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!  

Radio-frequency ablation and shopping

Rob and me made our way to London to get the radiofrequency ablation  done, this was at a hospital called The London clinic, this is just on one of the streets off Harley street.

In hope that the radio frequency ablation will shrink or kill the tumour, which can be done if the tumour is less that 5cm.

This is the first time I have gone to a  private hospital.  I am a big fan of the NHS, so I thought it would have to do really well to make me think it is better.

Our first impressions was not the best. Have you ever walked into a bar and you feel not worthy of walking in, it was a bit like that. The security looked at us like we should not even be on the step never mind in the building.


So the day after I was not really looking forward to.

We stayed at a friends house which was lovely as it took my mind off the procedure, and also we all went out for lunch.

The morning of the procedure we had to be there for 6.30am.

Rob and myself have never really been very good at mornings, or times, so we did start to panic when at 7am we still had not found the parking.

You can park your car in London at https://www.parkatmyhouse.com due to panic we did not find the massive car park at Euston, so I got out of the car and ran.

The reception is very different from an NHS hospital, and I must say, my experience of the day before disappeared, from there on, everyone was amazing and made you feel very looked after.

The room was lovely, and includes:

• electronic patient-controlled bed
• en-suite bathroom
• air conditioning
• TV and radio with remote control
• telephone with direct dial facilities
• nurse call system
• personal safety deposit box/safe
• WiFi internet access

But more than that, it was the staff, they where all really nice and really looked after you. I guess for me the difference between NHS and private is they have more time for you, and they were not rushed off there feet. There is one nurse to 4 patients at the London Clinic.

The food was great too, and there was a wine menu! the day of the procedure, professor Leem came to see me, and put me at ease and with all of his staff too, all of them where brilliant and really reassured me.

When I woke up after the procedure I panicked slightly. Just after everything that has happened, I got it in my head that something had gone wrong.

So when I saw Rob, I said to him, somethings gone wrong, and then we then both panicked.

Professor Leem came to see me, and said that it was very straight forward and everything was fine.

I now have to wait to the next scan to see if it has changed anything.

I did sign a contract to say something like, don't sign a contract in the next 48 hours. I didn't really understand why, until after the procedure.

I did feel pain, and professor Leem did say it would feel like i have been kicked, but what he didn't say was, by a horse! but thankfully the drugs was still putting a smile on my face, and the pain is fine, a couple of pain killers and it was not that bad.

I think it does involve some strong drugs because when i came around I could not stop talking, this poor nurse could not leave my room! and as I felt at that point I would sign anything!

and with that in mind, I decided to leave the hospital! I did ask the nurse if I could leave the room and she said I was allowed to walk down the corridor, but down the corridor was the lift and, well, I decided that I felt fine and I wanted to go shopping!

I must admit, I did get some strange looks in the supermarket, i guess this is due to wearing a night gown. The night gown look is extremely popular in Morrions in Hunslet, but not in Waitrose on Harley street.

When we came back into the hospital, i was asked if i was visiting! 

Professor Leem was happy with the procedure and I now have to wait 2 weeks for my next scan to see if it has help shrink or killed the tumour. 

The day after we left the hospital, I felt fine. I will blog when the results come. 

Gardening, Comedy, and God!

Rob and I went to B&Q, just before my last chemo. My white cells have been down meaning I can more easily pick up colds, so when Rob was looking around the outdoor area I kept warm and stayed indoors. I was walking down the aisle and was looking at the plants. I used to do a bit of gardening when I lived in the last flat, I wasn’t very good.

But with a bit of time, and patience, the plants started to grow and the balcony looked great, ivy was even climbing the wall, and the smell of the herb garden was full. Even more scary, I realised I had hit the grand age where you are happy to say, “I enjoy gardening”!

 I don't want to write about negative things, and also I don't want to upset anyone, but at times, you get down, and at that point, in the middle of B&Q, I felt a deep sadness. I wanted to grow plants again, but at that moment in time I felt I wouldn’t know if I would see the flowers bloom.

A friend in the past has said that I don't live enough in the now and I plan too much for tomorrow. I guess what they meant is, always planning something with my street food business etc.

Cancer violently throws you into a position where you suddenly live in the now, I don't really plan beyond next week. We should all live in the now as we do not know what is around the corner and cancer has made me appreciate this even more, and we should all take some time out of the day just to stop and just really be thankful for that day. But do you know what?

I can’t just live for the day any longer, I have a need, and that need is to try and put a bit of normality back into my life and that means put a bit of planning back into my life, we should all live for today, but also plan for tomorrow. Due to sickness from my chemo, the doctors and the hospital appointments, forward planning is limited, but not impossible. Suddenly with this new train of thought I feel very free - the freedom to plan.

Something has changed in me recently, as you may know yesterday I was in London having the RF ablation procedure, (not NanoKnife as I keep calling it)  which I will blog about later.

I’ve been quite passive in the fight of cancer - the doctors tell me to take this pill and have this bag of chemo injected into my system and Rob tells me to take this vitamin pill etc, and I do it. But I do what I get told to do, I’m not very active in finding out what I should be doing myself.

