Saturday, 30 January 2010
I was quickly wheeled out and into not just any side room but the same side room I have already spent two weeks in earlier this month.
Frankly I am grateful for the peace and quiet and the unlimited visiting hours a side room brings. I also get to turn the lights out when I like.
Today though I ache. More than yesterday. This week I have only felt it when I twisted the wrong way but now its beginning to be there even when I am sitting still. It is hard though to discern how much of it is linked to whatever fever I have and how much of it is just sitting in bed all day. I feel like I need a damn good stretch but an attempt earlier today was aborted due to to many twinges and a sudden feeling that the room was icy cold.
Nothing has grown from the blood cultures that were taken yesterday. Blood is taken and then injected into two bottles that have a sloped internal bottom. On the slope is a nutritious medium for viruses, bacteria and fungus to grow on. The blood slides over this slope and the bottles are left to see if anything grows on the medium. Having no result today does not mean I am in the clear. It should take a few days to grow and there would be concern if there were enough bacteria in my blood to culture this quickly. The jury then is still out on that one.
Tomorrow will just be a day of laying around until Monday's CT scan when they hope to take a look at my now shrunken spleen and find where this pocket of infection may be hiding.
Until then I have a lot of sleeping to do.
Friday, 29 January 2010
I'm not in my own room though which is a mix of blessing and curse. I think I'd go spare to back in there again so soon but when being on an open ward you certainly need to leave your privacy at the door. There are some interesting characters in here too and I have taken to giving them 'prison names'.
"Toenail" is next to me. I cannot see much of him but I can hear him cursing occasionally from the other side of the curtain, what I can see if his foot and he has one massive nail on his big toe. The rest are all trimmed.
Over in the corner we have "Waterman". He's been sitting out in the open for the last few hours trying to coax the tiniest amount of pee into a cardboard pot. After a while the nurses drew the curtain around him but not before a young lady, visiting someone else, had to ask him if she could borrow his chair. She didn't seem to know where to look and he answered politely as if he wasn't cupping himself with one hand and tappng on the box with the other. Behind the curtain there have been continued mutterings of "come on, come on" until recently a celebratory "oo that's it" seemed to signal the end to his plight.
In the other corner sits "Phones" a quiet unassuming guy who asked me to help him move his television earlier. Always seems to be wearing headphones.
Opposite me is "Common Chris". He actually sounds quite well spoken but, according to the name writing above his bed the H has been dropped so it's just Cris.
I have no idea who the last member of our team is. Visitors have come and gone but he is yet to emerge from behind the curtain to my left.
I don't know what they make of me, the new boy, I am certainly a few decades younger than most in here. I guess we'll all bond over the weekend. I hope there's no initiations or anything. Taunting in the night that kind of thing. It was only last weekend I watched Shawshank again and the tactics are clear in my mind.
I am on an IV drip of antibiotics now. Samples of pretty much everything have been taken today and somewhere in this building some microbiologists are riffling through my fluids trying to discern what is wrong with me.
Until they do I am stuck here. Judging by the bleeps, snores, and other bodily noises I am hearing right now I think I am going to be very grateful of my noise cancelling headphones.
I may even wear them to sleep.
On leaving the hospital I was somewhat dazed to be out in the world again; in need of a shower, a shave and a haircut. Some of these tasks were achieved immediately, others over the next few days. I was tired and weak but felt a weekend of rest was all I needed to be truly back on my feet. Seemingly endless dreams of hospitals, nurses, needles filled my restless nights but as time passed I wasn't feeling any better.
As the weekend wore on the chestyness I had felt in hospital seemed to be getting worse and I ached slightly. Each morning since has brought on more aching to the point where I now move around the flat like a seventy year old man. Ooing and Ahhing whenever I get up or sit down. Breathing normally is ok but to take a lungful of air is an effort and at night I have been sweating. Sweating so profusely that most nights require four or five changes of sheets. The bed is now made in such a way that it is only my side that needs changing but it is having a real impact on the quality of sleep I am getting. Some mornings I only get up because I cannot be bothered to lay there and sweat any longer.
