Below are the 4 most recent journal entries recorded in Seth-Ra the Everliving's LiveJournal:

Thursday, May 21st, 2009
8:50 pm	Even more Cancer Friday 1st May 2009 The day that all bets were off. Waking up in the morning we were resolved to action. The tumour would be cut out and investigted, then the lab could decide what had been wrong with our little boy. We were in moderately high spirits. This did not happen. Tim (the surgeon) came to see us in the morning with a worried look on his face. The radiographer who had analysed the MRI had re-checked the shots and noticed something new. A number of smaller spots had been spotted on his left kidney. This changed circumstances dramatically. Now, the focus had o be on saving as much of his kidney mass as was possible, precluding the removal of his entire kidney. More information was required. Alex was still to go into surgery, but the tumour would not be removed. Instead, the surgical team would carry out an ultrasound-guided biopsy, removing a small sample of tissue from the tumour for laboratory analysis. The ultrasound would ensure that when the biopsy was caried out, the cystic areas of the tumour could be avoided, eliminating the possibility of rupturing it and spreading potentially cancerous cells throughout Alex's system. At this point roughly half of the tumours volume was fluid, accounting for its rapid growth. In addition, while under anasthetic, Alex's canular which had been installed at Exeter would be replaced with a Hickman line, or more commonly known, a central line, allowing access directly to the major veins deep within his body. Once more, we signed consent forms and Alex went off for surgery. The surgical team took around three hours to carry out what would otherwise have been a quick and easy procedure. The time was taken in setting up with the ultrasound to get the right location. Nevertheless, alex returned safe and sound, and a quiet night was had by all, the youngest member of the family being monged off his tits on morphine. Fair play to him, Tim consistently checked on alex at every opportunity over the next few days. His patient care was far in excess of what we'd expected. The next few days would prove to be a waiting game. We couldn't move forward until the results came back from his biopsy and this was a bank holiday weekend. The labs would be on a skeleton staff for the next three days. Time to wait... Medication Not sure if I've covered this before but Alex has been and will be on a number of drugs. These served a number of purposes. Amylodepine is one that alex was on from the start. It lowers blood pressure, The distress to Alex's kidney hd caused his bloo pressure to rise, The kidneys are the organ which regulates and controlls blood pressure by releasing calcium into the blood stream. Amylodepine lowers blood pressure by acting as a calcium inhibitor (I think). It has a less dramatic effect than Nephedepine, bu build up in the body and has a long-lasting effect. Nephedepine crashes blood pressure. It was given to alex as a quick fix whenever his blood pressure exceeded safe limits. Neither of these would be required after the tumour was gone and the distressed kidney removed or relieved. Alex would also be put on a beta blocker later on, but I forget it's name. Calpol, IV paracetamol, used for relief of his pain and discomfort on a regular basis and to reduce his temperature when high, Coedene, Tramadol, Oramoph, IV mophine, all used to controll alex's pain and discomfort. They were given so often I lost count. Rinitadine, given to protect alex's stomach from the ravages of chemotherapy, Frusemide. Water medication to purge exess flud from his body as required. Alex was on IV fluids from the moment he go into hospital, and sometimes the fluids would build up. Potassium, intermitently added to Alex's drip when he got low readings on the blood tests. Type AB Rh Positive, whenever required, whenever the tumour grew it was because he'd bled into it, blood needed replacing. Saturday 2nd May - Tuesday 5th May 2009 Waiting. And that is all. Alex stays on a cocktail of blood pressure and pain relief medication. We settle in. Hospital and the CLIC house seem to become a second home to us, and we discover that if you spend long eough waiting for answers you get to the point where you don't want to know them. These four days become a bizarrely safe time, one which we almost don't want to end. We can't be expected to do anything except tick over, left entirely at the mercy of the lab. While louise gets the agony of worrying, born worrier that she is, I exist in a place of 'Mushin', which roughly translates to no-mind. Having no answers, good or bad, I simply wait. It annoys the hell out of Louise, but it's my way of coping, just like her way is to worry. I deal with facts, not conjecture. That's not that the whole thing isn't vastly upsetting for me, I just don't go off on wild flights of fancy. I'm pretty sure this doesn't make me a bad person. (1 Comment |Comment on this)
Wednesday, May 20th, 2009
