My cancer story – thus far

This is a somewhat different post to my usual technical ones…

In December 2017 I had major surgery. This was to remove an adrenal cortical carcinoma (ACC) that had grown on one of my adrenal glands and then up my inferior vena cava (IVC) into my heart.

Early on I decided, though not hiding the fact I was ill, to not live every detail on social media. So, it is only now that I am back to a reasonable level of health and with some distance that I feel I can write about my experiences. I hope they might give people some hope that there can be a good outcome when there is a cancer diagnosis.

I had known I was ill for a good while before I was diagnosed in May 2017. I had seen my Parkrun times slowing week on week to the point where I could not run at all, and I had also had a couple of failed blood donations due to low haemoglobin levels.

It was clear I was unwell, and getting worse, but there was no obvious root cause. All sorts of things had been considered from heart to thyroid. Cancer was suspected, but a tumour could not be found. Try as they might, my GP had failed to find a test that showed anything other than my blood numbers were not right. I was just continuing to get weaker, by that spring I was unable to walk more than a few hundred meters without getting out of breath with my heart beating at well over 170 BPM.

The problem was that ACC is a rare form of cancer and mine had presented in a hard to find way. There are two basic forms of ACC. One shuts down your adrenal system, and you notice this very quickly. The other form shows no symptoms until the tumour starts to physically impact something. This was the form I had. In my case, the tumour was increasingly blocking blood flow in my IVC and heart.

In the end, the tumour was found because of a lower abdominal ultrasound. By the time I had the ultrasound scan it was about the only diagnostic that had not been tried. It was a strange mixture of shock and relief to be immediately told after the scan by the sonographer that ‘the doctor would like a word before you go home’. So, at least I knew the cause of why I felt so ill. I left the hospital that day with a diagnosis of an adrenal tumour that was most likely benign but may be malignant, on blood thinning injections and with a whole set of appointments to find out just how bad it was.

At this point the NHS did what it does best, react to a crisis. Over the next couple of weeks, I seemed to live at the regional cancer centre at St James Hospital in Leeds having all sorts of tests.

My health, and the time I was spending at the hospital, meant there was no way I could continue to work. I was lucky I was able to transition quickly onto long term sick in such a way that meant I did not have the financial worries many cancer patients have to contend with on top of their illness. I would not be seeing work again for over 9 months.

The next phase of diagnostic tests were wide ranging. Plenty of blood was taken, I had to collect my urine for 48 hours, there were CT scans and PET Scans, all to get a clearer idea of how bad it was. The real clincher test as to whether the tumour was benign or malignant was a biopsy. One of those strangely pain free tests, due to the local anaesthetics, but accompanied by much poking, pushing and strange crunching noises. Then a 6 hour wait flat on my back on a recovery ward before I could sit up, let alone go home.

It was whilst laying down post-test I had probably my best meal on the NHS. Having just missed the lunch service on the recovery ward, a good move from past experience, a nurse produced a huge pile of toast and jam. A perfect meal for the reclined patient.

It was also during this post test recovery time that I first met other cancer patients and had a chance to have a proper chat with them. No matter how bad your case seems to be you always seem to be meeting people with a worse prognosis. Whilst on the biopsy recovery ward I met a man who told me his story. A check-up because he did not feel well led to the discovery of a large brain tumour which then spread throughout his body. He knew he only had a short time left. The conversation opened my eyes to the reality of my and other patients’ situations.

A couple of weeks later we got the bad news that the cancer was malignant and very advanced. We had clung onto the hope it was benign. The news was delivered in a very matter of fact way, that I probably would not see Christmas unless a treatment plan could be found, and the options were not good. There were tears.

However, there was at least some good news, the tumour was a single mass, it had not spread around my body. The problem was that there was no obvious surgical option due to its size and position. All that could be done was to start chemotherapy to see if the tumour could be shrunk. So, a very ‘old school’, and hence harsh, three cycle course of chemotherapy was started in July 2017.

