Chemo done, hopefully my last blog.

Hengistbury Head, end of June

It has felt like forever but I've finally got to the end of my chemotherapy treatment. Hoo-fu****g-ray!  I do genuinely feel elated to have achieved my goal of finishing chemo on schedule without missing a session and still being in one piece at the end of it, scarred and needing a fix for my slightly broken abs but roughly still in one piece.  I have said before that 'I'm looking forward to looking back on it' and here I am feeling relieved and elated, looking back on the whole journey.  The next six paragraphs summarise my experience so far, its been a cathartic exercise and worthy of my final blog.  If it's too much to read just skip to the last two paragraphs.

It all went pair-shaped  back in early November when I had my 'Yellow episode' in Seattle, a painful and debilitating few weeks followed until I was diagnosed with cancer.  I went in for a procedure to remove what was thought to be gall stones and came out with cancer.  That was not a good day. Scans and test followed very quickly to diagnose the extent of the ampullary cancer, waiting for the CT scan results was torture. Not knowing how bad it was made it difficult to deal with, I/we were hoping for at least a plan of treatment rather than palliative care.  It was not as bad as it could have been and a plan of treatment was suggested, a major operation to remove the offending area; a Whipple procedure, aka a pancreatoduodenectomy.

Preparing for the operation opened with a false start, a call in to the hostpital then a 'stand-down',  just to really put us on edge.  The date was finally set for the 12th December, hopefully the day that removed all traces of cancer from me.  I came out the other side of being Whippled, an eight hour operation,  dazed, confused and high on morphine.  Four really tough days in the ICU followed by another four really tough days recovering on the ward.  At one point I had fourteen lines coming out of me and a whole array of machines that went 'ping'.   In the mean time the amount of support from everyone was amazing; messages of encouragement and donations for the LAPRD charity , guessing how many stiches I had and raising around £3K.

Getting my newly plumbed system working again was a big deal, painful and a truly grim experience. Days of pain and frustration followed the operation trying to eat, digest and go for a number 2. I got to the point where I thought I'd use caffeine to get things going a little. A strong coffee has always worked for me and it didn't let me down in hospital, in fact it had a rather drastic effect.  After a strong pot of coffee I exploded both ends simultaneously, unpleasant and painful. My freshly sliced up stomach muscles had to work double time.  Poor Sarah had to witness the whole episode and keep handing me sick bowls.  She was pleased to report 'code brown' on the blog though.  My plan had worked and it got me out of hospital in good time; they won't let you out until your digestion system is working properly. Job done, on to recovery.

Leaving hospital felt such an achievement, I didn't feel in good shape in fact I felt terrible, anaemic, two stones lighter, two plastic drains coming out of my sides and bags to collect the fluid. The early days of recovery at home were tough, sleeping was really difficult and the pain was still crippling, on the positive side my appetite was improving and I was managing to eat reasonable sized portions.  It took me a while to drink tea again mainly due to the stuff that comes out of your pancreas is tea coloured, I had to empty my drainage bag of this coloured fluid every day for a few weeks!

I got the bags removed after several weeks and my recovery was I'm told 'excellent', well ahead of the norm.  The test results had come back and confirmed I had a T2 cancer which had infected 3 out of 7 lymph nodes removed.  The margins of the section that had been cut out was clear of cancer, basically nothing showed up around the edges of the bits removed. Some good news and also potentially bad news, time will tell.  Also, the number of stiches was confirmed as 140, well done Jeff Johnson for a very accurate guess.  

With such a swift recovery from the Whipple operation I was put forward for chemotherapy four weeks early. I started chemo the beginning of Feb, six cycles of four weeks which took me up to 5th July.  After understanding the treatment and the prescribed drugs I was a bit concerned by the list of side effects. As it turns out I've managed pretty well with the side effects all things considered; I've mainly suffered with sore hands and feet, nausea, diarrhoea, anaemia, tiredness, chemo brain and a few other things.  I won't miss being stuck with the scores of needles for blood tests, intravenous drips and hundreds of tablets that make you feel shit.

