This is a guest article written by Milinks, who had previously written the long and in-depth review of Oolite that was published on PandoraLive, and made it to the first page of Hacker News at the time, too. I have come to know that he is fighting with a severe cancer, and while we exchanged a few PMs once in a while i was humbled by his condition. I offered him to share his experience here, as the Pandora was still playing an important role in his life despite the hardships. So, this is story of one of us, fighting against cancer.
[ The following is a guest post by Milinks from the Open Pandora boards ]
Hopefully by writing this, i can explain my thoughts as a person suffering from cancer, but also in the hope that explaining how my illness progressed unchecked for so long, i could help someone to see a sign or symptom before things become too late.
I’d always been a fit youth, working on a farm from the age of 12 years, progressing to the Army at 16, where my fitness increased immeasurably, to such a standard that I was involved in the Army athletics team in the 100m and 400m teams. As a child I’d broken bones, and had silly mishaps, smashing the bones in my foot by dropping a caravan hook onto it, It was not one of my finest moments, but I’d never been a sickly youngster with colds or the like.
Upon leaving the Army at 21, I had a grand plan of joining the Police Force, a dream i had since i was 7 when my father came home from his work with a recruiting booklet. I was successful in my application first time around for the Police, but unfortunately the 1990/91 Gulf War began, and as I was already in Saudi Arabia, i was given a choice of either going home before the air war started, or staying for the duration. A simple choice i thought, and my initial reaction was to “pack my bags”. However having spent 3 months in the desert with my comrades in arms, I could not turn my back on them, so, with the good fortune of living through the conflict, I returned home, only to find that I had to reapply for the Police as I had “shunned their offer”.
Putting my electrical Engineering trade that I learnt in the Army to use during the 6 months it took to reapply, I was overjoyed when in January 1992, I was enrolled into the Police, fully immersing myself into what I believed would be an amazing 30 year career, with the idyllic notion of upon retirement, settling with the loved one, whom I was not lucky enough to meet at that stage, and living in Spain in a little cottage.
I loved my career, specialising in certain fields, which gave me much fulfilment, and made me feel that i was actually helping people.
Through a quirk of fate, I decided to come back to “street policing”, in uniform, and 3 months later, was involved in an accident, shearing my spine. I had a lot of things to focus on during the two years ahead, involving fighting to regain fitness to keep my job, and the dreams I had, but also a divorce as my condition wasn’t something my then wife could cope with. However the most crushing factor throughout was my mother was diagnosed with lung cancer. Almost 20 years before I thought I had lost my mother, when at a restaurant she ate eggs that were rotten, causing salmonella poisoning. Watching a priest standing over her reading last rites was a memory imprinted upon me. By the grace of God my mother recovered, however unknown to any of us, that illness had sealed my mother’s fate. Those 20 years later when my mother was diagnosed with cancer, it was found that a particular scarring caused by salmonella, was where the cancer began, and ate away at my mother’s body, but her soul and fight remained to the last.
The next few years was spent rehabilitating learning to walk, and cope with spinal injuries, meeting my wife during this time, brought all the happiness to my life I could wish for. Having saved up for many months, I was fortunate enough to own a Pandora Console shortly after release, and Having owned a GP2x console before, this to me, was the mother of all portable computing and gaming devices. Not knowing a great deal about programming it was so refreshing to become part of a forum that was open and welcoming to those less knowledgeable than others, my enthusiasm for gaming was, as always unbridled and ever growing. Since I was 15, spending hours on games such as Elite, the Space trading game, and Lords of Midnight on my ZX Spectrum, the retro gaming scene has been a big interest of mine, and to the detriment of many a happy family, spent too long playing on the Pandora, and reading the new ideas and updates of the ever growing Pandora forum.
In early 2013, after a gaming hiatus, I received my Pandora back after having the dreaded purple screen fault fixed, and again started to immerse myself in the new programs and applications of the Pandora. I noticed that I was becoming very tired, and losing my appetite in early 2013, believing I was under the weather, and the strains of my spinal injury and the medications needed to keep the pain at bay, I ignored it to a large degree. I used to spend a few hours in the evenings playing the Pandora whilst my wife watched the “soaps”, but after a short time found that my concentration was faltering, my eyesight became worse, and thinking I was concentrating too much on a small screen obtained glasses thinking it would help. My lethargy increased, and I began to feel more unwell.
