Blog History
Below are some measurements I took during and after my hospital visit.
The graph shows time backwards i.e. the first entry is the latest one. This is to facilitate mobile browsing and if the data gets too large I suspect the graph will fall off the edge. Get your head around the trends going left not right :-)
This is a brief description of what I was measuring. Most things are on a 0-10 scale:
I have now stopped updating this graph as it has served its purpose.
I've managed to stay out of bed between breakfast and lunch. I'm still a bit unsure on my legs but I am getting around the garden and I've taken up residence in my office again. The heat is something I didn't bargain on.
I'm slowly doing some admin and dusting off the projects that were shelved. I'm optomistic I'll get some them done. Boredom is not something I will suffer from.
I'm still suffering from fatigue and some rashes and a bit of nausea. Next appointment is Monday - I see my hydration was still not as good as it could be at the last hospital visit. Looking forward to finding out it is ok now that I am consistently drinking 3 litres of water a day.
I've even done the odd bit of support work - it was actually fairly invigorating - especially trying to explain things to the support people.
My days are spent doing some activity like going to London for a hospital visit and then taking a day or two to recover.
I was at the hospital on Tuesday. They seem pleased with my progress. I have a rash across my lower abdomen which I'm now treating with some cream. Apparently many people get it on their hands and feet.
They have decreased more pills which is a good thing. My cells are all still low but they seem to be maintaining the low count instead of falling. My hospital visit has now been moved to once a week. That may change at any time.
I'm still trying to keep water intake up between 2l and 3l a day. It is quite difficult but some Lemon Cordial or a dash of juice in it seems to do the trick.
Transport is a bit of a nightmare with long telephone waits and inconsistent waiting times. The rule is to be ready 3.5 hours before the appointment. It takes between an hour and 2.5 hours to get into London from here depending on the traffic and time of day. I've been in London at 07:00 for a 09:40 appointment and this Tuesday got there at 10:20 for a 10:40 appointment (this driver called and came an hour later than they advised). I guess it's a crap shoot for them too and in order to stick within SLA times they make patients get up at the crack of dawn.
I'm starting to walk in the garden a bit and hopefully will be able to do small walks in the neighbourhood soon. Still get very tired very quickly. The nausea seems to be abating but I take the pills on a travel day and feel a bit weird for most of the day. Haven't taken them today but still feel a bit queasy. I'll see if it goes soon, I don't want to be stupid and find myself in hospital because I didn't take a pill.
I'm still vulnerable to any virus, bacteria and common infection that we all just shrug off in a minute or so. It's a little terrifying walking in a hospital with people coughing and spluttering everywhere. I have a runny nose today, I think it is just the persistent backdrip I have that flares up from time to time. I have a nasal spray for that.
I'm going to try and put a few hours of work in front of the computer just to build some stamina and core sitting muscles :-)
Friday was a far more pleasant day. I spent 4 hours at the hospital getting fluids. Felt much better afterwards.
My immuno-suppressant medication has been reduced significantly and I am no longer taking chemotherapy pills. All steps in the right direction.
I'm still a bit nauseous but it doesn't seem to last as long.
The weekend has been spent sleeping for 2-3 hours at a stretch, eating lovely food and just resting. I need to start doing some exercises but due to my low white cell counts I need to be very careful of resistance training.
All the hair on my head is now gone - still got some scraggly beard bits and most of my body hair. It does look like I'm a shedding cat when I shower though :-)
Next appointment is on Tuesday, we will then see if all these measures has improved anything. Hopefully it has. I expect to see more cells now that the chemotherapy pills are stopped.
As always the graft-vs-host disease is the biggest concern to control.
Spent another day in the hospital as an outpatient. We left there about 12:00 got home at 13:30 and I was then phoned to say I need more liquids and I have a 4 hour appointment at 08:30 tomorrow. Pickup time 05:30.
It is exhausting.
Apologies for not updating sooner. Monday was really a terrible day for me, it was my first outpatient appointment and the transport was supposed to arrive at 6:30. It never arrived then it took us another 7 hours before transport got here. I was waiting on the phone a few times for up to 30 minutes at a time only to be put through to an answering service.
I then went to London and had to do whole lot more waiting around because of course I'd missed my appointment and they had to organise people to come and see me. So a lot of waiting around and only got done at about 16:30. I then had to sit and wait for an hour and a half for a car to take me back home again in peak hour traffic. I was absolutely exhausted and it took me all of Tuesday and even part of this morning to recover.
The hospital results were mixed. Haemoglobin is up, platelets, white cells and neutrophils were way down. Got another injection to stimulate growth.
