Craig is hand writing his diary out because he can’t use his left hand to type. When we get a chance we type it up here.
Craig speaking about Home Education on YouTube: http://hef.org.nz/q-a-with-craig/
Diary of a Brain Tumour
8 July 2011 It was around the 8th of July 2011 that my left foot really began to bug me. It felt like my shoe had developed a pressure point on the ball area, and I imagined that walking on it as I did was causing nerve damage.
9 July 2011 Next day I noticed the calf was mostly numb. 9 July was Saturday and I helped Haarhoffs shift house with our truck. It is so handy, that truck, for helping with jobs like that, shifting lots of firewood, taking Jed to Church to mow lawns etc.
14 July 2011 I reckon it was Tuesday 14 July that I went to Dr Minnee about it. He wondered about sciatica, but the numbness by then was in my scalp, so it indicated something more. Upon reflection, I reckon the scalp numbness had been there for a month already. Just a slight numbness where the skin feels different to normal when stroked. No pins and needles and maybe one could call it tingling. I stopped taking the blood pressure tablets I’d been on for awhile just in case this was a reaction to them. Had blood tests which all came back good.
15 July 2011 Next day, 15 July, I had a numb patch up the back of my left leg and right where it joins the buttock, it was numb with tingling. Felt like I was sitting on a big wad of keys whenever I sat. Rang Dr Minnee about it. Began using a pillow to sit on in the truck and brought a new pair of shoes plus insoles to avoid problems there.
19 July 2011 I think it was Tuesday 19 July when I saw Dr Minnee again. He reckoned it indicated a stroke or a tumour. Also prescribed stronger blood pressure tablets, since current ones were not affecting lower numbers (the bottom number was consistently at 95 or more). I had blood tests done that day and next day had an ECG. Asked about PSA (Prostate Gland) so that was included. Blood and ECG were both clear. So I was also scheduled for an ultra sound of my carotid arteries on either side of neck and CT scan of head and neck. These were scheduled for Monday 25 July.
22 July 2011 Josh arrived Friday 22 July and so did Samalah Gray arrived.
23 July 2011 Great engagement party in the evening, over 100 people, lots of simple food and drink, a wee short time to introduce Josh to everyone over PA system and lots of talk.
Great, friendly crowd. Pleased to see a few of the older folk from church who often find it really hard to attend night things, especially in winter. Also did English Country dancing at the end. Two marvellous sermons Sunday. Some Wanganui folks ( Boessenkool, De Vries, Akkerman and Sandbrook) came for lunch as they were at some community music event Saturday. I was finding that the truck run really seemed to aggravate numbness. Somewhere around here, 18th or so, I wrote an introduction to Gracie’s exemption application which Barbara wrote. Hers was a recital of our children’s track records so far and mine was an explanation of why we were not going to answer their questions—we don’t recognize their authority (M.o.E).
25 July 2011 Ultrasound of carotids were fun to watch as the tubes were wide open and clear. CT scan happened as well. I was numb on left cheek, neck, breast, stomach and all down back plus shoulder and upper arm. Pretty much everything left of midline on both front and back, except my left hand, forhead, nose and lips. So Dr Minnee got me an appointment with hospital neurologist for Thursday 28 July at 11:30am.
28 July 2011 Once there it was fun talking to Dr Pietro Cariga who is from Sardinia in Italy. He showed us CT scan images and how there might be something on right central part of brain. He said I needed an MRI to reveal what this odd section was the CT scan picked up. Well, a couple hours later, I was at the MRI part of the hospital. So I was on a table that moved me into a tube and all sorts of loud noises, clacks and buzzes happened. These were apparently the images being taken. It was a very strong magnetic field. They were careful to ask me again and again if I had any metal bits in me: slivers in the eye from metal work, shunts, bone screws, pace maker, etc. Watch & glasses off (ring stayed on) 45 minutes later it was all over. Before I was off the table, however, they said the Neurologist wanted to see me at 11:30am next morning, Friday.
29 July 2011 So Friday AM when doing truck run, my left foot was having trouble finding the clutch. My cheek, jaw and neck on the left were very numb and slightly tingly. Leg was simply dead. Last Sunday, while standing with some folks telling of this numbness, Maria Minnee came up behind me and wanted to get past. She tapped me on the shoulder. I felt nothing, so did not respond. So she started jabbing my upper arm– all saw it– and I still felt nothing. She spoke and I heard. But not well. My left ear is all numb and it seems to me the hearing is also affected, but the Doctor says it shouldn’t be, as that is not the part of brain that deals with hearing. Nonetheless, my hearing perception is definitely different– a lot of tinny sounds accompanying any other sound in the left ear.
At neurologists’, Dr Piero Cariga, at 11:30am, nurse Rosie Taylor followed us into office. We immediately figured she was there to help deal with us if we fell apart emotionally at what the Dr was about to tell us. He said there was a growth, a lesion. We wanted to know more. He hesitated to show an image but we were keen, so we got a show of various horizontal slices through the brain. One especially showed the tumour, contrasting white against the grey matter, because of the heavy metal injected into my arm. The fact that it took up the dye so quickly showed it is a growing tumour. It is in the right temperal area, just below the brain surface under the temperal lobe. It seems fairly well-defined, so not one of these – aggressively invasive growths that go all over. He said we could get a disk of all the images at the MRI centre, so we want back there– they remembered my name without being told and gave us the disc without payment, and wouldn’t accept when it was offered. Dr Minnee and he organized a full-body CT scan for 8:00am Tuesday 2nd August. This is to look for a tumour elsewhere which would indicate that the one on the brain is secondary. Dr Minnee said that if it was secondary cancer in the brain, palliation was about all I could expect. So we went home and made up a PDF of the image plus a wee commentary by me and sent it around the church and a bunch of others. People are praying all over. It is wonderful. I’m not worried about it. It just seems a big hassle. Started to write down some possible implications and things we need to think through. Spoke to Mom in California and to Beef in Oz. Barbara spoke to Zach in Illinois. I slept well and long– I’ve been sleeping very well the last couple of weeks, aware of having dreamed a lot with dreams of a very slightly frustrating character as of something being left slightly unresolved.
30 July 2011 This morning, Charmagne drove and I hopped in and out of the truck to deliver goods. My left eyelid and eyebrow are numb this morning. I cannot feel my watch and the numbness is creeping up the heel of my left palm and across the back of my left hand. My lips are also feeling numb for the first time. So Barbara has organised a strict diet, all kinds of health foods, even buying hemp seed oil and apricot kernals from the organic living shop! And listing all the forbidden foods– no sugar and no dairy. Plenty of red grapes, chew the seeds and pumpkin seeds too . It occurred to me today for the first time that I may be facing a period of time of increasing disability, losing maybe one function at a time. I’ve only lost feeling so far – strength and movement are all still there. Then I rhetorically asked: given a worst-case scenario, what should I be doing? Spending more time with family and writing/speaking urgently and unapologetically to Christians to get their children out of state schools.
It is remarkable the number of emails and facebook comments from all over. Even from strangers– some hear “brain tumour” and have a wealth of experience or stories of someone they know and are keen to share them with me, who they hardly or don’t know. But they’re so keen to share. Others know us and heard or received something from us in relation to home education. This has also been very gratifying– to hear how something we’ve said or written has positively influenced another family to home educate.
31 July 2011 Good to have Alanson here last night and come to church with us. Al drove, as I’m not allowed to any more. A lot of folks were so good—and it is so wonderful to have the prayers of so many, asking the GOD of the Universe to deal with this. I keep coming back to the understanding that GOD ordained this for His glory and for our good.
I did not feel that the loss of feeling had increased today (Sunday) except perhaps in that the already numb parts became number. I thought I felt my lips and inside of cheeks starting to go numb.
Two great sermons and a good prayer meeting after.
David and Jenny Waldron drove over from Hastings on Sunday afternoon. We had some time together before church—they enjoyed meeting old friends. Then home here for tea. We’ve been buddies for a good 20 years! It is remarkable to contemplate all that the LORD has brought us through and the understandings and convictions HE has brought us to. They left and I went straight to bed.
1 August 2011 Al, Char and Kaitlyn did the truck run Monday morning. I got up and started reading emails on alternative treatments sent to us from Dr friends of Ty Bollinger, who has treated many cancers. It really is a hassle how this has upset the routines of so many folks. I had a great phone call from my brother Jeff last night about 10:30pm it was around 3:30am his time. We had a friendly, fun chat– he’s doing great feats with friends on bicycles—5 x 200 mile rides in one year! His opening line was, “So thanks for the bombshell!”. And fair enough! This morning I had a call from Rev Graeme Nicolson, the minister who will marry Josh and Charmagne. Then one from sister Stacy. This is all so nice!
I guess I need to anticipate the progressive loss of more and more functions on the left side and then maybe core intellect, hearing, balance, sight. I am supposed to have someone with me whenever walking, we’ve decided. It’s a bit impractical, really. And I’m also supposed to have 1/2 hour good walk for exercise each day. Ty wants us to go onto a treatment from the USA which will be rather expensive, but has offered to pay! It is (like almost all the others) to build up natural immune system which will then eliminate the cancer on its own.
Trying to get Jed, Kaitlyn and Grace to understand that they’ve got to do more to help, especially simply do as they’re told, even when it is someone else’s job. We decided with others yesterday to eliminate shared tea part of Bible study for Wednesday. I’ll lead this one, if not in Wellington under surgery, but probably drop out after. Probably drop session clerk job too. Don’t feel any extra numbness today, Monday, but I do have a mild headache on right side at front (near tumour zone). This has been there for a week, really, but so mild– yet perhaps it is indicative that something is wrong. I do move, more slowly and deliberately for I am conscious of left side numbness. Some say I speak more slowly. Barbara says I’m not thinking as clearly and sharply either. She, Jed and I wrote up invoice to give to Speirs Foods for truck run and also set up spread sheets for next month.