Relaying these symptoms to my consultant yesterday as part of my weekly follow up revealed that none of them were expected side effects of the chemotherapy. What appears to have happened is that an infection has crept in whilst my defences were down that wasn't caught by the cocktail of drugs I was being given.
So here I am, back for tests. Hoping that I am not told to stay at the end of the day. Mainly because it is Friday so I am guessing that, if kept in, the next possible release date is Monday.
This is not where I want to spend another weekend.
Bloods have been taken, a cannula is in my arm, and a CT scan has been booked for later this afternoon. Lets hope that what ever they find can be dealt on a strictly Out Patient basis.
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.
Friday, 8 January 2010
Even with minimal white blood cells there are there indicators in a blood sample that show if the body is battling with infection. Eventually the results returned and this magic indicator had trebled since yesterday. To save the fuss of going home only to rush to A&E in the middle of the night it was decided to admit me then and there.
The Day Room that I usually only spend 20 minutes in slowly cleared, fellow patients heading home as I waited for my bed. On occasion a slightly mad woman would wander in, once to weigh herself whilst mumbling, or to get some water. Still mumbling. It turns out the mumbles were due to her being evicted from her private room and onto a noisy ward full of people groaning and making noise.
Now that I am in that private room, I can see why she was annoyed. It's clean, quiet and warm. Far better than a ward any day. There's a fridge, an loo of my own, no one is going to nick my stuff, and I'm not going to wake up with any mad folk looming over me in the middle of the night.
With copious amounts of saline and anti-biotics dripping in to me I'll be here all weekend and possibly most of next week. Hopefully this action now will stave off any real suffering later on, only time will tell.
Thursday, 7 January 2010
Having dug the car out of the 4 days of snow surrounding it we made a slow tentative drive over icy roads to the hospital. A&E was reasonably empty, populated by a handful of 'blokes' bleeding from various places getting mawfy wiv each uva.
Thankfully I get elevated to the top of the list and was in triage in minutes leaving the bloody, vomit ridden waiting room behind. Blood was taken and then I was found a bed in a cubical whilst waiting to be assessed. Eventually a gung ho doctor appeared whose ability to do anything involving the addition or removal of a needle was, quite literally, painfully flawed. He soon handed over these tasks to a far more competent nurse whilst concentrating his efforts on diagnosis and bossing others around.
It was a four or five hour process while blood results were waited for, x-rays were taken, in a bid to find the location of the infection. None could be found and once the blood results came back I was seen, thankfully, not to be neutropenic. That is to say I still had some immunity in my system. As a precaution is was given a paracetmol drip and a saline drip to bring the temperature down and help hydrate me. Meanwhile I sat, cubical curtain open, watching the frankly terrifying world of late night A&E cases drift past.
Alcohol induced injuries, illnesses and, in one case, psychosis all floated past my bed. At one point a teenage girl was being sectioned whilst, in front of me, a old woman who had slipped on the ice and broke her hip struggled through a haze of senility to understand why she was in pain and why her family weren't there to explain things. Doctors it would appear had been failing to get her to consent to an XRay and she'd fought them off as they tried to get her on the table.
I can see that I am now at the point in my treatment where, as expected, things are going to go downhill. It's going to be worrying and uncomfortable but for all the diffuclties I am going to enounter I'm aware that there are people out there living far more uncomfortable lives, some for all of their lives, and of all the people being treated last night I am glad I'm me.
Wednesday, 6 January 2010
Tiredness and snow.
Both feature highly amongst the endless glasses of water and pill popping.
I was slightly concerned that my drugs, delivered to the hospital every day from North London, might not make it through the snow as the country crumbled under a mild dusting of seasonally expected frosting. Either that or it would be just me and the drugs in an empty room bereft of someone to administer them. Happily this was not the case and whilst some of the other, considerably older, visitors to my particular ward had stayed at home, putting off transfusions for another day when they were less likely to suffer a broken hip skating across the hospital car park, both my drugs and the nurse to administer them were present.