I also had them book my appointments for next week so that I don’t miss the 72 hour deadline for booking patient transport. I’ve booked those today and it only took about 5 minutes so they are improving things. I think a lot of staff are off due to Covid like symptoms.
Next appointment is tomorrow, Sue is coming with me, hopefully it goes smoothly.
One word describes my days: FATIGUE. I can hardly do anything and then I need to rest for an hour or 2.
I'm sitting here now waiting for my transport to arrive, they were meant to be here at 06:30 this morning. When they finally answered the phone after 09:00 they told me they were under the impression I was getting there myself this morning.
I'm exhausted already and I haven't even left home.
Normal Saturday breakfast today. Made it myself too. I'm so exhausted and need to rest.
It's amazing what a difference being home makes. I was anxious at first because medical attention is now a 999 call away and a trip to the hospital A&E before being sent back to London, but I'm feeling better about it now. Busy doing a 'Emergency Action Plan' document so people know what to do and what medications etc they can give me.
I'm amazed at all the bacterial and viral hazards in the house. Even simple things like herbs in water pose a serious risk to my health if the water is not fresh all the time. Blue Cheese - who knew - can make me seriously ill too. No wonder new moms have nervous breakdowns!
I'm going to try and post again later today but I suspect the fatigue will get the better of me. The pills I am taking also take their toll so we will see.
Enjoy your weekend.
Good morning. It's a good morning this morning because I am at home. Yes, at home. I can't believe that at 07:00 yesterday morning I was still in a hospital bed having blood in a bag pumped into my arm! At 12:00 they said I could go home and after the usual wait for medication I was picked up and driven home last night at 18:10 - arriving home at 20:06. The journey was exhausting as I haven't been upright for that long in about 2 weeks.
While this was an earlier release than expected I'm told by the doctors it would have happened soon anyway because my system is responding well with the engrafted cells and they now have the long hard task of getting me back to normal. There is no point in doing this in a hospital bed with limited mobility, crap food and many other sicker people around (not to mention Covid).
The reality of the situation is far more daunting. Still with virtually no immune system I can now catch anything that is floating around, with the possibility of admission to A&E being really high. We are being extra cautious, almost lockdown like and wearing masks whenever Sue goes shopping or out at all.
I will go to the hospital twice week for at least the next 100 days while they check me and top me up with whatever I need. The doctors expect my system to slowly recover over the next 4 months with less reliance on immuno-suppressants as the encrafted cells accept their new home. As my cell counts go up my risks to bacteria and other nasties will decrease. Until then I will be severely fatiqued. The doctor warned me that answering the door or phone could see me needing the rest of the day to recover.
Thank you all for your support thus far. I am far from out of the woods but for now I'm at least out of the hospital and I want to keep it that way.
I'm up early this moring sitting here with a bag of blood being pumped into me. Yesterday they gave me platelets and I had to inhale some anti-fungal/virus/bacteria stuff to prevent lung infection.
During all the fuss my dinner arrived and then was taken away. They reordered it and nothing arrived - ugh - talk about process failure :-) I eventually had an egg mayo sandwich which a nurse found in the kitchen fridge.
I'm told that now that my body is making cells we are going to be in a sort of yoyo state. One day there will be many white cells and neutrophils and the next not so many as they got killed in the battle with all the stuff they need to go and fight and fix. Plateletes and red blood cells seem to be manufactured too but can be topped up. Apparently platelets only live for a day or so.
Anyway, they now want my body to start making these things so they have stopped the injections to stimulate growth so we expect a drop in white cell counts. This actually happened yesterday.
For the rest I am now get exhausted very quickly and tend to nap throughout the day. I need to walk more and do some of the step exercises but I can't do those if my white cells are below 20 (12 currently) or Hb below 80 (91 currently). Blood pressure is also a problem - it's either too high or too low. They figuring out what to do about that. This is partly due to the immuno-suppressants that I have twice a day. They are hoping this will settle.
Without a working immune system I am now prone to getting anything. Even my gut bacteria can attack at any minute. I suggested whisky to keep the rabble subdued but apparently that is not a medical option!
I must go, soon the breakfast will arrive (don't get me started) and then all the pills and blood tests and the rest. I trust you are all having a slightly better week.
Started oral immuno-suppressants today. We will see how it goes.
Doctors tell me the engraftment is well underway. My next big challenge is going to be graft vs host disease. That's when my brother's cells think my body is a foreign body and start trying to kill it. It is rare in sibling situations but it does happen in about 5% of cases. They can manage it.
Managed to walk out on the terrace earlier - there is a cool breeze blowing which is a change from the stifling heat we have had.
Woke up at 05:00 this morning and made myself a long black coffee at the Nespresso machine down the hall. Caught some of the nurses by surprise as they were doing rounds. They really work hard.