I really was unmotivated to do anything more after that. Left side really heavy, so extra work. And headache is a de-motivator. Overall, I just feel slightly uncomfortable.
John and Wietske came over after tea and munched on almonds, cashews, figs and apricots! John reviewed the disc we have of MRI images so helped us to understand shape of brain and tumour, and where it might cause trouble. John has done radiology. He also gave opinion on how surgical removal might go reasonably straightforward, it seemed. Maree Sandbrook also came around to stay the night and go out on truck run with Charmagne Tuesday morning.
So I’m starting to realise that this is definitely life threatening and at least it will cause major dysfunction. How bad and how long that will be is an unknown. So we tend to favour surgery, but if CT finds other tumours, the opinion is that all I’ll need is palliative care. So we’re also thinking we’ll get the LifeOne protocol Ty Bollinger recommends– By the time John and Wietske left, I was keen to lie down.
2 August 2011 Slept well, as always. Numbness really interfering with private parts as well. So had shower, but nice warm massage of water from rose is wasted on my left side—can’t feel anything. Soft towel feels really rough on left side, as if doing damage. I feel numbness moving up my two little fingers on left hand and across heel of palm. I’ve got some sharp soreness in left upper arm, laterals on both sides of chest and both shoulders. Came down to hospital for CT scan and have spent 1/2 hour or so waiting and drinking stuff to give contrast during scan itself. It is a bit tough knowing what to pray. The LORD ordained this tumour so it seems odd to pray that He’ll take it away. But He sent it to me in NZ in 2011, so He wants me to see it in that context, yet His word is still to guide all we do. Well, the universal opinion and track records and lesions of tumours is that they are bad news and need to go. So we’re working toward that, and taking advantage of both technologies around us and expertise, plus alternative options. So this morning, before coming to hospital, Barbara rang Ty in USA. Got the LifeOne stuff on its way to us and Ty assured us of love and prayers. I don’t like the idea that I’m not staying on top of current jobs—told John that I can’t continue as session clerk last night. Answering emails is a hassle. If I fear anything, I think it is being really ill, like with nausea or headache. I tried typing a bit, replying to emails, and my left hand didn’t do so good. It may have been the unusual laptop, maybe!
Went to the CT scan at public hospital and met a fellow who was having some post-op, post-radiation scans. The radiation would make him really nauseous, he said. He’d walk home from the radiation and have to vomit in people’s gardens. That’s the kind of thing I really don’t want to face. And I believe such treatments also wreck your immune system. Well, the scan consisted of getting some raspberry– flavoured stuff down my throat, lots of it. Then a needle in the arm through which they put some more “contrast” as they called it. The raspberry drink was “contrast” too. So lying on the table, it moved me into the donut machine where a voice told me to breathe in and hold it. The table moved me a distance while the scan went from my neck to my hips. Then the voice said I could breath out. This happened a couple of times then a radiologist came to rescue me from the machine. Nothing to it—the worst part was having to hold my arms above my head, this is horizontally above my head while lying down, so they weren’t going into the donut machine for each scan. It was just uncomfortable. So we wandered away from there and found the place where Dr Cariga is. He and the nurse were both busy, but the receptionist promised to get him to ring. He did when we got home, to say he couldn’t tell much from looking at the scan and wanted to wait for the radiologists’ report. In the meantime, Barabara got me an appointment with Dr Minnee to do a thorough check of my skin for melanomos, which are not picked up in CT scans, apparently. So off to Henk den Hartog’s funeral at Terracehaven Chapel. While there, Dr Cariga rang again. We had the cellphone on vibrate only, so Barbara took it out into the foyer to talk. Dr Cariga again: the report was that I am clear– no other tumours anywhere! So the one in the brain can be considered primary! Went home for a bit after many hugs and handshakes from brothers and sisters also at the funeral, which itself was very uplifting and encouraging.
2pm Dr. Minnee checked me all over for melanomas—all clear! I got a call from Dr Alexander in Wellington who said the team there (and we have heard from another who is also a Dr in Wellington, that they are a team, a great team who discuss each tumour case to come up with a game-plan) wanted to see me Thursday for another special scan and then an operation, probably a biopsy, on Friday. I asked him about doing removal surgery and he said surgery there was a bit risky and that we’d be best to talk about all these things Thursday.
John de Vries came around and took away all the church-related documents and folders I have including the stuff on the computer. It seems he knows how to access the gmail session clerk account from his place, so that’s good. He said we need to start listing all the things I do and how we’re going to off-load them in the meantime. So I went for a nap and slept ‘til around 2:30am. Alanson came and he, Charmagne and Barbara brainstormed a lot. Charmagne has decided not to fly out to OZ this Friday 5 August, but to stay here to help out another couple of weeks and leave on the 18th of August. She was going to visit with Pete and Genevieve and help out there as well as to visit with Josh and his family—She and Josh also need to fill out some Documents with Rev. Graeme Nicholson who is marrying them. Well, Alanson is flying over to join them in Melbourne on the 23 Aug. Then he, Char, Josh, Sam Downes and Suzanna Rountreee will all drive to the Daniel 2:44 conference in Canberra, a 7 hour trip. The conference goes until Sunday 28 August when they’ll all drive back. It was on these two long drives last year that Josh and Char got to talk so long and become familiar with each other. So this is a real blessing to us to have Magnie a bit longer. But it is an incredible sacrifice on her part. This tumour is majorly messing up everyone’s routines and plans. Genevieve and Pete decided to send Genevieve and Eva over here– so they arrive in Wellington tomorrow, Wed 3rd August. Apparently Genevieve spent most of Tuesday 2nd August in Melbourne getting a passport for newborn Eva and airline tickets.
3 August 2011 Poor Charmagne started out with Maree Sandbrook at 5:30am this morning but suddenly got really ill. So Maree did the run with Jed. Jeremiah took our Estima to work (security at a bank) and will leave straight from there to get Genevieve and Eva in Wellington (his car is still getting repaired from a hit and run on his car while it was parked outside our house in Matamau St). Alanson said he’s coming back into town this evening to visit from Ohakea, so we should have quite a nice little reunion here. There is so much to do– we missed Gracie’s hospital appointment this morning for an eye test and new glasses. Barbara is going to cancel her flight to the USA to visit with Zach, Megan and their new baby due to be born 25 August. Barbara is trying to keep notices about the progress of this whole thing posted on the HEF website, I’m trying to write an account of it several times a day—Maree Sandbrook has been typing them up and Barbara posting. Barbara has also been doing a lot of internet research– a good source she found is cancerhelp.uk. So here I’m trying to be good and write up my thoughts for today (it’s still in the morning) and I’ve run out of paper. So let’s go get some more from the office. Oh, the cry goes up, if I’m going to walk somewhere outside, someone needs to go with me. Oh, I say in exasperation, if we’re going to make such a big deal out of it, maybe I’d better go for a walk around the block, to get some of this exercise I’m supposed to be getting. So we meet Ken Bowden driving over to see us. So we keep walking (Jed and I) and Ken drives on to the house. Great visit with Ken– he will take over the Wednesday Bible study. Then Michael Flinn arrives. He had great news about a letter from a church family wishing to be fully reconciled back to us all. That was emotionally good news! More prayer with Michael. John De Vries then arrived with papers we need to sign sorting out powers of Attorney. We needed two signatures as witness, so Martin Kountze arrived right on cue. By lunch time I’m still trying to eat all this health food stuff. My brother Jeff rang from California. Great talking to him and remembering our Dad taking us to Candlestick Park in San Francisco to watch the Giants play baseball. We always took our baseball gloves to these games in case they hit a foul ball into the stands where we could catch it.
I rang Ron and Susan in Atascadino, CA after that. Charmagne was on the phone a lot to the PN Hospital, and Wellington Hospital and hit the jackpot! They want us to turn up at midday at Wellington Hospital. And then PN Hospital, since they referred me down there, came up with petrol vouchers and subsidy for a motel right close by for Barbara, Genevieve and Eva.
Genevieve and Eva arrived, thanks to Jeremiah driving to Wellington airport. So good to see them, and to see Eva for the first time– she’s only 10 weeks old. And she would look steadily at Barbara and I and smile…making us very happy grandparents.
So here were 7 of our 8 children sitting around the tea table this evening: Genevieve, Alanson, Charmagne, Jeremiah, Jedediah, Kaitlyn and Grace. This is getting really good! I rang Pete to thank him for sending Genevieve and Eva over. Took some photos and did some brainstorming on questions to ask surgeons tomorrow.
4 August 2011 I slept like a rock from about 9:30 to 7:00. Since the numbness started, I’ve also had very regular calls of nature 1st thing every morning, which is not usual, but not at all unwelcomed. I weigh myself every morning afterward, so I appear to be losing weight down to 108.10 kg today. Then I do three blood pressure readings each morning. Since starting latest batch of blood pressure pills, the reading is around 138/88. But the 88 has gone up to 90, 93 the last few days.
The numbness around my left eye and cheek seem more intense today and the tingling numbness in the two little fingers of left hand more noticeable. I am sore in pectoral muscles on left and right. Sore somewhere in left upper arm, and sore along both shoulder muscles. We like to think that means we’ve slowed down the progress of this tumour with all this organic and special food. That is, surely I should be experiencing much worse symptoms. So fun seeing Beef and Eva! Magnie and Maree did the truck run with no problem today. We’re all running around, as we pack for some kind of stay in Wellington, getting jobs sorted and assigned, what to take to Wellington, what to do before we leave, etc.
So we finally leave – and leave our chili bin behind with all the organic food in it. No problem: Anna Leech already told us she was bringing some to the Adelaide motel near the hospital. Genevieve drove us down with Eva in the back with Barbara. (The motel was organized and funded by the PNHB who also gave us petrol vouchers for the trip down.)