I dealt with all of this in a very step by step way. People seemed surprised by this, that I was not more emotionally in pieces. I assume that is just my nature. I think this whole phase of my illness was much harder on my partner and family. They had to watch me getting more ill with no obvious route to recovery. For me it was just a case of get up and doing whatever the tasks were for the day. Whether they be tests, treatments or putting things in place like a Lasting Power of Attorney.

Life became a cycle of three-day eight-hour blocks of chemotherapy, then a month to try to recover. On each cycle I recovered less than the previous one.

The chemotherapy ward is strangely like flying business class. The seats look comfortable, but after eight hours they are not. You can’t go to the toilet without issues, on an airplane it is getting out of the row, on the chemotherapy ward it is taking the drip with you. In both cases, the toilet is too small. You feel tired all the time, just like jet lag, and of course, the food is questionable at best.

As I had seen on other wards, there was a strong camaraderie on the chemotherapy ward. Everyone is going through life changing treatment. Some people looked very ill, others as if there is nothing obviously wrong with them, but irrespective of their condition I found the patients, as well as the staff, very supportive. It was far from an unhappy place. Not something I had expected.

In many ways the worst side effect of chemotherapy, beyond the expected weight loss, hair loss, nausea and lack of energy was that my attention span disappeared. For the first time in my adult life I stopped reading. I struggled to make it through a single paragraph without forgetting where I was. I remember one afternoon in a hospital waiting room, whilst waiting for yet more test results, trying to read a page in a novel. I never got to the end of the page, just starting it over and over. It was also at this time I realised I had to stop driving, I felt my attention was too poor and my reactions too slow.

As I said, by this point I was very weak. This made most day-to-day activities very hard, but the strange thing was I found I could still swim. I had had the theory that though my IVC was blocked, hence not bringing blood from the lower half of my body, if I swam with a pull-buoy just using my arms, I would be OK. This turned out to be correct, much to the surprise of the medical professionals. So, I started to do some easy swimming in the recovery phases between chemotherapy cycles when I was able. It turned out the biggest issue was I got cold quickly due to my weight loss. So, swim sessions were limited to 15 to 20 minutes and just a few hundred metres.

After the planned three chemotherapy cycles all the tests were rerun and it was found that the tumour seemed unaffected. It was always a very low chance of success. I had already decided I was unlikely to start a 4th cycle as I felt so ill, it was just no life. I did not want any more chemotherapy when the chance of success was so low. Better to have some quality of life before the end.

This is where I got lucky because I was being treated at a major cancer research centre. I had been told there was no adrenal cancer surgical option for the way my ACC had presented. However, the hospital’s renal cancer surgical team had seen something similar and were willing to operate with the support of the cardiac and vascular teams. A veritable who’s who of senior surgeons at St James as I was informed by the nurse when I was being admitted for the operation in December 2017.

My operation meant stopping the heart, removing the tumour along with an adrenal gland, and a kidney (collateral damage as there was nothing wrong with it other than its proximity to the tumour) and then patching me all back together. Over 10 hours on the operating table and a transfusion of a couple of pints of blood.

When you see a very similar version of your operation on the BBC series on cutting edge surgery ‘Edge of Life’ you realise how lucky you are. Just a few years ago or living in another city and the operation would not have been possible.

Given my heart had to be stopped, I was treated as a cardiac patient, and the cardiac department moves you through recovery fast. Most of the people on the ward were having heart bypasses, so I was ‘the interestingly different’ case to many of the staff. I did take longer than the usual 5 days on the ward taken by bypass patients, but I still managed to get out of hospital in 10 days, in time for Christmas. It is surprising how fast you can get over being opened up from the top of your chest to your groin, and how little pain there was.

At this point I was in theory cured, the tumour was removed, blood was flowing again but I was very weak and recovery was going to be a long road. I started with walks of only a few minutes and then the rest of the day resting. The great news was that I could walk again without getting out of breath and my heart rate going through the roof.

