Monthly Archives: June 2012

Light at the end of the tunnel

Another infusion tomorrow and then only one more to go! I can hardly believe I am nearly at the end.

I looked back over some of my blogs the other night when I couldn’t sleep and was surprised at how low I had sunk at times – memory plays strange tricks doesn’t it! I suppose what I should take from that is that although I’ve bounced along the bottom a few times there’s always been a phase of improving afterwards and, since hitting my nadir the general direction has been upwards.

It has been a long journey, both physically in terms of restrictions on my mobility and emotionally in terms of my response to the cancer and to the chemo, and also to the restrictions on my mobility! I’ve found being more or less housebound and unable to get out and about to be very difficult. Hopefully, once I am physically over all this, I will remember the evenings when it took me twenty minutes to do the chemo shuffle to the end of the road and back, the days when I was desperate for someone to come home to talk to me, the days when I couldn’t hold a thought for a count of two and sometime not even for a count of one, the days when I would sleep 18 hours out of 24 and doze for the other 6. Hopefully I will work at enjoying every minute of the days of life I have left, days I wouldn’t have without the work of many, many people whom I’ve never met and whose names are unknown to history, days I wouldn’t have without the love and support of family and friends. I’d also like to thank those of you who’ve given me your support by responding to my blogs, especially when I was down, it helped, it really, really did.

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Filed under Cancer, chemo, chemotherapy

It doesn’t matter what order things happen in!

This piece is pure self indulgence and arises out of the title statement being thrown at me earlier today. I’d love to say that there’s a prize for the first person to figure it out and turn it into a sensible piece but there isn’t!

 

happened matter what It really actually order things doesn’t in! tonight in the middle what I heard of what discussion might be termed a That’s heated. ene!lievabblU the At thought tied least I it was key unbelievable, points were especially those of who said what and when when and why to events.  Had those something happened in a order then totally different different would have occurred events. discussion!Perhaps heated there no would have been If possible it’s to take out of order events and rearrange sorts them all of happen things might – just travel time think! man age wheel Stone has invent no need to fuel the someone has popped along and delivered a 4 x because 4 and enough to a few years last. calculus Newton Perhaps and wouldn’t have bothered inventing our had happy traveler time off dropped a couple of Apple Leibnitz Macs for them. nonsensical Clearly the whole reorder claim concept is, things in a ridiculous ground sequence and to take happen them out of sequence that and them in order to the high is simply.

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Silly o’clock again

It’s been a while since I posted at silly o’clock. It’s a habit I was very happy to get out of but, tonight, or rather this morning, here I am again, unable to sleep and buzzing with indignation. The frustrating thing is that I can say no more about why I am buzzing with indignation because of my self-imposed rule not to identify people. To be honest I’m only blogging tonight to get that statement out into the air and hope it does me some good.

So, having established that I’m not awake because of the cancer, perhaps I should give an update. I saw a pulmonologist a couple of weeks ago and he decided that there’s nothing wrong with my lungs and that the cough I have is probably down to stress and it will therefore disappear altogether in time. Tonight it’s been difficult to stop coughing so maybe he has a point! My oncologist decided that if I’d had no more symptoms suggestive of a stroke then it probably wasn’t a stroke a few weeks ago and we should just continue as we were, which is fine by me. After this last infusion my left little finger is numb once more, kind of like when you bang your elbow except this time it’s lasted a few days. Other than being fatigued again that’s it. Two more infusions to go and then I can start trying, once again, to build a new life.

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Am I the caterpillar, the chrysalis or the butterfly?

I think the second Buddhist meditation I was taught was one on finding my “I”. In essence one tries to identify just where one’s”I” is: is it in your body, if so whereabouts? If you lose your finger, a hand, an arm etc is the “I” still within your body, has it gone with the limb or has it ceased to be? This meditation came back to me very powerfully the day my hair came out in the shower and I subsequently found myself looking into the mirror at a head the shape of which I simply did not recognise! Suddenly me head had ceased to be mine! The face was sort of familiar, but the head shape very definitely wasn’t. Since then the same has happened with my body as the chemotherapy takes its toll of my body hair, fat and muscle. Similarly my brain and thought processes are often as ephemeral as gossamer. There are times the only thing which seems to continue to be me is my own sense of identity and yet even that seems to be up for grabs on many a day when the chemo claims payment for saving my life by draining all the energy from me or takes away all power for sustained (i.e. longer than one minute) thought. I may look as if I’m listening. I may sound as though I am listening. I may even have been listening to start with, but, that doesn’t mean I have the faintest idea of what is happening right now.

So, who am I? That sounds like a really important question, but I think a more important one is, ‘Who am I about to become?’ It occurs to me that the cancer/chemotherapy process can, and possibly usually is, seen as a destructive process, but, perhaps, one should think of it instead as a time of metamorphosis, a time when the old me will turn into the new me, rather like a caterpillar entering its cocoon and leaving it as a butterfly. The question is, what will this new-look me actually look like? That sounds such a simple question doesn’t it? The answer is a bit scary as I really don’t know. Oh, I know that I want to be compassionate, loving, honest, a good husband, father and friend, but then I wanted to be all of those things before I discovered I had Hodgkin’s Lymphoma. During the chemo treatment I’ve discovered my emotions have come to the fore on many occasions when I’m sure they previously wouldn’t. It’s not unusual for me to have tears in my eyes and on my cheeks several times a week. When I read the blogs of other cancer sufferers it’s not at all unusual for me to have tears streaming down my face as I realise how very fortunate I have been and just what strength many of you out there demonstrate as you get on with your life and plan for a future. To start with I found it difficult to deal with crying in this way. It’s not something I’ve done. I’m reasonably sure that I would like to keep the ability to empathise and to have my compassion touched so easily, but I’m not sure I want to have tears springing from my eyes unexpectedly in this way.