What I now know to by my lymph nodes in the sides of my neck began to swell, initially I thought it was a cold, however more and more symptoms began to emerge. I had always had problems with trapped nerves and nerve pain since my spinal injury, but I began to feel nerve pain increasingly in my legs and arms and hands. At the time I put it down to my existing injury and did not connect to anything. My wife however, annoyed that I was now spending hours during the day sleeping contacted my Doctor and forced me to be examined.
For the next 6 months I was subject to continuing blood checks, which seemed to indicate diabetes and severe anemia. My own condition deteriorated, with nerve pain (which I now know to be neuropathic pains, which is a symptom of Hodgkins Lymphoma) continuing, sleepless nights, and severe shaking and extreme sweats at night. My wife and I used to laugh, that when, during the night I would come downstairs unable to sleep, that trying to make a coffee my hands would shake so much I was unable to put coffee in a cup.
My enthusiasm for gaming, or for anything in general was very low, it was all I could do to muster enough energy to focus on conversations. My throat continued to feel swollen, my armpits hurt, which I put down again to being run down, and lethargic. On a certain day my Doctor phoned my wife informing me that due to blood results I was to be admitted to hospital the following day, whereupon an ambulance would take me from my home for a “check” at my local hospital. No further information was given, just “anomalies” in the blood. In another quirk of fate, during that night, my symptoms became much worse, and I cannot remember anything from that point for some weeks ahead, as due to what I was later informed, I had a quarter of the blood necessary to keep my body working, and I suffered organ failure which caused brain damage. This resulted in loss of memory.
The one “flashback” moment I have of this time, was the absolute pain of Doctors performing a biopsy on my pancreas, the pain of this was like nothing I have ever felt. The loss of memory was for me, most probably a fortunate thing, as over the next few weeks, it transpired that all the symptoms that I had, although similar to diabetes, were in fact those of a form of cancer called Hodgkins Lymphoma, which is a blood cancer, attacking the organs of the body travelling through the blood to the lymph nodes throughout the body. The Lymph nodes help to maintain the immune system throughout the body and are vital to the wellbeing of all of us. My wife visited me every day, introducing herself to her husband each day, and for weeks, receiving only blank looks, and the pain of having her husband “relearn” that he was married. I am forever humbled by the strength that this must have taken, and the pain and anguish it caused.
The following weeks in hospital were a series of monotony and tedium, with the same four walls, the same tests, the same bad news, being told the cancer was advanced, and then more advanced. Due to the weakness of my body I wasn’t able to begin any treatment, as my organs weren’t strong enough to cope, so I had to begin a series of treatments to allow e to be considered for any treatment. I came to the conclusion that whenever there was bad news to be delivered a possy of Doctors and clinicians would be present, any good news was given by only one or two. I had this idea that they were all stood outside discussing amongst themselves “who wants to see if we can make someone cry with bad news”, with replies of “yeah, I’ll come along”. The mind plays amazing tricks during such times. My wife, bless her visited me in Hospital every single day during my stays in hospital, the months that each day, holding down a job and home, that she would visit me, taking my mind of what became my daily life.
One day my wife brought my Pandora console for me to play, to take my mind off things. In Hospital, there really is not that much to take your mind off things, a TV room, which always plays something you don’t want to watch, and the other three people in your room, who were going through their own heartaches and problems. During the months in hospital I have got to know many different families, living with them their own grief and problems, almost becoming an extended member of their family. And in the worst moments, seeing people succumb to their illness, and living the heartache with their family.
For about a week, I could not bring myself to pick up the Pandora, it may sound silly, but for that time I felt that I had this most serious of issues to face, and to distract my thoughts from that by picking up a gaming console, was insulting to my illness, as though I wasn’t taking things seriously. An avid reader before, I stopped reading, the fear that I would not get to the end of a book or certain series of books, praying at night that I would be given time to finish the set of books I had started. I had to make each moment count. I could not sleep during the night as the neuropathic pains were so severe I cried in pain, but silly things such as making my hospital bed by 5am, my day NEEDING a routine, but still for a time i could not pick up the Pandora, for fear of not taking each day seriously, or using each hour wisely.