At 06:00 the usual anti-nausea (x2) and immuno-suppressants (x2) - total time attached was 5 hours 30 mins.
Stomach decided to play catchup too all morning - I'm out of clever sayings other than - ouch!
The good news for the day is that my white cells have increased which automatically increases my infection protection. My neurophiles have also jumped radically from 0.67 to 2.8 which is considered the bottom bit of normal. This is all good news as it means the stem cells from my brother have now started settling in my bones and are at work.
The doctor came today and explained that now the cells are working they need to ween me off IV and get me onto tablets. A process that can be a bit frustrating apparently as they figure out what works and what doesn't.
My mouth is healing (thank you white cells) and I am eating more now as a result. I can be picky about the food instead of gulping down synthetic calories that make me sweat banana!
My hair is now falling out too. It was expected but I didn't expect the patches. It looks as if I've been sleeping in a barn and the mice have nibbled select pieces of my beard and already shorn hair. Body hair no exception. The shower today was a mass of hair as was the drying towel.
Just been hooked up for another 2 hours of immuno-suppressants and then bed time to be woken at 02:00 for a quick blood pressure and temperature check.
See you all tomorrow as I prepare for Groundhog Day - the only visible sign of progress is the hair loss. The tablet experiments might make it less of a Groundhog Day.
Another day with different problems today. My brother's cells have started taking and producing all the right things to start fixing stuff. I have mega low blood pressure today - so much so they are going to pump some more liquids into me.
Currently getting a bag of blood because my Hb count is really low. It will be a few days before the bone marrow starts producing viable cells. That means more injections in the tummy - ouch. I already have a massive bruise from one of them - the size of an open hand.
They are also dropping one of the blood pressure tablets.
Anthony is visiting as he will soon be returning to SA.
Eating is all over the place as I pivot between the two extremes. All food here is low fat - no sugar - full of other crap - I don't like it.
Mornings start with massive nausea but they quickly give me drugs that sort it out in about 20 minutes.
I'll update again tomorrow.
Rough day. First cells appearing. Lots of nausea, lots of drugs
Had to rest all day.
Been a long day so far, been attached to machines for over ten hours.
Received extra blood and extra platlettes along with the usual immunosuppressants ,antibiotics and various cocktails.
Some of my body hair is starting to fall out quite actively.
Been confined to bed mostly but hoping to grab a shower and a bit of a small walk on the terrace before the evening session of drugs.
Next few days are crucial, we expect cells to start forming and seeing some indication of how well the grafting process is working. Doctors are pleased with progresss so far.
I'm just very fatigued and have asked Anthony to update this for me.
Long night, very long sweaty night. Woke up feeling okay, nausea is back.
Lots of medications today, going to be hooked up to the machine for at least twelve hours.
Doctors are happy with progress, they say all the pain and suffering so far is not unexpected.
Sue is visiting so that is really nice.
Had a nice visit from nephew and fiance yesterday.
Soon after they left took a turn for the worse with high temprature. Back on antibiotics, had to have extra plateletes in a bag.
The hospital was put in lockdown due to some incident outside so a whole bunch of people had to stay overnight and it also delayed me getting my plateletes until early this morning.
Had the plateletes, feeling slightly better, mouth is still very sore and getting antibiotics three times a day now.
Will update later.
Good night's sleep - they still come and take temperature and blood pressure at 22:00 and 02:00 and then 06:00. I managed to get up at 05:00 go and make a coffee and have a shower before being hooked up to the immuno suppressants (a higher dose today) for 5 hours.
My new nurse is called Chuckie - she insists its a nickname from some cartoon character NOT the evil doll. So far she has been nice but I'm waiting for that menacing grin :-)
I'm told it's day 8 since transplant. My blood counts are now almost nill, which is what we need for the engraftment to be successful. I'm still very suseptible to infection. My mouth is slowly clearing up - there is very little in my system that can help it so it might take a bit of time to clear. Fortunately not mucositis although that may still happen. Thanks for all the advice on what to eat and how to clean my mouth :-)
Food is still an issue for me. I'm eating loads but I'm still losing weight. They seem to think more calories is the answer but I am unconvinced. A calorie is not a calorie - I guess that debate is one I'm not going to have with anyone any time soon.
More later ...
It's been an eventful day. The chemo is working well and my blood numbers are plummeting. So much so I had 340ml of red blood cells added to me over 2 hours. That was weird too.
My plateletes are way down too now so I have to be careful of open sores or bleeding. I see on the screen at the nurses station I've got an 'At Risk of Falls' symbol. It might just be an 'excellent breakdancer' symbol but then I don't know how they know. I just went for a walk to get coffee before seeing that!