 A lady has contacted me via email this week (and I hope she doesn't mind me saying), called Annette, and Annette's family are going through the same stuff as Rob and our families are going through. Annette has said:

"Up until now we have all found it hard to smile but listening and reading things from you and Rob has lightened our spirit. We will continue to follow you both closely and thanks for being such great guys. Everything crossed for you and hope to keep in touch."

What a nice thing to say!

Annette also sent me a video of a gentleman who has pancreatic cancer and is trying all types of alternative medicine and he’s surviving.

This has made me think, and give myself a bit of a kick up the arse, stop feeling sorry for myself and just get on with the things I need to, things like planning to live for tomorrow.

Many years ago I used to perform stand-up comedy, this was when I lived in London when I was 19, so many many years ago. A couple of years ago I did try it again, and still enjoyed it, but holding down a full time job and then travelling to get to a gig and then staying ‘til late was exhausting, I started running the market stall and the gigs got less and less. But this week I saw that Matt Lucas had been tweeting and pushing awareness of pancreatic cancer. When I was in London, our paths crossed a few times as we were both were doing open mic nights. Matt was doing a character called "Sir Bernard Chumley" a very professional and polished act, and my act was more, I don't know, more panic attack! Sometimes it worked and then sometimes it involved 80 words a second, and my 10 minute act fitted into a sentence and the audience, well some of them gave me benefit of the doubt and thought it’s not quite comedy, but maybe it’s an art form when the others just thought it was just shit!

 I said hello to Matt and thanked him for the pancreatic cancer awareness tweets, he tweeted back and said “Wishing you all the best x”. I have started to think more about that time and like I said, some gigs it worked and some gigs it didn't. I celebrated the good ones and kicked myself on the bad, but I now realise by living in the now but planning for tomorrow - as long as there’s enjoyment what does it matter? And without the bad gigs you don’t know if the jokes work or not.

So it doesn’t really matter. I’ve decided to get one or two gigs and do it purely for fun so if there are any of my comedy friends reading this, I am writing some new material and if you know of any open mic spots or comedy nights, please give me a shout.

More importantly, I have changed my mind, and with this, I went back to B&Q, and bought some plants. I now understand that I will not only enjoy the flowers when they bloom but also when they’re growing.

Tomorrow is chemo day! I saw one of the doctors yesterday, due to not having a car, and I am leaning on everyone right now, so my Mum came with me, the doctor asked in an round about way, if I was relying too much on my Mum, and maybe I should get out of bed when sick and exorcise for half an hour.  I am not sure if they fully understand the state I get in when sick.  I am nervous about tomorrow.

My cleaner, who is a really nice person, asked if I had ever turned to God, and even if I did just invite him in, I would be surprised.

Now, i am very opened minded about this kind of thing, and when I was young, I did go to Sunday School every week, until one week when cycling back I was hit by a car and decided that it was a sign of God and never went back after that. So I took my cleaners advice and I have invited him in!

I was NOT stud in the rain outside, naked, in a field, with thunder and lighting at the time, I think the invite happened half way though Judge Judy. Now this was about 4 weeks ago now, and so far a God like person as not knocked at the door, may be I should of done it in a field.

What to say with someone with cancer

I was told today that one of my old friends hasn't been in touch with me since October 2012 (when I was first diagnosed) as he didn't know what to say to me. 

This has made me think, I kind of understand, I guess, I know I've been in situations where I'm not sure what to say or I've said the wrong thing.

A few weeks ago I was working behind the stall, and a couple walked up, and the lady was a dwarf.  At the back of my head, a voice said "Don't say anything about her size", they both purchased, I made polite conversation, they both walked away and I suddenly notice that I said the words  "small", "short", and "tiny' all in one unintentional sentence.

I'm trying to see it from others' point of view, how would I feel if I had to meet someone in my situation? I must admit, I'm not sure. But, I can see it may be awkward.

But it did get me thinking, and that's why I've come up with this list.

What to say and what not to say to someone with cancer:

Not sure what to say to those affected by cancer? One solution is, simply avoid them.  But stop! Before you decide on avoidance remember this - cancer patients don't attack and bite into the ankle*, they haven't got the energy! So don't be scared, please use the advice below on how to handle a conversation with someone with cancer.

Do Say:

"Hello, how are you?"

People with cancer still have good days and bad, to say "Hello how are you is fine" (unless it's a bad day, and the response may be, "How the hell do you think I am?!")

Don't say:

[Wailing]
"First Hayley Cropper, and now you! Why why why?!"

Do say:

"So, what have you been up to?"

Living with cancer doesn't stop you from living, unless they're not living, and if that's the case, by asking "What have you been up to?", won't cause much offence anyway.

Don't say

"WOW, you look really shit!"

Cancer can slightly affect your esteem so tread carefully when talking about looks.

Do say:

"So, any news?"

People with cancer sometimes want to talk about cancer, but then sometimes they don't. Let them lead the conversion.

Don't say:

"Will you stop bloody complaining, you think you feel bad, you're giving me a headache!"

When approaching someone you know with cancer remember that they're still the person you knew before cancer, the situation has changed, they haven't.


*if the cancer patient does bite your ankle, try and look on the bright side, at least they will probably know the quickest way to A&E for you to get a Tetanus.  Good Luck!