Monthly Archives: February 2012

NHS V Private Health Care

I’m English so I’ve been able to rely on the NHS, which, much to the surprise of many Americans I have spoken to is “free at point of service”. This doesn’t mean we get it for nothing, oh no, no, no. We pay a National Insurance contribution from our wages which means that when we need a doctor we go and see one or alternatively the doctor comes to us. It means that when we need a hospital we go to one. It means our medication and drugs and scans and tests and a whole battery of other things are paid for already because of our National Insurance contribution. It also means the unemployed are covered to the same level as everyone else

Over here, in the US, it is different. If you work for a good employer you may have an excellent health insurance package. A less good employer and a less good package and so on, but many people have no medical insurance at all and this causes fear. Even people with insurance policies are terrified of losing their home because of the size of the bills which very rapidly mount up. If you are too ill to work then you’ll lose your insurance through your employer just when you need it.

In England the parties are coming together to fight the proposed changes to the NHS, and with good cause too I think. For those of my friends in the UK who are in any doubt whether the NHS should be kept or privatised please read this blog by the wife of a cancer patient who, with colleagues, left his job as a matter of principal. For those of you who may not read it I’ve copied the horrifying bit below:

“He’s going to die from this, all because he quit his job almost 5 years ago. If he hadn’t walked out, he’d have insurance. He could have seen a doctor when he noticed something wrong. He wouldn’t be going to die.”

Please read the comment from nadeaucaron which explains just why her husband finds himself in this position.

Advertisements

2 Comments

Filed under Cancer, Health Insurance, NHS

Haiku

Friendless and alone
I must learn to face the white wall
Of  my cancerous life

3 Comments

Filed under Cancer, Haiku, Meditation, Poems and Poetry

What a lot of people to thank

I wrote earlier about the dull background pain coming from my lower back as the Neulasta coaxes my bones into producing the white blood cells my body needs if it is to have a fighting chance of coming unscathed through this period of all out attack on its immune systems. Well I no longer have a dull background pain – it hurts!!

The problem really is a very simple one but, naturally, it’s not all simple. It’s easy to take pain killers such as Tylenol to dull the pain but I also keep running a temperature anywhere between 98.8 and 100.4 today, and, of course, if I take Tylenol that will reduce my temperature but not address the underlying infection. What is the underlying infection? I don’t know but I do have a sore throat again. We were undecided about a trip the ER tonight but are both so exhausted that a trip to the ER is the last thing I want to impose on us if we have any other alternative, so, I took a couple of Tylenol which have dulled the pain to somewhere around racking and I keep having sweats and feeling clammy. My hope was the Tylenol would bring everything under control but I don’t think it is doing and at the moment I can’t get sufficiently comfortable to sleep, so, here I am.

There’s a famous Buddhist monk named Thich Nhat Han who has written many books full of good ideas. The first of his books which I read started with the words, “If you are a poet you will see the sun and the moon in this page”. He went on to develop an argument for the creation of a new verb “to inter-be”, but he also developed a chain of causation about the page in the book. Without the sun and moon the tree which was turned into paper could not have grown. Without the men who felled the tree it could not have been turned into paper, without the parents, grandparents and great, great grandparents etc those children would not have been born and the tree would not have been felled. Similarly for the workers in the paper mill, the type-setters, the delivery drivers, the shop-keeper and so on. A whole chain consisting of many thousands of people over an uncountable number of years just so that I could stand in Waterstones that day and read those words. Amazing isn’t it! Well today I had similar thoughts about cancer treatments. I expect to live because some bright researcher came up with a solution. I’m receiving more than one drug so there are four times that number who worked on the drugs. Then there are the people who did the research on which these researchers relied in developing the solution and so on back I don’t know how many years. Then there are the parents, grandparents, great, great grandparents and so on. The animals on which I imagine the drugs were tested without being consulted and their families stretching back into the dawning of time. Sadly, there will also be patients who volunteered for trials which weren’t successful I imagine. Throw into the mix all those people who trained these researchers and their predecessors. The people who helped to fund the research and their families shouldn’t be forgotten either. Suddenly I don’t just have to thank my doctor and my family for the their support. Instead I need to thank untold millions of people and animals going back to the dawn of time for the life I will lead post-cancer.

