Wednesday, 10 February 2010

I gave them my "Rehabilitation's just a word" speech, and told them "just to go ahead and stamp their form" but stopped short of calling them "sonny".

As the day wore on yesterday rumour was in the air that I was on my way out. First the pharmacist popped in to see what drugs I already had at home so that they would not have to give me a completely new batch when I left. Then the nurse that runs the day room where I had my Chemotherapy popped in to say what good news it was that I was going, but still at that point my doctors had not said that I was going home.


My release had been rumoured over the previous few days but there had been nothing confirmed and sometimes hospital administration can move pretty slowly so I was not going to get my hopes up. Having spent just over a week running endless tests on my blood whilst filling me with antibiotics the medical team working with me had succeeded in removing all of the symptoms that I had come in with but, much to their disappointment, had failed to isolate the cause.

I am pretty sure that, determined as they are, if they could they would have kept me forever until they finally, finally, put a name to what ever it is that was in me. HCL patients quite commonly get fevers and infections post-Chemo that often go undiscovered and I am pretty certain my team would like to have been able to say they had found what was eating me and maybe point the way for future investigations. This time though it was not to be.

Although I have been allowed out, I am not in the clear just yet.

Physically I feel fine although I have become far to used to frequent napping and need to wean myself off of that particular luxury. I do not ache and I can breathe normally. There is however a 'marker' in blood tests that can show whether the body is succumbing to infection. CRP or C-reactive Protein is made in the liver and its level in the blood rises in response to inflammation mainly at the site of infection. The normal level for CRP is "up to 10" my level is currently 116.


The argument is then that there is still a significant source of infection in me and there is a strong possibility that, now I am off of the intravenous antibiotics and bumming around at home, it will slowly cause me to exhibit more symptoms to the point where I have to readmit myself to hospital. At which time they will culture everything and begin treatment once they have put a name to my pain.

There is the more optimistic possibility that my CRP will continue to drop. That no infection will rear its ugly head, and that given a week or so I will feel more confident that I am not going to relapse and I'll start looking forward to things rather than dreaming of blood tests, hospital food, and cannulas in my arm.

I need this infection not to happen again as time is now very tight. Fourteen days from today I am going to be a father and I would dearly like to be welcoming my offspring into the world as a normal human being rather than a fellow inpatient.

We cannot have all three of us in hospital pj's at the same time. That would just look silly. Although if it happens I will post a photo.

Thursday, 4 February 2010

I should have written sooner. Much sooner. To leave my ongoing tale with a full body CT scan looming on the horizon and then not utter a word since is pretty bad form. It is not that there have been so many crises to deal with or that there has been news that has been simply to bad to bare. If I am honest with you I have been doing an inordinate amount of sleeping and although my fever has begun to dwindle one of the times it does flare up is the same time of night I prefer to write and of the two activities laying in bed and burning up always wins through.

The scan went ahead on Monday and my early hopes that I would not have to drink that terrible liquid again were soon dashed as two bottles of the stuff were brought to my room one for immediate use and one for a few hours time. Having scoffed as much food as possible before my 'nil by mouth' deadline I was eventually wheeled down to Radiology and having been parked in a draughty doorway for a while was led into the big room and passed through a large whirling hoop a few times before being wheeled back up to by room.

It is worth pointing out at this juncture that I have not lost the power of my legs but, when in hospital, you must be wheeled everywhere. Its the law. If necessary they may even force you to place a blanket over your knees for good measure.

I have had CT scans before but was still highly nervous about the results of this one. There is that fear that, in looking for the source of infection in such detail, that they'll find something unrelated but staggeringly serious that may have ordinarily gone unnoticed. The results came late in the day on Tuesday and, thankfully, there were no tumours or failing organs. There were also no signs of lost car keys or old coins. My spleen, it is to be noted, has shrunk back to its pre-leukaemia size, it is now a mere eleven centimetres and it is estimated that I have lost three kilograms in body weight because of it.

There was no sign of the source of any infection but as this week has progressed my anti-biotics have been changed to one that got me out of here last time. Early on in the week a number of times in the day and night I would have what I call an 'episode': A feeling of sudden coldness and utterly uncontrollable shakes. Climbing under as many blankets as I could muster over an hour or so I would warm up and the shakes would stop only to be replaced with an intense heat. My skin would be physically hot to the touch and exhaling would be like breathing in a desert. Throughout the whole thing my head would throb, not as a headache. No real pain. Just a pressure. A seemingly endless pressure. This would also last at least an hour and I would remain under my blankets throughout until I felt I could emerge into the world again.

As the week has gone on, particularly under my new drugs, things have slowly improved. I still get measurable temperature spikes, which are highly annoying and blights on my otherwise good 'obs' charts, but the symptoms of my episodes are now far, far reduced. I can still feel them coming on but the effect now doesn't get much further than "oo its a bit cold in here" for half an hour before an hour or so of "oo its quite warm, I'll have to open the window." The head throb is not as harsh or long lasting which has meant I have started listening to more music now. Something I was really missing but just did not have the inclination to do.

I would like to have been out of here by the weekend but it is clear that that is not going to happen. Even if I had a symptomless day tomorrow they would still want to keep me in for the weekend but there are rumours that they may let me go outside between drugs which could open the door to the prospect of real food. If not then I am seriously considering the various methods I may need to employ to get a Chinese takeaway delivered from my favourite oriental eatery in Richmond.

Having dreams is the only way to get by in here. Even if they will never come true.

Saturday, 30 January 2010

For while I just sat watching my new cell mates and the nurses and visitors coming to and fro. The guy next to me asked for a private room and was being readied for a move but by the time the night shift came on he was still with us. There were repeated requests and eventually a nurse came in to announce that he was going now. Five minutes later another nurse, one who had treated me a lot during my first incarceration, came in to tell him he had no reason to have a separate room and was not going to be getting it. She then turned to me and said "Richard. You have a temperature. You're getting your old room back."

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

Well I didn't get out.

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.
My release was just over a week ago and so welcome it was that I have been spending time enjoying the delights of a daily shower, the joy of multiple rooms and decent cups of tea rather than turning my attention to writing. Today though I find myself perched on the edge of a hospital bed in a ward just down the corridor from my original room. Post treatment recovery is not going as smoothly as hoped.

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

The cannula has just been removed from my right arm. It is a process that is by far the most painful part of my entire treatment mainly because cannula's require so much sticky tape and I have such hairy arms. The plastic tube is now replaced with a mild sting that over the next few days will turn into an itchy little mound as the hole begins to heal. For now my days of intravenous antibiotics are behind me. I can now look forward to washing with two hands and brushing my teeth with the right.

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

Well the usual Monday team meeting followed by a review of current projects and then a plan for the week probably happened but once again I was not there. I never thought I'd long for Monday mornings at the office. More awake today than I have been I did check my emails and I even Skyped with a few colleagues but soon fatigue overcame me and having found the optimum tilt on my bed I napped while I waited for porridge to arrive.

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

Yesterday was spent mainly sleeping and in the moments I was awake I was not inclined to write. Late Friday I started to get a sore throat, it worsened through the day yesterday and come this morning it felt like I was swallowing razorblades. A doctor who came to see me on Saturday had a look but did not seem overly concerned. "The inside of your throat is a little red, but there's no puss." he offered cheerfully. Before then adding that I couldn't make puss even if I wanted to.

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

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.