The next step

It's been a while since my last update but I felt like I needed a break from overthinking things and wanted to just enjoy Xmas with the girls.

It was a relatively short stay in hospital for the severity of the surgery but getting back home in my own surroundings and comfort has really helped the recovery process.  I'm still in a deal of pain and discomfort with a bit of anaemia thrown in for good measure but I am making progress and haven't had any complications.  Considering the degree of re-plumbing that has gone on I'm back to eating anything I fancy,  albeit smaller portions, quite amazing really. I have to say that must be down to Mr Hilal and his world class surgery skills and team.   I've drunk some beer, wine and port as I felt it necessary to celebrate Xmas.  So, not to go in to too fine a detail the input is going well, the output is going well too! Its not something you think about day to day, you just take it for granted unless it gets interrupted for some reason!

The physical side of life is limited to what my abs will allow.  Sarah and I go for short walks around the block for my exercise routine.  I'm astounded by how little it takes to tire me out at the moment, just a short walk necessitates a sit/lie down immediately afterwards. I am still in the early stages of recovery, feeling stronger day by day and making progress which is encouraging.  One last drain to remove, next Wednesday, and I'll be tube free, that will definitely feel like progress. 

So what did the pathology reports show up?   We were given three bits of news: 

1. The cancer stage was T2 which means the cancer had grown, but hadn't spread (good)
2. The resection (what was cut out) was classified as R0 - no cancerous cells seen microscopically at the extremes of the area; the desired result (good)
3. Results from the Lymphadenectomy (removal of one or more groups of lymph nodes) showed that 3 of the 7 lymph nodes removed contained cancerous cells.  These were all situated around the head of the pancreas which was in the resected area. (not so good)

We haven't met with the Oncologist yet so don't have a clear picture of what's going on but I think there are two scenarios.  Scenario one could be that all the cancerous cells have been removed and I'm clear. Or, scenario two could be that there are some more cancerous cells that have migrated further afield that need blasting with chemo.   Personally, I think my only option is to take chemo.  There are too many unknowns not to try and reduce the risk of secondary cancer.  Its not something I'm looking forward to, far from it. I need to stack the odds in my favour to ensure I can collect my pension and become that grumpy old man I'm working towards.


More news:
In actual fact we were given five bits of news.  The fourth was the number of stitches for the whole operation.  I'll be sharing that with everyone in the new year, watch this space!  The fifth being that we have raised over £1,300 for the LAP Cancer R&D charity. Hopefully to be doubled by Microsoft fund matching!

Thank you for reading my blog, posting comments, and contributing to the charity it means a lot and  definitely helps me manage my situation.  I hope you've had a good Christmas and have a new year's eve planned with family and friends.  Its all a matter of perspective, 2016 has been a bit of a shocker but I'm sure we can make 2017 a better year.  I'll be raising a glass to you all this evening. Cheers!


Charity Page:
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=LAPCancerCharity&pageUrl=2

Guess who's back...

Guess who's back, back again
Litty's back, tell a friend
Guess who's back,
guess who's back...


This has been a tough journey so far, but boy am I grateful to be home!  The past week has almost felt like an out of body experience. Waking up and not knowing where I was or what had happened was quite surreal.  Being in the Intensive care unit where every single aspect of my recovery was expertly monitored and appropriate treatments given, I was a complete passenger in quite a scary environment.  My progress from Intensive Care was according to plan, but I did feel a little stir crazy and already had enough of the drips and the various lines going in and out of me.  The move out of Intensive Care to the private room was such a relief and felt like I was making progress. The final step was leaving hospital yesterday evening to get home and start properly recovering.

All along the way Sarah has been there holding my hand, helping where she could, offering love and support.  An amazing woman, I constantly remind myself how lucky I am to be married to her.  In fact everyone has been so supportive it has really buoyed my spirit and made me more determined to recover as quickly as possible.

Today has been a complete rest day, consisting of: plenty of small 'whipple' sized portions of food, a little bit of shuffling around the house groaning about how much pain I'm in, a bit of mindless TV watching due to still feeling fazed, and writing this blog.  Progress is being made, albeit slowly, and that's what I have to set my expectations at...slowly does it.  I am still daunted at the recovery needed to get back to being as 'awesome' as I was pre-op, but that's the plan (I've lost 2 stones in weight).

Tomorrow we go to see my surgeon Mr Hilal to talk about a couple of things: the histology report from all the bits they took out to see how far the cancer had spread, how long the two drains stay in my sides, and to get a view of how many stiches were used in the whole operation. 

Keep the comments coming and any music, film book recommendations send them through. Eminem kicked my day off today! Thanks to AD and also Spencer for the DVDs and books much appreciated.

