Toy Box’ meal to go with watching Toy Story!