Thursday.
Over the last few days i have been contemplating many ideas of escape from my cell block. Option one, get hold of enough bed sheets for a rope, but left tool kit at home so not sure how I'd get through the window lock (still could ask Michelle to bring it back in). Second idea, leave disguised as a visitor, they are so used to seeing me in my stripped or tartan jammies that a good suit and hat might do the trick, and I could just walk of the ward. Third option, and you have to have this one, dig a tunnel. I like this one especially as I can hear diggers next to this block of the hospital, so maybe they could be bribed to assist, and if not their noise would be my cover. I have started collecting spoons and bags. Of course there is a fourth option, get release papers. I plan this one by becoming so healthy the doctors give in to my demands and let me out!
Before I had had a chance to work out the weakest bit of the floor to start the tunnel that is what happened. My counts were up to 2.5 on Wednesday, and my temperature has stayed down overnight. By the way last night I had Michelle bring me in a thermometer, lidl of course but digital, so I could ease my fever paranoia. Every time I got stressed and feared I was becoming Pyrexic, i.e. high temp, I checked it was still low and so relaxed again.
So this morning with the Docs it was all change to the treatment regime, "as long as today's counts show no nasties, then your off the antibiotics, and out of the door, no need to come back until next week!"
Oohh kaay, cancel the tunnel, return the spoons to the canteen, and lets wait for the blood result. Which came back late afternoon showing the army had been busy: platelets 85, neutraphils 4 point something, and the rest was "fine". Aff ya go laddie!
Brilliant so that's what happened, and I am on pass for now pending blood tests and further bone marrow tests, until next Thursday, touch wood assuming I stay healthy, I am not going to be at the hospital. A WHOLE WEEK OF FREEDOM!
So I left the hospital late afternoon. Back home I still feeling pretty shaken by the experience - I really don't recommend being locked in a room for a week, especially if you are immuno-deficient and then fed viruses. I was definitely still in battle mode for the rest of the night, but Grrrrrrreat to be home, ahhhh.
THANK YOU!
BIG thank you to everyone who has been visiting and sending messages of support this last week, and of course all previous weeks. I hope you'll forgive me if you haven't had a personal response. I had been checking emails, facebook, and the blog comments but then switching back into a lifeless bed bug/slug! Your support has been a great support and very often lift me at just the right time when stuff is getting me down, so thanks and thanks again! :)
I also found some messages on Patient Line yesterday too, (hi simon, James, cuznic and Jack!). Sorry I should have told you all - I've stopped using the evil PatientWhine phone system. Totally dude.
I am now at home. If your up for a chat, please now call/txt me on my mobile, skype, home number, or email me if you need any of those.
One maer time so were affa fine....
Dinne call me PATIENT LINE!
Thursday 19 March 2009
Wednesday 18 March 2009
prisoner cell block 6
Things are looking up today! Had no temperature since yesterday morning, and my white neutraphil cells were up yesterday to 0.5 (not enough, but a great start to recovery), and whatever this chest infection has been it seems to be moving on. So all that remains is to persuade the docs to get me outta here as soon as possible before I catch the next admission's ripe disease. I'd also like to be off the antibiotics too because there is a lot of c-diff about in both the hospital and the ward, and the broad spectrum antibiotics make you very susceptible to it.
Meanwhile, myself and my two room mates, are still prisoners to the infection control team's "protocol", which incidentally we have not seen or had any patient information sheet on - (I will be seeking answers about this!). We are STILL not allowed outside our room except once a day for a bath. Our room seems to have become our prison cell!
Anyway the good news is I am feeling pretty healthy again, and itching to return to Fittie.
After seemingly days of lying flat on my back semi-sleeping, sweating, or lying still trying to avoid another coughing fit, I now feel like I have some energy again. That normally means bad news for the ward staff, but they cunningly have me hemmed in, so I can't run amuck causing trouble today! I guess I will do a load more reading!
Meanwhile, myself and my two room mates, are still prisoners to the infection control team's "protocol", which incidentally we have not seen or had any patient information sheet on - (I will be seeking answers about this!). We are STILL not allowed outside our room except once a day for a bath. Our room seems to have become our prison cell!
Anyway the good news is I am feeling pretty healthy again, and itching to return to Fittie.
After seemingly days of lying flat on my back semi-sleeping, sweating, or lying still trying to avoid another coughing fit, I now feel like I have some energy again. That normally means bad news for the ward staff, but they cunningly have me hemmed in, so I can't run amuck causing trouble today! I guess I will do a load more reading!
Tuesday 17 March 2009
cooking with gas - scorchio!