Once at the hospital, we had to wait around a bit. Turns out they’ve had 3 brain aneurisms helicoptered in. I was put in ward 7 south, bed 13. My roommate, bed 14, is Bryan whose wife recognized me as the Rawleigh man! They’re from Palmerston North too! He has a tumour on his spine.
Racheal came up and so did Mrs. McDonnell. It is so nice to see so many! My brother Jeff rang again from California to get the latest! Not much to report.
Dr. Alexander came around to tell us about what’s up ahead and answer questions. He had print outs of the MRI and pointed out how it is rather deep and risky to try a removal. We had questions about the chemo and radiation treatments and a favoured natural protocol of ours but this is not his area of expertise – ask the oncologist. Dr. Alexander described a biopsy and also what would probably happen if we did nothing – he reckoned “months” before death. The assumption is that it is cancer, a glioma, and he reckons it is moving fast. We pointed out black spots within the tumour, he called them necrosis (dead bits) indicating it is growing fast, too fast to properly feed itself. The CT scan from last week indicates it is a primary cancer – that is, it started in the brain and has not come from somewhere else.
So Dr Alexander will get the oncologist to come round before lunch tomorrow, Friday, and says the biopsy would be in the afternoon. We would like to find out more about how radiation & chemo work and especially about this LifeOne Protocol.
After Dr. Alexander left, we prayed. Ian joined us. It is rather serious. So we moved down to a “Whanau Room” where we could make plans without bothering my roommate. Rang Alanson and Char to get them to come down after the truck run tomorrow. Had a number of emails from all over, so incredibly kind especially Barbara’s brother Bob.
Anyway, the situation is the tumour is inoperable. Some say a biopsy can spread cancer. Dr. Alexander reckons that is a very small possibility. A couple of trainee doctors came in to put a needle in my arm. I let them practice on my left arm, where I cannot feel it. Listening to the commentary of the one while the other jabbed me was funny – “I think you’ve gone right through!”
It reminded me of a Laural and Hardy routine! I now have big black and blue bruises on the inside of my elbow and on the back of my hand, both on the left side. They took samples and took off to the lab. Another Dr. came in later and declared that that needle in my own arm was too narrow and too short… and had compromised the lab samples. So she gave me another, longer one, in the back of my right hand. A crepe wrap over it and I was ready to sleep with it in, ready for the biopsy on Friday… and the “contrast” for the MRI too.
Friday 5 August 2011 So I slept well and woke up by myself in Wellington Hospital about 06.30. I’ve left my Bible somewhere, which is a pain, for I’d really like to read from the Scriptures right now, have God’s Word directly. I’m praying that His will be done, which it will, of course, and I want to be an active part of accomplishing His will, not hindering it. I’m praying that He will remove this tumour and give me back the facilities I’ve already lost, though the Dr. did not think that was a result one could realistically, medically expect. Fair enough – but God does miracles when He requires them. So I’m hopeful, but I don’t want to be presumptuous. And I want to be able to embrace whatever sanctification/purification/refining programme the Lord may be assigning me at present. And I want to accept the same for the weeks and months ahead too. I’m somewhat excited and expectant this morning, for major decisions are to be made, it seems. I asked the nurse for a Bible and she couldn’t oblige. What about Gideons? Yes, she said, they used to have a Bible in every bedside table, but they were taken away not too long ago. She was told why, but could not recall, though she was ready to say something about another patient they had earlier – but never finished her story. Maybe the chaplaincy could loan me one. Well, hopefully the whanau will be here soon.
You know, my left forearm is LESS numb then it was yesterday – same for the back of my hand and the two little fingers. The rest of me seems the same.
A neurosurgeon, Dr Woon, came in to talk to us. He started by saying how sorry he was that we had to be here in this situation. How nice of him! Then he told us the tumour was a Glioblastoma Multiforma “the worst kind” he said. Then added, “there is no cure”. Barbara immediately picked up on that and asked about the effectiveness of radio and chemo therapy. He said they might slow it down or reduce it, but they would not cure it. Even if they could operate, if even one cancer cell was left behind, it would grow back just as badly.
Dr Woon also mentioned that radio therapy would not start for six weeks after the biopsy. “Why is that?” “It takes six weeks to make a mask”. “What kind of life extension could we expect from these treatments?”. “Weeks, maybe a couple of months”. He also described, in more detail than Dr Alexander last night, the biopsy procedure and the risks. It really put me off. So what if we did not go through with it today? Monday week would then be the earliest, 15 August. So we declined today’s offer and asked to be penciled in for Monday 15 August. Done. So then we did some maths – biopsy in one week, radio therapy 6 weeks after that. That is 7 weeks, nearly 2 months. There’s the whole of the possible life- extending benefit used up in getting started! Soon after Dr Woon, the oncologist came in, Dr Gray. She explained a bit more about the procedures and to our query about the 6 weeks to get a mask done, she replied that it wasn’t really that long. However, in our case, she said, since we will be getting transferred to Palmerston North, the logistics involved, getting the team in Palmerston North up to speed, etc. She said a 6 week lag between biopsy in Wellington and start of treatment in Palmerston North is not at all unrealistic. I think it was at this point that I went to a separate room where they set me up with a phone and I rang Dr Jim Howenstein, developer of the LifeOne Protocol we want to use. He lives in Costa Rica and he answered the phone. We hit it off straight away and he was very keen to hear that we ministered to and promoted Home education in New Zealand and Australia. He immediately said how important that work was and how I needed to get back to the battle. He said, “You tell those Christian families there to get their children out of State Schools because all they do is tell lies!” “Man after my own heart” I thought.
We talked about diet, what had been going on here. He had only totally positive things to say about the Protocol and people who’d been cured by it. He and Ty Bollinger and our USA Dr all talk consistently about healing and beating the cancer. After an hour, I said to Dr. Howenstein that we needed to pay for the hour’s consultation. He refused and said he would help me get better so I could get back to helping home educators, as it was such an essential work, he was so encouraging!
Shortly afterwards, I was wheeled off to the MRI. Had fun with a technician there who said my accent had to be northern California or Canadian. “How do you get that?” I asked. He’d been in Texas. Somewhere about this time a nurse was dealing with me when she said “aboot” instead of “about”.
“You’re from Canada” I said. “Everyone says that. But, no, I’m from Ireland.” So we had a nice chat about Ireland and then the Orangeman’s parade and then William of Orange and then Protestantism and then the I.R.A.
Soon we were all standing in the hospital corridor wanting to leave. The charge nurse gave me the summary discharge papers. Then Dr. Woon came up to ask if I’d seen the MRI from this morning. “No”.” Well come with me”, he said. In his office he had a slide up on his computer screen of the MRI last week and one from this morning up next to it. “This tumour seems to be growing fast,” he said. “Maybe 30% increase since last week.” He drew lines on the screen across the tumour’s image which produced figures in millimeters. “About 8mm increase from left to right and about 13mm front to back”. Wow! So he appealed to us to re-consider our decision not to have the biopsy that afternoon. “There is still time to do it. And, honestly, if we wait much longer you are likely to be paralyzed and you probably will not get the use back. In addition the time is fast approaching where any treatment that may be indicated by the biopsy’s results will not likely produce any ‘worthwhile’ results.” No, the LifeOne Protocol still seems to offer more.
Charmagne drove us home. That is, Barbara & I, Genevieve & Eva. Alanson was here most of the day with Kaitlyn and Grace and Jed. So he took them all back home. Ian, Grace’s birth dad, was here for a bit and so was Racheal (the children’s birth mum). We got caught in some Friday afternoon leaving-town traffic which lasted until Otaki! Soon after Otaki; I rang elder John de Vries and asked if he could rally the rest of the elders to meet at our place at 8pm to anoint me with oil and pray for my health, as in James 5.
We arrived home just in time and John, Michael Flinn, Michael Huizinga, Ken Bowden and Gerrit Vrolijk were all here. Ken had some olive oil from the Holy Land itself. So Michael anointed me, the brothers all prayed, exhorted me and shared passages of Scripture. I read a bit of James 4 and confessed my sin. It was a great time – so uplifting and edifying, calling on God alone.
Saturday 6 August So much to organize. Barbara was pulling in organic veggies from so many offers, plus my meds plus Health shop supplements. How are we going to get the Protocol? So Charmagne took on tracking the stuff; Genevieve set up a laptop at the table with all the meds and foods around her – Kaitlyn became GB’s PA. They catalogued all the stuff then researched what I should eat and should not eat and what foods might interfere with what meds. Charmagne looked through cupboards to see what I could eat and then make something edible and appetizing. Jeff rang, Sally rang, Susan rang from Mom’s and I talked to all. Barbara talked with Zach about getting Protocol and couriering it here.
We planned a formal meeting for tonight and wrote agenda. Family ate lasagna and chocolate cake! Both totally forbidden to me! I got to scarf organic rabbit food and special water, pills and loads of Vitamin C. (Still, looking round table and seeing 6 of 8 children (Zach and Jed not here, Jed was at church social this evening) and 3 of 5 grandchildren – was hard to beat. Got filmed with some grandchildren. Then we had meeting with Alanson chairing.
Hope to ring Zach later to confirm his flight details and uplift of Protocol. Barbara will ring my three sisters and say they’d be so welcomed to come, though I’m ok now, but that is the time to come, before I get bad. And they’ll probably meet Zach here and Pete and the children. Up to them. It’s not certain that I will decline quickly. We all reckon I may very well do, but that Protocol will help me recover quickly. All unknowns.
Talked of Char’s and Josh’s wedding plans and alternatives. Also Alanson’s work and need to shift to Auckland at some stage. He will get Corporal stripes on 12 September and should move to Whenuipai base in Auckland. But he does have compassionate dispensation to stay in PN as long as needed.
Pete and Genevieve and children all have open tickets, so they too need to plan return at some stage. Decided to meet again next week, Saturday evening.