Then one day, a day that I’d not received any bad news, and was feeling better than normal, I switched on my Pandora, going through the applications, and then starting to play a few brief games. Due to my interest in retro games and the 80’s I played the playstation and ZX Spectrum emulators. I’d always been an avid follower on the forums, amazed at the knowledge and enthusiasm of others. I used to follow with interest the posts of PtitSeb, Notaz, Commander Beef amongst others. During a conversation about one of my favourite games, Oolite, it was ported by PtitSeb, which for me was a seminal game, based on the massive hit game Elite. I wanted to “do my bit” to encourage others to try the game, to see how immersive it was. Before I knew it, I was waiting upon my evening medications, so that I had time free to indulge in Space Trading.
When spending weeks and months in Hospital, after a while the fellow patients around you become friends, their families also become friends. During afternoon and evening visiting, if Judy my wife wasn’t present for one or the other visit, the family of fellow patients would come and chat, and after a while it becomes almost a “gathering” rather than visits to individual patients. One patient, Brian who was in his late 70’s first came to my bay as a cantancerous old man, but swiftly became a wise man with a very dry sense of humour. He was devastated at being separated from his wife, who is a wonderful lady, and visited him daily. Unfortunately Brian missed her so much that he his will to fight was eroded, he gave up eating, and withdrew into himself. He became so poorly that he could no longer eat to have the strength to fight the disease or have any treatment. The comradery of the ward was such that I used to sit and have my meals with him, encouraging him to eat and fight. He was in awe of this little machine that I had begun to play with. he said he used to watch his grandchildren playing games, and it as almost a test that when his family visited he would get me to play a game his grandchildren had mentioned.
He saw the Pandora as this endless stream of games that could just appear. His entertainment used to come from watching the faces I pulled whilst trying to achieve a score or something. Due to being in hospital for so long, the staff would ask me if I would move bays, or move into a single room to accommodate an incoming patient, which of course I did. Anything to help. However Brian was not happy on one occasion when I was moved to another room, nor were his family. They complained that he was no longer eating as he was unhappy at his “friend” being moved. To my amazement I was moved back to be with Brian, as they called me his personal “nurse”. I was very humbled by the friendship i made, and it is my eternal sadness when Brian lost his fight and passed away. Hospital can play weird things with your emotions, which are constantly fraught. But for this “argumentative old man” to find friendship in me, and enjoy moments whilst I sat with him playing Oolite will stay with me always.
At first, I started playing Oolite as I hadn’t played the PC version for a while, and wanted and wanted to be able to give an accurate view on the port by PtitSeb. However before I realised, I wasn’t just playing to get a feel for the game, but I was setting myself goals, to become one level higher as a combateer, or just to see how a certain trading route would succeed.
Where beforehand, I was focusing on things that were out of my control, such as my health, worrying about things such as “why didn’t I get that extra life insurance”, or how my family were coping (my father had two heart attacks when told of the news that his son now had advanced cancer. Now for some obscure reason I was smiling at taking a few moments from reality, and being selfish in my own enjoyment. Those fellow patients in my bay, generally being a lot older than myself at 44, were either confused, mesmerised, or both, at this small handheld console that seemed to be able to do all things. I had a few enquiries from bored relatives of patients (generally the younger ones) asking why they hadn’t seen it in the shops, and where they could get one.
My eyesight was very poor at that time, so playing such a dark game was very difficult, my hand co-ordination was becoming worse, but I found that I enjoyed participating in the Pandora forum just as much as playing the games when I could. Soon I found myself rather than dreading the lengths of each day, wondering how to fill the monotony, and battling with the guilt of not “enjoying myself” when I was in such a serious condition, but actually looking forward to playing games. It became an escape that was like a diary, the Pandora was something that was so small I could put it in my pocket and go downstairs, grab a coffee in the canteen, and be in my own world.
It didn’t matter that during the time i played on the Pandora, if I was at home, or if I was in my hospital bedspace, or downstairs in the canteen, I was in “my world”. It gave me a goal, to attain something more each day, each time I switched it on. I became to realise that it was not “wasting my time” playing on this game, when my body was battling with such advanced cancer, but more it was an escape that I could feel good about myself, not just playing the game, but by contributing to the forum, I felt as though I could be “that” person, that normal person who wasn’t looked at in the hospital lift with pity when I got off on the cancer floor, but I could just be another guy giving his opinion, not judged, or at least not judged as being different.