So, over the next few months, I gradually regained my health, some weight, some hair and my attention span. I was able to ease back into work part time in the early summer of 2018.
However, the surgery was not the end of my treatment. The surgeons were confident they had got all the tumour they could see. They said it was well defined, so cancerous and normal tissue could be differentiated, but there was always the chance of microscopic cancerous cells remaining. So, I was put on two years of Mitotane tablet-based chemotherapy. This was the treatment with the best evidence base, but that is not saying much. There are not that many research studies into ACC treatment options as it is so rare. My treatment plan was based on a small Italian and German study of 177 people, most of which did not complete the plan, but it did show a statistically significant reduction in the chance of remission after 5 years.

Mitotane stops cell division and I had not realised how hard this would make my recovery and specifically regaining some fitness. I was OK for day to day living, but an activity like running was not possible. I twice started Couch to 5K but had to give up as I could not progress beyond the walking stages.

The mental weight of everything did not catch up with me until a good year or so after surgery, by which time I was back at work and living a ‘normal’ life. Previously people had kept asking ‘how are you doing?’. As I said, I felt they expected me to be in pieces, and I was just going step by step. It is only when the main treatment stopped and life returned to normal that everything that had occurred hit me. A seemingly unrelated fairly small in the scheme of things family incident caused it all to come flooding back and completely stopped me in my tracks.

It was that this time I reached out to the support services of the Macmillan charity and specifically the Robert Ogden Centre at St James for help. This was something I had not done prior to this time, though my partner had used their family support services earlier in my treatment. With their counselling help, I worked my way through my problems and got back to some form of normal.

In the autumn of 2019 I came off Mitotane and once it was out of my system I could at last try to get fit again. So, it was back to Couch to 5K and with a few repeated weeks I was able to run 5K again. I was back running Parkrun in November 2019. It was great to get back to my local Roundhay Parkrun community, though I had been volunteering whenever my health allowed throughout my illness. I was running much slower than before I was ill, but running.

Since then, I have to say Covid lockdown has helped me, giving me a structure to my training. I have certainly got a reasonable level of endurance back, but any speed seems to elude me.

I have always had a fairly high maximum heart rate, over 200 well into my 40s, and before getting cancer it was still in the 190s. Now, post illness, I struggle to reach 160 and my bike and run maximum heart rates are very similar. I have tried to do a maximum heart rate test, it is as if I get to a heart rate around 150-160 for a tempo run, but it barely goes any higher when I sprint. So, I have a question for anyone with experience of training after cancer and heart surgery. Is it expected after stopping the heart that my maximum heart rate should be way lower? Or is the problem my hormone levels are different due to the lack of one of my adrenal glands? Or is it just I am getting older and have just lost muscle mass? I am not sure I will ever know the answer to that one, it is not exactly a question the NHS is set up to answer. All their post-operative guidance is aimed at day-to-day levels of exertion not the elevated levels caused by sports.

But that is a minor gripe, I am reasonably fit again. I have recently completed my first triathlon in 5 years and between lockdowns walked the 268 miles of the Pennine Way with my partner. I am not as fast as I was, but I am 5 years older and have had major heart surgery. Hell, I am alive.

Like all cancer patients, this is not the end of the road for my treatment. I am still on steroids and have annual CT scans, but all the signs seem good that the surgery got the tumour and there is no reason I should not live to a ripe old age.

I would not have got here without the support of my partner and family, and the unbelievable work of the NHS and the support services I have used. I can’t thank you all enough.

Leeds Hospital Charity – the charity of Leeds Teaching Hospitals
Macmillan Cancer Support – support or cancer patients and their families
NHS Blood Transfusion Service – please consider giving blood, without regular donations surgery like mine is not possible.

Where do I put my testing effort?

In the past I have blog on the subject of using advanced unit test mocking tools to ‘mock the unmockable’. It is an interesting question to revisit; how important today are units tests where this form of complex mocking is required?

Of late I have certainly seen a bit of a move towards using more functional style tests; still using unit test frameworks, but relying on APIs as access points with real backend systems such as DBs and WebServices being deployed as test environments.