11:18 am	More Cancer Thursday 30th April 2009 I wake up in an unfamiliar room having woken up evey two hours. Alex had been on painkillers throughout the night. and the fold down bed was just about wide enough to lay on without faling off. But I'd slept. Louise and Monica come back from the crackhouse and apparently it's lovely. I'd find out for myself later in the day. We are mobbed by Oncologists. It's the only term I can think of to use. We met our Consultant Oncologist for the Bristol Team: Steve Lowis. Like the rest of his team he's fantastic. He's one of those softly spoken men who you really have to pay attention to, but he has a pragmatic and knowlegeable aproach to our problem and we feel reassured. The other team member wo really stands out is an indian Lady named Amilla (sp). Pushy. That's the word that sums her up. In a good way. Once they had decided which tests and scans Alex needed she got on the case and within ten minutes she'd pulled strings and bullied radiographers and the entire BRI radiography schedule of appointments is ruined for the day. Alex jumps all the queues and gets an MRI and a chest CT. He has to go under general anasthetic for them to keep him still. Thanks to Amilla's pushiness he gets both scans done under one anasthetic. Louise goes in with him to be put under and then we all wait, before returning with our groggy and distended baby to the ward. He has another ultrasound aswell. Bristol don't like to use other people's scans. We wait for results. The call comes through from the radiographer later that day and Steve Lowis comes to see us. He explains that the scans confirm the size of it and explains the nature of Alex's tumour. It's a growth that is cystic. This means that in addition to solid mass it contains a pocket of fluid. He says that this expains the rapid growth of the tumour. It had been half the size it was, sitting on top of his kidney and taking up space in his body but not pushing things enough to distend his stomach as it is now. It must have taken a knock and bled into itself, doubling it's volume before the beed clotted. This is quite common in tumours as they lack decent structural integrity. He schedules surgery for the next day and our Consultant Surgeon comes to see us. Our Surgeon's name is Tim. He's another quiet man. From south Africa, and again, calm, knowlegeable and extremely skilled. As far as I can determine he's one of the most talented paediatric surgeons around (more on that much later). He explains the procedure that he'll be doing. It's called a Nephrectomy. He will remove the kikdney and Tumour intact. The two are pretty much one and the same, and to reduce the risk of rupturing the tumour and spilling potentially cancerous cells into his body cavity, they won't even attempt to try and save some of the right kidney. We agree entirely. Alex will have a scar around the entire front of his torso, just below his ribs. We see the anesthetist and sign consent forms. Our day pretty much winds down after that. There are no developments and Louise stays in the hospital while Monica goes off to stay with relatives and I go to the Crackhouse. CLIC House Deserves it's own section. I can't say enough how grateful we are to CLIC. Let's face it, anyone who has a child who develops a serious cancer in the south west of england ends up i the BRI. They may come from Exeter, they may come from Penzance. One way or another they're out of their element, worrying about leave from work, the health of their child, money problems, other children of theirs, and basic survival on a day to day basis. CLIC Sargent helps with that last one. They give parents a room in one of their houses. CLIC house in bristol is fantastic. It's two old georgian town houses knocked through into one another. There's two sitting rooms, a double kitchen, two phone booths (Free of charge) Two games rooms with toys for kids and pool tables and air hockey and all sorts of stuff. There's a utilities room to do your washing, there's a massve garden. There are 11 bedrooms usually with a double and a single bed. There is WI FI. It takes away a lot of the hssle of being uprooted and is a home away from home. I actually relaxed there, which I hadn't done for days. Current Music: The sweet sound of fighting chavs (3 Comments |Comment on this)
12:20 am	Cancer This won't be pretty. Neither the content nor the format. The grammar, at least, will be passable. Cancer, I should begin, is something that happens to other people. It doesn't happen to me, my family, or my friends and  loved ones. We see it on the TV. We routinely ignore charity volunteers who shake collection tins under our noses on the high street. I reckon we all secretly hope like hell that if we pay no attention to it it will go away. Thus it comes as no small shock to me that I find myself venting through the medium of the internet from the Bristol Royal Infirmary childrens hospital. Those of you who are on my friends list will no dubt know that Louise and I have two beautiful children named Charlotte (4) and Alex (6 months). Our kids have always been healthy, happy active and intelligent. They are in short, our pride and joy. Were we to go back in time three weeks we would return to the beginning of my family's involvement with Cancer: Tuesday 28th April 2009 I go to work. Work, usually stimulating, challenging and enjoyable is a bit drab. The credit crunch has hit and construction has slowed. I'm working on a job at the MET office constructing a ***** ******** ********. It's an MOD security site so I shaln't go into it. It's quite a spiffy bit of engineering. Returning home at the rather uncivilised hour of 18:00 louise's sister comments to me that Alex's tummy looks a little big. I change his nappy (oh the joys of fatherhood!) and am met with the sight of an inordinately swollen belly, bulging out on the right hand side. "That's not right" I say to myself, and promptly have handed Charlotte over to her Gran, upped sticks and moseyed on down to the Royal Devon and Exeter hospital A&E. At this point our thoughts were that he might have a hernia (fairly common in babies) or a blockage in his gut (less common but eminently