The way several groups then had jobs and moved to discreet areas to work (Beef and Kaitlyn doing research, Magne with food prep, Al with other 3 children) reminded me of Christmas or Thanksgiving dinner preparations back home in the old days – several families would arrive, lots of children , so different adults would set up their individual command posts to oversee various operations to get all that food prepared and on the table at the appointed time and someone assigned to keep the children occupied and out of the kitchen.
Genevieve said she would see her three little ones among the rest of us and it would give her flash-backs of days when she was that small and we had lots of children and families around. I too was getting flash-backs looking at these three little blondes, Natalie, Caleb and Eva, for they reminded me too of happy family holidays at San Juan Capistrano or Monterey in California. So these memories were in amongst the overall way activity here was so busy and organized, just as I remember those big Christmas, Easter or Thanksgiving family holidays back home in the 1960s.
It was like that here today, only more serious and without all the snacks. Food is a big deal in all the team is doing. I need to eat a lot of some things and nil of other things, as it is clear food causes tumours to grow or not.
It seems the Lord has trained up Genevieve and Char with talents perfectly suited to what’s going on now. The Lord promises to keep us in perfect peace, whose mind is stayed on Him. We are all up-beat and peaceful.
I am fine, no pain, just deadness all down my left and I am anticipating some very interesting developments and outcomes. We heard enough BAD news from the two neurosurgeons and the oncologist in Wellington to choke a horse. It was truckload after truckload. In all honesty, if we were not anchored in Christ, we would have gone into a major emotional and psychological tailspin and would have crashed and burned by now. They told me I was dying, it was unstoppable and would happen in 3-4 months (before they saw the 30% increase in the tumour between the two MRIs of 8 days apart). And that I’d get really weak in the meantime and also suffer paralysis. None of that so far and I’d say it was God’s grace that I hardly feel that there has been any worsening in the last 2 days.
Folks each of us has to get ourselves right with God, reconciled to Him and regenerated by Christ and His Holy Spirit, for you do not know when a disaster like this may hit you.
Let me explain again, I am totally convinced that my loving heavenly father ordained this brain tumour from way back to work things in my life and in many others for His glory. Now can it be that the devil blind-sided God and sneaked in when He wasn’t watching? No, God is sovereign and the devil is not a free agent. I’m not saying God sent this evil thing- He may have used an evil agent such as the devil or more likely just appointed something in my already fallen and sinful body to go out of control. But He (God) is not author of evil.
Sunday 7 August Found I’d lost a bit of weight this morning and that blood pressure is a good level. I’ve stopped taking blood pressure and cholesterol tablets to eliminate as many foreign chemicals out as I can. The sisters (Susan, Sally and Stacey) rang to say they are coming! How fun!
Great to go and worship with God’s people. We are so blessed by the expressions of love & practical help, the prayers – and that not just from this congregation. Folks from all over have been wonderful! It is so humbling and also so exciting to see the wider Church, the Body of Christ, operating as it is described in the Bible (when one member suffers, all suffer together, when one rejoices, all rejoice together. This is all so exciting. Brilliant sermon from James 4 – 3 steps to victory over the devil:
Submission to God’s word; Sorrow over personal sin; (leading to repentance); and Struggle to consistently obey God’s word. Draw near to God and He draws near to us. Merely resist the devil (and engage the 3 steps) and the devil flees.
Charmagne massaged some Vitamin D into my left arm and hand during service. Good to be surrounded at home for lunch by Barbara, Zach, Genevieve and Pete and the grand children Natalie, Caleb and Eva, Alanson, Charmagne, Jeremiah, Jedediah, Kaitlyn and Grace (who is only 5 years old). Charmagne is making up these bowls of salad for me with all sorts of organic vegges plus nuts. This is then drenched in an olive oil dressing – very nice. One time she had a big blob of berry pulp in the middle, very nice.
Jessica Rademaker came this morning at 8am to juice a bunch of carrots for me and again just after lunch she did some more. Alanson got us back on track for church at 4pm.
Hans Vaatstra was preaching this evening, and it is always fun to meet up with Hans & Lisa! They brought over from Wanganui a load of items the saints over there have sent to us!
John and Wietske de Vries have rain-water tank water supply so Barbara organized with them for me to get my showers there! Tap water has Chlorine and Fluoride in it, both of which apparently feed cancer. So it is now off limits.
Barbara was dwelling on the questions “Why?” this evening. She could not sleep, so got up and blogged about it. 8/8/211 2am The only aspect of the question “Why?” that strikes me is “Why isn’t it worse?” After the horrendous news we got at the hospital, including the 30% growth rate since last Thursday (during 8 days-between two MRIs), it seems to me I should have worse symptoms.
As of tonight, Sunday 7 august 2011, I still have feeling in my left hand’s thumb and first two fingers and the top half of the palm. But if this were to be interpreted as any kind of judgement or punishment, the only question to me is “Why is it so little?” “Why isn’t it worse?” This is nothing compared to what I deserve and likewise nothing compared to what my Lord Jesus Christ has suffered to redeem me. If God were to do what is fair or just, He would open the earth beneath me and let me fall alive into the fires of hell. That is what I deserve, and I know it. But all I get is God’s love in His forgiveness through Christ and His love through the peace and joy in my heart and mind and through so many acts of kindness by His saints.
Charmagne broiled up some pumpkin in pure coconut oil – yummy!
Monday 8 August 2011 Praise God, the LifeOne Protocol arrived 1st thing this morning. We couldn’t ring through to our USA Dr for some reason, to tell him, so rang Ty Bollinger instead. I spoke to Charleen who gave us our USA Dr’s email. The other big development this Monday morning is that all fingers on my left hand are numb and I cannot tell if I’m sliding along while leaning on anything (wall, counter, arm chair). I’m also feeling unsteady on my feet- first time I need to admit that. I started taking the liquid protocol, Life One, that arrived this morning, plus the other stuff (hydracortisone, frankincense and Artemisinin) we’ve already had Ken Bowden came to take me to the de Vries home for a sauna then rain-water shower, but since Barbara has had to go to some cardiologist appointment, I’ve decided not to go- we felt I should be observed from the moment I take the protocol. Now this loss of feeling in my left hand is along with loss in my entire left lower arm- it was obviously going last night as well, because I was holding wee Eva in my lap, supporting with my left arm. She began to slide off and I couldn’t feel it and she slid out onto the floor, mostly head first onto the tiles. She didn’t appear to be hurt for there was no mark nor was she crying in that really painful or distressed manner. But it was so unnecessary. One of the weird things I need to do is scrape my tongue each morning. Someone bought a purpose built scraper!
So I do the scrape then swish a tablespoon or so of hempseed oil all over and between teeth. When I spit into sink and rinse down the drain, I am glad it’s not going down my throat. We’ve all, especially Genevieve and Barbara, been on the phone non-stop fielding so much information, tracking down items for my diet and making appointments and searching all other options. Zach arrives soon, and I do hope I can shuffle out to the car to go meet him! Yes, we met Zach off the plane from Auckland-it is so good to see him, all the way from Peoria, Illinois via Nashville (to get more of my protocol from Ty) then Chicago, LAX and Auckland. He said it has been the tightest trip he’s ever had- so little time for connections at each airport. Fun seeing Zach meet Genevieve, Pete and the children plus his other siblings, Charmagne, Jeremiah, Jed, Kaitlyn and Grace. Big Al should be here tonight again. Off to see a Vit C intravenous Dr, here in PN, Dr Willis! Someone fished out one of Granddad’s walking sticks for me, and Zach drove Barbara and I out there, then to Dr Minnee who has been trying to get us into see Dr Chan an oncologist. Dr Chan was keen for me to have the biopsy, but I am personally against having one. So back home- where Genevieve has been fielding all kinds of phone calls. No one has the time to read through and respond to all the emails and Facebook messages. Genevieve does try to follow up all the leads and ideas people give us. She made up a medication schedule for me and posted it on the wall so whoever gives me whatever medication can sign against it as having been done. We found a radiological oncologist in Auckland and spoke to him trying to ascertain his practise methods and see if they would harmonise with what I’ve learned from our USA Dr over the phone. Our USA Dr is the one who developed the protocol we’re following, so we want to stick as close as we can to our USA Dr’s recommendations. Dr Minnee had spoken to an oncologist here in PN who really wanted us to go with the conventional practice- biopsy, chemo and radiation. Well, tonight before tea with all the family around I formalised the decision not to have a biopsy which means not following the conventions. It is possible that we may be able to get some radiation treatment without a biopsy, but it is not certain. Everyone was happy with that. Turned on some video cameras and I talked to the families gathered, encouraging the parents to do what is right always, invest in the children, be anti-social, let them call you a poor citizen, your first job and duty is to raise a family for Christ. It was a precious time. Alanson kept proceedings moving so we didn’t stay up all night. Barbara hit the hay early as she was very tired. Char is going to wake me at 3:00am to give me the protocol at the right time. How wonderful is that!
Tuesday 9 August 2011 Wake up as normal- having slept like a rock- slightly chilly on upper arms since blankets tend to fall off. Poor Barbara’s feet were cold all night a couple nights ago. I’m usually aware first thing in the morning of this wee niggle of a headache just above and behind my right eye. It’s been there over a week and does not really qualify as a headache- but it is in the general vicinity of the tumour, so may be there is a connection. Managed to wash my own hands with the special soap provided and the squeeze bottle of special water- that was a bit of a trick, though! Zach and Jeremiah went out on Truck run this morning. Barbara and I wandered off to office to weigh ourselves. I’m carrying my left arm as if I’ve had a stroke. Left side of my face is drooping and it feels like it too. I feel numbness in my tongue and gums and inside cheek – even teeth! So I got through the regime of tongue- scraping and first set of medications without food. Jessica Rademaker is here to juice a ton of carrots for me! Caleb came and sat next to me, so I started encouraging him and praying over him. Pete started filming. So nice to think about potential future of these dear children. So Charmagne is feeding me original creations that look good and taste nice too but are made with things most people would not consider using, as a general rule.