One of my major concerns during this time, was the effect that the cancer was having upon my brain, and my memory. I had undergone many tests to see what damage had been done to my brain, and was very fortunate to find that the cancer hadn’t passed to my brain, and that any damage was due to the organ failure during my initial collapse. There were whole areas of my life of which I no longer had any recollection of, and having been previously good at grammar and words, was finding it increasingly difficult to express myself how I would have done previously. I needed to “train” my brain again, relearn how I used to speak, the words I used to describe things. As if manna from heaven, I was given an opportunity to stretch my brain and relearn words when an opportunity arose to write a “how to” for the game Oolite.
This opportunity helped me in a number of ways. Being in hospital for a long period of time is itself a soul destroying experience, the monotony of regime difficult to come to terms with, when every coffee is at a specific time, each hour regimented and organised. Feeling as though you are like a schoolboy breaking the rules if you aren’t by your bedside at given times for tests. its difficult sometimes to come to terms with being not so much told what to do, but spoken to as a child, not a person who has life experience, watching those older patients around you being treated almost as though they are infirm, not just ill. The opportunity to immerse myself into a “project”, a write-up for Oolite gave me a focus, something to escape from the stifling regime of the ward, also helping me to relearn words, and pushing my brain to think rather than stagnate. It also gave me a sense of achievement, something that I could feel that I had been successful.
During the few months I originally spent in Hospital, I was discharged on two occasions (only to be back in within 48 hours each time, as my body was so weak, my immune system couldn’t cope without help). On one of those occasions, whilst I was researching the write-up for Oolite, I came to the decision that I couldn’t cope any longer with the Chemotherapy treatment that I was now undertaking, and wished to stop the treatment and have a small amount of quality life, rather than the hell of the Chemotherapy I was having, that was putting my family through so much pain watching me. When originally diagnosed with cancer, there are any number of ways to approach the treatment process, each one defined by again a number of issues, such as severity of the disease, and the strength of the person. My consultants and Doctors were brilliant, I can remember one Friday afternoon after they had all had a long meeting about patients, that during the ward round my Doctor told me how the cancer had spread.
I had what is called a PET scan, basically a 3D scan of the body where dye is injected into the blood, and latches onto the cancerous cells. This gives a 3D picture of the progress of the disease, and goes like a traffic light procedure, with green being good, and red, well reds not so good. In the world of cancer, Hodgkins Lymphoma can either be a really good one to have, or a really crap one to have. The options of your treatment are governed by the progress of the cancer through the Lymph nodes in the body and related organs. I was given one option, which was a very strong course of ABVD Chemotherapy. I had always asked my Doctors to be 100% up front with me, as I’m an information junkie, and believe knowledge can’t hurt, even if that knowledge is bad news. Whenever I used to go for a scan or put on certain medications, Google was my best friend. I would never advocate anyone to research illnesses by the web, as you will do more damage than good. However knowing how specific treatments and operations would work helped me understand better, so that I could properly inform my wife of what was happening. I can remember being stood in front of my Consultant on this Friday, after he’d told me my condition had worsened, telling him to “bring it on!” with any treatment he could give, saying to him I would put up with anything to be given a chance to live.
Those words came back to haunt me when on the second occasion I was at home for about a day, the absolute total pain of Chemotherapy is not easily described. How it affects the entire body, you want to sleep but can’t, want to eat, but can’t, want to be awake and alert but never are. I am so humbled by those young and old who are inflicted with this condition, as being in the “prime-ish” of my life, It must be soooo much worse being either young or old to deal with. So, anyway, on this day I decided I couldn’t see a future, all the news I was receiving from my Doctors was bad news, I was merely existing, watching my wife trying to be strong for me tore me apart. I just felt as if I could have just a few weeks, without the Chemotherapy drugs running through my body, a few weeks where we could be US. All I wanted was to make a few more happy memories for my wife to have before I went. I put my views to my wife, and her response was a huge reality check. I was called a selfish bas**rd! and everything in between. I realised that I was taking the easy way out, that coming off the treatment would not be the “honeymoon period” I was hoping for, and that I would deteriorate more quickly than I would hope. I knew that I would never get those wonderful moments that I sought, and the only way to achieve that would be to fight on.