I've eaten a shedload today after I got a call from the nutritionist who gave me an earful for losing almost a stone since being here. I protested about quality of food, sore mouth, upset stomach and healthy eating. She insisted I eat EVERYTHING in sight. So much so I now have extra omelette, bacon, whey protein shakes and 2 coissants prescribed. They never do things in moderation do they :-)
I've been quite tired and sleeping and will probably be in bed very early tonight. I'll catch you on the flip side.
Had a relatively good day yesterday catching up with people who didn't know I was in hospital (for various reasons). My brother came to visit and we had a great day chewing the fat and philosophising.
I'd eaten some wavy crisps (the knockoff version) the day before and my mouth was a bit tender so I was dunking toast in tea. This morning I woke up with a mouth full of blood blisters - fortunately none have popped but I found it rather disturbing. They have swabbed them to see if it is an infection but I suspect it is just damage from crap crisps.
I'm also told that I need red blood cells today - so there is a 2 hour infusion on its way for that. It's all part of the recovery I'm told. Not looking forward to a bag of blood hanging over my head.
I started reading Clarksons Farm last night and even though I have seen the series on Amazon I was surprised by the ease at which I could consume the book. He has some lovely metaphors and sayings that he makes up. Didn't think I would enjoy it so much. The man still shows himself up as a total idiot farmer but the laughs are priceless.
I'll update later if the blood thing doesn't knock me for six. I trust you are all getting stuff done on a Monday morning.
So an interesting problem developed with this blog in the past few days. It appears many people were only getting updates that were almost a week old. This is a common problem with websites that are fairly static and have no way of controlling cache in the browser that the client (you) use. I've added some parameters and hopefully you won't suffer these problems BUT you might - that is the nature of caching and the Internet. If you run into a problem where you are not sure if you have the latest version of the site in front of you, add a ? and some random info after it e.g. juliograham.com/health/?r=1234. That will tell your browser to reload the page. Next time change the random info or it will load from your cache again.
The irony is if someone is having this problem, their browser is not going to load this post. So if you know someone who is not getting updates tell them of this hack and hopefully they will get an update and from then on I'll update some parameters that forces things (hopefully). If anyone who has read this has problems in the future let me know - there is a whole Internet of things we can try to keep it current.
I survived the night without anti-biotics and after a long start and a few changes of lines on my immuno suppressants I am now receiving my 6 hours of medication.
I have to start doing the physio twice a day now - no slacking.
Been an interesting afternoon. Saw the main consultant who advised I was being taken off anti-biotics now. They expect me to develop a fever in a day or so again and they will reapply them.
Had a reflexology session of about 25 minutes with some Reiki thrown in for good measure. The therapist left me a lovely Cedarwood, Lavender and Orange essential oil to waft or sniff.
The physio visited and started me on some exercises. Those of you who know me know I often just do a quick bike ride or a run - mostly suffering but at least being capable. Well! 3 sets of steps and 3 sets of 1kg dumbbell exercises and I felt like I had just done the 200m in under 20 seconds. No not all excited, all exhausted. It's amazing that I've not been doing exercises and walking for only 2 weeks and already I'm 'poegaai'. The chemo is also kicking in big time in terms of fatigue so that must be contributing.
I'm off to have my all-day-breakfast for dinner. For those of you who are now not looking forward to dinner I say: "You haven't lived until you've had breakfast 3 times a day :-)"
Have a good weekend, I'll keep updating if mind and body continue to work reasonably.
Coming off the 6 hour 'drip' in 20 minutes. It's actually a pump - this paticular pump pumping 500ml into me over the 6 hours.
Feeling much better today. Thanks for all the vibes from everytone - don't stop I need tons more.
Been yacking to various people via email and phone today and I must say it does take its toll. They did warn me I would experience fatigue really badly. If you haven't heard from me I promise I'm not ignoring you - this is the shoutout for the day!
For those wondering about progress, we will start to know about cell engraftment (and host vs graft disease) in about 8-10 days from today. It manifests differently, both the engraftment and possible rejections, but at the moment all is still going in the right direction. Clever people these medical types really :-)
Assuming the next 3 weeks go well I might even go home a few weeks after that - scary but welcoming thought. Scary because of the instant reponse I have here when I press a button (for the Saffers out there - some of the response times are worse than ADT! but they get stuff done when it is an emergency). It will be nice to sleep under some decent sheets and duvet again - the hospital crisp poly whatever is not fun or I am getting too old. I must be feeling better because I am complaining - oh dear - need to change that thought.
Time for a disconnect from machines and stuffs. Chat later if I am able or tomorrow. I have a book written by Clarkson to read - I may be a worse sceptic soon so be aware!