It is like a military command post around here – several commanders have well-defined tasks and a team to help. And to see all this activity progress so harmoniously is such a joy! To then realise it is all to treat my tumour is so humbling! I just overheard Genevieve describing this scene as “so pleasant to be working together and enjoying each other’s company,” and so it is. I spoke to our Dr in the USA this morning and he is keen to see us get some top-class radiation and keen even if we could get surgery to reduce the size of this tumour. So Barbara has been on the phone all day to oncologists and neurosurgeons- and getting quite stroppy with them, asking them to please think outside the box and consider doing what we’re asking. I really don’t want surgery, but if it can be done here quickly, I suppose I’ll acquiesce. Radio therapy may be hard to get, but probably easier than surgery. Jeff rang about 4:15 and we had another great talk. He said he liked one of Barbara’s recent posts- it really moved him. He was happy to hear that she was getting stroppy with the doctors, “Hey if you don’t ask, you don’t receive”, he said. He’s off to his position as “ball guy” with the San Francisco Giants tomorrow- that will be so much fun! This “Command Centre” scenario I mentioned earlier, of how each member of the family is working as part of A well-oiled team, all committed to the same vision. They each have their own gifts and talents and are using them as needed. It has happened spontaneously. No one needed an MA or PhD or license- they just step in and others defer as needed. It is the ultimate in home education: here we have a real-life situation, a life and death situation, and the children are not sent away, they are given a job!
Listen dear readers, dear friends- I am sure that this tumour is most likely a result of slothfulness in personal eating and exercise disciplines. After 50 years of pigging out on the 4 food groups: the doughnut group, the burger group, the potato chip group, and the soft drink group ………plus coffee, well, this plus not enough exercise has most likely led to an environment in my body rich in fats, sugar, and carbohydrates and low in oxygen. From what I’ve read, that is a recipe for cancer. And I’ve been in that situation for about 20 years from age 40! No good. Read “Cancer: Step outside the Box” by Ty Bollinger, a Christian home schooling friend of ours who resided here in NZ for a short period of time. In addition, if any of you ever are struck with something like a terminal, inoperative cancer, in God’s Providence, as I have been, there are two things I say are essential.
First, please seek the Lord and settle accounts with Him. The only way that is accomplished is to lay your whole life down- body, soul and mind- on the altar for Him to take up and use as He pleases. That is, give over your all to Him so that He calls the shots in your life, not you yourself. In a crisis, when you’re desperate to do it, the mind doesn’t work as well and you also may not have the time. So please bow before Him now.
Jesus Christ is the Way, the Truth, and the Life.
No one comes to the Father except through Him.
I’m sorry, that may seem rather exclusive, but it is the Truth, and truth unapologetically excludes all falsehood.
Second, research and read up on alternative medicines, health care and foods. There is a huge amount of very interesting, interlocking and at times intricate information to absorb. And if you are suddenly given 3 or 4 months to live, let me tell you, you will ALL OF A SUDDEN want to know ALL ABOUT ALTERNATIVE health. Please, start reading now! You see, we read Ty’s book a few years ago. Barbara’s mum came down with cancer 25 years ago and eventually died. Well, we started reading about diet and herbs back then and when Barbara was ill, so ill earlier this year and last year, the research and diet she was doing then (which got her all better, by the way), has set us up for now. People all over have been so incredibly kind in sending us articles and information and web-links and actual supplies. People did the same 25 years ago for Barbara’s mum. She turned to the Lord at the eleventh hour, praise His name, but she turned down the health food, for she wanted “quality of life” as she was used to. Well, I’m convinced I’ll be on this diet (basically the “Hallelujah Diet”) for the rest of my days. Again, I am not convinced I’m going to be healed, for that is solely in the Providence of God whether I get better or worse, live or die. And so I pray I will be totally healed and restored physically, but try not to presume upon God’s sovereignty, for I want to embrace His will, whatever that may be. I mentioned to Zach and Alanson that when Josh arrives, all these husky men may want to go out and indulge at someplace like “Lone Star” (outrageous, isn’t it?). The thought was obviously playing on Zach’s mind, for he just walked into the Command Centre here with a 6-pack of coke!! None of us could believe it!
Angelo and Rufina brought around tea for us! Indian curry! Everyone is over – the – moon! I can’t partake, but everyone else hoed in with great gusto. I had barley green and juiced carrot and a salad of lightly steamed kumara and carrot with a dressing of olive oil and I think coconut oil is in there somewhere. Alanson had to go teach catechism and returned from church with three cakes people had baked for us! We sat around the table after tea and talked about babies- this is my two married children with another listening in! What fun this is being surrounded by family- I see bright futures, Christian reformation and revival all over the place!
Wed 10 Aug 2011 Slept like a rock again. Left hand has increased numbness, especially thumb and first two fingers. I cannot do buttons. Lips, nose and even teeth feel numb. I cannot say rest of me is any more numb than before. Still have strength and a bit of coordination, though the coordination is less. Plenty of greens, juiced carrots and tablets. Had appointment with Dr Chan, oncologist at 11:00am. Barbara was working the phones tracking down how Dr in USA might get access to NZ health files to view MRI directly. Dr Chan was incredibly helpful and willing to work with us and our weird requests. He pushed the professional envelope quite a ways for us, it seemed. So back home to ring Dr in USA and tell of Dr Chan’s open door to Radiotherapy. Great call to Dr – he says we’re like family. He encouraged us to consider extracting my root canal tooth, so we began investigating that. Got a referral to Dr Leong, (who got the X-ray from Dr Kestere) then did the root canal. He understood the strategy: remove a hiding place for bacteria (a dead tooth, that is one that has had a root canal.) So that natural immune system is not sidetracked by that bacteria and will focus on cancer tumour.
So Dr Leong did the deed in quick time with virtually no pain. He also gave intravenous hydrocortisone, having looked at our medical regime, and that should help any swelling of brain. The USA Dr is concerned about any swelling of the tumour which may come as a result of the LifeOne protocol and of the tumour growth itself and also due to whatever radiation treatment I may receive. The Dr wants me to stick with hydrocortisone, frankincense and artiminisin for swelling and not to go near the dexamethason that doctors here are all suggesting. We tried ringing the Dr in the USA so Dr Leong could speak with him, but no answer. Got stitches where tooth was extracted and also removed 5mm piece of old root tip from another extraction one or so years ago on other side (my gold-crowned tooth) – I still have the gold crown- it has to be worth something!
Back home to the big family group– so nice to be part of.
I want to say again, dear reader- seek the Lord Jesus Christ and through Him be reconciled to God- do it now! Let me tell you, when the Dr gives you months to live, you are going to want to know all about heaven and hell and how to avoid one and ensure the other- you will suddenly become acutely aware of your moral failings and inconsistencies and apologies left undone and thankyou’s left unsaid and debts owed- and a gnawing doubt about what is going to happen to you when you wake up on the other side of the grave in a very few months time. If you are not firmly secure in Christ, I reckon you’ll go into an emotional and psychological tailspin and crash and burn in quick time. Now I have not had a flicker of doubt about these things because the Lord took firm hold of my life, my heart and mind back in 1974, about April, at a Crusade in Christchurch Town Hall where Tom Skinner was the speaker- I was nailed to the wall intellectually and spiritually by the Gospel, and totally convinced about the truth of it and most importantly I understood that Christianity means you are converted into a Christ-one, Christian, belonging to Him, not to self, not to parents, not to the state. What liberty is this! Christ is boss, He, not me, calling the shots. I was certain, and have been certain ever since, that I would not make as many errors, with Him in charge. What I discovered was that when I did make errors (some would say “bad choices”; but no, these are really “moral failures” not “bad choices”, for if you know this is right and that is wrong or if you even have a doubt about something, it is a moral failure to proceed, just as the Bible says: whatever does not proceed from faith is sin- it means if you do not have the faith that the Lord’s Word on a matter is all you need to know, if you’re willing to take a chance that the “thrill” of doing this thing is worth gambling on whether it is morally wrong or not, then it means you value your life too little, the soul God gave you too little, God’s Word and His integrity is also valued too little- a real death sentence, in other words. Anyway, since that day in 1974, I’ve never had a flicker of doubt about my salvation in Him and that whatever He brings my way is best. Life has been hard at times- I’ve had to apologise a lot and make restitution where in the old days, without a Christ-sharpened conscience I would have ignored the situation and not let my indiscretion bother me. Since becoming a Christian, my indiscretions are a real pain, and I am compelled to do all I can to fix them up and also to eliminate their occurrences. So dear readers, please do get your soul saved by Christ and deal with your fate on Judgment Day now, while you can do so in peace, for should God bring you to a day of crisis, so many other considerations will be pressing upon you, you may decide to sort your possessions when you really should use the time to submit to God- so please come to Christ now! I would have been a mess if I had not had total assurance in this area when the doctors told me I had only a few months to live, as they told me just the other day, 4th and 5th August 2011. And start reading up on all the alternative health stuff too!
Thursday 11 August 2011 Great sleep again last night. Yesterday I went out to John and Wietske’s place for a hot rainwater shower! That was really nice. I felt like 100% afterwards. Today I find I need help toileting and getting dressed. Barbara has been great looking after me in this area as well as administering extra health measures at the same time. Zach is my personal aid, staying close to help me walk places. So I’m trying to talk to him about important things and stories of family.