This title refers to me, not the hospital food. I am managing to sleep in fit ful bursts, but temp feels so high overnight I just didnt want to move. So I had to force myself every so often to sit up and drink. This morning (6am) it is 39.6c, the docs are now changing my antibiotic therapy to the "second line option".
only possible good news is that there was a glimmer of activity from the neutraphils yesterday 0.1, so maybe they will now start recovery - i'll know more later.
in the meantime I need to concentrate on breathing stready so I dont chough my lungs out.
bahhhh not how I hoped to finish my therapy!
11am update: Well being lying still sweating away half asleep, for about 4 hours, and my temp has dropped to 37.7! The cough feels different too. So maybe have turned the corner - and maybe todays bloods will show I have some wee friends back again. Fingers crossed!
only possible good news is that there was a glimmer of activity from the neutraphils yesterday 0.1, so maybe they will now start recovery - i'll know more later.
in the meantime I need to concentrate on breathing stready so I dont chough my lungs out.
bahhhh not how I hoped to finish my therapy!
11am update: Well being lying still sweating away half asleep, for about 4 hours, and my temp has dropped to 37.7! The cough feels different too. So maybe have turned the corner - and maybe todays bloods will show I have some wee friends back again. Fingers crossed!
Sunday 15 March 2009
spiked again
Its 7:40 and very peaceful for a hospital right now. curtains are drawn but looks like a perfect day outside- I made a partition across my side so I could have some fresh air. (the others like a closed atmosphere).
I have been trying to sleep with my arms and knees as high in the air as I can. This is not something kinky but because the joints in my wrists and knees have become very inflamed and painful over the last 2 days. It is probably a side effect. No anti-inflamatory allowed on this treatment - only paracetomol. But they are still well painful - maybe I should raise them higher!
So I said peaceful, but that is between the interludes of coughing fits. We are all coughing like crazy when awake. Yesterday the docs were quite happy with our (i.e. the boys and myself in our locked down room) various flu like coughs and ailments, and thought we would all recover quickly. However, later on both myself and another patient had fever "spikes". In here if you go above 38C and are neutrapenic - there is an immediate action plan: blood tests and first line antibiotics.
My fever came on while Michelle was here (7:30) and hit 38.6c - so I tried to get the doc to factor that in! ha ha! By 9pm I'd had the blood tests,the drip stands were back, and was recieving 2 old friends back to my blood stream - gentamycin and tazocin. Fast work :)
But this is disappointing, as yet again I am now on a complex drug course which if my neutraphils do come back soon may stop me getting home for a while longer, lets see.
My throat is much more sore today, so its lucky I've been stuffing my face while it wasnt! I'll resort back to liquids for a day or two til it eases.
I have been trying to sleep with my arms and knees as high in the air as I can. This is not something kinky but because the joints in my wrists and knees have become very inflamed and painful over the last 2 days. It is probably a side effect. No anti-inflamatory allowed on this treatment - only paracetomol. But they are still well painful - maybe I should raise them higher!
So I said peaceful, but that is between the interludes of coughing fits. We are all coughing like crazy when awake. Yesterday the docs were quite happy with our (i.e. the boys and myself in our locked down room) various flu like coughs and ailments, and thought we would all recover quickly. However, later on both myself and another patient had fever "spikes". In here if you go above 38C and are neutrapenic - there is an immediate action plan: blood tests and first line antibiotics.
My fever came on while Michelle was here (7:30) and hit 38.6c - so I tried to get the doc to factor that in! ha ha! By 9pm I'd had the blood tests,the drip stands were back, and was recieving 2 old friends back to my blood stream - gentamycin and tazocin. Fast work :)
But this is disappointing, as yet again I am now on a complex drug course which if my neutraphils do come back soon may stop me getting home for a while longer, lets see.
My throat is much more sore today, so its lucky I've been stuffing my face while it wasnt! I'll resort back to liquids for a day or two til it eases.
Friday 13 March 2009
sensible isolation or lab rat?
Well I seem to be doing OK at the moment. But this IVAC treatment IS stronger than I gave credit for in the earlier cycle. Maybe i didnt notice it so much spliced between two methotraxate doses. So I am getting plent of rest.
Had a couple of bags of red blood yesterday which has brought me back to a respectable 96, and platelets are hanging on in the 20s, so may be able to last out without more transfusions.
However, I am now located back in the "room of four", and yesterday there was an odd turn up. An influenza outbbreak viral lock down was instigated on this room and two others following processing of a viral swab from a different patient, quite a few days before. What this means to me is that I am stuck in this room 24-7 with others who are all starting to cough away, and getting worse by the sounds of it. So I am trying to work out why I am HERE instead of breathing pure Fittie air. I feel like I have been recalled in while I am neutrapenic to take part in some madcap MOD experiment - how can this be the best solution for ME?
(ok, well I have a very patient doc and he's now convinced me its better to stay put. So I will!)
So this is me hanging in there, perhaps with a cold, for a few days more until the white cell come back. I hope they are back and put in a better appearance than we may expect from the other Whites on Sunday!