treatable). We don't wait at the hospital. We get ushered directly past some sweaty students, one of which has a broken arm and whose mate snidely comments that the baby got to jump ahead of them in the queue. Resisting the urge to carve a suiable reminder about him not paying taxes while Golden Brown sees £1000 every month from my paycheck, we get 'seen'. The main consultant for A&E sees us. Concerned, he goes away. Returning, he brings a Surgical Registrar, Surgical consultant, Paediatric consultant, and an Oncology registrar and a few junior doctors for good measure. A short time later lex has had a tube put down his nose to his stomach (Naso-Gastric tube or NG for short), and a canular in his hand. He's had an X-ray, and the consultant radiographer is giving his stomach an ultrasound. They take bloods. The doctors haven't left. All seven of them. Plus a nurse. We're worried. Half an hour later, after all the doctors have talked it over, the Paediatician sits us down in a side room and explains to us that it looks like there is a growth coming either from Alex's right kidney or from the adrenal gland above it. She explains that they don't see enough of these things to treat it and that we would be trnsferred to the BRI childrens ocology ward. Our 6 month old son has cancer. We are somewhat distrought. We sleep the night in a parents room while excellent nurses look after Alex. He's been given morphine for the pain. Painkillers are about to become a large part of our lives, as over the couse of the evening Alex has been suffering increasing pain from hs growth. At that point we're still calling it a Growth, not a tumour. Remember, cancer is something that happens to other people. The Tumour on Alex's kidney is, at the time of the scan, 100mm in diameter. That's 4 inches. That's a Grapefruit. That's in the belly of my 6 month old baby. Wednesday 29th April 2009 This is the day we travel. In the morning we prepare and the nursing staff at Bramble Ward book transport. It bears saying now that every single member of the NHS staff that has looked after us has been fantastic. They are well trained and competent. They know their jobs well and are commendably mindful of the needs not only of the patient, but also of his parents. They are a bunch of modern day heroes and they put me to shame. I take pride in my work, I build for the future of our country's infrastructure. They save ives every day. Charlotte visits us in hospital with her gran and Louise's sister. She handles it so well, adapting to the fact that Alex is hooked up to drips and tubes and monitors and taking it all in her stride. Until we return to Exeter she stays with her Gran. We miss her, and we talk to her every day, but with us just wasn't the best place for her to be. Louise rides up to the BRI with Alex in the Ambulance. The night before we'd shot home to pack overnight bags before sleeping in the hospital. I make another trip back, empty the boot of my car so tat the scrotes in bristol won't be so likely t break into it, and follow her up. Louise's aunt Monica, bless her soul, comes up with us. She's a trained nurse and we get on really well with her. She's not only moral support but technical support also. Due to the vagaries of the booking system for ambulance transport and bristol traffic we arrive quite late in the day. Moving up onto the Oncology ward we're shown around and somewhat shocked by the wealth of facilities. There is a ward and five rooms. We get a room. It has TV, a fold down bed, medical paraphernalia an an en-suite toilet and shower. There is a kitchen. A computer station with internet access for parents. There is a staffed playroom fom which prents can borrow toys. There is a school. A frickin' school. In a hospital! We realised at this point exactly wat 'Centre of Excellence' means to a hospital. The nurses on the ward ares pecifically trained Paediatric Oncology nurses. Nothing that happens is outside their ability to cope. The doctors are fantastic (more on later days) we see a Registrar Oncologist and get settled. We're told that a room has been made available in a house run by the charity CLIC Sargent for us. I stay the night on the fold out bed and Louise and Monica stay at CLIC House (or the Crackhouse as I re-name it, unfairly. It's nicer than my house, more later). It's a pretty fractious night. Alex can't settle, he's grumpy and uncomfortable. Nurses take his blood pressure, pulse, e.t.c every two hours. They give him Paracetamol, Tramadol and Morphine. We answer a metric shit load of questions, many the same aswe'd been asked in Exeter, but such is life. End of Day - We're all numb at this point. News like we've had takes a while to settle in, and we're all really running on autopilot. Had I written this at the time then no doubt there would be more detail. We're all in a state of shock at ths point and in no state to communicate or even function properly. I shall edit as I remember stuff. This will be continued when it's not half past stupid in the morning. Fact is that as I type Alex is recovering from an operation and I'm too wired to sleep. It's cathartic for me to express what's happened to us all.   Current Mood: Wired Current Music: Beep... Beep.. Beep... (16 Comments |Comment on this)
Monday, April 17th, 2006
8:55 pm	See Pete Meme, Meme, Pete, Meme... Oooookay. I've never done this before. Consider this my LJ Cherry. I wish to add that I'm only doing this because Mapp said I wouldn't. Neener neeneener! Meme: ( Read more... ) Current Mood: tired Current Music: The soft hum of the Processor fans. (6 Comments |Comment on this)