Thank you to all those unknown beings for giving me life.

1 Comment

Filed under Buddhism, Cancer, chemo, chemotherapy, Neulasta

Wash out the grey with Chemotherapy!

My hair continues to fall out, but until today it was pretty much only the grey falling out which prompted my wife to mimic a t.v. advert: “Too much grey hair? Get rid of it now! Wash it out with Chemotherapy!!” It’s good to keep a sense of humourous perspective on cancer I find and my wife’s comment had us both chuckling. Is it worth adding “But WAIT!! Apply now and have two infusions for the price of one!”

On the second day after my last infusion the chemo really kicked my ass. I mean big-time kick. Think Johnny Wilkinson winning the world cup. A really important kick. My infusion was last Tuesday. Wednesday was OK but from Thursday onwards I just haven’t really known much about what’s happening. I’ve lain in bed and not known whether I’ve been asleep or awake the whole time. I looked at something and realised after some indefinite amount of time that my eyes were just where I’d left them. Walking up or downstairs was a one hand on the rail and only move up one step at a time with both feet on the step. I felt like one of those poseable toys at times. I remember that one day I tried to open a Tupperware container but couldn’t work out how to do it! My wife just gave me one of her “I love this man so much” smiles and quietly took over the task. I’ve seen that smile a lot these past few days. I sit there and become aware that I’m being watched, and as I look up I see the love in my wife’s eyes: sometimes it doesn’t take any words at all to make the world feel a better place. In and amongst the zoned out feelings I’ve had has been a low-level back pain which I guess is from my bones being forced to produce white blood cells for me. On Saturday my throat started to hurt and feel swollen but I remembered that feeling from my first infusion so I just ate some lozenges and that seemed to make a big difference. Overnight my throat got worse and began to feel like tonsillitis and Sunday passed in the vague zoned out feelings plus cold sweats which may or may not have been to do with the cancer, my throat, or the heat and humidity of  Florida. Regardless of which of these was the cause I eventually took my temperature which turned out to be a little high at 99.3. Dr Tache had said that if I got a raised temperature of 100.5 then I should go straight to hospital, so, being aware that my temperature could go higher or lower I had a chat with my wife so that we could make preparations to get me to a hospital quickly if things worsened. I started taking my temperature every half hour and it varied between 98.6 and 99.8. I went to bed around midnight and was happy to be able to reassure my wife that it looked as though we’d seen the worst of it as my temperature was back down to 99.1. I woke about an hour later and checked my temperature again, just for confirmation you understand as I had no chills, no sweats or anything like that. I was amazed. The reading stood at 100.3! Perhaps I was going to be going to hospital after all. I thought I’d check the temperature again just to be sure, though why I would expect a different reading I really didn’t know. This time the reading was exactly 100. Good news eh? My temperature was coming down and coming down fast!

This morning my temperature has usually been around the 98.6 mark and my sore throat has gone, so, hopefully whatever the infection was has been defeated. My neck is now a little sore around the site of the lymphoma but I presume this is due to the kicking the chemotherapy is giving the cancer.

So, to end where I began. Hair loss. I don’t really know how I imagined the hair loss would work, but, at the moment, it seems to be working on a sort of speeded up natural model revealing the pattern of baldness I could/can expect later in life. Losing my hair like this isn’t the emotional experience for me that I understand it is for some people, but that’s not to say there haven’t been some scary moments from it. Having a shower and bringing my hands away from my hair and onto my face left me with what felt like a suffocating mat of hair over my eyes, nose and mouth. Panic was there for a moment. Turning my head on my pillow and finding myself breathing in my own hair is also a scary thing the first few times it happens. Maybe I should just shave it off and have done, but that would somehow feel artificial.

