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