Had a couple of bags of red blood yesterday which has brought me back to a respectable 96, and platelets are hanging on in the 20s, so may be able to last out without more transfusions.
However, I am now located back in the "room of four", and yesterday there was an odd turn up. An influenza outbbreak viral lock down was instigated on this room and two others following processing of a viral swab from a different patient, quite a few days before. What this means to me is that I am stuck in this room 24-7 with others who are all starting to cough away, and getting worse by the sounds of it. So I am trying to work out why I am HERE instead of breathing pure Fittie air. I feel like I have been recalled in while I am neutrapenic to take part in some madcap MOD experiment - how can this be the best solution for ME?
(ok, well I have a very patient doc and he's now convinced me its better to stay put. So I will!)
So this is me hanging in there, perhaps with a cold, for a few days more until the white cell come back. I hope they are back and put in a better appearance than we may expect from the other Whites on Sunday!
Wednesday 11 March 2009
recovery time
wednesday. Very tired at the moment, this chemo is actually very powerful, just not as flash with its side effects than the other rounds. Hard to get enough rest even at night, but I am managing all the same.
Well I have had a good break at home, but my bloods are now right down so I am being recalled to the ward until I recover. No problem, but cant wait now until i am out again!
Martin
Well I have had a good break at home, but my bloods are now right down so I am being recalled to the ward until I recover. No problem, but cant wait now until i am out again!
Martin
Tuesday 10 March 2009
Sea legs or Chemo legs?
Tuesday: [current status - at home on pass until weds!]
A long while ago I traveled with a van from Cadiz to the Canary Islands. The first stage was quite a rough 2.5 day crossing through the Atlantic. We eventually stopped at the harbour in Tenneriffe for a few hours, great dry land! But when I stepped out into the harbour and the lower city - the land was moving! I had "sea legs". I was so used to moving on the boat that my body compensated now on land. I never forgot than, and the tapas for breakfast were very good too!
From 8 am yesterday I was finally detached from my IV machine buddy, this time we had been inseperable for 24hours x 7days. In another sense I was being detached ceremoniously from my planned treatment as there was only the spinal therapy to go in the afternoon. Thats a massinve thing - brilliant and daunting. Its funny, I always struggle when detached from the drips: I jump out of bed and stop, half way across the room, waiting for the bungee pull back!
Well everything necessary went to plan yesterday, the final spinal tap, and it was agreed I could go on pass at home until a review on Wednesday. At home we had an awesome meal last night, I think my mum could rocket into business with a full range of soon to be very famous fish pies if she wished!
Again though by night, my body crashed and just will not settle. Now that I am at home, with more comfort, and less fluids needing to be passed, I thought it would be easier. I guess I need to reaclimatise. I think I still have chemo legs! I was constantly waking expecting there to be something else, it felt invisible and abstract, knowledge, time, position in bed? Was it the lack of an IV? or just the knowledge of the end of my planned chemo plan? The very concept of just lying and then sleeping peacefully without "some prop" did not seem to work. I was constantly searching the bed for this abstract missing link! (i am sure Buttons would have helped - but he was off doing his own thing!). So I am likening it to sea legs - Chemo legs , and for sure like that in a day or two it will pass and I'll will be sleeping easy!
Doie Doie (Al Fraz and Stu)!
and good morning to the rest of you!
Martin
A long while ago I traveled with a van from Cadiz to the Canary Islands. The first stage was quite a rough 2.5 day crossing through the Atlantic. We eventually stopped at the harbour in Tenneriffe for a few hours, great dry land! But when I stepped out into the harbour and the lower city - the land was moving! I had "sea legs". I was so used to moving on the boat that my body compensated now on land. I never forgot than, and the tapas for breakfast were very good too!
From 8 am yesterday I was finally detached from my IV machine buddy, this time we had been inseperable for 24hours x 7days. In another sense I was being detached ceremoniously from my planned treatment as there was only the spinal therapy to go in the afternoon. Thats a massinve thing - brilliant and daunting. Its funny, I always struggle when detached from the drips: I jump out of bed and stop, half way across the room, waiting for the bungee pull back!
Well everything necessary went to plan yesterday, the final spinal tap, and it was agreed I could go on pass at home until a review on Wednesday. At home we had an awesome meal last night, I think my mum could rocket into business with a full range of soon to be very famous fish pies if she wished!
Again though by night, my body crashed and just will not settle. Now that I am at home, with more comfort, and less fluids needing to be passed, I thought it would be easier. I guess I need to reaclimatise. I think I still have chemo legs! I was constantly waking expecting there to be something else, it felt invisible and abstract, knowledge, time, position in bed? Was it the lack of an IV? or just the knowledge of the end of my planned chemo plan? The very concept of just lying and then sleeping peacefully without "some prop" did not seem to work. I was constantly searching the bed for this abstract missing link! (i am sure Buttons would have helped - but he was off doing his own thing!). So I am likening it to sea legs - Chemo legs , and for sure like that in a day or two it will pass and I'll will be sleeping easy!