Leave a comment

Filed under Cancer, chemo, chemotherapy, hair loss, Hodgkins Lymphoma

Two weeks in

Yesterday was my second infusion, or the second part of my first cycle of chemotherapy intended to destroy the Classic Hodgkin’s Lymphoma which my body decided to add to itself. A landmark along the path I have to travel. There will be more but I’m just not sure what they will be yet. My hair is starting to fall out, so, I guess, going bald will be another landmark, and then, hopefully, maybe, it will grow back and that will be another landmark. The strange thing is that it seems only to be the grey hair which is falling out and this is leading to my seeming to have less, but darker, hair. My wife who has been saying that she can’t see the difference just looked at me said, “You’re right, your hair is falling out!” Very cheering!

I was full of positives as I explained to my oncologist, Dr Tache, just how pleased I was with all the things that hadn’t gone wrong as a result of the chemo, but, then, I got onto the occasional cough and the occasional tight feeling in my chest and we began talking antibiotics, and then Dr Tache was telling me that my bloodworks results showed a white cell count of only 0.5 which is very low. White blood cells are there as part of the body’s defences against disease and foreign objects and the number of them are an indicator of disease. In this case the disease they are losing to is the chemical concoction pumped into my body to save my life. Some disease eh? Anyway, as Dr Tache told me, “I have to knock you down before I can build you up again.” This led onto a discussion of how to remedy this, and Dr Tache’s recommendation was for an injection of Neulasta, a drug developed to deal with the effects of chemotherapy-induced nutropenia.  Naturally, as this is a drug, there may be side-effects. Dr Tache said it will hurt. Audrey, the oncology nurse who worked with me yesterday, also told me it would hurt, and today the nurse who gave me the injection recommended that I take Tylenol before the injection in order to minimise the pain I am expected to experience as the nutropenia makes my bones produce more white blood cells than they otherwise would. Still, it’s better to have this done than to contract some infection and end up dying isn’t it? Anyway, so far, I’ve not felt any pain from this process, maybe tomorrow will be different, hopefully it won’t as I’m not keen on pain and I’d rather not pump any more drugs into my body than I have to.

The oncology room was pretty busy yesterday but was still full of the good humour generated by the nursing staff, Audrey, Lisa and Pamela, all of whom always had a smile and a word for all the patients. How they achieve this I really don’t know. There was one lady there whom I felt like telling to shut up and wait a minute after an incessant and repetitive questioning as to where Lisa was, as she, the patient, wanted her oxygen changing. The fact the Lisa had gone for the replacement cylinder seemed to have been lost on this lady. There was another chap there who was so desperate to get away that he was squeezing the bag to try to speed things up despite Audrey telling him that doing so could blow the pump which actually regulated the speed of the drip so that it got to his body at the correct rate. There was another lady there who, if I understood her correctly, was going through cancer for the third time and was incredibly positive and supportive of everyone else in the room. The lady I was sitting next to noticed that I was doing the “steering wheel tom-tom” on my chair arm to the rhythm of her pump and we laughed about how the sounds coming out the pump sounded so musically rhythmic – 1,2,3 & 4, 1,2,3 & 4. I know I’ve made reference to this before but, since joining this not particularly desirable “cancer club,” I’ve been more than surprised by the amazing positivity and good humour shown by all whom I have encountered, not only in the oncology room but also on the blogs. When I hear stories as I did yesterday, and read on the blogs about all that some bloggers are having to overcome or to deal, with I feel very humble and very, very, fortunate to have a curable cancer and the support of a loving family.