Any thoughts on the kind of butterfly I should try to be when I leave my cancer cocoon?

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Filed under Buddhism, Cancer, chemotherapy, Hodgkins Lymphoma, Meditation

Might be of interest

I came across a blog by Cancer Research UK which leads to this News Digest of new drugs and treatments in relation to cancer. Maybe there’s something for you in one of these

http://scienceblog.cancerresearchuk.org/2012/06/09/news-digest-asco-conference-new-skin-cancer-drug-ct-scans-and-cancer-risk-and-more/?utm_source=gplus_cruk&utm_medium=cruksocialmedia&utm_campaign=owngplus_post

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I’m not really feeling myself!

OK let’s be clear about this, this is not a salacious posting ;o)

One of the things which has been becoming more and more apparent to me as the chemo continues to grind away at my body to make sure the Hodgkin’s Lymphoma has really gone and that I will continue to be cancer free, is that my body is changing. Yes, the first big change was my hair coming out all over my face in the shower. When that happened it really was a moment or two of panic as I really didn’t realise what was between my face and my hands, what was trying to get into my eyes nose and mouth. It may sound stupid but it never occurred to me that when my hair came out it would do so like that. I’d kind of imagined it lying on my pillow when I awoke, or maybe coming out as I combed my hair, or maybe, in a more exotic visualisation altogether, wafting gently on the breeze as I strolled down the street. I’d already shaved off my beard rather than have it fall out in patches so I was already having to get used to a new face, but, on the day my hair came out in the shower, and I mean about 90% of my hair, I went in feeling somewhat normal and came out to see a head shaped very differently to anything I’d imagined, not even the same sort of shape as is evident on my baby photos. : very much egg-shaped. I kind of felt as though I was being used as a model for the Muppet Show. Since then the facial changes have continued as my eyebrows and eyelashes have thinned or disappeared. On the plus side my hair is now starting to grow back on my skull and I’ve taken to shaving once a week to keep the bum-fluff on my cheeks from looking as ridiculous as it must have done when I was about 13 or 14 years old and bum-fluff was considered an outward sign that we boys were turning into men!

I’ve also lost a lot of body hair. My wife reckons I am, or was, a bit hairier than average so when my body hair first started to disappear it was barely noticeable, and then came the day when I put my hand on my stomach and it just felt wrong. It took me a while to realise that the touch felt wrong because I was actually feeling the skin of my stomach – something I haven’t done in probably 40 years or thereabouts as during that time there was always hair between the skin over my stomach and my hand – and it felt very odd. As time wore on it was possible to see the changes on my hands as the hair on the back of my hands and fingers first thinned and then retreated, and, in some cases, just disappeared altogether. It occurred to me that it would, prehaps, have made for interesting time-lapse photography but I was too tired to give it more than a passing thought, let alone work out how to get the same shot day after day. My arms now look as though they are fringed with hair rather than being covered in it: this is because the hair is so thin that it is barely visible against the skin but stands out against surrounding objects. The loss of hair from my legs has, perhaps been the strangest as bald patches began to appear on the sides of my calves where they make contact with the bed when I am sleeping.

I’ve also lost a lot of weight, or at least I think I have, though one of my neighbours tells me that she can’t see the difference. 16lbs loss and she can’t see the difference!?!? I guess it just indicates how much more I need to lose to get back to a reasonable weight, which, in fairness, is something I’ve been aware of for a good while now. Anyway what that weight loss means is that my body is changing shape, sometimes on a daily basis it seems, and this means that, when I do something simple such as rub my hands across my stomach in the shower, the body they feel doesn’t really match with the memory imprint, well I suppose it might if the memory imprint was to be searched back ten or fifteen years. I mean, there’s no hair, I now have ribs, and, there’s even beginning to be a suggestion of abs! Not all the weight loss is down to fat loss, no, some of it is down to lost muscle mass. Now I’ve never been hugely muscled but I’ve led a fairly active life with walking, kayaking, mountain-biking and hurling my grandkids around in ways which make them squeal with delight, so I’ve had a good muscle mass, but now it’s very much reduced. I rub a hand along my shoulders and there feels to be nothing there but skin and bone. I look at my forearms and can see that they just aren’t as thick as they used to be. My thighs are changing shape as well.

So maybe now you understand why I can say “I’m not really feeling myself”.

One thing I have been meaning to mention on here for a while now is Cancerville. Cancerville is really William (Bill)  Penzer Ph. D. a psychologist whose daughter has had cancer. Bill first came to my attention a few months ago when my wife returned from a find-out-more-about-cancer event saying she’d met someone who would like to talk with my about my experiences as someone with cancer for a book he is writing, and that he’d given her a copy of his previous book “How to Cope Better When Someone You Love Has Cancer”. Bill explains about the book and how he came to write it on the Cancerville website, or you can read reviews on Amazon. Now this isn’t a sales pitch, and I have to say that “How to Cope Better When Someone You Love Has Cancer” is not the kind of thing I would have read when my first wife was diagnosed with cancer, but it will be very helpful to a lot of people and if some of your family are struggling then it may be worth pointing them towards a copy either in a local book shop or at the library. I mention this because, after several conversations and emails, I’ve come to the conclusion that Bill is a very genuine guy who will respond to your emails to him. More importantly Bill, as he admits in his book, was surprised at some of the places he found himself when coping with the news of his daughter’s cancer, so he does speak with humble authority and his thoughts on cess pits and dams are worth looking at.

You may be interested in reading these articles

CT scans on children ‘could triple brain cancer risk’

Cancer: Understanding the incurable

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Filed under Bill Penzer, Cancer, Cancerville, chemo, chemotherapy, Hodgkins Lymphoma