Doie Doie (Al Fraz and Stu)!
and good morning to the rest of you!
Martin
Monday 9 March 2009
Diluted Dreams
So what happens when your peeing 10 litres a day, you take sleeping pills and bed down for the night? No, no, new sheets were not needed! Somehow I have a routine of sleeping or resting between each "hourly pitstop".
Last night I actually was sleeping, and the dreams i remember got pretty surreal even for me. The first dream knew about things: objecty peices or maybe even tasks or procedures that needed to be done hourly ish. The dream was convinced a Cabinette was needed to fit each peice together better, (maybe buying me pee time?), so I was set to scour the land to find one to fix the "peices".
Waking was a double relief to from this as it made no sense and I was time for a very full pot!
A second was equally abstract, but fading as fast as I try to record it. It was about surfing, windsurf boards and rigs were being frenetically adjusted to get myself and others out on the water, but that moment was not going to happen - it wanted me to wake and pee first!
I've been cheating and stacking bottles in the room rather than using the toilet - call it "on suite", but it helps when your clearing 7 pots after midnight!
Already I want to get up an prepare for the day (and breakfast!). The pump says "450" left - thats 2 2/3 hours to bag end (7:45) my timing has been on pump syncro over every night, it also means about 40 mins to next pee stop. Brain off now please, shut up! sleep!
Still only 6:30am: Pace yourself, pace yourself, rest, sleeep! No good, I've already counted the timer down to the blood test time (from 5 to 6 am). My nurse was bang on, but I was already planned to give them 30 min more (80ml) before I would have been in the doctor room having a script made out. We/I need standard bloods early today so that I can get out today if the whites are behaving! No accidental delays this Monday.
Last few nights have been getting some chest pain both eve and in early morning (4-6am), with tacky heart type rythyms. Am sure it'll settle again. I should be time to get some stairs in and maybe settle it before breakfast! A final 3 up 3 down with the IV stair cheildh!
So hoping for bacon and eggs, a spinal injection, doc consultation, easy home drug order and free pass today. wish me luck!
Last night I actually was sleeping, and the dreams i remember got pretty surreal even for me. The first dream knew about things: objecty peices or maybe even tasks or procedures that needed to be done hourly ish. The dream was convinced a Cabinette was needed to fit each peice together better, (maybe buying me pee time?), so I was set to scour the land to find one to fix the "peices".
Waking was a double relief to from this as it made no sense and I was time for a very full pot!
A second was equally abstract, but fading as fast as I try to record it. It was about surfing, windsurf boards and rigs were being frenetically adjusted to get myself and others out on the water, but that moment was not going to happen - it wanted me to wake and pee first!
I've been cheating and stacking bottles in the room rather than using the toilet - call it "on suite", but it helps when your clearing 7 pots after midnight!
Already I want to get up an prepare for the day (and breakfast!). The pump says "450" left - thats 2 2/3 hours to bag end (7:45) my timing has been on pump syncro over every night, it also means about 40 mins to next pee stop. Brain off now please, shut up! sleep!
Still only 6:30am: Pace yourself, pace yourself, rest, sleeep! No good, I've already counted the timer down to the blood test time (from 5 to 6 am). My nurse was bang on, but I was already planned to give them 30 min more (80ml) before I would have been in the doctor room having a script made out. We/I need standard bloods early today so that I can get out today if the whites are behaving! No accidental delays this Monday.
Last few nights have been getting some chest pain both eve and in early morning (4-6am), with tacky heart type rythyms. Am sure it'll settle again. I should be time to get some stairs in and maybe settle it before breakfast! A final 3 up 3 down with the IV stair cheildh!
So hoping for bacon and eggs, a spinal injection, doc consultation, easy home drug order and free pass today. wish me luck!
Sunday 8 March 2009
end of the juice maybe nigh?
Nae too bad a night, and today was ok too. That's the last bag gone down, just IV fluid til morning and a spinal chemo tomorrow. My brain is working overtime and a long discussion about the next stage is needed with my long suffering consultant next week. Need to convince myself whether extra treatment would or would not help. What a weird space to be in, wanting to volunteer for extra juice, but that's how i feel right now!
Hoping to a home pass tomorrow night before white cells vanish. That would be good.
Was well fed up today to play with plastic weights and actually find them heavy due to the muscle loss from the last session fiasco, so yes i am a bit down but only as i know it just means so much more work in rehab that I just didn't seem necessary. But but but there's good and bad around each corner, and i know i can put that right, just maybe no forward loops in July after all.
Cooked breakfast ordered for the morning - that always proves an amusement for the ward staff and me, so will see what the kitchen delivers!
Houdoe! Tot Ziens!