Something which struck me is on the blog byoldermanyoungerman talking about being depressed after being cured. Now that was a novel thought for me! I hadn’t got so far ahead of myself. Yes, I’m staying positive and am sure I will be cured but thinking of my emotional state in four or five months time I’d only thought I would be ecstatic. Like oldermanyoungerman it had never occurred to me that I might have “a confused feeling–almost as if my cancer has abandoned me.” Now I need to give that possibility some thought. I’m not sure that is how I will view it, but I can imagine feeling some kind of hole in my life simply because a lot of energy goes into having cancer, it’s never far from my thoughts, the physical effects of the cancer and the chemo are pretty much in evidence all the time and now I’m checking clothing and  for falling hair. So I don’t think it will be exactly like mourning as oldermanyoungerman suggests, but more the absence of “a need to” do something. I will no longer be focussed on defeating this malevolent growth that arrived uninvited in my body. I have very little to compare that feeling to. The closest I can come is to go back to the first day after I had taken my finals for my B.Ed. It was a day I had been looking forward to for a long time. I remember it was a sunny day so I had taken a chair into the garden to read a book which I had been looking forward to reading for a long time. I sat in the chair and made myself comfortable.The sun was warm. The grass beneath my bare feet was cool and slightly damp with dew. Life was GOOD! My eyes started to work down the page. I read a couple of lines and then went back and re-read them, again and again. Eventually I had read a whole paragraph before having to go back and re-read it. Something felt wrong. Not with the book I was reading. Not with the physical circumstances, but, somehow, with me. I must have spent half an hour or so trying to read that first page and eventually the penny dropped. I realised that, for the first time in three years, I was going to read for pleasure and I’d forgotten how to do it. I could only read with a pencil to hand in order that I could annotate the text. Could only read with an intent to evaluate the characterisation, the plot, the style of the author and so on, but I couldn’t just read the damned book because I wanted to enjoy it! I suspect the correspondent quoted by oldermanyoungerman is correct in suggesting “I think there’s a huge rush of the tide to get you back as though nothing happened. To reassemble the picture that you had before,” That’s what I tried to do that day in the garden, to reassemble my reading skills just as they’d been before university, and it took me a long time to get over that and blend the old skills with the new. I need to remember that lesson when it comes to life without cancer.

Leave a comment

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

Gaol break!

Since my cancer was identified as Hodgkin’s Lymphoma, and increasingly since the start of chemotherapy, I’ve been feeling my world closing in, not shutting down, but definitely contracting. For the past two weeks my world has consisted of our house with the, occasional, addition of a stroll around our local conservation area at night. I’m very much a people person: I’ve always worked in a multi-person environment, always had contact with different groups of people in an average week, always had a daily commute of some sort from a 20 minute walk when I first started work, to a drive of several hours when I was involved in telecomms. Now, most days, I see no-one other than my wife and talk to no-one other than my wife. Occasionally my step-daughter is here which adds something to the conversation. Occasionally I talk with my daughters and grandchildren in England via Skype, but, on the whole, my life is spent in one of two rooms with conversation limited to only one person. Despite this I am still sane – or at least as sane as I’ve ever been!

Today my wife was taking her car to the garage for a service and I so desperately wanted to get out of the house that I said I wanted to go with her: she refused to take me, quite rightly pointing out that although the garage’s office isn’t exactly capacious, and isn’t overwhelmed by customers awaiting their car, there are people passing through and it and the office uses air con, so presumably any bugs are re-circulated. When my wife returned she suggested that, as I’m unlikely to be able to get out of the house at all for a few days, we might visit our local Menchies, which, we thought, mid-afternoon, was likely to be relatively empty, but, if not, then we could sit outside in the shade and eat our fro-yo, thereby minimising the risk of my picking up an infection. It was an interesting experience. I quickly came to realise how restricted my horizons have become in such a short time. The first thing I realised is that my focal range has become shortened – I no longer need to focus on anything further away than the front or back of the room I am in, and when I realised this, I had a little chuckle at the contrast between my focal length now and that of the guys who did go over the top who often had “the thousand yard stare”. The second was the volume. There were children at a nearby table who were chatting animatedly, there were teenagers bouncing around off each other in a boisterous display of energy which I envied them, there was the sound system pumping out something which I failed to recognise, there was the sound of traffic on the road. The other thing which hit me was the speed at which the world is moving. In an earlier blog I wrote about chemo and the speed of light and today I really felt the difference in the speed at which I was moving and the speed at which everything else in the world was passing by me. There was one exception. The children I mentioned earlier had two of their grand-parents with them, both a good bit older than me I think. Anyway grandma moved at a speed faster than I did but granddad didn’t, he was the only thing in my world which was moving more slowly than I was.  I imagine that after I receive my second chemotherapy infusion tomorrow he will probably be moving more quickly than I am! Anyway, today the risk was far outweighed by the boost to my morale from my gaol break.