The Haematology Day Unit is a particularly serene place in the heart of an otherwise bustling section of the hospital. A sixth floor room, nestled between two wards, with full height windows looking out over the local town and on to Richmond Park. Here, as doctors as nurses scuttle passed outside, the inhabitants merrily discuss the lunch menu, the inclement weather, and how posh it they felt when Camp Coffee was introduced during the war to plug the gap in place of dwindling tea supplies.
Without doubt I am half the age of anyone else attending.
Run with efficiency by an always cheery nurse everyone present gets their drips, plasma, and drugs administered in what ever way needed. Gaps in the drip changing schedule and trips to the pharmacy are filled with a tea round or two. Come Friday I'm tempted to take in some biscuits to top off the pleasant air and fill any gaps left by the often lack lustre offerings from the hospital kitchen. Whilst my visits are quick some of my fellow inhabitants are there for the day, I'm sure a Custard Cream or two will help them through.
With my injections done and a cup of coffee had I headed back home through the snow. There are still no ill effects to speak of aside from the arm thing and a headache above my right eye just after my jab. It felt like the brain freeze that, ordinarily, can only be achieved my sucking too hard on a McDonald's milk shake. It soon subsided and is probably not related to the chemotherapy at all. I'm at the point now where I am mentally on the lookout for every ache, pain, twitch and itch that might be the start of something more severe.
As I write more snow is forecast for tomorrow but thankfully my drugs for the rest of the week have already been delivered. There's nothing to stop me getting to the hospital and the nurse indicated a dogged determination not to let her patients down so all being well my therapy will not be snowed off. Tomorrow is when my neutrophils should really start to drop. Bring on Day Four!
Tuesday, 5 January 2010
yesterday came to fruition with a lovely clear, albeit frosty, morning
AND FedEx delivering my blood to NIH on time. It was a slow walk up to
the hospital for no other reason that my better half is now 7 months
pregnant. The distance is not great but we had to leave home with enough
time for a slow waddle to the other side of town.
Once there the process was simple: a jab into each arm and the deed was
done. Both arms ached for ten minutes or so after the injections but it soon subsided and after a coffee we meandered back home. Encamped on the sofa in the warm I sketched out my drug timetable to keep track of the variety of pills I now need to pop each day. With my immune system set to take a serious dip in a day or two I need to medically kill off any possible infections lest I end up in A&E.
Currently in my 'bag of meds' I have:
Aciclovir - A general anti-viral drug aimed at cold sores, shingles,
chickenpox, Bell's palsy, and a lovely collection of various types of
herpes. Any of which I could certainly do without. One pill to be taken
at regular intervals four times a day, every day.
Cotrimoxazone - A general anti-biotic aimed at Listeria, Traveller's
Diarrhea, and load of things I've never heard of ending in '...osis'.
One to be taken three times a day although only on Monday's, Wednesdays,
and Fridays. Never before have I ever had a pill that only works
Domperidone - Sounding a lot like a top end champagne it is nowhere near
as enjoyable. It is an anti-nausea pill two of which can be taken up to three
times a day that ironically tastes absolutely foul. Nauseating in fact.
I'm holding off on the Domperidone until sickness sets in rather than
take a drug I do not need; I think there's enough of a chemistry set
rattling around in me for now.
The only other thing I need to take is water and lots of it. Whilst my
liver is working overtime to break down the cocktail of drugs I'm
ingesting, my kidneys need as much help as possible to flush out the
Hairy Cells that will soon be dying off, hopefully in great numbers. To
offer some assistance I need to drink, I'm told, six pints of water per
This I am managing but I think I am beginning to slosh when I walk. I
have never been quite so hydrated or had to visit the loo quite so
regularly. If frequent peeing is all I have to contend with throughout
this treatment then frankly I'll have got off quite lightly.
Monday, 4 January 2010
With the multitude of Bank Holidays that we’ve had of late today was the last, eleventh hour, opportunity to get a replacement set of blood taken and shipped so first on the agenda was a good deal of bloodletting followed by a tense and nervous wait in the coffee shop at the main entrance waiting for the FedEx van to arrive.