As I've said in previous blogs, chemo has been tough, very tough, it's had many low points and affected my mental and emotional state at times.  Chemo is a real challenge and a test of character, hopefully not to be repeated. I am so glad to have finished and now have the ability to recover from the operation properly, flush the drugs from my system, sort out this anaemia, get the hernia operation and resume normality or something close to it.  In my first blog I'd hoped this would be a brief encounter with cancer and I'm still hoping that's the case.  Its been a long and tough journey with crucial medical treatment delivered by an amazing team of medical professionals, who I have nothing but admiration and respect for. Although, as much as I admire them I would like to see much less of them from now on in.


So, where to from here?  I had a CT scan on Monday 3rd July and find out the results from the Oncologist on the 10th.  I can't imagine anything but a clear scan at this stage so I'm not too worried at this point.  The scans further down the line will cause a bit more worry (next one early Dec).  The plan is to take a couple of weeks to flush the drugs from my system (with alcohol), get rid of the chemo side effects and start back at work mid August after a fortnight in Cornwall to fully recuperate.  I think it will take a while longer to get back to fully functional, I'm taking it one day at a time and will get there.  Thanks to my lovely wife, family and for everyone's support and encouragement throughout this part of my journey, I hope to raise a glass with you to celebrate looking back on these events.  I am doing just that now. Cheers

'We've come a long way baby'

Hernia prevention apparatus :-(

The end of chemo is nigh which I have mixed emotions about.  It's been a bit of a journey since October/November last year, not a pleasant or easy journey and definitely character building. The last few weeks have been tough both physically and mentally, there have been a few low points.  I'm getting new side effects from the drugs and the ones I've had from the beginning are more pronounced. I felt like I was doing so well coping with the chemo, the situation and gaining strength week by week but I've had a bit of a set back.  I've managed to tear some stomach muscles where the incision from the operation is, apparently it's a common occurrence but needs more surgery to fix.

As it's the last cycle I need to have a CT Scan to check if there are any cancerous growths to be found.  With my focus being on completing chemo to schedule I've not thought much about the scan and what it could find. Throughout all of my treatment I've remained positive and can only see a successful outcome but this does scare me somewhat.  I've been told that if secondary cancer is found on my liver or lungs typically the treatment will be palliative, that means no cure but just managing the situation with more chemo. A sobering thought and one that has had an affect on my mood over the last few days together with the other stuff.  

I'm definitely not my upbeat self at the moment and am trying desperately to snap out of this malaise.  As well as my concerns and injury I think my level of toxicity from the chemo drugs is having an affect on my mood and general cognitive functions.  The 'chemo brain' has most certainly kicked in. A quick internet search on mood changes associated with chemotherapy throws up articles stating:


"Research has shown that inflammatory cytokines [chemical messengers released from the immune system] can enter the brain and affect many of the brain circuits and chemicals that are involved in depression, anxiety, fatigue, and impairment in memory and concentration," 


When you're dealing with the most difficult situation in your life the drugs and cancer can screw up your brain function and ability to cope with it...awesome!  Its a good job I've had so much support from Sarah, the girls, family, friends, long time friends I haven't seen for years, and work. Jeff, Mark and everyone at Microsoft have been so supportive, it really has taken a burden off my shoulders, no pressure from work at all, I'm hugely grateful for the support. 

The way I'm feeling is strange, my mood and thought processes definitely affected by the chemotherapy.  Putting the injury to my abs to one side I thought I'd be cruising to the end of chemo be really positive and upbeat and ready to celebrate the end of treatment but that's not how I feel right now.  I'm annoyed at myself for injuring my abs, the drugs are getting the better of me and I'm not upbeat.  However, the drugs are coming to an end, this mental state will pass, I will have an 'all clear' from my CT scan, I'll get back to work,  I'll have to manage with broken abs for the time being (windsurfing/sailing and other outdoor sports will have to wait) and look forward to the fix in December, life will be sweet again. 