*Artwork by my daughter Dorothy,  a leaving hospital present.

Home

This is just a really quick update to say that Chris came home this evening.  He was feeling much better today and Mr Hilal was happy with how things were going so he was discharged.

He's super-tired though and resting in bed so not quite up to doing this update himself.  Hopefully not too long now before he's ready to take back the reins.

Thanks to Doug, Dad, Helen & Andrew, and Hester for all your help last week. Also thanks to Reb, Pam and Ali for your help with the girls. And thanks too for all the offers of help and kind thoughts and messages.

Tired

Friday night was a tough one for Chris with lots of pain keeping him awake. Consequently he was feeling pretty rough and very tired today.  He's still doing well though, getting in plenty of walks and continuing to eat small amounts.

He was feeling just about well enough for me to take Dorothy and Roni to see him today.  Now that he is mostly de-tubed he looked very much Daddy-like, apart from the funny hospital gown.

Hopefully he will get in some better sleep tonight and feel a bit better tomorrow.

Finally, and because I know some of you are interested in these things, I can tell you that we now have Code Brown, people, Code Brown. 👍

A Room With A View

Things have moved on a lot today and I'm amazed at how far Chris has come since the operation on Monday.

Having started the day still in ICU and still with a considerable amount of tubes, I left him at 8 o'clock this evening up on the normal ward and with nothing but two drains in his sides and a cannula in the back of his hand.

The ICU staff have been fab but after four nights down there he was absolutely desperate to get out today and it's a big relief that he is now installed in a room with a window.

Another day, another big step towards recovery.

Awesome

First things first, Chris wanted me to say a big thank you to everyone who has donated on the LAP R&D charity page. Supporting him in this way is very much appreciated.

Chris has been awesome today.  Despite feeling understandably fed up and still in quite a lot of pain he has put in a huge effort to his recovery.  He spent 6 hours out of bed today, mostly sitting up in a chair but also did three walks down the corridor.  He's drunk a load more peppermint tea and has also had a bowl of thin soup, a bit of yoghurt, a couple of spoonfuls of jelly and a bit of Fortisip (weird milkshake multi-vitamin high calorie thing).

It is looking likely that he will be moved out of ICU tomorrow and will hopefully have a selection of tubes removed as well. Keep fingers crossed for this please.

You can keep your tall, dark and handsome heroes; I'll stick with my short, bald, big-nosed one.

Wind

First of all Chris wanted me to say thanks again for all the messages. He's not quite up to answering yet but he does appreciate all the good wishes.

He has had a reasonable day. His pain seems more under control and he was a bit brighter in himself.  He put in a gargantuan effort managing to sit in a chair a couple of times for about an hour and a half and even had a little walk down the corridor.  He's now in a side room in the ICU which makes resting and sleeping much easier.

Mr Hilal seems pretty satisfied with his progress so far and there doesn't seem to be any signs of internal bleeding or other serious complications at the moment.  He didn't quite manage a proper cuppa today but did have some peppermint tea.

The next big thing that needs to happen is for Chris's insides to start working properly.  At the moment his whole digestion system is on strike and needs to wake up so that he can start absorbing liquid and food. Wind is one of the signs that things are starting to work again.  I never thought I'd say this but what I'd really like now is for Chris to start farting.

A Mixed Day

Just a quick update this evening.

This morning Chris was pretty chirpy, his pain was much better and his blood pressure down. They had got him to sit up in a chair for about an hour as a way to start mobilising him which he handled really well.  I left at around 12.30pm with him feeling not too bad all things considered.

After an interlude at home sorting out the handover of childcare duties (thanks Doug and Dad) I got back to the hospital at about 4.30pm.  Poor Chris was in a huge amount of pain again, his blood pressure had gone back up and he was very subdued.

We had been warned that these ups and downs would be part of the recovery, and have been told that it is likely he will have a pretty down day tomorrow. We just have to keep taking things one step at a time.

I'm not wanting to end on too down a note, so today's good news, and something that did put a bit of a sparkle in Chris's eye this evening, he's been told that he might be allowed to drink a cup of tea tomorrow evening. Tea!

Whippled

This is Sarah standing in for the main man.

Today has been a Very Long Day.

I was up at the Spire at 6.45am to spend a bit of time with Chris before he was whipped away for his Whipple.  He went down to theatre just after 8am.

Fast forward to about 3.45pm and I got the call from Mr Hilal to say that he was pleased with how the surgery had gone and that Chris was now in the ICU.

The intervening hours were very difficult. No sang-bloody-froid from me I'm afraid.

