Wednesday, 20 January 2010
I can also look forward to going home.
Tomorrow, at some point, once doctors have signed the right forms and the pharmacy have supplied me with a big bag of pills I'll be putting on jeans and a t-shirt and heading home. My neutrophils are now at 1700.
The day started gloomy on the outside and once again gloomy on the inside as I contemplated another twenty four hours in my room. I had pretty much lost all enthusiasm for doing anything other than napping or watching the pigeons on the roof outside. It is not that I was short of things to do, to occupy my mind, I was just sick of this little room. I still am, but at least there is a light at the end of the tunnel.
It is too early to tell whether the treatment has worked, whether any hairy cells lurk in my marrow unzapped by the Cladribine injections that started what feels like a lifetime ago. I am guessing that, as my counts were at zero for a few days, the treatment got all of the ones in my blood. Only another bone marrow biopsy will tell whether it was 100% successful. That will come in a few weeks and unpleasant as it is I am not dwelling on it now. My freedom is the only thing on my mind and it is hard to decide just what I want to do first when I get out other than run from room to room in our flat just because I can. Making a decent cup of tea and cooking a proper meal will certainly be high on the agenda.
Not before I've had a proper shower though.
There's just so much I can do its overwhelming; I think its time to dig out that list I was making.
Monday, 18 January 2010
Being a Monday morning the hospital was full of more bustle than it had been at the weekend. There's a greater concentration of doctors whizzing around and more specialists brandishing the tools of their trade. A cheery phlebotomist breezed into my room not long after the remnants of my porridge had been whisked away, replaced by a mug of tea. Armed with a large 'sharps bucket', a few empty vials, and an elastic tourniquet band with vampire bats printed on it, she prepared to take this mornings bloods. Two vials rapidly extracted and she fluttered away.
For those not nerdy enough to have googled it yet what I am stuck waiting here for is a decent Absolute Neutrophil Count. In a microlitre of normal blood, that is one cubic millimetre, there should be between 1,500 and 2000 neutrophils. Below 500 and you are considered neutropeanic. C'est moi!
On Friday I had zero.
By Saturday I had 30.
Today, ladies and gentlemen, I can announce that I have 400! Cue subdue fanfare.
I take this two ways: Firstly it means that I cannot go home so I am stuck with my room and the 'one hand wash' for a while yet. What it also means however is that the reboot of my immune system has started, my body has found itself able to make some new white cells and they are slowly coming out and doing their thing. My sore throat is still there but much subdued, inspection with a Maglite earlier today by one of my doctors revealed the presence of puss. Not something I would ordinarily be happy about let alone share on the internet but it is a sign that my body is fighting back. My cannula holes still itch but are slowly disappearing. Today at a cellular level wounds have been cleansed and new flesh created. This is, whenever it happens, amazing, in the true sense of the word, but today it is also exciting.
My doctors both expressed genuine excitement at this weekend's change being a team that really invest in the people they are treating rather than adopting a them versus the disease approach whilst being annoyed by the human that's in the middle. I really cannot fault the care I have had here although I think it is less my charm and more that my wife is heavily pregnant that helps curry favour with the nurses.
I have no idea how the growth of neutrophils is supposed to work. It may be linear, logarithmic, or just completely wayward. As such I have no idea how long before I have 500 needed to leave neutropenia or even the magic 1000 that may secure my release. At least we are back into normal weekdays now so they will be counting them every day.
Sunday, 17 January 2010
The throat is now calming down and the used cannula holes in my arm that yesterday lay dormant have now swollen a little and itch like buggery. I'm hoping that these are all signs that I have an immune system that is waking up. That neutrophils are being made and that they are slowing swilling round my body doing stuff, fighting infection, repairing wounds. I could very easily, of course, be wrong. I have no medical training. No idea about molecular biology. I am merely clutching at straws, hoping that tomorrow they'll find cause to release me back into the wild.