Martin
Hoping to a home pass tomorrow night before white cells vanish. That would be good.
Was well fed up today to play with plastic weights and actually find them heavy due to the muscle loss from the last session fiasco, so yes i am a bit down but only as i know it just means so much more work in rehab that I just didn't seem necessary. But but but there's good and bad around each corner, and i know i can put that right, just maybe no forward loops in July after all.
Cooked breakfast ordered for the morning - that always proves an amusement for the ward staff and me, so will see what the kitchen delivers!
Houdoe! Tot Ziens!
Martin
Saturday 7 March 2009
Buckets of chemo, bacon and eggs!
Tuesday. Great to wake up at home again. Had enough time to make a hearty breakfast before heading back to the hospital.
Today there were no problems, treatment started with the rat poison - (Rubitoximab!).
It feels brilliant to be on the last treatment, all pain from previous treatments fades away, to material fit only for a few anecdotes over a brew, that is when I am ready to sit in a pub!
After the chemo I was briefly disconnectd from the "IV tubes", so Michelle and I were able to go to the canteen. We both had chips and tea - a very cheap date! Came back just in time to catch Dave, cheers buddy for coming in!
Wednesday. Now in the middle of final (hopefully) round 4 chemo, today and tomorow is 14 hours of chemo, starts 11 am finishes at 3 am. Then 3 days of 2-3 hours, then an injection to spine on day 6 (not normally as bad as it sounds) and thats it, then just wait for white cell drop and then recovery. Could have a fair bit of time recovering at home if i am very lucky.
It really feels like buckets of chemo are being poured down me, amounts to about 10 grams a day! Does feel tough, very tiring and a strange set of sensations, but reduces tomorrow.
So althugh this session is heavy at the moment, its not as bad as Methotrexate!
Thursday. Woke up in the night with a coughing fit. That got me panicing as my good friend sharing my room is here precisely because he has a chest infection! Nurses calmed it down with good ol cough medicine and docs are nae too concerned, so neither am I.
Friday. Chemo seems to have switched my guts back into turmoil. Lots of visitors today, great fun, but by mid evening the same as last week, totalyl knackered!
Saturday. Still sleeping poorly, more resting than sleeping. I got up early and managed a little stair climbing: bungee style 4 up 4 down! Great surprise today, the kitchen delivered me a cooked breakfast - bacon, sausages and "egg" (dont ask what!). Very tasty! Was a massive palava, but the dietician has recomended extra food so who am i to turn down cooked breakfasts! I'll definitey try ordering that again. Am also ordering sandwiches and milk as extras so maybe I'll be looking Cartman like quite soon!
Pretty mellow day so far. Hoping for a good night.
Catch you all later!
Today there were no problems, treatment started with the rat poison - (Rubitoximab!).
It feels brilliant to be on the last treatment, all pain from previous treatments fades away, to material fit only for a few anecdotes over a brew, that is when I am ready to sit in a pub!
After the chemo I was briefly disconnectd from the "IV tubes", so Michelle and I were able to go to the canteen. We both had chips and tea - a very cheap date! Came back just in time to catch Dave, cheers buddy for coming in!
Wednesday. Now in the middle of final (hopefully) round 4 chemo, today and tomorow is 14 hours of chemo, starts 11 am finishes at 3 am. Then 3 days of 2-3 hours, then an injection to spine on day 6 (not normally as bad as it sounds) and thats it, then just wait for white cell drop and then recovery. Could have a fair bit of time recovering at home if i am very lucky.
It really feels like buckets of chemo are being poured down me, amounts to about 10 grams a day! Does feel tough, very tiring and a strange set of sensations, but reduces tomorrow.
So althugh this session is heavy at the moment, its not as bad as Methotrexate!
Thursday. Woke up in the night with a coughing fit. That got me panicing as my good friend sharing my room is here precisely because he has a chest infection! Nurses calmed it down with good ol cough medicine and docs are nae too concerned, so neither am I.
Friday. Chemo seems to have switched my guts back into turmoil. Lots of visitors today, great fun, but by mid evening the same as last week, totalyl knackered!
Saturday. Still sleeping poorly, more resting than sleeping. I got up early and managed a little stair climbing: bungee style 4 up 4 down! Great surprise today, the kitchen delivered me a cooked breakfast - bacon, sausages and "egg" (dont ask what!). Very tasty! Was a massive palava, but the dietician has recomended extra food so who am i to turn down cooked breakfasts! I'll definitey try ordering that again. Am also ordering sandwiches and milk as extras so maybe I'll be looking Cartman like quite soon!
Pretty mellow day so far. Hoping for a good night.
Catch you all later!
Monday 2 March 2009
Ding Ding! Round Four!.....
Monday
I wake up early and am ready for action, today is the start of round four and I am itching to get back in the ring. Bring it on!