This practice is made far easier than in the past due to cloud services such as Azure and tools to treat creation of complex environments  as code such as Azure Resource Manager and Azure DevTest Labs. Both myself and my colleague RIk Hepworth have posted widely on  the provisioning of such systems.

However, this type of functional testing is still fairly slow, the environments have to be provisioned from scratch, or spun up from saved images, it all takes time. Hence, there is still the space for fast unit tests, and sometimes, usually due to limitations of legacy codebases that were not designed for testing, there is a need to still ‘mock the un-mockable’.

This is where tools like Typemock Isolator and Microsoft Fakes are still needed. 

It has to be said, both are premium products, you need the top Enterprise SKU of Visual Studio to get Fakes or a Typemock Isolator license for Isolator, but when you have a need them their functionality they are the only option. Whether this be to mock out a product like SharePoint for faster development cycles, or to provide a great base to write unit tests on for a legacy code base prior to refactoring.

As I have said before, for me Typemock Isolator easily has the edge over Microsoft Fakes, the syntax is so much easier to use. Hence, it is great to see the Typemock Isolator being have further extended with updated versions for C++ and now Linux.

So in answer to my own question, testing is a layered process. Where you put your investment is going to be down to your systems needs. It is true, I think we are going to all invest a bit more in functional testing on ‘cheap to build and run’ cloud test labs. But you can’t beat the speed of tools like Typemock for those particularly nasty legacy code bases where it is hard to create a copy of the environment in a modern test lab.

Out with the Band in with the Garmin

I have been using the Microsoft Band (both version Band1 and Band2) since they came out, and been reasonably happy. However, a year or so on my issues with it have remained the same

  • Poor battery life, I can live with charging it each day, but even with GPS Power-saver mode on I can’t go for any exercise over about 4 hours (bit of an issue for longer bike rides)
  • It is not waterproof, so no swimming (and worried doing the washing up)

Also there seem to be some build issues with the robustness of the Band2. I had to get mine replaced due to it not accepting recharging and the forums seems to report people suffering problems with the wrist strap splitting. That said, the warrantee service seems excellent, no complaints there, mine was swapped without any issue in a couple of days

In the end however, I decided it was time to to check out alternatives and picked the Garmin Vivoactive HR; basically the Garmin equivalent to the Band in feature set and price (it is a little more expensive in the UK)

 

image

 

I have to say a couple of weeks in I am very pleased. It fixes those two major issues for me. Most importantly I seem to need charging it only about every 5 days or so, that is with with an hour or two of full activity tracking each day. The specs claim 10 hour+ for full activity tracking on a charge. Also it is waterproof and allows activity tracking for pool based swimming (swim mode is lap based and has no GPS enabled so less use for open water).

That all said there are still issues

  • The Bluetooth link to my Windows Phone 10 is a little temperamental for things like notifications and sync –  a restart usually fixes everything (but hey it fully supports Windows Phone 10 not just Android and iPhone!)
  • Shame they disable heart rate monitor for swimming (signal not reliable enough, unless you pair with a chest strap it seems)
  • Lack of open water swimming tracking (see above – but of you want full multisport tracking look at the Garmin 920XT, their top of the range watch it does it all)

But I think these are all minor issues for me, and the third party apps store for the device help such as adding triathlon support which attempts HR monitoring for swimming, without needing to upgrade to the 920XT.

So a good alternative to theBand2?

For me yes, it addresses my key issues. Band2 is a good fitness tracker with unique styling, but if swimming or longer activities are your thing I think the Garmin Vivoactive HR has it.

Life gets better in Visual Studio Code for PowerShell

I have been using Visual Studio Code for PowerShell development, but got a bit behind on reading release notes. Today I just realised I can make my Integrated Terminal a Code a PowerShell instance.