Sorry its not my normal cheery blog update but this is how I'm feeling right now.  I'm sure the next blog will be upbeat and easier to read. 


Grumpy Chris

Farty, forgetful and f****** sore feet

Off The Beaten Track Festival - Burger and chips in the van

The end of my treatment is getting closer, I'm a couple of days over the two thirds mark and coping well.  It's now round 5 of 6, which means I currently have 160 tablets and 5 intravenous sessions left to go. 

Farty, forgetful and f****** sore feet.

   Throughout my journey I've blogged honestly and openly about my experiences and challenges faced.  I think I've been lucky and not had too bad a time with it all, I've experienced most of the common side effects to a lesser or greater degree.  There are a couple of things that do seem to be getting harder to deal with but as the end of the treatment draws closer its more of a mental battle than anything else. 

Taking the list in reverse order the sore feet side effect is always a good one and makes me laugh at how I have to mince around after over-doing it the day before. If I've gone for a short walk or been on my feet too long I pay for it the next day and have to be 'light on my feet' to reduce the pain. Its a good look and most probably suits me!   'Chemo brain' is one of the horrible side effects, it slows down thinking, reduces concentration span and affects short term memory.  It takes days after treatment to think clearly and for my concentration levels to return to near normal.  I'm too spaced out to even watch daytime TV, how bad is that? Not enough brain power to watch Jeremy Kyle, bad, very bad.   Farty, you may think is the worst side effect but actually it maybe my body trying to protect itself, bear with me on this and I'll explain.  During chemo treatment the drugs can effect liver and pancreas functions, both useful in digesting food.  It must be a combination of a number of things: chemo drugs, my re-plumbing, not taking enough Creon (digestive enzymes), and what I eat, they all add up to me occasionally being very farty. This may not be a bad thing though as there have been scientific studies to show that 'farts cure cancer'.  That's a bit of a headline grabber and not all too accurate but they do reckon that,

'hydrogen sulphide [produced in farts] in small doses can prove protective to the cell’s mitochondria, ....therefore can help cells resist the progression of many diseases.'

Silent, not deadly; how farts cure diseases

https://www.theguardian.com/science/brain-flapping/2014/jul/14/silent-not-deadly-how-farts-cure-diseases

So taking that on-board I now stick my head under the duvet and keep the car windows closed after a good fart and let the hydrogen sulphide do its trick.  In true altruistic form I keep saying to the girls, "sniff up its good for you"  but they're having none of it! 

It's not been all bad,  last week was drug free, I managed to squeeze in lots of events and catch ups.  I met up with some of my old team from Cisco for lunch - a lovely afternoon with steak and chips, well organised by Raghav.  I went sailing on the Solent in a 42 foot yacht and got a tour of BAR - Ben Ainsley Racing HQ courtesy of Nick Topham and Jeff Johnson - a brilliant day. Went to a private festival in Dorset organised by my 'chemo buddy' (Andrew), with three live bands (including the real Elvis!!!), food and beer, it was an awesome weekend.  Following that I minced around with sore feet (and hands), farted a far bit and was wiped out for two days, well worth it though.


I'm still here grinding through chemo, putting weight back on, looking healthier but gradually going a little bit doolally.  The light at the end of the tunnel is getting brighter and hopefully, so too my future.



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The halfway point

Before I start I hope you had a good break over Easter and enjoyed some time with loved ones, I did and had a great break from chemo for a week.

I've now reached the halfway point of my chemo treatment, three cycles done and three to go.  It's definitely been a journey with its challenges both physically and mentally, there have been some high points and a few low points too since my last blog.  More to come I'm sure but I'm on the back straight with the finish line in sight - the end of June.