It was always going to be something of an odd day but it’s strange that my biggest concern was whether or not FedEx would manage to achieve the simple task of putting a box on a van, then a plane, then a van. Much to our surprise they accomplished the first step in a timely manner; tomorrow will tell whether they managed the rest.
Having dispatched some of my blood on its international adventure, the time came to treat the rest of it to something else quite new. Given the severity of my disease and its treatment at a cellular level the process of chemotherapy was oddly painless and without fuss. Cladribine used to be delivered into the body via a drip taking a few hours every day for seven days, medical science has moved on and the drug is now introduced to the body in simple subcutaneous injections over 5 days. Not unlike getting a flu jab: tiny needle; over in seconds.
Each day’s dose is split over two injections, in my case one into each arm although apparently abdomen was also an option. After a little consideration I couldn’t see any real advantage in the latter, and passed on the opportunity to strip off in a room full of others already with enough ills of their own.
And so it was, two small jabs and the job was done for the day. Resting up on the sofa thus far I feel fine, this is however only Day One. I’m advised that day’s seven to fourteen hold the potential to be the worst. One day at a time though.
For tomorrow I have only two hopes: One that it’s a dry enough for the morning trip to the hospital to be on foot, the other is that a box of blood arrives in a timely manner on someone’s desk on the other side of the Atlantic.
Friday, 1 January 2010
The week since Christmas has been a quiet affair, recovering from the excesses of food and drink consumed. The annual mid-winter feasting followed by the traditional detox, lots of fruit, vegetables and water this week as I try and ready myself for next week's events.
There is a heightened sense of nervousness in the house at the moment. Most days come and go quite normally but nights pass in uneasy dreams. Although not working I still set an alarm so that I can make the most of each day. I may not do much but at least I am up; about; awake.
Time is spent readying the flat for the new arrival due in March. Work that I know I will not be able to do in January and whilst I hope to be back on my feet by February that short month will be over before we know it and suddenly a crying, kicking, poo factory will be wanting somewhere to sleep. The ‘baby stuff’ is already being put to good use, a sterilizing bucket sits in the kitchen with cutlery, mugs, etc. for me to use once I have no immune system and we’re readying the antibacterial wipes to attack door knobs, light switches, keyboards and mice.
Planning for and talking about the time post-Chemo is the only way to stop ones mind from dwelling on the worst of the possible outcomes. We’re in an emotional quicksand at the moment: to keep moving forward, looking at the future is the only way through. To stop and dwell on my plight will just cause us to sink, the going will be harder and the outcome less bright. Excitingly most sentences start with the phrase “Next time we do this there’ll be a little one with us!”
Christmas gifts of books and CD's have been readied in the lounge. A pile for me to work through whilst I rest up praying that tiredness and nausea is all I have to contend with. I’m grateful for the glut of classic films on at this time of year. Battle of the Bulge being the recent highlight whilst I cupped endless mugs of tea, rain lashing against the window outside. I’ve also compiled a collection of old Western’s to see me through the days when I cannot go out. A happy reminder of ice cold Sunday afternoons at my grandmothers house when I was growing up. No heating, huddled around a tiny fire, watching cowboys on the telly whilst we ate jam tarts.
I had my final pre-chemo consultation yesterday. It was a bitterly cold yet thoroughly refreshing walk up to the hospital and then the usual routine of bloodletting and people watching in the waiting room. A good book is essential as appointment times seem to have a natural drift to them and are dependent more on the backlog of bloods in the lab than the time you report for duty. My current treatise is the thoroughly relevant “Bad Science” by Ben Goldacre and I highly recommend it to anyone, Leukaemia sufferer or not.
11:30 is the time it will start, or thereabouts once forms have been filled in and, no doubt, more blood taken. I fully intend to continue this blog as the treatment progresses but it is highly likely, I am told, that I will be admitted to hospital at some point so do not take an apparent cessation of writing to mean the worse. It is more likely that I am either very tired or failing to get comfy in a hospital bed and unable to commit my thoughts to the world wide web.
Happy New Year all; it’s going to be an interesting one.