We are going to sort through my dresser’s top drawer plus my stamp and coin collections to divide things up today. Dr Minnee called in. So did a lady from the Palliative care services. I am now signed up with Palliative care. Jeff rang from California and we had another great chat. We are all praying for Megan and the baby- that it would wait for Zach to return to be born. And for Sue de Deugd, that her operation would go well today. My 3 sisters are probably started on their journeys here. See them tomorrow in the morning. Spoke with my Dr in the USA again this morning. We’ve posted both sets of MRI images to him, so Lord willing, he’ll have those images in a couple of days. He has upped my cortisone- hoping that if swelling goes down, I’ll get back more feeling. In the meantime, Palliative Care via Arohanui Hospice will get us a couple of shower seats and maybe a toilet seat and wheelchair. It is becoming as if I cannot move because I cannot feel enough properly on any part of my hand or arm to know where it is and how to get it to the next place. Had some talks with Barbara, Genevieve, Pete and Zach about who might need to make executive decisions about the house hold should I become unable. Barbara has all the power of attorney documents- this is about more immediate personal disciplinary issues. There is no way we could cope with all this without the support and help of the family. And then the church has been fantastic. And then so many friends from all over. It has been amazing!
Went through the top drawer and dispersed a few items in there. Put some aside to go over with the sisters tomorrow. Jed collected most of the nest! Then we went through my coin collection. Re-discovered a cache of old U.S silver dollars that my Grandmother Genevieve had left to Genevieve. Genevieve remembered them too, and was glad to re-take possession. I tried to point out other items I thought were financially and historically significant. Zach may inherit these as all others recognise him as most interested.
Friday 12 Aug 2011 Barbara’s 60th birthday. Slept very well. So many family members around breakfast table for devotions- so nice. Steven Sandbrook is here as photographer. Went out to airport to meet Susan, Sally and Stacey who arrived at 9:20am. We were a bit late and caught them about to hire a cab. Great to see them! And so fun, when back home, to see my sisters meeting their nieces and nephews and great-nieces and great-nephews! This is so much fun to see so many close relations each time I raise my eyes! Went to see Dr Chan about Radiology treatment, once we got the story straight (we had misunderstood him yesterday) we rang our USA Dr and came up with a plan. So I got a CT scan right then and they made a mask for me. I’ll start radiation, low-level of whole head, in about 2 weeks, swelling to be controlled by hydrocortisone. Dr Chan is now treating me Palliatively. Back home we looked at photos and family heirlooms. Jeff rang. The sisters were taking photos flat out of these little de Deugd babies, “Gerber Babies” they’re so cute. Zach, Pete, and Alanson are great keeping close to me if ever I walk somewhere. Got a bunch of photos copied for sisters. They had some gifts for us. I tested my waters- I am very alkali which is what we want- cancer thrives in an acid environment, apparently, so this diet is meant to make me alkali- and it is working! Popped a few big bottles of bubbly (appletise and such) for Barbara’s birthday. The big task for me each day is to eat and drink through all the health food I’m assigned and take all the medicines I need. The Lord is clearly keeping this tumour from doing the damage one would expect.
Saturday 13 August 2011 Took Zach to PN airport for 8:30am departure. But Auckland was closed, due to fog, so Zach’s flights are all messed up. Came back home for Zach to sort out his flights and to have breakfast – a vegetarian gruel that looks like yoghurt and nuts, but is full of sticks! Tastes of blueberry, and is dairy-free. Alanson fixed a clock to the wall so we can all know the time. He is also going to install a heat transfer pump in the attic to take fireplace heat from lounge to our bedroom. Thanks to all who have made the many suggestions- we note it all. The Dr in the USA said it would be suicide for me to get on a plane to come visit him- 13 hours at 30,000 ft would play havoc with my brain and tumour he said. So we are not considering a flight there or to Sydney just now. I do hope to be in Ballarat, near Melbourne in late October for Charmagne’s wedding. Zach managed to get some flights sorted for tomorrow, so we’re glad he can get home hopefully before that new baby arrives.
As I’ve tried to indicate, a crisis such as this aggressive brain tumour, stage 4 cancer, terminal and inoperative they are calling it, really requires quite a crisis team to deal with the large number of issues: diet, (research, purchase and preparation); care (walking, dressing, showering, toileting); transport; shopping; fielding phone calls and visitors; medicines –someone needs to keep track of what’s what, when it needs to be taken,, what dosage, what is with meals and what is OK without food – and do any conflict with anything else. And who is going to make sure I’m getting it all correctly and on time – and who is going to bring it along if we go out anywhere. It is all a real logistical exercise.
This afternoon Alanson had a game of Rugby League. He plays for the Ohakea Magpies. So we all drove to the stadium on Fitzherbert Ave near Girls’ High. Kickoff was at 2:30pm. It was great fun watching the Magpies trounce the other side. Josh helped us understand the game from time to time, but he and Charmange were mostly otherwise occupied. Charmagne carries and administers all my medicines plus carrot juice. Consequently, I’m drinking a lot so have to make these sudden dashes for the bathroom – It is an extra challenge at public venues as Barbara cannot go in to help as she would at home. Well, I managed OK today with Zach’s help. Back home we got ready for a roast dinner. Somewhere along the line Josh described to us what the Australian Light-horse infantry is and was and their part in the wars. It is very interesting.
Had a ball over tea – more lamb chops – telling stories of days gone by – several on fox hunting in the UK and in Oz. Sisters said bye to Zach and he’s off to USA early tomorrow, Lord willing. Kaitlyn and Grace really enjoy their new Aunties Susan, Sally and Stacey and the Aunties really like them.
Sunday 14, Aug 2011 Another good sleep. Took Zach to Palmerston North Airport and he got away this time. We talked of some of the big wig publishers he gets to meet in his work. So good of him to come here. May the Lord bless him and Megan and that new baby about to arrive. We talked of possible names too!
Back home to breakfast? and prepare for church. I always have stuff to proofread (every time I sit down) before it goes onto the web site. Then I try to write new diary entries. There seems no end to work on everyone’s plates. Between proof-reading and writing, I have read a few of the letters, cards and emails that have come in. Got Zach to airport and flight was on — he seems to have all the connections lined up well too. And Megan is in the picture, so we’re hoping the Lord will deliver the best to them, as is His usual way. Pete and Genevieve and 3 children, Josh and Magne and three sisters came to church. Lord’s supper this morning, so some had to have a chat to elders first. It all went well, great sermon and the fellowship lunch after was its usual friendly fun self. Lots of comments about Al’s black eye (from rugby yesterday) and of meeting the sisters and how nice it was they’ve come over. Charmagne had a meal organized for me to eat, so I munched on shredded veggies tumeric and cayenne pepper with olive oil while everyone else enjoyed the pooled smorgasbord. Lots of saints came and said “hi” — so nice!
Jeff rang when we got home and we talked of Uncle Les and the one or two war stories he’s told to Jeff. I continue to feel really well — no headaches, no nausea, as one would expect with swelling or tumour in the brain! It is fun to see little ones do as little ones do — such as Caleb walking into the house covered with mud all over his church clothes. Sisters are staying home, maybe to talk with Genevieve and babies while rest of use go to church.
It is always good to be part of the worship services at church – we really love the orderliness, the reverence, the hymn singing, the litergies and the solid preaching. And of course the fellowship is so encouraging. Before going to bed we worked out who was doing the truck run in the morning and what time to leave to meet the Ketchens arriving a PN airport to take up 2nd preaching post at our church.
Monday 15 August 2011 Up and away to PN airport in time to meet half the church also there to greet the Ketchens. Everyone was so happy to see them and they were truly so happy to be in their new home town. Mrs Ketchen was actually born here, so her parents and grandparents are here, so the children were coming home to the grandparents. It was cold with thick cloud and snow all over the hills. Went home and looked through a bunch of photos I had with the sisters – some wanted copies of certain ones. So Jed would take care of that. And he burned discs with loads of photos taken around here the last few days. The team is still at work looking after logistics of my medication and food plus catering for guests. It began snowing this afternoon, more like sleet, but it started piling up on surfaces, so looked good. People in town were apparently coming out of shops to stand in the falling snow! It is a rare happening here in PN. Same happening in Dunedin and Christchurch too, we hear. Jed, Kaitlyn and Grace got to make one or two snowmen in the front yard with attendant cold hands!
Making a snowman and getting frozen, painful hands is one of these necessary childhood rites of passage. Stayed cold all night.
Tuesday 16 August 2011 Feel fine but wish my left hand had more feeling. Came out to the conservatory to sit in the sun. Got Jeremiah and Jed to go out and collect firewood in the truck while I sit writing diary here. Pete and Genevieve need to think about returning and Josh, Char and Alanson also need to get on with going to Oz for that conference in Canberra. I’m planning to go to Oz in late October for Char and Josh’s wedding, so trusting the Lord will have me in shape for that. Then I’d also like to fly to LAX, rent a car and drive to Atascadero to have Thanksgiving with Mom and the sisters then drive up to see Jeff and Bobbie in Sonora. I’ll almost need to be cured for that to happen.
Took Susan, Sally and Stacey out to PN airport for they had been warned to get out (to Auckland) before the weather got any worse. So saw them off on two different flights to Auckland. They are confident of connections on to San Luis Obispo and Vancouver.
Back home for tea, I had more curry with roast lamb- so good to have meat and curry! Jed is composing a letter to plead his case to get a drivers license early plus collecting character references to back his case. It would be very handy him getting it early. Tonight we’d like to watch one of a couple favourite videos and have a Family planning meeting to sort out these imminent trips to Australia. We missed a call by a district Health nurse and Jeff’s phone call when out at the airport with the sisters. As soon as Alanson returns from Catechism, we can have this meeting.
So Magne may leave Friday, Pete and children Saturday, Josh around Friday. He and Magnie would visit preacher, photographer, caterers etc, to nail down wedding details. Could stay with de Deugds. Alanson goes over on 23rd or so and may change depending on how much changes are going to cost. Talked of logistics of all this including Magnie showing Barbara all the tricks of the trade in feeding and medicating me. Barbara is overlaying all this with expected condition I may be in at all these times.
Discussions led to something like- Alanson not going to Oz, Char and Josh staying, and visiting an Australian official in Wellington, soon Pete and Beef going back home, though GB may stay on here for a while yet. Never watched a video, but no one is off to Australia now any time soon.