Some of the high points have been: testing out my stomach capacity for beer and curry with my good pal Neil and cycling buddies. I'm pleased to report that I managed five pints and a full curry, nan and rice.  Not bad considering I've had a third of my stomach and liver removed, amongst other bits!

Another was watching Jeff Johnson take on an opponent half his age at the Ultimate White Collar Boxing event, winning his match and raising over £3,000 for Cancer Research.  A terrific effort from Jeff, so focused and well prepared it was a joy to watch, especially with a gin and tonic in hand. A couple more drinks were had in the following 'victory party'. A sore head and lethargy followed the next day!

A definite highlight was seeing Dorothy and Roni in their dance show at the Point, Eastleigh Theatre. They'd been practicing their dances for months, all the hard work plus the taxiing efforts from Sarah to practice sessions paid off, they were awesome -  making me a very proud dad.

After the dance shows, Easter was low key but enjoyable, spending time with the girls on day trips out.  Unfortunately, with the timing of everything it wasn't possible to grab a couple of days away.  Fortunately though it was my week off drugs and what a difference that makes, I almost felt normal.  It's been a while since I've felt that good, in fact thinking back it must have been around mid October before all this kicked off.  

I don't like to dwell on the low points but there have been many days of feeling shit. Typically after chemo on Wednesday I'll feel shit, Thursday I'll also feel shit, Friday I'll not feel quite as shit and Saturday will be better, Sunday and Monday I'll just feel tired and mildly nauseous, Tuesday is blood test day and we come back to chemo day.  That's the cycle and most days it just feels like watching the time count down, frustrating, but I'm getting used to not achieving anything in a day other than letting it pass.   I've found as the treatment goes on the side effects get more pronounced, for this cycle I had to stop taking the oral drugs for 48 hours as my feet were too painful to walk on.  In sympathy for my feet  my hands have also become red and sore.  I'm just waiting for the mouth ulcers, but so far they've not made an appearance.  

I have been managing the low points by staying positive, planning out future holidays and events, things to look forward to and share with  family and friends.  After one particular tough treatment I felt quite down, the following day in a fit of defiance I bought a new windsurfing board.  I'm using the chemo excuse to good effect!

I'm doing OK and grinding through the treatment, getting there day by day, looking forward to looking back on this experience and returning to work and normality.  Thanks for all the encouragement and well wishes they really do help. 


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A third of the way through.

An aerodynamic Red Baron! Lunch with Stu Moulton and a ride in his Triumph Spitfire.

I'm now a third of the way through my chemotherapy, just finishing my week off and getting ready to start the next round tomorrow. Looking back, I was really feeling the effects of the drugs towards the end of round two and had some new side effects crop up, one of which was Palmar-Plantar Erythrodysesthesia, Hand-Foot Syndrome.  This made the soles of my feet really painful to walk on.  It has put a bit of a dampener on my daily walks, the exercise bike now looks to be a better option to get some gentle exercise. As well as the standard side effects, tiredness, nausea, squits etc. I've now got a runny nose and noticed my teeth have gone slightly yellow, a recognised effect of the capecitabine drug. Nothing that tissues and a bottle of bleach can't sort out!

What a difference a week off the drugs has made on how I feel.  As the drugs wore off so to have the side effects. I haven't felt sick, squitty or so tired and have had some mental clarity- thinking straight and being able to concentrate.  After the sore feel incident I've tried the exercise bike at the gym to take the pressure off my feet. Because I was feeling so much better I pushed a little too hard on the exercise bike and managed to black out for a couple of seconds. There's always a limiting factor, in this instance it was the anaemia limiting how much oxygen I could take in.  No harm done and I've taken it easier since then. 