I have a cuppa on the beach as Miche readies for work, then once she leaves I head to the car. That job is gonna get done! I am under the car before 8 am and ripping panels back out, oops maybe too quick as one comes out in two pieces, Reaches for the silver tape...
Tape split the spring bounces back into action (not quite as impressively as i hoped but fully all the same). Panels patched and re-fixed the job is truly completed. Yeah!
Bath and breakfast of coffee, 2 eggs, 2.5 toast, ham and a tin of beans later, oh and a bit of packing, and I am ready for the hospital by 10 am!
The roots drop me off and I am welcomed back to familiar and a very pleasant surprise: I am back in the room of two, the second room I was in from the start, this is fantastic and will make this round even better!
I quickly run through my list of tasks I know are needed to be done this morning by all the staff: Rubitoximab, blood tissue type test and heart stress test. All appears well as they know all this! I settle in and get to know my new room mate. I also do my standard paranoid full cleaning of my bedside cabinet, bad, patient line machine and adjacent walls (although I wore gloves this time). Checking in forms and the tissue typing blood test follows, and later a brief doctor visit.
After lunch I am summoned for the stress test.
In the Cardio department a few things happen I was not expecting: first off more chest hair bites the dust as I am shaved to make way for the electrodes. OK, but then the skin is sanded hard with sand paper for each electrode, which are salted! Is this torture really necessary? Because I am certainly stressed now! They don't like my "Crocs", but I insist I can run in them and that they will not fall off. Still I now wish I had come in with trainers!
On the Machine it starts at a nice uphill walk, OK this is easy, no worries here. I notice the picture on the wall in front of me and ask which Harbour it is, apparently I have to guess but the clue is it on the local north coast. I try but it ain't no surf beach so I fail that test, (it turns out to be Portknockie).
The pace steps up every 3 min or so. After a few steps I ask "can I run now?", the answer is no, so I have to force my wee legs to walk faster. For someone who could not eat for over a week and lost a stone a week ago I guess I am doing OK, but I imagine Lance Armstrong looking on in disapproval as the test winds up a pace. We reach my heart maximum of 180, so I guess the test will complete. No still faster to go, so I start to hang on a bit harder one armed while the other is used to test my blood pressure. I don't want to give up and be "beaten" by the machine. Apparently there is only one level left and its up to me if I go for it, but am told I can run for this one. I am cream crackered but dammit, as its up to me, I have to go for it! I think I lasted only 20 seconds and finally shout "stop!". Beaten, I step off thinking if only I was tested 3 weeks ago when I did the 46 storey stair climb. They reassure me all the info they needed was collected, but I still wanted to beat the machine! I have since found out I had a haemoglobin (Hb) blood count of only 80, a level at which many patients are transfused at, so maybe I can cut myself a bit of slack!
It was interesting for me noting my blood pressure result during the excercise, where my systolic rose from 139 to 180 odd, and the diastolic fell from 86 to 74 .
Back on the ward I am seen by one of my docs, who takes a standard Blood test, he's a Surfer like me so we have a good crack. After a fine afternoon of visiting, and the evening meal (less fine), I am twitchy about when the chemo will start. I then find out it has been cancelled for the day as the blood test results were not back in time. I am very disappointed, so I ask if I can go for a walk off the ward. I am surprised how angry I am inside, I had really wanted to be back on the fight. I pop to the staff canteen to case it out, I have not tried it since all this started and haven't eaten there for years. I try a plate of chips as the rest does look dire tonight! Halfway through I formulate a plan, which is that in compensation surely there is no need for me to stay the night, since I have received no new treatments. I check back with the docs and they agree, and meanwhile Miche arrives so we grab my ruck sac and head for home!
I have a great evening at home, despite the fact I am stuffed with hospital food so there's no room for anything more wholesome, but never mind! (The Moral - there's always a good side if you open your eyes to it!)
I wake up early and am ready for action, today is the start of round four and I am itching to get back in the ring. Bring it on!
I have a cuppa on the beach as Miche readies for work, then once she leaves I head to the car. That job is gonna get done! I am under the car before 8 am and ripping panels back out, oops maybe too quick as one comes out in two pieces, Reaches for the silver tape...
Tape split the spring bounces back into action (not quite as impressively as i hoped but fully all the same). Panels patched and re-fixed the job is truly completed. Yeah!
Bath and breakfast of coffee, 2 eggs, 2.5 toast, ham and a tin of beans later, oh and a bit of packing, and I am ready for the hospital by 10 am!
The roots drop me off and I am welcomed back to familiar and a very pleasant surprise: I am back in the room of two, the second room I was in from the start, this is fantastic and will make this round even better!
I quickly run through my list of tasks I know are needed to be done this morning by all the staff: Rubitoximab, blood tissue type test and heart stress test. All appears well as they know all this! I settle in and get to know my new room mate. I also do my standard paranoid full cleaning of my bedside cabinet, bad, patient line machine and adjacent walls (although I wore gloves this time). Checking in forms and the tissue typing blood test follows, and later a brief doctor visit.