Kingsley Holgate had only two criteria for a good day in Africa.
I can tell you I am not having a good day in Africa, Europe or anywhere else.
It's been a relatively good day today. Constipation gone but almost the opposite now. Sorry about this folks but it's the reality of being pumped full of drugs and food that you are not used to.
I'm going to call it a day early and try and get some sleep. Doctors tell me that I need to take it day by day. The chemo is still taking effect and clearing out old cells. More distress to look forward to.
Catch you all tomorrow. Remember to do something nice for yourself.
Yesterday was a long day. Saw the specialist consultant, doctors, sisters, nurses - even student doctors poking and proding me. And the man who tests and runs the hot water for 15 minutes 5 times a day - don't get me started on that one!
Had a chest xray down in the dungeons too.
In spite of being exhausted I am managing to eat and take the odd short walk. Odd because I am dragging a line with a bag of medication attached to me.
Biggest challenge is the food - it all sounds great on paper but then it just about tastes as bad as the paper. They have been very accommodating though, I get almond milk and a coissant every morning and there is a coffee machine on the floor that Sue tested before. I need to go and see if I can get a decent coffee out of it. Have to supply my own pods of course :-)
I'll try and post later today again but as these things go there is no guarantee.
Got 8 bags of stem cells over four hours yesterday afternoon.
They were hardly in when they started fighting with me and I was put on three different antibiotics with high fever and various fluids and drugs throughout the night.
Holy shit, this science fiction is not so easy. Got a nice cryogenic defreezing video, will post when I figure out how to get it off my phone without falling over.
Thanks for all the messages, I am not getting to them as I am flat out on my back at the moment with a fever.
Waiting for breakfast now - had an uneventful night with 6 hours of infusion of suppresants in preparation for the transfer today
They will be bringing the frozen stem cells, defrosting them and then giving them to me. Proper science fiction this stuff.
I'm told the battle between the cells then starts and it is a fine balancing act between my body, the new cells and of course every other baddie (virus, bacteria, et al) that wants a piece of the action.
I suspect I will be quiet on the blog for the next few days so please don't worry too much about it. It takes a decent amount of energy to just get up and go to the loo let alone do all this star wars fighting stuff at a cellular level.
Keep sending good vibes - they have been working well so far.
I'm sitting here with nothing on but a ... pair of pants & t-shirt - what's wrong you?
Just finishing off the last six hours of ATG now. It has been the toughest 2 of the 7 days of all the chemo and drugs and it is now about to get even more real.
Tonight I get another 6 hours of immuno suppressants in preparation for my brother's stem cells tomorrow. While this sounds like the end of the troubles they really begin now because my body and my brother's cells need to find a way of living together in harmony. So lots of fevers and infections coming my way.
We won't know about engraftment (when the cells have settled in my bones) for at least the next 2-3 weeks and then we will start seeing whether there is major or minor grfat vs host disease (either set of cells rejecting or killing each other) and all the other bacteria, viruses and badies who are going to try and party in my body.
Thank you for all the texts and wishes, sorry I couldn't reply to you all. You know it's not like me to have nothing to say.
I'll get Anthony to post a few things in the coming days if it's too tough for me to do them.
I'm not anticipating going homw for at least 5-7 weeks time.
Been a rough day and a bit. Been getting ATG and immuno supressants that have been giving me fevers and making me not feel well. Sue and Anthony are here so feeling a lot better.
Got six hours of ATG now. Will try update later.
Still feeling a rough this evening - light headed and shaky.
I get admitted into the main building tonight in preparation for the bigger stuff tomorrow and Sunday. Still waiting. Some poor / happy person must be waiting to get discharged.
Watching the opening ceremony on BBC 1 - not sure if I like the boats but then it might just be my current state of things.
Feeling a bit rough this morning - light headed and shaky. Blood appeal is still on so do it already!
I had my stats done early to check all ok - no fever, blood pressure high (normal before pills) and heart rate ok. So I've now taken the pills and am preparing for my last Ambulatory service chemo today. I get admitted into the main building tonight in preparation for the bigger stuff tomorrow and Sunday.
Once the weekend is over then it is stem cells time followed by recovery and rebuilding.
Off to hospital in about an hour and then we will see how things go.
If you are a blood donor - please go and donate a pint today. They are critically short of O negative & O positive blood
If you are not a donor yet - pluck up the courage and go and do it today. You will save someone's life. It could be mine.
I'm back after a quick 2 hour rehydrate.
Just had lovely beef stew for dinner. Going to get ready to watch some TV and then go to bed early. The cummulative effect of this is catching up now.
