Friday, 15 January 2010

It's our one week anniversary, me and my room and it is a relationship that will extend until Monday at least. A lack of neutrophils in this morning's counts means I'm spending another weekend away from home.

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

They say that cancer changes your outlook on life. I guess that premise could be broadened to include any event, illness, or disaster that highlights to you your own mortality; brings home just how little time we all have to offer; and comes as a stark demonstration as to just how fragile all of our holds on life really are.

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 feel like I might just be starting to climb out of the hole.

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

Bored.

Hot but shivery; they cannot tell quite why.

Sleeping, napping, then sleeping some more.

So very, very bored.

Monday, 11 January 2010

So habitual had it become that I dragged my drip stand all the way to the toilet only to remember, once sat, that there was no drip and I was not attached. I hurried along hoping to get back to my bed before anyone came in and saw what I had done. This morning saw a few hours of respite as, even with tubes dangling from my arm, I gained a level of freedom of movement not encountered since yesterday's shower. Had I have known I would have delayed the 'one armed wash' I am becoming so expert at. Once you accept that there will be water everywhere by the end of the process the rest goes smoothly.

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

I've hit rock bottom.

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

It has been pretty much twenty four hours since I was admitted to my room. People have come and gone with drugs, cups of tea, microwaved meals, and a variety of machines for monitoring bodily functions. I have not stepped out of the door and have been told not to without at least the precaution of a face mask.

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

The last day of my Cladribine injections finally into my arms was followed by a long wait for blood test results. I am officially neutrapenic and, having experienced some shivering overnight there was concern that neutropeanic sepsis may have been lurking in the darkness.

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

My uncharacteristically feisty end to yesterday's blog was soon brought down as, late last night, my body temperature went over 38 degrees, a sign of possible neutropenic sepsis and a sign that a visit to A&E is on the cards.

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

The jab into the left arm was fine, the one into the right sent an odd sensation down my forearm. Not pain as such but oddly uncomfortable. It soon passed but clearly, in that arm at least, the drugs were flowing into my system quickly. Theme of today has been tiredness.

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!