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.



.

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. 


.

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 😉