In the absence of any hospital solution my water is now being brought in by my wife. Glass Perrier bottles containing cool, but once boiled, tap water. I simply couldn't stomach the sterile water they were giving me and am sure that it had enough plastic content to induce something even worse than what I have already. To not drink anything could damage my kidneys as they try to dispose of a gazillion dead hairy cells and a noxious concoction of anti-viral and antibiotic drugs. If your pee starts looking like coca cola it really is time to hydrate some more.
My brother has sent in his PSP so what with the laptop, camera, audio recorder, phone, broadband stick, and Bose headphones I now have enough kit here to start up a small electrical retailer. Given that I cannot leave the room I am pretty confident however that none of it will get swiped. If I was on an open ward I would probably be sleeping with it all under my blankets. Having moved into my room in a small rucksack I think I am going to need a suitcase when it finally comes to moving out.
Lack of stimulation then is not my real cause of boredom. It is lack of connection, connection with the outside world. I watch people pass in the car park below yet feel no association. It has snowed, rained, and been sunny whilst I have been in here and yet my room remains at a constant temperature. The only means of escape I have found is to slowly compile a list of the things to do when I get out of here. The top ten simple things.
Friday, 15 January 2010
Temperature is still down and, I feel, down for good. The supplements and injections keep coming and thus far there have been no really adverse reactions. My bones ache every now and then, particularly in my legs; it passes after a minute.
A burst pipe up the hill from here has cut supplies to parts of the hospital including the one tap that offers filtered water to the neutropenic. I now have expensive sterile water, ordinarily reserved for washing out wounds, that tastes exactly like the bottle from which it comes. Making it far less enjoyable and much harder to keep up my high water intake.
In the back of my mind I think I had hoped to be leaving here today so an edge of disappointment tinges the air of boredom. Come on little neutrophils get working, there's a big world out there and I would like to get back into it.
Thursday, 14 January 2010
Today I am still feeling physically fine. Temperature is still down. The recovery, it would appear, has started although there is still no light at the end of this immediate tunnel: no sign of my exit from this room.
In addition to the pills I still have to take and the antibiotic drips I am still on, a number of other ingredients have been added to my daily input. Yesterday I was given a small bottle of nutrient rich milkshake, 'Fruits of the Forest' flavour. Two or three of these turned up throughout the day and none tasted like fruits from any forest I have ever been in. This morning a strawberry one turned up and tasted exactly like the previous ones and exactly unlike strawberries. My latest was chocolate. This did taste different. Very different in fact. And if you held it in your mouth and concentrated really, really hard you could just, just imagine that it might once have been near something chocolate.
Along with some of these bottles comes a small round pot, about an inch tall and half as much wide, of a purple substance. At first I thought it was a taster of the stuff inside the bottles so just drank it. Further investigation has revealed that it is a collagen supplement. For those of you now expecting me to return from hospital with lush, pouting lips prepare to be disappointed. Applied in a skin cream, lipstick, or even eye shadow collagen is useless. A waste of money. It does nothing. Ingested however it can benefit skin growth, the formation of tendons and increased joint mobility. I assume therefore that this will help those bones now bereft of marrow to start working things out or maybe it is just to counter the terrible effects being in the same room for a week can have on ones skin. I guess the NHS are aiming for the former.
I have not invested any time in investigating just where anyone would get collagen from to add to a supplement. As it is not something derived from plants, nor something we produce in excess as humans and are want to give away I'm guessing it comes from animals. Animals that may not have openly offered it up and from parts of them that only celebrity Devonshire chefs would ever consider eating. I'm happy to down a shot of it twice a day though; it tastes a lot like fruits of the forest.
Also added to my regime is a shot of a growth hormone.
No, I am not going to come out of this ordeal taller any more than I am going to have fuller lips.
This hormone is one naturally produced in healthy bodies, often when were unwell, and in my case is aimed at encouraging any neutrophils made since chemo that are loitering around in my now roomy bone marrow to come out and start earning a living. Ordinarily new cells come out of marrow because its full of even newer ones and theres not much room. With enough room in there for them to swing a cellular cat they need a little coaxing.