Anyway, he is out the other side, and has managed some smiles despite being in a lot of pain and having too many tubes to count coming in and going out.  His blood pressure was looking a bit high but he's had meds to bring that down.  He is also high as a kite on morphine. We have been warned that the risk of complications is quite high so please keep everything crossed for the next few days.

Thank you so much for all the many text messages, voicemails, emails, blog comments, and Facebook comments. If you've contacted Chris today and he hasn't replied it's because he's not in a fit state yet to be using his phone but please know that it means such a lot that you are all rooting for him.

Don't forget to enter your guesses on the Number of Stitches sweepstake.  Instructions are on the last blog post here: http://chrislittsjourney.blogspot.co.uk/2016/12/a-stich-in-time.html

Sweepstake donations to the LAP R&D charity can be made here: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=LAPCancerCharity&pageUrl=2

I will post another update tomorrow.

A stitch in time..

The operation now looms large and is taking up most of my thoughts. Less than an hour before I go to the hospital for pre-op 'stuff'.  I've to go in today (Sunday 2pm) ready for an 8am start Monday morning. Gulp!

The support and comments I've had from the blog, email, text, IM and Facebook have really amazed me and definitely helped me stay so positive and focussed.  Thanks to all the boys that came down for lunch. I do find myself questioning have I really got cancer? Do I really need the operation?  Are you sure this is right?  I know the answer to all of these but it still doesn't stop the questions filling my head.

I met Florence yesterday an ex-patient of Mr Hilal.  What an amazing woman.  It was great to talk with her and her husband about what to expect in the coming days,  weeks and months.  Tough times ahead but a positive long term outlook.  Thanks Florence you've helped a lot already.

OK, so here comes the 'let's kick this cancer thing':  Just for fun and to raise a few quid for this noble charity, obviously very close to my heart - liver, pancreas, gallbladder and stomach!   I want to run a sweepstake on how many stitches hes I'm going to get in this major piece of surgery.  I have no idea what the number is or what the prize is yet, I'm still working that one out.  My gallbladder in a bottle of Tequila? (joke) Or, does anyone know of a celebrity that would give up an evening for a meal with the winner? Any ideas, offers welcome.

Here's what to do: 

Donate to the Liver and Pancreatic Research & Development Cancer Charity using the link below.

• Enter the following in the message box -  'For Chris Litt - Number of stitches XXXX - Personal message'
• Ideally I would like £10 donated per guess
• Forward onto anyone I know or anyone that will be interested in donating.

LINK:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=LAPCancerCharity&pageUrl=2

Your support will do two things:

1. Keep me positive and motivated,
2. Help kick this cancer thing and go towards developing and refining treatments.

I'm going to be in intensive care and then the high dependency unit for the next couple of days, Sarah will update the blog during this time.  Thanks again for all your kind words and support.  See you on the other side...of the operation.

Information to help with your guess:

Whipple procedure  

http://www.allps.co.uk/pancreatic-surgery.php

I'm counting any staple as a stitch.

Time for PMA and sangfroid.

Thursday 8^th Dec, morning:

Sarah rushes into the bedroom and thrusts the phone in my hand.

"Good morning Mr Litt, how are you? Sorry to call you so early in the morning" says Linda apologetically.

“Er, um yeah I’m fine thanks.” I say trying to sound like I’ve not just woken up.

“There’s been a development, a cancellation and availability for surgery. Have you eaten anything this morning?”

“Wow! No, I’m still in bed, I’ve not eaten or drank anything” It now dawns on me that surgery is being offered today!

“How quickly can you get to Southampton General?” Linda then goes on to explain the plan.

I pressed the red button on the phone, took a breath and looked up at Sarah. 

That was the start of Thursday morning, from slumber to springing into action.  Linda the surgeon’s administrative assistant was trying her best to get me in for the procedure as quickly as possible. The plan had been for the 13^th December but availability of operating theatre space still hadn’t been confirmed and was being problematic.  Let’s go with this we thought, time is tight before Christmas and we don’t want it to be delayed by lack of available dates. Rushing around the house sorting out: an overnight bag, passwords for everything, who we should contact, questioning if we should tell the girls before I go in, almost ready to leave the house and another call comes in.

“Stand down, Southampton General’s high dependency unit is on red alert due to lack of available beds. All operations are to be cancelled today.” Another apologetic call from Linda (paraphrased).

A bit of a rollercoaster ride to start the day but good to know the surgeon and his team are working hard to get me in for the surgery. The day progressed well as I watched my brother, Tim, put a new side gate on the house.  It was great to watch a handy brother take charge and do something I’d been putting off for months J.  You’ve got to get the best out of people when they offer to help.  I may take up some of the offers to help as the whole of the downstairs needs repainting and the garden tidying…keep the offers coming in.