Physically there have also been a couple of changes. The first is that my throat keeps going dry with an associated increase in the pitch of my voice. I don’t think the pitch of my voice has been quite so random since I hit puberty ;o) The second is that I’ve never had a strong sense of smell but, last night, my wife used “a few drops” of cleaning fluid and my nose really felt it. I just felt as though my nose was having the lining ripped out and slammed against the back of my brain. It was such an unpleasant experience that I had to go and sit outside on the porch for twenty minutes or so, and, even when I’d come back in, I stood by the open window so that my nose was getting the benefit of the outside air.

Leave a comment

Filed under Cancer, chemo, chemotherapy, Hodgkins Lymphoma

Two weeks in, well almost

I’m now almost two weeks into my first cycle of chemo as I go for the next ABVD infusion on Tuesday, and my mind keeps tripping back to the way I felt just before the start, when I wrote about my feelings under “Waiting to go over the top“. This time my feelings are very different, neither fear nor trepidation. In one sense I have almost the feeling of a youg child returning to class after a school holiday as I can hardly wait to tell the oncology staff what I’ve been up to. This time, sadly, there are no trips to the seaside, no exciting walks in the woods, no fantastic bike rides or swimming trips, because, largely, I’ve done nothing, but, on the whole, I’ve quite enjoyed the experiences of the past couple of weeks. Perhaps it would be more accurate to say I’ve quite enjoyed the non-experiences of the past couple of weeks, in that I’ve not had diarrhoea or nausea. That said, I’m beginning to wonder whether I am having some side effects as I now have an occasional slight cough and talking at normal volume requires a concentrated effort. Hopefully it will prove to be nothing of importance.

The fatigue is the strangest thing at the moment. I’ve gone from dropping asleep while reading, to the point where I now seem to need very little sleep although I do still feel tired. Take the last few days. I’ve been averaging around 2 hours sleep during the night but then I can sleep for another three or four hours in the morning without any effort, and then I’m fine until I go to bed again when, once again I will awake after a couple of hours sleep. My appetite also seems to have returned to normal and I’m back to eating three or four meals a day rather than grazing all day and night.

It will be interesting to discover whether the next half of the chemo cycle will take me back to the same point the first did in terms of feeling queasy, of being unable to concentrate and being able to sleep.

Many friends have recommended that I take up a new hobby, other than reading, while I’m experiencing the fatigue of chemo. One suggestion was that I take up gardening but that is a bit of a problem as the Association takes care of all garden work, so, if I can’t have a garden I can have tomato plants in pots! I have four plants outside our back door and they are now starting to set and smell wonderful. The smell certainly took me back to England, not only to my own greenhouse, but to that which was in the garden at the house of my aunts and uncle in Gawber. Coming from an area where most houses had common rear yards, a garden to play in was pretty amazing: the greenhouse just made it better. Even better was when my Uncle Tom would take me into the greenhouse with him to water the plants. I remember struggling to carry the watering can and then the smell which was released by the tomato plants as we’d brushed past them.

Another oddity is that I have been remembering many people and events from my younger life, people and events I haven’t thought of, in some cases for over 4 decades. When I first started having these memories I was put in mind of the dying man seeing his life flash before him, even though mine was experienced neither as a flash, nor as a slow motion, but, perhaps, as more of an extended time – different thoughts on different days over, perhaps, the last month. I do wonder why this is happening as I’m neither drowning nor suffering dementia. Perhaps it’s just that my mind has had so much less to do recently, and so much more time in which to do that nothing, that it has started reorganising my memories.

Leave a comment

Filed under Cancer, chemo