Last on my list of rare, if not new, experiences, for today at least, was a shower. Enjoying its warmth for a good twenty minutes I emerged feeling human again. Taking them every morning before work it is easy to regard them as the norm and forget how great a restorative effect they have, not just on the body, but also on the mind. Without them we soon decend into a smelly heap. Our minds never cleansed, as time goes on, become more aware of how our skin feels getting dirtier, how our clothes no longer hang on our bodies without sometimes sticking, and how, with human vanity as it is, that others may perceive us as lesser people.
Having Cancer does change your outlook on life. It makes you reassess that which is important and that which is trivial. From now on any working day that starts with a shower is a good day; anything else from there on is just a bonus.
Wednesday, 13 January 2010
I would not say that yesterday was awful as there are plenty more in greater discomfort than me. Plenty who suffer excruciating pain. And plenty, like the woman in the room next door, who, confused and scared, cry out in the night unaware of their plight simply wanting to see a familiar face to make it all go away.
For me yesterday was quite a low day. I was riding a high temperature and, despite numerous samples, swabs and prodding, doctors could not determine its cause. So while they swapped around a few of my drugs I slept, shivered, and sweated my way through the day only getting out for ten minutes for a trip to x-ray just along the hall.
Physically I was at my worst but I had also lost my dogged self assurance that I could ride this out. As time went on I grew concerned that they had not narrowed down the source of the infection but the more tests they did the more I was concerned that they would find something else unrelated to Leukaemia.
Once all tests had been done I was given a paracetamol to reduce the fever. My temperature returned to within normal limits, and I slipped of to sleep.
Waking this morning my temperature was still low indication that there was more than mere paracetamol at work. After my first "obs" at about eight I stayed awake; watched the news; and saw the milky sun rise over rooftops freshly dusted with snow.
Breakfast was porridge followed by a CT scan of my throat and chest.
I have read, watched films, and browsed emails from work in nearly equal measure and only now, as the day reaches its end, do I feel tired. My hopes now are that my CT scan is clear of anything - either associated with or not related to Leukaemia - and that this marked improvement on yesterday is not the eye of the storm but a permanent clearing of skies. The start of the road to recovery.
A countdown to the day when I can go home and sleep in my own comfy bed.
Tuesday, 12 January 2010
Monday, 11 January 2010
It has been a slow day and these four walls are now beginning to close in. There's a picture of two fishing boats in a Cornish harbour at low tide that I have invented an entire back story too. I'm wondering about asking for some paint so I can decorate the walls. They don't need it but it'll kill some time.
I have been very tired today. Frequent naps between feeding and drugs has been the general theme. I have also been a little nauseas. Not in a dodgy food way; more in a too much beer last night kind of way. Ah, if only that were the case. I assume that, with all white cells destroyed, and hopefully the hairy ones, my body is now filling my marrow and blood with some fresh, new and non-malignant ones. That is probably pretty hard work under the hood. I'm happy to take it easy although first thing this morning I had planned to do a little work to try and throw some normality into the day.
An impromptu nap soon saw an end to that.
The blood transfusion that started yesterday finished today and I now look a more normal colour. Bags under my eyes have gone as have tiny blood spots on my skin. I get small twinges under my lower left rib that I hope are my massive spleen shrinking but it could just be my stomach rebelling against the hospital food. It is not wholly bad but it lacks fibre and in a lot of cases flavour. Thankfully because I am neutropenic I get a hot meal at lunch rather than just a sandwich. It does however mean I am working through the menu quicker.
Tiredness is overcoming me once more and another snooze is in order. I'm hoping that the next few days will see a steady increase in energy as I continue to recover and eventual step out into the outside world.