After lunch I am summoned for the stress test.
In the Cardio department a few things happen I was not expecting: first off more chest hair bites the dust as I am shaved to make way for the electrodes. OK, but then the skin is sanded hard with sand paper for each electrode, which are salted! Is this torture really necessary? Because I am certainly stressed now! They don't like my "Crocs", but I insist I can run in them and that they will not fall off. Still I now wish I had come in with trainers!
On the Machine it starts at a nice uphill walk, OK this is easy, no worries here. I notice the picture on the wall in front of me and ask which Harbour it is, apparently I have to guess but the clue is it on the local north coast. I try but it ain't no surf beach so I fail that test, (it turns out to be Portknockie).
The pace steps up every 3 min or so. After a few steps I ask "can I run now?", the answer is no, so I have to force my wee legs to walk faster. For someone who could not eat for over a week and lost a stone a week ago I guess I am doing OK, but I imagine Lance Armstrong looking on in disapproval as the test winds up a pace. We reach my heart maximum of 180, so I guess the test will complete. No still faster to go, so I start to hang on a bit harder one armed while the other is used to test my blood pressure. I don't want to give up and be "beaten" by the machine. Apparently there is only one level left and its up to me if I go for it, but am told I can run for this one. I am cream crackered but dammit, as its up to me, I have to go for it! I think I lasted only 20 seconds and finally shout "stop!". Beaten, I step off thinking if only I was tested 3 weeks ago when I did the 46 storey stair climb. They reassure me all the info they needed was collected, but I still wanted to beat the machine! I have since found out I had a haemoglobin (Hb) blood count of only 80, a level at which many patients are transfused at, so maybe I can cut myself a bit of slack!
It was interesting for me noting my blood pressure result during the excercise, where my systolic rose from 139 to 180 odd, and the diastolic fell from 86 to 74 .
Back on the ward I am seen by one of my docs, who takes a standard Blood test, he's a Surfer like me so we have a good crack. After a fine afternoon of visiting, and the evening meal (less fine), I am twitchy about when the chemo will start. I then find out it has been cancelled for the day as the blood test results were not back in time. I am very disappointed, so I ask if I can go for a walk off the ward. I am surprised how angry I am inside, I had really wanted to be back on the fight. I pop to the staff canteen to case it out, I have not tried it since all this started and haven't eaten there for years. I try a plate of chips as the rest does look dire tonight! Halfway through I formulate a plan, which is that in compensation surely there is no need for me to stay the night, since I have received no new treatments. I check back with the docs and they agree, and meanwhile Miche arrives so we grab my ruck sac and head for home!
I have a great evening at home, despite the fact I am stuffed with hospital food so there's no room for anything more wholesome, but never mind! (The Moral - there's always a good side if you open your eyes to it!)
Sunday 1 March 2009
Rugby and the Art of Motor Mechanics
Friday, Saturday and Sunday
On Friday I am feeling much better, so much so I decided to fix the surf mobile!
After many a google for "ignition switch" and "golf mk3" I hit a fix-it web page. Good times. So a plan was set for the weekend. Rugby was watched Friday night with Dad and friends and I tried to have a beer but ended up having to dilute it! Yes and only the one beer was eeeked through the entire game - great game though it was.
Saturday. Feeling even more charged up, (mainly I believe thanks to my breakfast regime of 3 poached eggs on toast for the last few days!), so set off to VW with Miche and bought a wee critter, a small elec box caller a started switch, for which the challenge was now to jam in behind the key slot, wahey no probs eh?!...
Later that day I finally stopped chatting to all my neighbours and got round to it. With the guide printed and carefully followed, the steering column yanked out as expected, and soon enough the wee piece fitted jammed into place behind the starter key. Now what next: "Reassembly is the opposite of assembly" was the only guide note......Hm, not so helpful. Physics teaches me this is rarely the case! A short while later a problem was identified: there is a compression spring between the steering column and universal which has to mate up spline perfect. This is an exacting and fiddly job, but which needs the strength of Arnie to compress the spring while a feeble mortal lines it up! Was this left out of the guide on purpose, leaving VWs around the world without steering columns?! Hmmmph.. its totally impossible to reassemble, so I give up and go to my day clinic at the hospital and then get back in time to watch the England vs Ireland Rugby game. All is not lost though, (although it soon was for England), as the engine now starts and there's loads more room on the drives side than before, I just have no steering anymore!! My good buddy cooks up a huge pot of chili which we consume completely by the end of the match. I retire shortly after as my batteries were suddenly failing. This leaves me in a weird state, which I have now experienced a few times, where I can not control my body temp: when cold try a bath but then too hot, then cool off and become too cold again! This cycle continues, (not the baths though!). I have learnt it means I am worn out and need sleep. Anyway the evenings chili eating has temporarily pushed my weight back up to 10 stone 1.6 which is well cool, plus 3 or 4 pounds in one sitting ha ha ha, cheers my good buddy!