Wednesday 17 August 2011 Slept well, feel really well- nothing getting worse. Dr says maybe cortisone is keeping swelling down allowing tumour to grow more unnoticed. Maybe. Went to Dr Willis today for intravenous vitamin C. Also got more blood tests for USA Dr. Michael Huizinga came for a visit – so did Gerard and Janny Minnee – Gerard is still recovering from a major surgery. It was good to pray together. Went to John and Wietske de Vries for a hot rainwater shower. That was nice. Back home to an organic chicken curry! Yummy! Alanson was re-doing the wiring in the lounge preparing for this heat – transfer system.
Many hands doing dishes and tidying up before we settle in to watch “Three Amigos” with a knowing thumb on fast forward at a couple of places. So much of the Mexican culture displayed in this flick is just what I grew up with in California. And Genevieve has even gone out and brought chips and coke – a family tradition when watching videos. It is a tradition that will die, for that kind of food contributes to cancer and other negative health issues. But tonight is a nostalgia night for Genevieve and I – although I just watched and did not partake of the nostalgia.
I so enjoy remembering my Mexican friends and the “manana” world view that they had – nothing today was allowed to furrow their brow- put it off until manana (tomorrow). They would work really hard to gain the immediate objective, and if that meant a fat pay-packet, hey, let’s party! Always so generous and personal relationships were important, so blowing a wad of cash on a party makes sense. I had gringo friends who, like me, were duplicious and would take advantage of you. My Mexican buddies were never like that but so open, honest and simple- what you saw and heard is what you got: Always the genuine article. I learned enough street- Spanish to rib them well, but they would always correct me if I went over the top or was rude to a senorita. A racist slur in those days (1960s) was to call a Mexican a wet-back, insinuating he had swum across the Rio Grande to get into the USA illegally. I could even call my Mexican friends wet-backs and they would call me a “………” gringo with the blank filled in with all manner of evil adjectives. One day about 6 of them rushed me, threw me to the ground and pretended to give me a genuine gang beating, with lots of kicking and stomping. Then they picked me up, carried me to a nearby mud puddle and threw me in. “Now, you can be a wet-back too” they said, and from then on I was known as an honorary wet-back and was even introduced as such. I loved it! They elected me captain of the cross country team and also later elected me captain of the wrestling team.
Steffen Akkerman came for a visit and shared some verses from Romans 8. We had a really encouraging time enthusing over those verses, they are so good! Once he left, we settled in to watch the video! Laughed and commented at our usual favourite spots. (Barbara slept through most of the video.)
Thursday 18 August 2011 Slept well again and up without a headache or nausea. If pressed, I’d assign a value of 0.5 to the niggle of a headache on my right side just above the eye. But it has been there for the best part of 2 weeks. Off to a med lab first thing for blood tests after the intravenous Vitamin C of yesterday. Back home, Genevieve sat me down to start a project doing a bunch of one-minute YouTube clips on home education. This is so much fun! My favourite topic. More visitors today. After lunch of a mountain of organic rabbit food, I’m off to a dentist to get these stitches out and Josh and Char are getting marriage documents notarised. And do some wedding ring shopping. Stitches came out just fine. So that chapter is closed. Came back and sat in sun in the conservatory. Physio nurse came to set me up with a sling for left arm and a walker. Decided walker was no good for me as left hand could not grip sufficiently. She taught Barbara a couple techniques for helping me up out of chairs. Very helpful. She hopes to return with a more comfortable sling and a more steady walking stick tomorrow.
Alanson is making great progress on this heat transfer system, installing the wiring in the walls and ducting in the ceiling and attic. The hardest task for me each day is eating through all the organic veges, swallowing the pills and dashing to the toilet so often due to the gallons of carrot juice I’m drinking. Watched some of those home education videos I am making.
Friday 19 August 2011 Another good sleep. Ploughed through tongue-scraping routine then the “tapioca” looking breakfast that is actually chia seed soaked in water plus cinnamon and nutmeg plus blueberry for colouring, topped with walnuts. Looks nice and tastes nice. Everyone else is into Magnie’s great home-made muesli, but I’m off any dairy. Physio came to fit new sling and give me more stable walking stick. She also ordered a type of brace for my left ankle and foot plus a heavy-duty slipper- type boot. Should have that fitted later today. We are also investigating my life insurance policy – some pay out upon diagnosis of a terminal condition which is what I have! Also trying to get me set up for more short film segments on home education. It’s tough because I keep dribbling green stuff down each new shirt due to large volumes of carrot juice and barley green that keeps coming my way. So at filming time- “Cut” – “change the shirt!” We managed to get a few more filmed. Genevieve writes out questions for me to address, then starts and stops the camera with signals to me as to when I can start and stop speaking. It is going well. Rang my USA Dr and had another good chat. Will start reducing cortisone tomorrow. Alanson has finished the heat-transfer installation. Kaitlyn started up a chocolate chip cookie business – She and Maree Sandbrook go into the square- Maree busks with her cello and Kaitlyn sells cookies! Decided that if I’m to eat meat, it needs to be in the morning, not at night, to keep my Ph level more alkali at night. Jedediah had some printed extracts from the Land Transport Act outlining a way he may apply for a limited licence to drive the truck for a while. Hope to sort that out Monday.
Saturday 20 August 2011 Great sleep – no headache. I’m still quite unsteady on my feet so give Barbara a number of frights throughout the day. Received some lovely cards and emails today – some folks are so generous! Watched Alanson play Rugby League for Ohakea against Foxton. I cannot follow the game’s action. They said Foxton won. Barbara took me to J & W de Vries for a hot rain-water shower. Really nice, but it is quite a performance getting dried and dressed, even with help. We hope to have a family meeting to plan for contingencies in relation to Josh and Char’s wedding – if I do get better and if I don’t. And we also need to work out a timetable by when we need to know whether I look to be improving or whether we need to seriously consider that this tunour is probably going to kill me.
And we want to schedule in a new MRI as well. Comments on Facebook (CraigandBarbara Smith) today are apparently very favourable about the home education clips on YouTube.
Renton Maclachlan even rang to give Genevieve a few tips on how to get the filming looking better! (watch for the filming that goes up Sunday with the new tips) Genevieve has brilliant ideas.
Sunday 21 August 2011 Number 3 headache behind right eye. My USA Dr said Excedrin would be OK. Began talking about moving wedding to New Zealand and bringing date earlier. The Reformed Church of Palmerston North are all keen to put on a good party or them. And Rev Flinn is ready to officiate at any time. So we’ll confirm a new date soon with Josh’s family and run with that. Got to talk to lots of dear folks at church, many say that the diary we’re putting on the internet is very encouraging. So good to hear. We keep a urinal bottle close by for it is by far the easiest way to relieve me when the urge strikes…and there’s no holding it back. Just clear the room and position someone at the door. A bit embarrassing, but effective.
By putting carrot juice in standard long-necked bottles, I can drink the whole thing without dribbling down my front. My lips can handle the bottle top, but they can not seal properly on a drinking glass.
Sermon this morning was on Jame 4 – very appropriate- we must not presume to know the future “If God wills” is the right way to make predictions. And this is how I see this entire tumor scenario – ” If the Lord wills, I will recover, and if the Lord wills I will not recover but will probably leave this earth. I reckon I win either way! But the Lord’s will is always best and Romans 8:28 assures us it is all for our good! So whether it be disability, recovery or death, I look forward with a degree of excited anticipation. Our new preacher Nathan Ketchen delivered his first sermon here this afternoon, looking at Matthew 9, the healing of the man born blind — fascinating to see the persecution that just comes as soon as you give God the glory. It is part of discipleship, count on it, don’t be phased by it and just get on with the job.
Rang the dr in the USA for another great chat, He has not just taken me on as a patient, he speaks to us as members of his family — so nice and very encouraging.
My brother Jeff rang and we had another great chat –this time about our US Indian-head penny collections. Jeff got me to tell him which ones I’m missing as he may be able to send me them as he has so many extras! Wow!
So Charmagne drove Josh down to Wellington (actually Josh drove down and Charmagne drove back) to catch his flight back to Hobart.
Monday 22 August 2011 I fell out of bed last night – left arm fell out and just plain dragged the rest of me out with it. I cannot sense myself sliding and left arm cannot take propping position to prevent it, so I was a goner. No pain, no hurt just indignity and embarrassment. Also bit of a headache behind and above right eye. Rang Dr. in USA with all my vitals and developments – more Hydrocortisone reductions today. Pete took 3 grand children and Genevieve, drove them to Wellington to fly away back home to Coghills Creek near Ballarat, near Melbourne. Genevieve and baby drove back to help out here. Starting to get empty and quiet around here and our right-hand men and women are vacating, too. Sad to see them go. Lot’s of good Facebook comments about Home Education video clips. Requests for same on topic of adoption. we can do that! It is all such fun.
I can hear Jed outside using the circular saw to cut up a bunch of old pallets for firewood. The sound helps me see the sawdust fly. I can smell the the wood and feel the weight of the slabs in my hand. Man, it is all good honest work, throw a few of those slabs into our log burner and they burn hot and fast! In no time the burner is roaring loudly and poking out a lot of heat. If we want to add a macrocarpa log it catches alight with no problem.
Ken Bowden took us to Vitamin C infusion, so we got to talk a bit while I was mainlining Vitamin C. Got to share one of the alternative cancer treatment books we have with the Dr. and nurse. She has talked of us with a friend of hers with cancer and the friend has been encouraged thereby to try Vitamin C infusion herself. Ken came home and prayed with us. Angelo came around with tea for us! Yum Indian – but not for me! The Church family is such a blessing in many ways! Alanson finally finished the ducting system. We had a family meeting to work through the logistics of changing Charmange’s wedding from 22 Oct to 10 Sept. We identified the main issues and what and who would do them,worked well. Another meeting planned for tommorow night!
