Monthly Archives: March 2012

Why I don’t have enough white blood cells

I knew that chemotherapy was a destructive process, but, until I started getting really low scores on tests for my white blood cells, perhaps I hadn’t realised just how destructive.

White blood cells are a significant part of the body’s immune defences. In effect white blood cells are the security forces of the body: when they pick up on an intruder of some sort, whether a germ of some kind or a bacteria, then the white blood cells spring into action either secreting antibodies or surrounding and devouring the bacteria. White blood cells have a short life typically existing for a period from a few days to a few weeks. If the body is on the alert because of an infection then there will be more white blood cells produced in order to deal with the intruder. Conversely, when the body is not under attack then there will be less of these cells. Chemotherapy kills white blood cells.

A low-level of neutrophils means that your body is less able to fight infection and so what would ordinarily be only a minor infection has the potential to have a disproportionately large impact with the possibility of disrupting chemotherapy treatment. In order to avoid this possibility my oncologist, Dr Tache, has recommended that I have a second course of Neulasta, and, once again, everyone has told me that it could be painful. They were right! I had some pain last time but it was handled easily with Tylenol and I thought the same thing was happening this time too, but, last night, the pain ramped up another level so that the small of my back feels as though bone is grating on bone. The Tylenol brings the level of pain down for a an hour so but then it starts to climb again. Sitting is painful. Standing is painful. Lying down is painful. I feel as though I would like to try levitation so that nothing is pressing on anything else. Anyone know of a magician willing to try this for me?

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Filed under Cancer, chemo, chemotherapy, Dr Jason Tache, Hodgkins Lymphoma, Neulasta, Neutropenia, White blood cells

Chemo sleep, Kes and The History Boys

It’s now a week since I had my fourth ABVD chemotherapy infusion and, as expected it knocked me sideways in terms of energy. I had expected to be tired but it’s not a tiredness, nor a fatigue, of a type I’ve ever known before. I’ve come off walking, kayaking and biking trips with muscles screaming for relief and ready for a hot bath, a warm meal and my bed, but it’s not like that. I’ve done overnight walks where the journey home has been plagued by my wanting to nod off, but it’s not like that either. It’s more a wanting to go to sleep rather than being tired – I know that sounds utterly ridiculous but it’s the way it feels. It’s very strange to go to bed knowing I want to sleep and then having to work at it. It’s very strange to find myself, after the passage of an indeterminate amount of time, realising that my chemo-affected brain is working but doesn’t know whether it is trying to wake up or go to sleep and also has no idea of whether or not I have been to sleep during the missing time. On such occasions time is very fluid. Today I took to my bed for an afternoon nap – yes I’m clearly practising for my dotage! This would be around 4.15 p.m. Some time later I went through the “my brain is working but should it be telling me to sleep, should it be waking me up, oh I think I’ve been asleep as I feel a little refreshed but I’m not sure, and to feel so different I must have been out for hours” routine. I’d been asleep, if indeed I had been asleep, for no more than 25 minutes. I really wonder whether there is some kind of chemo-induced state of awareness, a sort of mental twilight zone which is neither awake nor asleep, not conscious but not unconscious and neither alert nor not alert. It’s very strange!

Today I thought my energy levels were a little better so I thought I’d do a bit of light housework by running the vacuum cleaner around downstairs – the floor is all tile so it’s really not too demanding in terms of pushing the cleaner compared to doing so on carpet. Anyway, the vacuuming went really well and I didn’t feel tired by it, but, then I needed to pull the sofa back to the position I’d pushed it from.  Naturally in pushing the sofa I’d been able to use muscles in my back and legs. In pulling it I wasn’t able to use anything other than my arm muscles without a lot of thought and they weren’t up to it! Too weak to pull a sofa on a tiled floor! Let me stay out-of-the-way of seven stone weaklings lest they decide they can get revenge on me for all the sand they’ve had kicked in their faces!