In File > Preferences > user Settings (settings.json) enter the following

 

// Place your settings in this file to overwrite the default settings
{
     // The path of the shell that the terminal uses on Windows.
    "terminal.integrated.shell.windows": "C:\\windows\\system32\\WindowsPowerShell\\v1.0\\powershell.exe"
}

Now my terminal is a PowerShell instance, and you can see it has loaded by profile so POSH Git is work as well

 

image

 

So I think we have reached the goodbye PowerShell ISE point

Building bridges – getting DevOps working through Devs and IT Pros talking and learning from each other

I was lucky enough to attended and be on a panel at yesterdays WinOps London conference, it was a different and very interesting view on DevOps for me. I spend most of my time consulting with test and development teams, with these teams it is very rare to come across a team not using source control and they commonly have some form of automated build too. This means any DevOps discussion usually come from the side of ‘how can I extend my build into deployment…’.

At the conference yesterday, where there seemed to be more IT Pro attendees than developers, this ‘post build’ view of was not the norm. Much of the conference content was focused around the provisioning and configuration of infrastructure, getting the environment ‘ready for deployment of a build’. What surprised me most was how repeatedly speakers stressed the importance of using source control to manage scripts and hence control the version of the environments being provisioning.

So what does this tell us?

The obvious fact to me is that the bifurcation of our industry between Devs and IT Pros  means there is a huge scope for swapping each group’s best practices. What seem ingrained best practice for one role is new and interesting for the other. We can all learn from each other – assuming we communicate.

This goes to the core of DevOps, that it is not a tool but a process based around collaboration.

If you want to find out more about how we see DevOps at Black Marble we are running events and are out and about at user groups. Keep an eye on the Black Marble events site or drop me an email.

First experience of a Band 2

I have been using a Band 2 for a couple of weeks now as opposed to my original Band. The major thing I have noticed is I don’t notice it on my wrist. It feels just like a watch.

The old one, though not too bad did feel a bit lumpy, banging on the wrist. So that is an improvement, also it looks less like I am a prisoner with a tracker on day release. The Band 2 looks like a designer was more involved as opposed to just engineers.

But how does it compare to my issues with the original Band?

  • Is it now waterproof? – No, still can’t swim with it.
  • How about battery life? – Seems a bit better, on a day to day use I am charging it roughly every couple of two days as opposed to each day. I have not tried a long cycle ride yet, so it remains to be seen if I get more than about 5 hours of full data capture. I would expect a bit better, but not a huge gain
  • Does the touch screen work when it is raining or my fingers wet? – Does seem better

So all positive thus far

Is the Microsoft Band any good for Triathlon? Training Yes, racing No

The title says it all, I have been using a Microsoft Band for a few months now and have found it a great tool for running and cycling as long as you are going out for less than about 5 hours. I tried to use for the first time Triathlon race at at the Leeds Triathlon over the weekend.

As it it not water proof it was not an option for the swim (unlike my old Polar HR monitor), so I put it on in T1 (swim to bike), don’t think it wasted too much time! This is where I hit the first issue (or second if you count that it is not waterproof) that my finger was too wet to operate the touch screen. I have seen this issue on runs on rainy days. So I did not manage to switch it to cycle mode, and did not bother to try again whilst cycling after I had dried out – a had other things on my mind like being a in good aero position and get moving faster.

I did however manage to switch to run mode as I ran out of T2 (bike to run) and it worked OK there.

So my wish list

  • Make it water proof, enough for open water swimming
  • Add a way to sequence different activities (swim, bike, run) and have a simple button what works with wet fingers to switch between them – maybe a de project for myself
  • And of course better battery life

So I still think it is a good product, just not 100% perfect for me as yet

Windows Media Center issues again

Today was my day for semi annual Media Center (MCE) problems. As usual they seemed to start with an unexpected power issue, a local power cut, maybe the answer is a UPS for the TV setup? Once the PC was rebooted it had forgotten it had any tuners. If I tried to view live TV or re-setup the TV signal it just hung with a spinning ‘toilet bowl of death’ cursor. Corrupt TV data DB I suspect, I have seen it before

I tried clearing the DB content in C:\programdata\windows\ehome, but no luck. In the end I did the dirty fix of

  • Going into Window features
  • Remove media center
  • Reboot
  • Re-add media center
  • Re-run MCE setup – this took over an hour, it is slow to find Freeview channels

Downside of this is that it has the issue it resets all the series settings, media locations etc. but it does tend to work.