Tuesday 23 August 2011 Another good sleep. Small headache this morning, so Barbara decided to up the Hydrocortizone dosage a bit.
Got a phone call from Zach to say Megan had a baby boy: Jackson Taylor Smith on 22 Aug 2011 about 7 1/2 lbs ( round about 3 kgs) black hair! So here is a Smith to carry on my Dad’s line: Dad had Jeff and I and Jeff had one daughter, so Zach is my first son to produce a son. It goes back even earlier: my Dad had one brother, Uncle Les and he produced 2 daughters and no sons, So it was down to Jeff and I. I make a big deal about this because Dad’s dad (William Oliver Smith was the son of Alanson Wesley Smith (who with his dad, Andrew Jackson Smith, believed on the Lord Jesus Christ and hoped to evangelise the Quilleyute Indians along the Pacific coast of the state of Washington around the village of La Push. When Zach, Alanson and I were there in La Push back in 2003, we met an old Quilleyute Indian man who remembered Alanson Smith and even more his Brother Harvey, and they apparently used to race the canoes up & down the river as kids, delivering milk & mail. Alanson Wesley Smith, son of Andrew Jackson Smith, indeed became the school teacher, Indian agent, preacher and post-masterof La Push. So he had quite an impact on the community. Alanson and Harvey had a sister named Harriet. She married one of the only non-Indian men in La Push, an early settler, named Dan Pullen. The Quilleyute reckon this guy Dan did a number of dirty deals on them. They eventually sued him through the courts. it broke Dan’s & Harreit’s finances. Harriet took off north to Alaska to seek gold in the Yukon Territory. She settled in Skagway, Alaska and set up an Inn called “Pullen House” which became The place to stay for all V.I.P.’s travelling through. She was known as the Mother of Alaska or Ma Pullen, especailly famous for her fruit pies. My Grandmother Genevieve used to tell me stories of going up to Skagway to stay with Auntie Pullen and help her make pies for all the visitors. She also had one of the best Native American artifact collections anywhere in the USA. The US Government would not purchase the collection outright, so it was sold by auction and is now scattered all over the USA. I remember seeing part of this collection and meeting a descendant of Ma Pullen at the Seattle World’s Fair back around 1965. That was fun – Grandmother Genevieve and my Mom were both there and this relation of Ma Pullen’s had heard of both of them and knew where they fit in the family tree. It really served to spark my interest in geneology.
Wednesday 24th August 2011 Another great sleep. Wee headache this morning. Got through morning routine OK. Zach rang again. Little Jackson Taylor Smith was born weighing about 6’ 14” and 19 1/2 inches long! He looks a lot like Cheyenh did.
Jeff rang. So nice!
Graeme and Anna Leech came for a visit. So did Renton Maclachlan—so we talked film techniques. Jed will sit with me and help me eat the bowls full of veges. And he will bring in a hen so I can pet it and talk to it. Poor Barbara has to help me each time I am busting. The sad fact is that there is unavoidable spillage so I’m a bit wet down there and I smell of urine. Genevieve and Grace went out shopping for Grace’s birthday, 6th birthday in two more days—they got all the forbidden items; chips and sodas! I still have to finish writing Grace’s Exemption application. Maybe this afternoon—we’re off to intravenous Vitamin C now! Renton came and helped wheel me in and out of the Vitamin C therapy. Back home—James and Leah de Vries brought tea round for us all! So I sit down to write up diary notes. It really is an effort to keep up to date.
Someone from physio came and fitted a plastic brace on my left foot and ankle to keep it from rolling over when I try to stand. The literature I’ve read on this intravenous Vitamin C and Barley Green drink is that they both go straight to cancer cells and kill them off. Met Pete Johnston of Air NZ days down at the Palms where I have the Vitamin C therapy. Hadn’t seen him in years!
Lovely comments in emails and letters such as how a family became firmly committed to home education because of our firm convictions about it. Others mention how good it was to see our form of family devotions. Let me say a word about that. Somewhere along the line I became convicted that I needed to lead the family in Family worship at least once a day. We just love it now and feel cheated and incomplete if we don’t do it. We often have worship 3 times a day, after breakfast, lunch, and tea. Apart from saying thanks for the food, at the end, I read a chapter from the Bible—following on from where we left off last time. Nothing fancy—just systematically reading along. I may add some commentary as I’m led to do so. And that often leads to further family discussion on all manner of issues. Then we sing from the stack of hymn books I keep at the side of the table. This singing has proved to be the best! It always lifts everyone’s spirits! After the singing, I lead in prayer next. We’ve used lists of requests or just the membership list from church—both have worked well. This simple format is so thoroughly ingrained now, that if I’m not here, the next oldest son just automatically takes up the lead himself! This is very gratifying! R and L van Wichen rang from Christchurch! And Ruth Harrold-Clausen from Sweden! This is all such a blessing. The worst part just now is poor Barbara having to help me when I’m busting—in the middle of the lounge full of visitors, in the middle of the med centre’s waiting room—out comes the bottle. I apologise, but Barbara says she married me for better or worse! She’s a hero and deserves a medal!
Thursday 25 August 2011 Things start early – Eva starts crying so both Kaitlyn and Grace start running around looking for ways to distract her. Jessica R is here for juicing carrots. I start in on tooth brushing, tongue scraping and hemp oil pulling. I have to down a few glasses of carrot juice and fibre cleanse plus assorted health pills, trying not to dribble down my front. Someone pops a slice of bread in the toaster. As I start to smell it, the mind races around wondering how on earth a slice of buttered toast with vegemite could possibly be imagined to taste so good as it does just now, I guess I won’t know for sure until my minders allow me to have buttered toast and vegemite. At present I have to just watch as other eat lasangne, chocolate cake, nasi goreng and various Indian curries. I plan to break all the rules at Magnie’s wedding. The Dr in the USA today said he was very happy with my situation – I should be far worse than I am given this type of tumour. More adjustments to hydrocortizone dosage. Talked to my Mom and sister Susan this afternoon and my brother Jeff called for a chat. Genevieve gave me an organic bierstick she found at the Organic shop. Very nice. Then I got some organic crackers spread with organic Almond butter. Very yummy. Barbara just said she’s going to watch me like a hawk at Magnie’s wedding. So I’ll have to find people to sneak food to me covered with a serviette.
Friday 26 August 2011 Gracie’s 6th birthday. Ian came up. I managed to get through all the stuff I need to do each morning but my shirt still looks a mess. Off to Dr Minnee’s to get get a prescription for a diruretic that should bring BP down and relieve the headache I’ve got today. If it works, we’ll probably skip the radiation booked for next week.
Jeff rang. Zach rang to say they got a birth certificate for Jackson, so they’ll now be able to get a passport for him too. So we went and got more intravenous vitamin C. That plus new diuretic sure makes me go a lot. Food arriving here at home. I might be able to sneak a plate of it. No chance. None of the children would take pity on me and Barbara had drilled them thoroughly on how Dad was not allowed any lasagne at the moment. So I munched organic veges all night.
Grace, Ian and I played cards so Ian could see how sharp Gracie is. Still plenty of carrot juice to drink, even at this hour.
(Craig wrote this on Wednesday 31 August. He has trouble with short term memory at the moment so he doesn’t remember a lot that happened over the last few days. Now that he can write again he will write his diary often through the day again.)
Saturday 27 August 2011 Woke up with bad headache, straight behind the right eyebrow and above the eye. Charmagne rubbed it with hemp seed oil which felt great. Palliative care came around and gave me a machine to pump in morphine and also a steroid for swelling. I reckon the oil and Magnie fixed the headache, others pointed to the morphine. Also had pain in lower back and a growing nausea. As soon as I sat up to help back I also threw up.
So I guess the Palliative folks would say the morphine and steriod would have fixed the headache and the back ache and nausea. Well, I reckon Magnie fixed the headache. Jed helped the backache when he got me sitting up and I vomited as soon as I sat up and that fixed the nausea. People who saw me today ( Wednesday ) commented on how much better I looked than on Saturday! So I must have been pretty low. I felt ghastly – no doubt about that.
Sunday 28 August 2011 Made it out to both services on Sunday with Alanson, Jeremiah and Jed guiding me all the way, but I was more or less walking with the stick. (while leaning heavily on someone else). Had a number of meetings with various doctors in relation to this morphine pump. Our Dr in the USA and we ourselves want it out. Took a bit of a battle that extended into Monday as one or two folk needed to check the legal implications. It came out at last.
Tuesday 30 August 2011
(Craig began the day with Genevieve videoing him. Here are the YouTube video clips:
Barbara organised a few men to come and manhandle me out of bed into the wheelchair so we could get down to Manawatu Radiology for an ultra sound of the liver to see if the high blood pressure was due to a clot there. The ultra sound showed nothing except a normal liver and kidneys. The walking I did with the stick to and from car was good (Craig was well supported by two men) – need to practice that more for going down the aisle. Got to eat some kumara chips and chicken for tea, very yummy.
Wednesday 31 August 2011 Great sleep – tiny niggle of a headache, so I got Magnie onto it with hemp oil. Got through all the morning routine of tooth brushing and tongue scraping and hemp oil pulling and eating all this vegetarian stuff, with difficulty. The carrot juice and barley green and fibre cleanse are all big challenges. Also to swallow down 6-8 large capsules or tablets – throw them in the mouth – take a swig of water and work them to back of throat without gagging on them. Then swallow them down in one hit. This is neither natural or pleasant. Hard work. Jeff rang and advised on how to BarBQ hot chilies and then sprinkle with chocolate powder to cool the heat without compromising the flavour. Tomorrow Jeremiah is off to Auckland for interviews to enter Police College. Very promising.
Please go to Craig’s diary page 2: 1-30 Sept http://hef.org.nz/about-us/craig-smiths-health-2/11309-2/
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