Another strange thing tonight was that I discovered TCM were showing the film Kes which was made in and around my home town. Nothing unusual in that you might think, except that most of the actors have very strong Barnsley accents which I would think would be fairly impenetrable to many Americans especially when kids cartoons such as Thomas the Tank Engine and, I think, Fireman Sam, amongst others are dubbed with American voices instead of the British ones used in production! Click here for the introduction or here to see the incomparable Brian Glover playing PE teacher Mr Sugden living his dreams of glory as he happily clips pupils around the head! Kes is, I think, about many things but particularly education and the role it might be able to play in improving lives. It’s only a couple of weeks since I watched The History Boys which also examines the impact of schooling on the lives of a group of students. One significant difference is that The History Boys are an academic elite destined for Oxbridge whereas Billy Casper is told by his brother that he won’t even be able to get a job down the pit as you have to be able to read and write to do that. Two very different films but both very interesting.

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Filed under Cancer, chemo, chemotherapy, Kes, Sleep, The History Boys

Spring time

Yesterday I received an email from my youngest daughter telling me about her visit to Locke Park Barnsley with my grandchildren and she mentioned that it was the first “warmish” day they’d had for a while. The word “warmish” got me thinking about the changing of the seasons, and how you can actually feel that happen. I remember walking through the rec on my way to catch the train to work and noticing the small changes in the air temperature, the colour of the light and the changes in the path-side flowers as they grew, sometimes on an almost daily basis, and changed from a slender shoot just poking above the ground into a beautiful yellow daffodil. On mornings such as those it was a good start to the day, and, also, it has to be said, a good ending to the work day as I walked the same path homeward some eleven hours later. As Spring began to move towards that short period which it shares with Summer, before Summer is fully ready to take charge, the air would have warmed to the point where I didn’t bother with a jacket and I would luxuriate in the warmth of the sun through my shirt, would just enjoy the feeling of the air on my skin knowing that for most of the rest of the day I would be trapped in a sweaty tin box on rails and subsequently inside a building removed from any sensory input from the real world. Later would come Autumn. Once more a time of changing light but accompanied by the often stunning colours of the leaves on the trees, and, if no-one was around to see me reverting to child, the crunch and swish of fallen leaves as I plowed through them rather than walking around them as an adult should, a big smile on my face as memories of my childhood walks to school came flooding back. Then, naturally, came winter: cold winds, rain and snow, but the morning walk could still be enjoyable as my skin responded to the temperature or to the pummelling it took from wind-driven raindrops. I miss that interaction with the world. Here in Florida we don’t have the four seasons and it always seems to warm or hot but at least, before I got this cancer, I could get out amongst the natural world in a local park, could delight in the changing interplay of flora, light , wind and time. Now however my days are largely confined to indoors with my explorations limited to the evenings when it is cooler, when walking is less tiring and I don’t have to hide from the sun, and I really miss walking in the natural world. Hopefully in three or four months I will again be physically strong enough to go for a walk in the natural environment and I really, really, really look forward to that!

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Day to Night

From such a bright day to such a dark, dark night.

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Life and Cancer – a conversation