One thing I mustn’t forget was Roni’s celebration at her school.  This was a presentation by all the year six kids on an architectural project they’d being working on all term.  “Don’t forget Dad”, this was the reminder on the fridge.

 Finally, after what sounded like a massive effort and much negotiation from Linda and the surgeon they have now secured the operation date and all the necessary staff.  Monday 12^th December is going to be the date to carry out the Whipple procedure. That gives me a few days to enjoy as much good food as I can.  So, the day was finished off by having  a cracking curry with Tim and my good mate Neil Barfoot (aka Colin) at the Purbani in Botley.    

Earlier in the week:

Saturday – Monday 5^th Dec.

The weekend was a good time to let the whole situation settle in our minds and gather questions for the surgeon.  I spoke to an ex-patient waxing lyrical on how good the surgeon is, her progress over the last three years and what I should expect to go through. A huge help and reassurance.

 On Monday Sarah and I met up with the surgeon, Mr Mo Abu Hilal, to talk through our questions and understand more about the Whipple procedure.  Both of us gained a great deal from the meeting and felt much more comfortable with the procedure and outcomes.

Wednesday 7th December

A great day in London. It started in Costa coffee with Dave, Dave an Keith.  A more unsympathetic bunch you couldn't wish to meet -  we had a hoot.   Lunch at the top of the Gherkin with Jeff Johnson and the whole Azure leadership team (picture at top).  I continue to say this but I do work, and have worked, with some amazing people that are so genuine and supportive.  I’ve truly been taken aback by the support and kindness everyone has shown, it certainly will help me on this journey.

A quick drink and catch up with Catherine and Barrie before the train home.  Great to recount the wedding of the decade in Buncrana, Co. Donegal, Ireland. 

Catching the train home from Waterloo.  I had 10 minutes before departure, the girls had asked me to buy them something in Lush (bath bombs etc.).  I ran into the shop with my list prepared by Roni,  just so I didn’t forget.  I saw the shopping assistant, list in hand I pounced and barked, “I’ve got 5 minutes and this list can you help me? Two of everything.”  She could and she did in double quick time.  While waiting impatiently for a woman to decide on her purchase I kindly advised, “it’s only a bath-bomb (£4.95), just buy it, you’ve got bigger things to worry about I’m sure.  Life is too short.” She turned and looked at me and said “You’re right, I’ve had some terrible news last week and found out two friends have been diagnosed with cancer.  Life is too short to worry about the little things” I turned and smiled, “I’m sorry to hear your news, I wish them all the best. Let’s worry about the big things”.  The shop assistant had by then rung everything through the till “Here you go sir that will be £48.50 in total.” I nearly collapsed, £48.50 for bath-bombs!

   

Sangfroid – A word not commonly used but I was reminded of by a good friend, Mr Joyce.  Apparently, I have the ‘sangfroid to kick this in the nuts’.  I like the word and the sentiment and hence the title of this blog update.  

The start

I consider myself a lucky guy; here I am with my lovely family. I work for great company, Microsoft, with amazing people. I have the best friends and family I could wish for.  Life was sweet!  This is a blog about my hopefully brief encounter with cancer.

November 2016 was a strange and testing time, character building I like to think, starting with a 'Yellow Episode' in Seattle, painful and debilitating. Initially it was diagnosed as Obstructive Jaundice, a generalised term for the symptoms.  In quick order tests and scans were carried out and gallstones looked like the most likely cause. A simple and straight forward operation was needed to remove the stones and unblock me.  However, what was found was a growth around where the bile duct enters the intestines - Ampullary Cancer. All the scans indicate the issue to be localised and early stages. My main worry is the potential for it to be pancreatic cancer which has very low survival rates.  Thankfully it doesn't look to be the case but quick action is needed to prevent potential spread to this area. The plan and my only option is major surgery to remove the affected area.

 Why the blog?   To keep friends, family and work close and updated, keep me from getting bored and feeling isolated. Also, hopefully a means to raise a bit of money for cancer treatment and research rather than wasting it on cards and flowers.

What's next? Major surgery (Whipple Procedure) which removes the affected area, part of the pancreas, the gallbladder, small intestine and part of the stomach and re-plumbs the whole setup, 6-8 hours.  Followed by an 7-10 day stay in hospital and a 4-6 month recovery period.  The date is looking likely to be 13th, yet to be confirmed.

Charitable causes:  I'm in the process of setting up a Virgin Money Giving page and will paste the link in the blog before I go under the knife.  Charities chosen:

• The LAP R&D Cancer Charity is based out of Southampton University Hospital Trust, aims to continue its research and development of pioneering surgery to help early detection and survival rates.
• Cancer Research UK