One of the highlights of my week off was going in to work for the Friday team call.  It was great to catch up with everyone, get the latest news and share more details on how I'm getting on.  The level of support I'm getting from all at work really does make a difference. It felt like a bit of normality in my otherwise abnormal world. One of the lowlights was missing out on the annual Dave Spong ski trip to the Three Valleys in France, with a group of fantastic people who excel at skiing and drinking.  Thanks to all for the messages and pictures.  Hopefully my 'lame excuse' of having to go through chemo will be sufficient for me to be invited to next year's trip.  I'm looking forward to it already and working on my drinking capabilities.  I think my liver will have fully regenerated by then. 

I feel physically and mentally strong going in to round three knowing what to expect.  There will be some tough days of feeling awful, lots of sleep, chemo brain and counting down the clock. It's all about perspective, staying positive and having the next point to look forward to. And, also having a fantastic wife and kids helping me out day to day, support and understanding from work and friends.
  So, here's to seeing out round three and getting to the half way point.  Round three starts tomorrow.

Round 2

Its been a while since my last update, I hit a bit of a tough time and struggled to do anything including blog!

I've completed the first of six treatment cycles, three lots of intravenous drugs and 126 tablets, and am now into the second cycle or Round 2!  For the first cycle it was tough going and towards the end had totally washed me out.  The main problem I had was the effect of the drugs on halting the production of red and white blood cells. Basically, I was suffering with the effects of anaemia: tiredness, fatigue, loss of energy, shortness of breath, headaches, difficulty concentrating, dizziness etc.  I'd started the treatment in an anaemic state and slid progressively week by week towards severe anaemia.  It was the anaemia that was making the treatment seem so tough and washing me out.  Thankfully, Sarah twisted my arm to call the hospital and see if I could get a blood transfusion to rectify the situation.  I was asked to come in the next day, the Wednesday of my week off, for blood tests and ended up having a blood transfusion and receiving two units of blood (see link below).

What a difference the transfusion made, I went from not being able to concentrate, sleeping for most of the day and feeling totally knackered to being full of energy.  The following day (Thursday) I was in the garden mowing the lawn, Friday I even went for a short bike ride.  Since then I have felt much more like normal, although I'm still deemed as anaemic due to my haemoglobin levels being below the minimum.  Hopefully, we can manage the levels more carefully now so I can deal with the effects of the chemo drugs.

Its not been all anaemia and chemo grind, we managed to get a lovely couple of days down in Devon during half term visiting Sarah's dad and wife and their crazy ten month old black lab called Figgy.  A few more days would have been nice but chemo round two was calling.  Back to the grind, last Wednesday was the first of the three hospital visits in the second cycle.  The drugs still wipe me out for days but I'm not feeling as tired now and can at least concentrate and do a few minor chores.  I did push myself a bit too far the other day foolishly ignoring the fact my abs are still recovering from major surgery I tried to do a small bit of painting.  My abs disagreed with the effort and I suffered the consequences, lots of pain and bent double for two days. Note to self, 'you're still recovering dummy'.

So there you go, a brief round up of where I'm at right now.  Sarah and the girls have been so supportive and are still helping me through all the tough times which I'm continually grateful for.  I've had a couple of dark weeks which are now behind me, but thanks to some altruistic donors of blood I've recovered from the anaemia and hit round two feeling okay. I'm now going through the grind of taking the drugs, feeling crappy and looking forward to my next week off.  Every day is a day closer to completing the chemo course and getting back to normality.

A younger Figgy - Guaranteed to put a smile on your face.

If you're feeling altruistic why not give blood? The best donation you can make.

https://www.blood.co.uk/

Tough going.

I've now been for two rounds of chemo treatment (intravenous) and am working my way through the 168 tablets to consume during this cycle.  I counted how many pills I take in a day, 17 in total.  Over the course of the treatment that adds up to 2,208 tablets all in.  Shake me and I'll rattle!  Anyway, how is it going? In a word, tough.  In terms of side effects I'm doing alright at the moment only having to deal with the common ones, nothing too horrendous. The scary bit was the drop in the levels of white blood cells and haemoglobin, both now rock bottom in just a week!