“Psssst”, said the darkly swaddled figure from the gloom shrouded recess in the night lit alley on the seedier side of town. Again, “Psssssst!”, and, as the cankerous figure to whom this was said turned suspiciously, for it was not used to being addressed in this manner, the words “Over here!” were accompanied by a bare gesticulation of the arm.
“Me?”, said the cankerous figure with some surprise, for it was not used to being addressed at all let alone accosted as it made its way through the world. In response to an affirming nod the cankerous figure slowly approached the shrouded recess peering into the darker gloom for some indication as to who, or what, was interrupting his own journey. “You look kind of familiar”, said the cankerous one, but I don’t think I’ve ever seen you around here before. Have I?”
The swaddled one made no reply save only to shake his dimly seen head, but ,in doing so, the hood which had been casting a deeper shadow within the shadow that was his disguise moved allowing a passing moon beam to momentarily light his face.
The cankerous one stopped in sudden amazement. “I was right! I do know you, but Life, what are you doing here? This isn’t your part of town!”
“I have a job for you”, said Life simply.
“I don’t work for you”, replied the cankerous one. “I work only for Death, and it’s his business I’m about tonight, so, do not delay me for he is a hard taskmaster and does not take well to delay!”
“Death knows I am here and talking with you. We have been speaking about you and your work for some time now, as he grows increasingly frustrated with your ability to carry out his work now that the humans have created more cures.”
An angry noise rattled from deep within Cancer, for it was Cancer with whom Life spoke, but Cancer said nothing.
Life continued, “We have been discussing the possibility of you doing some work for me as well as for Death, and tonight I need to talk to you about that before you complete the task alloted to you by Death. Tonight your task is changed.”
“I don’t understand”, said Cancer. “Death wants me to pass my gift to the man you see at the end of the alley there. I cannot change that.”
“That I know”, said Life. “I have spoken with Death of just that man. At birth that man was given the ability to see life, to live life to the full, and to help others to achieve the same. He has squandered that gift, but I wish to give him another chance to use it.”
“I don’t see how that involves me”, replied cancer. “I give cancer, I don’t give life!”
“Yes, I know”, said Life softly, “but the humans have found more and more cures for your gift, so that you are less and less successful in achieving Death’s grim order and you simply disrupt mine. For this reason Death and I have formed a new partnership in which you will use your talent sometimes to achieve his ends and sometimes to achieve mine.”
“I still don’t understand”. replied Cancer, for in truth he was not blessed with insight and had rarely had the need for reflection on his dark professional achievements, deriving satisfaction as he had from the grief and confusion of the humans with whom he shared his gifts.
“Then let me explain”, continued Life. “At one time your gifts achieved Death’s goals because they were always fatal, but that is no longer true, and your work increasingly fails him. If human projections are correct then the day will come when your gifts no longer cause them fear because they will all be curable. When that time comes you will be of no use at all to Death and will, yourself, wither and die just as you have caused so many humans to do throughout history. In the meantime you can serve me by using your gift to cause humans I select to have an opportunity to reflect on the meaning of existence and learn to appreciate Life and all that Life has given them. Instead of giving these humans one of your gifts which is fatal I will want you to give them one which is sometimes curable. Now do you understand?”
“I think so”, replied Cancer. “You want me to be selective in my gift giving. To give so that Death does not always receive my victims.”
“Just so:, replied Life, “Just so.”
“But, I can still use my gift to cause fear and suffering amongst these mortals, for it is upon these emotions that I feed?”
“Oh, yes”, replied Life, for what would life be without the chance to overcome fear and suffering?”

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Why can’t my white blood cells count?

Yesterday was infusion 2 of cycle 2 of my chemotherapy treatment for Hodgkins Lymphoma which takes me to more or less the half way point of the original planned treatment of four cycles of two weekly treatments. Dr Tache’s plan is to probably send me for anther PET scan after my third cycle and then make a decision as to how many more cycles I should have because I developed heavy night sweats immediately before my first chemo treatment.

It seems that without the aid of additional drugs my white blood cell count is somewhere between low and very low so it’s another injection today which can be expected to make my bones ache. Last time this wasn’t too bad except for the occasional day so I’m hopeful things will be the same this time around.

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Is life or death random?

It seems a long time since I last posted here, the reason for that being two-fold. Firstly I’ve been pretty knackered from the last chemo treatment. The fatigue lasted well into the second week accompanied by heavy indigestion which seemed to hit particularly hard every time I tried to lie down, and was then followed by, well, let’s not get too graphic here, let’s just say “several trips to the toilet without much notice” ;o). The second is having something to blog about. I don’t want my blog to become just a list of all the days when I feel really shitty. We all know there are days like that. We all know that with chemo there are more days like that than you really want to experience and that you don’t get many days in between in which to recharge your batteries, and then, yesterday, I was watching a football match (for my US readers, that’s a soccer match) between “my top flight team” Spurs who were at home playing in the FA Cup against Bolton Wanderers. The score was 1-1 and the match seemed as though it could go either way when Fabrice Muamba, one of the Bolton players, suddenly just fell over. There’s more detail about it here. In essence this fit, healthy athlete seems to have suffered a heart attack. Fortunately he did so in a sporting arena where there were paramedics and doctors immediately available to give significantly more than just first aid, rather than miles from anywhere in the middle of the countryside.