My MCE seems to have been getting slower and generally needed more reboots for a while, strange is it has been on the same dedicated hardware for a few years.  Given Windows 10 is on the horizon and it has no MCE I guess it  is time to revisit an MCE replacement (or leave my MCE box on Windows 8). Last time I looked the issue was PVR support for Freeview and general ‘wife friendly operations’. It does seem that fewer and fewer people are prioritising terrestrial broadcast as media source, it all seems to be about streaming. Just don’t think I am there yet, I like my PVR. But there is no harm is a trawl of the other current offerings, I might be surprised

Updated 9pm  when the setup wizard actually finished – turns out my media library settings were not lost, just series recording settings

After a few days living with a Microsoft Band…

I have worn a Polar s610 heart rate monitor as my watch for years (probably 15+), as I write it needs another battery swap, which means sending it to Polar, something I have done a couple of times in the past for servicing The batteries in the watch last 5 years or so, in the associated heart rate monitor strap maybe a bit more depending on usage.

The point is I am used to having a device that ‘can’ give heart rate information, it seems normal, but I do need to remember to put on the heart rate strap, something I would only usually do for a race or specific training set. Now don’t get me wrong having the s610 does not mean I am a talented athlete, but I do have good idea of my heart rate for any given sporting activity

So this week I got hold of a Microsoft Band, nice timing as my s610 needs that new battery, but how has the Band done?

Microsoft Band in Watch Mode

Whilst in the USA last year I had tried on other people’s Bands and felt them cumbersome, but mine is a small (previously I had only tried on large or mediums). Actually I find it little worse on the wrist than the s610. So tip here – it seems sizing is critical, especially if have spindly little wrists like me. Like compression sport wear, if in doubt err to a smaller size.

Beyond being a watch, I have been using it to track my runs and cycling and the HR seems accurate, at least the numbers are within a few beats of what I would expect on the s610, and it is so much easier than remembering the monitor strap for my Polar. It is great that it gets so much information so easily, and that it  can push it onto other services as I want without me having to play with modem style audio based Polar SonicLink (I did say my s610 is old)

But of course I do have some issues:

  • The obvious one is battery life. I am seeing 6 to 48 hours depending on how much GPS I used. For the first two days it was great, when I used it as a watch, no charging needed. However, yesterday I did a a 5K Parkrun and a 40K bike ride, so after less than 3 hours of GPS, HR and screen on etc. it needed a charge. I can live with this I think, I do need to make sure the screen is off and see how that helps. I don’t want it dying on a half day or so cycle ride.
  • Turns out I glance at my watch a lot – as by default the screen is off I have to press button to see the time – it took me back to the LED watches of the 70s. Again this comes back to battery life. I know I can leave the screen on, but it just needs to much power.
  • When running the splits are in km, it would be nice to have my own trigger e.g laps.  For example on my local Parkrun we do 3 laps, and I know my target splits. On the Polar I have a big red button to press for each lap to get a lap time,  on the Band I have to do maths in my head. Now there might be a way to do this, but I have not found it yet.
  • Finally my major issue is it is not waterproof so can’t wear it to swim, so not useful in a Triathlon as it is as something else to have to put on in T1. Also I do use the time splits in the pool on my S610 when training, again counting laps not KM (I don’t swim that far!). Not sure how they would make it fully waterproof, but it would be a great feature.

So first thoughts, loads better than I expected, all my niggles are minors and are more to do with current battery technology than the device itself. For the price, £169 at Amazon UK for pre-order, an interesting alternative to Garmin or Polar. Certainly got some interest at the 10K race I did this morning.