What does that mean in real terms? Apparently, I will have little immune defence and anaemia. The latter causing me to get out of breath easily and constantly feel tired. Walking up the stairs now tires me out. Stannah stairlift here we come! If we can't get one of those it'll have to be a Sarah stairlift :) The drugs themselves wipe me out for days, let alone the added effect of being anaemic. There are adjustments in plan for the dosages and also injections to help with the white blood cell level and a blood transfusion to bring the haemoglobin level back up.

The frustrating thing is there is nothing that I can do to change the situation, the drugs are working as they should, which involves stopping production of while and red blood cells.  I do know that this is the collateral damage caused in targeting cancer cells.   It does seem to have hit me early though.

So, that's me, the first couple of treatments have 'kicked my ass'.  I thought I'd fare better to be honest. I'm feeling wiped out but positive that I'm on the right track.  As I've said to many people, 'it's a grind' and that's just what it is.  On the plus side my beard and guitar playing are coming on!



P.S.
As I've previously said I'm not looking for sympathy. Yes, it's shit but it could be a lot worse. I'm telling it how it is.  One day and pill at a time, I'm getting there 😉

Chemotherapy starts tomorrow!

It's been two weeks since my last blog and also when Sarah and I met with the oncologist.  It seems longer than that though, time seems to have gone slowly.  My recovery is still going well, I'm making great progress and feeling stronger day by day.  I now feel strong enough for what's to come next.

Round 2, ding, ding...Chemotherapy starts tomorrow at 9 am. Firstly, I will have blood tests to check if my white blood cell count is sufficient to start the treatment. They will also be checking for cancer markers to see if there are any traces in my blood.  If the results are okay then a batch of my intravenous Chemo drug will be made up, which should take around 30-45 minutes to administer.  I've been told, as its my first time, it should take most of the day. I'll be monitored closely to check my reaction to the drug and any potential side effects. The drugs used in my treatment are a combination called GemCap: Gemcitabine (intravenous) and Capecitabine (oral/tablets).  I did touch on the side effects briefly on my previous post, I hadn't been given the complete list by then, I have now and there is rather a lot.  In fact the list is eye watering (which is one of the side effects).  The list I was given from the MacMillan website wasn't overly helpful, more scary than helpful. I had to dig around to filter out what was a common, occasional and rare side effect.  Here are few of them:

Infection risk, bruising and bleeding, anaemia, mouth ulcers, loss of appetite, nausea, vomiting, tiredness, weakness, diarrhoea, constipation, stomach pains, bladder irritation, swollen legs and ankles, liver and kidney function issues, hair loss (I'm certainly not worried about this one), skin rashes, soreness and redness of hands and feet, flu-like symptoms, headaches, eye problems, effect on heart beat and function, effect on how lungs function, hearing problems, effects on the nervous system, blood clot risk, effect on fertility (I'm not worried about this either) 

I'm hoping to stick with the common side effects as they sound bad enough.  We'll have to wait and see how it will hit me.  However, as some good school friends pointed out the lists of potential side effects of Paracetamol and Ibuprofen are long and scary and we don't worry about them! 

Oh! I nearly forgot I've now worked out what caused my cancer....burnt toast and well done chips.  Thanks to the well researched study with conclusive evidence, delivered to us by meticulous journalists I now know where this all started. 

Tomorrow will be the first of 6 cycles, each cycle will be 4 weeks, three weeks treatment and one week rest, then start again. The last treatment will be Wednesday, June 28th. 
Fingers crossed it does the trick, I'll post on my experience and reactions to the drugs and maybe rant a little more as I've got time on my hands :-)



And finally thanks go to: Mr Steve Woollett, Mark Bedford and Peter Duce for advice and guidance on dealing with chemotherapy. 
   

One Hundred and Forty!