Several things came home to me watching this drama unfold on t.v. First was the behaviour of the crowd. Football crowds aren’t noted for their good behaviour but here both home and away supporters were moved by some common humanity to try to reach out to a man who was, quite literally dying before their eyes, and the only way they could do so was to retain either a respectful silence or to chant Muamba’s name – they did both. When the match was abandoned the supporters didn’t riot because their expensive day out had been ruined, they just left. Second was the faces of individuals in the crowd. Instead of picking up the bare-chested “warriors” in the stands as they had been doing during play, t.v. camera’s instead picked up on faces showing genuine grief and concern and not only amongst the Bolton fans, there were men in Tottenham’s colours who were clearly emotionally rocked and there were women, too, in those colours who weren’t ashamed to cry for a man they didn’t know. The third thing was the randomness of death. My dad survived the second world war, but many of his comrades didn’t, and,  I suspect, there are two ways of dealing with the fact that the men standing to your right and left get killed but you don’t, either you accept that you are special in some way and that Life has some purpose for continuing your existence at the expense of your friends, or you just accept that Life is a lottery and when your number’s up then it’s up. Dad took the latter view and I pretty much took after him. Anyway, back to Muamba. Here was a young man, only 23 years of age, whose family had moved to England seeking political asylum when he was just a child. A young man of exceptional ability on a football field but who is, from what can be determined over the internet, also a good man  in general, a young man who seems to have done well at school as judged by his GCSE and A-level results, a young man with his feet on the ground as it were. As a professional footballer Muamba will have had not only immediate access to excellent medical treatment but that treatment will have been proactive with Bolton’s medical team doubtless taking a battery of measurements of his health in order to build a comprehensive picture, so, you’d have thought, it would be unlikely that such a man would suddenly collapse with a heart attack. I mean this wasn’t some middle-aged guy who took up jogging to keep fit, he isn’t someone who develops his own training regime to such a point that it becomes self-injurious, at the moment before his heart attack he was, and I realise I am repeating this, a fit and seemingly very healthy individual with every reason to believe he will have a long, healthy and successful life, and yet, there he was, having a heart attack on the grass in front of around 36,000 people in the stadium, with another half million or so watching on t.v. in America, and I don’t know how many more worldwide. Not a good place to die, but, hopefully, Muamba will survive and go on to enjoy a long and happy life. If, however, he’d had that heart attack whilst, say, rambling in the Pennines then the chances, surely, are that he would have died before medical personnel capable of applying electricity to restart his heart could have arrived. This sort of randomness is there at all levels, and at all times though perhaps we don’t always notice it. A friend of mine had a heart attack on a school field trip. Luckily it was to a center of population but it could just as easily have been to some out-of-the-way place as it was a geography field trip. Had it been to an out-of-the-way place then my friend would probably have died.

In the same way my own fate, at least in terms of surviving this cancer, may be more or less random. I hadn’t noticed the lymphoma until it was discovered on a routine visit to the Primary Care Physician which I attended only under pressure from my wife. It hadn’t been spotted by the doctor who carried out my physical for my application for US residency a few weeks prior to that check-up, so presumably it was growing fairly quickly and, had I given into my wife’s requests for my check-up at an even earlier point then, presumably, the lymphoma would not have been spotted until some time after it actually was. Presumably the speed of growth would have eventually brought it to my attention but, unlike another friend of mine who discovered his lymphoma whilst shaving, mine wasn’t like an egg on the side of my neck. Anyway, back to the point, the timing of the discovery of the lymphoma back in mid-December was fortuitously random, had it not been discovered when it was then it is entirely possible that, rather than dealing with a stage 2B cancer it would have had the opportunity to spread throughout my body and I could have been looking at a different prognosis.

Hopefully Fabrice Muamba, myself and countless millions of others will go on to beat our own particular disease and go on to live long and happy lives.

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