Got back to the room after all the chemo and was just settling down to rest when the hospital phoned and asked me to come in to get a litre of saline solution - another 2 hours on a machine.
Been learning a lot about Ambulatory Care which is the bit that the Cotton Rooms and the 'Day Care' I am receiving is attached too. It appears to be a new novel way of dealing with patients that doesn't clog up beds. I've started thinking about how this can be expanded.
See the section How can you help? about more ambitious projects of this ilke.
Back in the hospital for the next set of chemo. Sue is here and will leave soon to go back home. I will see her again on Sunday. Hopefully my brother can come too.
I have the same chemo today as yesterday but it does feel as if the effects are stacking up. I am more tired.
We don't have the blood tests yet so I don't know if the 2 hourly water breaks throughout the night have worked or not. I know it made my sleep a bit erratic
I'm getting off the carbs again - they have been playing havoc with my gut and the rest. I've got an appointment with the nutritionist next week and she is keen to help with a proper diet.
Being in London this morning made me think of this song.
Off to bed now. Had a lovely supper with Sue in the dining room. Watch some telly and now exhausted. I've managed to drink 2 litres of water this evening taking my total up to 3.5l today. There will be more to go throughout the night.
Quick update - Done with the first batch of chemo - next batch just been lined up. I have a fluids bag that has another 2h48 to go - ah well.
Just taken more medicines and added them to the MARs sheet on my laptop. Schlep really.
I can't believe the time. They just served me lunch - more steamed salmon - yum.
My battery power on the laptop and mobile are also fading fast, probably time for a small nap before Sue gets here.
Hydration news is not good - my kidneys and liver are taking a beating so they are giving me extra fluids. This does happen so they are not too concerned at the moment. Once all the dead cells are flushed then it will get better.
I've been pondering a Just Giving page to set up some mechanism to build or help build more facilities like the Cotton Rooms I am currently in. It is a fantastic mechanism for patient wellbeing - especially when you travel far or come from a frenetic environment and just need some reprieve. More about this in the coming days.
I've also been bending the ears of the staff here about process and the fact that management should be managing and creating processes. I think people get it but don't know where to start. I'm trying to set an example with all my Medicine Administration Records (MARs). They of course do their own thing with fancy computers. I'll start documenting their processes next - I hear you - nightmare patient!
Morning world. I had an awful nights sleep. Mainly because I slept all day and harassed my mates on video until late! Today I am going to try and be productive. You might even get a call from me but be warned the Internet in the hospital ward is so bad I think it might still be steam powered.
I'm rushing off to get breakfast so I can get extra eggs before the maddening crowd. Fortunately none of them have sticks or crutches :-)
Sue is coming to visit so that is very exciting. I expect to see her this afternoon if she passes the Covid test and manages to avoid the coughing idiots on the train. Since when do you tilt your head back and have a hearty cough? Don't get me started on manners - I have none and even I am appauled at times.
Looking forward to seeing Anthony over the weekend too - I get his stem cells on Monday - and his allergies perhaps too I'm told. We will see.
I decided to add an automatic cheerful/cliche line of code above this blog.
Then came the damn English language and dictated I need an 'a' or 'an' in front of the word.
OMG - that opens up a can of coding problems.
Someone suggested:
The answer is simple: if it starts with a consonant or semi-vowel sound then use 'a'. If it starts with a vowel sound then use 'an'. Spelling is a complete irrelevance. "Give me an F, a G an H and a U" is right, because the names of the letters F and H start with vowel sounds in English, but G and U don't. - Colin Fine (2019) - stackexchange.
We don't however say 'an horse' - and before you argue about saying stuff - I'm trying to teach a computer to pronounce words in UK English and then figure out the a and the an. Turns out AI is dumber than we all believed. Go ahead ask it and if you have a php (or any other function) that works - let me know.
Good night Mr Tom.
Just spent some time in the lounge with some good Internet and yacking to my friends and family around the world and local.
It's nice to have such good mates and great family.
The day has caught up with me and I am off to sleep now.
A correction on the earlier posts - I am getting stem cells on Monday (29th). All being ok of course. Then the tough road to recovery.
Tough sleeping day today. Had two loads of chemo and a lot of saline. Even though I drank 3 litres of water yesterday they still put me on fluids today. I'm happy for it.
Just had dinner - lovely steamed salmon (the secret facelift solution) and some potatoes. I have a chicken sandwich in the fridge for midnight snack. I suspect I am gaining weight at the moment :-)
Just watched the police 'nick' some dude out on Tottenham Court Road. 5 to 1 - great odds. I remember how I was once told that 1 man and a dog could control a crowd of 200 people. Clearly these guys keep the dogs for those occassions :-)
BTW - I'm not spell checking the blog so if something is really really bugging you, let me know and I'll fix it. Also, anyone else having issues with the fonts or font colours? Let me know I have time on my hands to play with it. Have had a few requests already.