Sunday. I decide to take it easier today as last night hurt, or was at least was unpleasant, just due to tiredness. Later on though I have a revelation on how to solve the car compression spring: take it out, compress it in a clamp, and then hold it compressed by wrapping Sellotape - sorry stick backed plastic - around it. After a few attempts, with my dad watching on suspiciously, the tape holds. I whack it back in place and a few skin scrapes and cussing later the steering column is reassembled. Perhaps I was too laid back about the day as its dark now,so am holding a torch to put reassemble the body panels. (I had to visit the hospital halfway through the task, they either didn't notice or maybe were too polite to point out the grease on my trousers and hands!) Once complete I turn the key, wahey the ex-jamie surf wagon is propelled into action once more, so I take it for a spin!!
During supper Dad helpfully asks me how the tape split after I had reassembled the column. The plan was to cut it with a knife at this point, but eeerrr oops forgot! So OK there is one job still to do! Again after a body building stuffing session, today of baked ham, (thanks Mum and Miche!), I am shattered and need bed. I try resting and watching a film, but fall asleep 20 mins in! I now, as before, have to dig deep to complete the evening drugs list and do tasks like flushing IV Hickman lines. With these done I head to bed and wait for sleep in between the hot cold flushes.
On Friday I am feeling much better, so much so I decided to fix the surf mobile!
After many a google for "ignition switch" and "golf mk3" I hit a fix-it web page. Good times. So a plan was set for the weekend. Rugby was watched Friday night with Dad and friends and I tried to have a beer but ended up having to dilute it! Yes and only the one beer was eeeked through the entire game - great game though it was.
Saturday. Feeling even more charged up, (mainly I believe thanks to my breakfast regime of 3 poached eggs on toast for the last few days!), so set off to VW with Miche and bought a wee critter, a small elec box caller a started switch, for which the challenge was now to jam in behind the key slot, wahey no probs eh?!...
Later that day I finally stopped chatting to all my neighbours and got round to it. With the guide printed and carefully followed, the steering column yanked out as expected, and soon enough the wee piece fitted jammed into place behind the starter key. Now what next: "Reassembly is the opposite of assembly" was the only guide note......Hm, not so helpful. Physics teaches me this is rarely the case! A short while later a problem was identified: there is a compression spring between the steering column and universal which has to mate up spline perfect. This is an exacting and fiddly job, but which needs the strength of Arnie to compress the spring while a feeble mortal lines it up! Was this left out of the guide on purpose, leaving VWs around the world without steering columns?! Hmmmph.. its totally impossible to reassemble, so I give up and go to my day clinic at the hospital and then get back in time to watch the England vs Ireland Rugby game. All is not lost though, (although it soon was for England), as the engine now starts and there's loads more room on the drives side than before, I just have no steering anymore!! My good buddy cooks up a huge pot of chili which we consume completely by the end of the match. I retire shortly after as my batteries were suddenly failing. This leaves me in a weird state, which I have now experienced a few times, where I can not control my body temp: when cold try a bath but then too hot, then cool off and become too cold again! This cycle continues, (not the baths though!). I have learnt it means I am worn out and need sleep. Anyway the evenings chili eating has temporarily pushed my weight back up to 10 stone 1.6 which is well cool, plus 3 or 4 pounds in one sitting ha ha ha, cheers my good buddy!
Sunday. I decide to take it easier today as last night hurt, or was at least was unpleasant, just due to tiredness. Later on though I have a revelation on how to solve the car compression spring: take it out, compress it in a clamp, and then hold it compressed by wrapping Sellotape - sorry stick backed plastic - around it. After a few attempts, with my dad watching on suspiciously, the tape holds. I whack it back in place and a few skin scrapes and cussing later the steering column is reassembled. Perhaps I was too laid back about the day as its dark now,so am holding a torch to put reassemble the body panels. (I had to visit the hospital halfway through the task, they either didn't notice or maybe were too polite to point out the grease on my trousers and hands!) Once complete I turn the key, wahey the ex-jamie surf wagon is propelled into action once more, so I take it for a spin!!
During supper Dad helpfully asks me how the tape split after I had reassembled the column. The plan was to cut it with a knife at this point, but eeerrr oops forgot! So OK there is one job still to do! Again after a body building stuffing session, today of baked ham, (thanks Mum and Miche!), I am shattered and need bed. I try resting and watching a film, but fall asleep 20 mins in! I now, as before, have to dig deep to complete the evening drugs list and do tasks like flushing IV Hickman lines. With these done I head to bed and wait for sleep in between the hot cold flushes.
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