Sunday, 10 January 2010
Not mentally, in that respect I am still optimistic, but my immune system, for months lowered; over a week dropping; today hit zero. This afternoon my neutrophil count was 0.03%. If they're going to get to zero then that's where they are as I type. Another day has passed in my little room and this morning, under cover of a face mask, I was allowed down the corridor to another ward where I could have a shower.
Feeling particularly icky, already unkempt hair beginning to matt into greasy clusters, I was so so grateful for the feeling of hot running water pouring over me. I had been detached from my drip and my peripheral line wrapped snugly in a number of plastic aprons to stop water ingress. The combined feelings of cleanliness AND freedom were amazing; fifteen minutes of bliss well worth the logistical effort required.
Back on my bed, clean and gleaming, I was soon hooked back up to my line. Supping a cup of tea. Eating cookies.
I find myself things to do in my room but, as a feel fine, there is not a great deal to tell: The tightening in my chest seems to get worse at night, I think it is brought on by tiredness, but has not yet developed into a full on cough. In addition to my saline drip, intravenous anti-biotics, and anti-viral pills I am now also having a blood transfusion. I'm on my second unit now and there's a third to come tomorrow.
My lovely chemo lady bounced in to say hello on her way to another room, bag of yellow chemo in hand for someone requiring treatment more time consuming than my own.
Family have visited bearing the holy grail of a T-Mobile USB broadband stick, the most painful part of my stay so far has been trying to set it up. Having got them to finally take some money I was not allowed onto my blog because "it may contain porn". The solution: to go to a T-Mobile store and prove I was over 18! Many phone calls later I got the lock removed remotely but not without great effort. My advice to anyone following in my footsteps would be to set such a service up way, way before hand to avoid any unneeded stress.
Still my T-Mobile antics filled an otherwise empty afternoon and I got to speak to some new people. Which was nice. You have to enjoy the small things in here as there is not a lot else going on; I've readopted the enthusiasm of a child for all things new.
Last night we had a fire alarm which caused a lot of bustling on the wards around me. Content to stay put unless I actually saw some smoke I felt genuine excitement at being able to watch the fire engine arrive, lights flashing, in the car park six floors below.
Hospital Radio has been everything I hoped for and a joy to listen to. Even in this enlightened digital age the audio levels are all over the shop, segways are fumbled, and the music mix is so specifically chosen that it has equal irrelevance to all who listen. Meanwhile the screen emitting the noise shows a Powerpoint presentation advertising the Patientline service featuring people grinning so inanely I had to turn it round to point the other way lest I become possessed.
Sanity will be reintroduced to my little world this evening by West Wing Series 1. I do not plan to plough through the whole box in one sitting but I hope that just observing some extended, intelligent, adult conversation will pull my mind back from the happy clappy place it feels inclined to visit. My only other option is to just let go: stick two pencils up my nose; my pants on my head; and to start saying "Wibble".
Saturday, 9 January 2010
I am thankful for the large window that offers a high rise view of the snowy vista outside; I am grateful for the cookies and snacks brought in by my wife early this morning.
Despite disturbances in the night to change drips or take drugs I slept well, albeit aware of an increasing tightness in my chest. Not part of a general ward the nurses left me alone to sleep in for as long as I wanted although I missed being woken by the kicks of my unborn daughter as she wriggles around in my wife's tummy.
The morning saw an experiment in one handed washing. I tried not to snag my peripheral line as I took of my t-shirt and threaded my drip through it before embarking on an ordinarily simple venture. Face, armpits and teeth were all I managed this morning. Now I have rehearsed I shall aim for a greater level of thoroughness tomorrow.
Currently, as I type on the worst keyboard in the world attached to a screen reminisant of the rogue ship's robot in Wall-E, I feel pretty reasonable. My hips ache, the beginnings of a cough still linger in my lungs, but aside from that things are good. My consultant popped in to say hello - on a Saturday - and is happy about how I am doing and how severe the drop in white cells has been. She showed visible excitment at the prospect of feeling my spleen later in the week.
All I can do now is sit and wait, eat my snacks and hope for a decent film on TV tonight.