I’d already posted on the forum that I didn’t think I would be able to continue with the Oolite write-up, and in a way I was hoping someone would take it up. Maybe in a good way, but no-one put their names forward, and in reality I was glad, as it was a goal that I could focus upon, and try and achieve. Life becomes surreal when you begin to measure it in terms of completing an essay, or finishing a book. Maybe it was a childish way of looking at things, but I actually started to become enthusiastic about completing this write-up, thinking if I could complete it then I’d achieved something. it was hardly a great legacy to leave behind, not something you would normally think was to be of such importance. However, it wasn’t exactly the content of the project that was important, it was more that I’d set myself a goal and wanted to achieve it. It may sound ridiculous to say that a gaming machine put my life in perspective, but in a way, its just what it did. I’ve always been of the belief that to do a job was to do a job to the best of one’s ability, and even the few comments on the forum from those interested in reading a possible write-up for the Oolite game gave me the “excuse” to convince myself I would complete it. From then on my goal was the completion of a document, because if I finished that, when beforehand I never thought I would, then it was “a” goal achieved, which meant I could then set myself other goals, such as finishing the book I was reading, Which I did.
From then, My perspective about my things changed. I became more positive, I’d always lived the belief of “pass it on”, if you can help others then do so, because it will come back round to yourself in this life or the next. I began to not only set myself small goals, but also to live more in myself. I could sit for an hour worrying about what was happening in my body, or I could take that same hour and play a game, or browse the forum, putting my input in whenever I felt. A forum is like a group of people together who bump into one another, say “hi, how are you? what’s your thoughts on…” and then you move on. almost like bumping into a friend in a café and moving on. I felt as though the hour I spent interacting with the forum, or having fun playing the Pandora was so much more important than an hour wasted on worry, worrying about something that I could not change, or at least not in such a way. I believe in the human spirit, not so much the ghosts’n ghoulies, more in that if you are feeling good, then you will be better, if you’re depressed, it will affect the fight in you, that’s when people give up, and spending months on a cancer ward, you see that many times, and it is heartbreaking.
I’ve recently been discharged again from hospital, and hoping that i can make more than a few days “on the outside” before anything happens. I do not know what the future brings, I don’t know what each day will bring. I know the pain I feel, But I also know that my pain is nothing compared to that of the loved ones of a cancer sufferer. In hospital I have been given three meals a day, people to answer my questions, my friends on the ward to talk to who understand how I feel. My wife, my family are the one’s that really suffer, that don’t have the support I’ve had, I’ve had it easy, it’s my wife who humbles me every single day.
I look now at the Pandora console, not just as a piece of plastic that sits on my chair arm that I pick up and have a moments fun with. It’s a collective, a reason or excuse if you will, it comes complete with a family of people, who are there at the press of a switch, to bring you back down to earth or boost your ego, whichever way you look at the Pandora, it’s more than wires and buttons, it gave me a reason to be here writing this. I wish to thank everyone for their kind words and thoughts, and as I’ve said before I sincerely hope that I am here in the future to return that kindness.
If by reading this there is one thing I would hope that can be remembered, and that is listen to your body. My symptoms started with aching and soreness in my throat, and my armpits, weight loss, with blood readings akin to diabetes. At night i suffered shivering, and severe sweats. Along with nerve pains, and numbness in my hands and feet, these symptoms continued for about 6 months before blood tests finally identified cancer. I would recommend all to monitor their body, don’t try be heroes or martyrs thinking its just the flu, or you’re run down. If you have any of these symptoms, and they continue for a number of weeks, do the right thing, go to your Doctor, and ask for a blood test. Don’t be satisfied with the first answer if you’re not happy, ask again. Most important, listen to your loved ones, they know you best, if they say something is wrong…LISTEN.
[ Afterword, by Ekianjo: Cancer Therapy is expensive, and even though Milinks did not mention the financial aspects, they can be devastating as much as the bad news for the family of the victim. You can help him by sending a paypal donation, as indicated in this post. Some of us have already done so, and I would encourage you to give as well, if you can afford it. And anyway, don’t hesitate to comment on this story or send a PM to Milinks directly on the boards, I’m sure he will appreciate it. Many thanks to All of you.]