Off to bed soon to get a good sleep before tomorrow. Trust you are all making good use of your time
Things are very different today. I've slept most of the morning - quite by accident. I drank so much water yesterday I thought I was going to burst and today they tell me I'm dehydrated. I've got additional fluids on the drip now too.
The fatigue is definitely catching up to me. The food has also got way too many carbs in them leading to the constant insulin / sugar ups and downs.
For the rest of it I seem to be fine and the doctors are happy. Quck afternoon nap and ten hopefully back to the 'hotel' by 17:30 for dinner and sleep.
Woke up a little shaky this morning. I can definitely feel the effects of the first chemo I had yesterday. My head feels a little lighter today (not in a good way!).
Breakfast was brilliant - lovely croissants, nice bacon, boiled egg, tomatoes and mushrooms. I'm going to have to get up a tad earlier to have a better choice. Coffee was nice filter coffee so that was brilliant too.
Met some more people who are doing various forms of stroke rehabiliation and also stem cell transplants. Everyone seems nice enough but you can see some people are struggling.
Today I get about 4.5 hours of chemo. It's two different ones. I'm about to take the multitude of medications to ensure I get through this.
I need to watch my intake of 'crap' today - I think half my problem of not feeling too well is all the sugar intake.
I'll update again when I'm in the ward. Hopefully you are all having a brilliant day too.
Just had a cup full of new pills for the various ailments that may befall me going forward.
My PICC line was hurting so I looked at it and saw some liquid in the clear dressing window. I was worried so I phoned the emergency number. They assured me it was just the antiseptic gel. I should have looked at it when they put it in :-|
Had some chicken and chips from a local shop. Far too much but then I need to eat while I still want to. Breakfast tomorrow is in the dining room and looks like it might be a full English - yum
I've found some decent Internet spots in the shared lounge and dining room so I might be able to download some of the YouTube things I wanted to watch. Then again I might not.
Off to bed now - chat in the morning.
Panic about COVID is now over for me - I am clear.
Started my first set of chemo at 15:45 for 30 minutes. It is a low dose of chemo so not expecting any side effects today.
Just checked into the Cotton Rooms (NHS run hotel next to hospital). It is very small but very fancy. Internet is so slow (1.5Mb) so I am going to need to find a better provider somewhere.
All meals are included and they have a lovely menu. They will even serve breakfast in bed if I am not well enough to go down. I do have to find my own dinner tonight though as they only start supplying tomorrow morning.
Rooms are ensuite and air-conditioned. Nice shower and lovely towels and I have a western view so might see some sunsets when the sun is out. I have a working desk and many cupboards too so this will be my sanctuary until Friday when I am transferred to the hospital for more hands on care.
First appointment is at 09:00 tomorrow. It's going to be about 4.5 hours of chemo tomorrow and then loads of tests.
Quick update - I've been seen by a million people and told all is well - then came the caveat: They need to do another Covid test as the last one was indeterminate i,e, they couldn't be sure. Ugh!
So now we wait for another 2-4 hours for that result. At least they are being uber careful
I have no symptoms and haven't had any for a long time
The waiting goes on as I snack my way through the snacks trolley!
I'm now properly in the hospital.
Admission was a casual hello and confirmation of my name and Date of Birth.
Had some blood tests and a Covid swob. Then off to an operating type theatre to have a PICC line installed
Thye offered to play music so I had them play Rodriguez. They were cool, music blasting while doing the necessary. To be honest I asked them not to tell me what they were doing - better I don't know or let my mind get all weird about it.
I walked out of there no problem, lovely nurses who were well versed at their craft.
I'm now back in my day room waiting for a doctor to come and see me and then I'll get the time for first chemo. I hear the coffee trolley approaching - turns out they have ginger biscuits.
More later today if I feel up to it
I've arrived in London with my bags and hopes :-)
Just dropped the bags at the Cottons Rooms where I will be staying for the next few days before I transfer to the hospital rooms in Grafton Way Building.
I'm sitting at one of my favourite restaurants called Notes on Tottenham Court Road, just ordered coffee and a brioche bun with scrambled eggs. The avo has not yet arrived :-(
There are appointments from 08:15 onwards today - the check-in to my room is 14:00 so I am hoping that I am done with day one by then.
I'll update the graph more regularly throughout the day if I am able - please don't worry if I'm not updating, some days are hectically busy and I am sure I won't be firing on all cylinders.
Thank you to everyone who have been sending wishes with messages, it is greatly appreciated.