One hundred and forty stitches! That's how many Mr Hilal calculated my Whipple procedure needed, give or take one or two.  In surgical procedures they count the number of needles rather than the number of stitches. That makes sense when you think they need to count the needles used and then the same number at the end of the procedure so nothing was left behind.  I had 79 needles, some will have done as little as a single stitch, others several, and the big count will have been for sewing up my abdomen.  I have to say Mr Hilal has done a great job in sewing up my belly, it looks very neat indeed!

So, what happened with the sweepstake and who is the closest?  Well, the great news is we've managed to raise around £1,500 thanks to all your generous donations.  Hopefully, I can get this match funded by Microsoft to make it £3,000.  As for the results we had ten people that guessed over a hundred, the top five contenders shown below.  The winner being the cloud platform legend who is Jeff Johnson!  Well done Jeff.

1. Jeff Johnson guessing      150 (10 stitches out)
2. Pete Edmonds guessing   128 (12 stitches out)
3. Steve Domeney guessing  120 (20 stitches out)
4. Jayne Hurrell  guessing   117 (23 stitches out)
5. Justin Couzens guessing  168 (28 stitches out)

I haven't worked out the prize yet, that's still work in progress.  I'm thinking maybe a track driving experience, something I can join in too :-)  I'll keep you posted on what I can get sorted, I'll need to play the charity card on this one.

It's now been four weeks since the operation and I'm still making good progress, very good progress I'm told.  I'm drain free and have no tubes coming out of my belly. Hooray! The final one was removed last Wednesday which was a blessed relief not having a bag stuck to my side capturing a tea coloured fluid from my pancreas.  I have to say it did play with my mind a little, I've only just been able to stomach drinking normal tea again!  Food consumption is going well, I'm eating a good healthy balanced diet including steak and chips with a glass of red wine.  An essential meal to help with the anaemia!  I'm actually gaining a bit of weight rather than losing more which is pleasing.  I'm trying to consume as much top quality protein to help speed up the recovery process even more, and it seems to be working.  My sleep has been a disturbed by the pain and discomfort and not being able to sleep on my sides.  However, last night was the first night of reasonable sleep I've had in months, only getting up once at 3am.   My exercise is ramping up, as well as longer walks I'm doing some light dumbbell work, squats with dumbbells and 3 x 20 press-ups.  All manageable, light on the stomach muscles and beneficial to my state of mind.  It makes me feel so much better doing something than sitting on my fast disappearing arse.  So, overall I'm positive about my recovery but anxious about the next step.

Sarah and I met with the Oncologist, Dr Timothy Iveson, yesterday to find out what my next step is.  We spent some time going through the histology results and why chemotherapy is needed to help remove the risk of a reoccurrence of cancer, potentially liver or lung cancer.  Due to the results of 3 out of 7 of my lymph nodes that were removed contained cancerous cells there is no certainty that the surgical procedure has been curative.  There is also no guarantee that chemotherapy will kill off all/any of the cancerous cells but we were told it does have a 10-20% success rate.  I'll take those odds and stack them on my side.  The treatment will involve two drugs proven to be more effective when used together, administered over 6 cycles.  Each cycle will be 4 weeks, three weeks treatment and one week rest, then start again.  There could be side effects which range from being constantly tired to having flu like symptoms and mouth, hand and foot ulcers.  I don't want to think how bad I'd feel if I get all of those!  Some people fare better than others, let's hope I'm one of the ones that fare better. 

I'm now getting myself mentally prepared for the start of the chemotherapy treatment. One thing that did throw me was Dr Iveson wanting to start the treatment in two weeks time due to my speedy recovery from the Whipple procedure, typically 4 weeks sooner than most!  The sooner I start the sooner I finish I suppose.  I'm staying positive but I do think that there has to be a load of luck on your side when dealing with cancer.  So, here goes into the next step with a positive approach and my fingers tightly crossed.


Picture: This Sunday (8th Jan) a foggy walk on the coast at Hill Head, Solent. 

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.