Busy packing my bags now getting ready for the trip into London tomorrow.
I must say I am a bit nervous for the first time in the process. I guess all the stuff to do and worrying about my brother has kept my mind off things.
I need to check into the hospital 'hotel' in the afternoon. Got lots of lines and tubes to be attached in the morning. I suspect there will be a barrage of tests and baseline tests too.
I hope the food is going to be ok.
I had my hair shaved off today in preparation for the coming weeks. Apparently I will loose all hair from day 10 onwards. I felt it would be better to cut it now than to find chunks of it on my pillow. I look like a right pirate that needs a suntan!
All done for Anthony. They now have enough cells for me. All the cells are being frozen and then get defrosted on the day I get them (30 July). Lots of relief all round. I now need to get ready to go to hospital on Monday for all my tubes and the 1st dose of chemotherapy. Not looking forward to the next week but it's got to be done. Thank you to everyone who have been sending good wishes.
In spite of the international IT outage all of our systems are still running just fine. So are all our customers who don't run Microsoft products. Viva Linux and OSX
Time to switch people!
Popped in to check on Anthony. He is doing well. He has another 2.5 hours on the machine.
I just blabbered about the morning and took some video of the machine. Does my head in for sure.
He is listening to music and watching some downloaded video. Seems calmer than before. I think it being the last day for him helps him stay focused and calm.
Just dropped Anthony off at the ward for him to start day 2 of the stem cell harvesting
I think he is more nervous today than he was yesterday. It's a curse knowing what is coming.
I'll look in on him later after I've had my blood tests. Hopefully he will be doing fine and watching a movie or listening to music. The fact that there is a whole new set of nurses doesn't help his nerves either.
Long day today. We got to hospital at 07:45 and Anthony went in to have tubes and things attached in one building.
Then off to the main hospital to be hooked up to a machine and keep still for 4 hours.
When I saw him during the day he was upbeat but definitely struggling. They finished with him at 14:00 and then we had to wait to find out if it was all ok. Turns out they need to do it all again tomorrow. So we will be up real early to drive to London and get him settled and hopefully they get the rest of the cells on Friday.
In theory the last day of injections for Anthony. He is very positive this morning but I think things are more painful as the excess cells are now transitioning into his bloodstream.
He is being brave and still doing work - I think it keeps his mind off the big day tomorrow.
We will be in the hospital with him tomorrow as moral support. It's going to be a long day but the stem cell harvesting has a hard stop at about 16:00 and then they keep him for another hour or so to check the quantity they have harvested and the quality. They also make the decision about whether he stays in and donates the next day again. I'm hoping it all get's done tomorrow.
Day 3 of injections. My brother is now feeling the pain in his bones, as predicted by the doctors, as he is over producing stem cells.
The stem cells are also migrating into his bloodstream and spleen now.
So more injections today and tomorrow and then stem cell harvesting on Thursday. Holding thumbs it all goes well.
Drive to hospital yesterday was ok. Loads of traffic in central London - even for a Sunday. Off to the hospital again today for the second batch of the injections for my brother.
He gets 2 injections each day. This morning he woke up feeling 'hung over' from the drugs.
He is going to try and get some work done before we go in again today
He has a massive bruise at one of the injection sites. Freaked us all out for about 2 minutes.
Off to the hospital today for the first of the injections for my brother.
We are driving. Taking 'pad-kos' to have on the way. Paying £4.50 for a coffee in London is now getting my goat up. Some places do £2.50 before 10:30. Almost palatable.
We have another 3 days of this and then harvesting on Thursday. They are going to cryogenically freeze the stem cells for the week or so before I get them. This is the stuff of science fiction.
I was at the hospital today for a final consultation and signing of consent forms.
It's going to be a massive struggle and challenge when you listen to what the consultants have to tell you about. I'm keeping a positive attitude knowing that there are loads of people out there sending good vibes.
I saw some other patients in the lobby and on the 2nd floor. They were all in various states of disrepair, despair and smiling faces. Loads of people without hair. Apparently I might loose all my hair around 10 days after chemo (not sure if it is the start or the end of the chemo). I remember my one brother always saying: "God only made a few perfect heads, the rest s/he covered with hair." I suspect he got that from my father!
We are now preparing for my brother to go and have stem cells harvested. He gets 4 sets of injections on 4 consecutive days before they attempt to harvest the stem cells on the 5th day. He starts injections on Sunday 14th.
I will be driving him to London each day for injections and on the harvest day. Hopefully they get everything in day 1 - if not he stays overnight and they harvest some more on the Friday.
Plan is that I will start my 8 day chemo on Monday the 22nd - all having gone well with the stem cell harvesting.