Everything was going fine until Monday evening as I was getting into my pyjamas and I noticed a little rash on my leg. But not just any old rash, no, this was a rash I recognised. The shingles are back.
This morning I went to the general practitioner who, after speaking to my oncologist, prescribed a normal dose of Aciclovir. I later spoke to the oncology nurse who assured me it was nothing to worry about. It is not a reflection on the cancer coming back. It is just unlucky.
I've caught it a lot earlier this time as well so hopefully I won't end up with patches of discoloured skin that currently grace my rear end.
Wednesday, July 25, 2007
Saturday, July 21, 2007
the strength of ten bears
My girlfriend, Imelda, has the lowest pain threshold of anyone I've ever met. I can beat her at an arm wrestle with no effort whatsoever. Or so it was. Just the other evening she challenged me to an arm wrestle. And I lost. That is how weak my arms are.
When I'm doing Yoga at the gym I catch myself in the mirror and notice how thin my arms and legs are. So out of proportion with how tall I am. And in the past 2 weeks I've noticed how much strength I've gained. Lots more to do and if the sun would stay out for more than an hour then I'd get out on my bike a bit more.
When I'm doing Yoga at the gym I catch myself in the mirror and notice how thin my arms and legs are. So out of proportion with how tall I am. And in the past 2 weeks I've noticed how much strength I've gained. Lots more to do and if the sun would stay out for more than an hour then I'd get out on my bike a bit more.
Friday, July 13, 2007
"...yeah not too bad, a bit better everyday actually..."
This is my general response to the various ways of asking how I am. And it's true. I'm feeling surprisingly well. However, I am suffering from the following ailments:
"Brain Rattle" - this feels like a dehydration headache, and most probably is as I am so thirsty all the time, but it occurs when I move my head at any speed other than quite slow. It feels as if my brain is loose inside my head and after the 'violent' movement the brain impacts on the inside of my skull and leaves me in pain for a while.
"Swollen Neck" - Ever since I got out of hospital, and some of the time I was in, the sides of my tongue hurt, along with the areas on my neck to the sides of my windpipe. It feels like I have a throat infection and feels uncomfortable when I swallow.
"Pins and Needles" - In my face. Particularly on a morning when I'm dehydrated my tongue, lips and nose feel all tingly and require various strange looking face exercises to get rid of. A big glass of water also helps.
"Seize Ups" - Especially when I'm tired on an evening and I've been an enjoying a TV show or film I attempt to get up and realise that I am actually stuck in the seated position. It takes an enormous amount of effort to get going again.
"Fire in the tendons" - Closely related to seize ups, and often on a morning through my armpits my shoulders seize up and as I try and move them it sends shooting pains along my tendons. Legs as well as arms.
"Sneeze ups" - a sneeze causes a sever case of 'brain rattle' along with belly pain. Imagine going to the gym and spending all your time doing sit ups to the point where your stomach aches so much you can hardly move due tot he exercise you exerted it to. Now sneeze. I used to full blown HAAAAAAAAAAR-CHOOOOOOOoooooooo... sneezes. Now I do little "choo" sneezes like a little cat to reduce the pain.
"low bandwidth" - this is in the veins of my hands and feet. The circulation in these parts is pathetic and means I am constantly have cold hands and feet. I am alleviating this with home made hand and foot massages. Those wooden rolly things finally come in handy.
"bogeyman hands" - weird spots that appear on my hands. They start of painful, and soon turn into painless red spots that look extremely unsightly. I have written about them before. They dissapear after a few weeks when they grow out and I think 'phwew'. And then I wake up one morning with another set. I have mentioned them to the hospital, had various doctors take a look. "I've not seen this before, lets see how it is next week...case dismissed!" It is not documented as a new side effect.
I think that's about it. Lets not forget 'the fear' though. On Wednesday I got a call from the lymphoma specialist nurse. "Now there's nothing to worry about..." I immediately start worrying. "But we've been having a look at your recent blood tests and it appears that your creatinine levels are slowly rising." "Do you remember last Christmas when you were admitted to hospital with failing kidneys?" - Erm, YES. I felt like I was dying...and, erm, was. "We'd like you to come for a blood test to check that they haven't risen any more. But don't worry, it's probably nothing."
Unsurprisingly I did worry. I worried a lot. In the pit of my stomach I again felt that knot of fear that tends to be there whenever anything cancer related is spoken of. First thing the next morning I went for the blood test. My arms must have been appreciating this break as it was easy to get some blood out. In the afternoon I got a call. "Your levels are fine. The Creatinine has dropped again". Phwew says I.
So "yeah, not too bad, a bit better everyday actually..." is true but has an asterisk attached with the ailments listed above.
"Brain Rattle" - this feels like a dehydration headache, and most probably is as I am so thirsty all the time, but it occurs when I move my head at any speed other than quite slow. It feels as if my brain is loose inside my head and after the 'violent' movement the brain impacts on the inside of my skull and leaves me in pain for a while.
"Swollen Neck" - Ever since I got out of hospital, and some of the time I was in, the sides of my tongue hurt, along with the areas on my neck to the sides of my windpipe. It feels like I have a throat infection and feels uncomfortable when I swallow.
"Pins and Needles" - In my face. Particularly on a morning when I'm dehydrated my tongue, lips and nose feel all tingly and require various strange looking face exercises to get rid of. A big glass of water also helps.
"Seize Ups" - Especially when I'm tired on an evening and I've been an enjoying a TV show or film I attempt to get up and realise that I am actually stuck in the seated position. It takes an enormous amount of effort to get going again.
"Fire in the tendons" - Closely related to seize ups, and often on a morning through my armpits my shoulders seize up and as I try and move them it sends shooting pains along my tendons. Legs as well as arms.
"Sneeze ups" - a sneeze causes a sever case of 'brain rattle' along with belly pain. Imagine going to the gym and spending all your time doing sit ups to the point where your stomach aches so much you can hardly move due tot he exercise you exerted it to. Now sneeze. I used to full blown HAAAAAAAAAAR-CHOOOOOOOoooooooo... sneezes. Now I do little "choo" sneezes like a little cat to reduce the pain.
"low bandwidth" - this is in the veins of my hands and feet. The circulation in these parts is pathetic and means I am constantly have cold hands and feet. I am alleviating this with home made hand and foot massages. Those wooden rolly things finally come in handy.
"bogeyman hands" - weird spots that appear on my hands. They start of painful, and soon turn into painless red spots that look extremely unsightly. I have written about them before. They dissapear after a few weeks when they grow out and I think 'phwew'. And then I wake up one morning with another set. I have mentioned them to the hospital, had various doctors take a look. "I've not seen this before, lets see how it is next week...case dismissed!" It is not documented as a new side effect.
I think that's about it. Lets not forget 'the fear' though. On Wednesday I got a call from the lymphoma specialist nurse. "Now there's nothing to worry about..." I immediately start worrying. "But we've been having a look at your recent blood tests and it appears that your creatinine levels are slowly rising." "Do you remember last Christmas when you were admitted to hospital with failing kidneys?" - Erm, YES. I felt like I was dying...and, erm, was. "We'd like you to come for a blood test to check that they haven't risen any more. But don't worry, it's probably nothing."
Unsurprisingly I did worry. I worried a lot. In the pit of my stomach I again felt that knot of fear that tends to be there whenever anything cancer related is spoken of. First thing the next morning I went for the blood test. My arms must have been appreciating this break as it was easy to get some blood out. In the afternoon I got a call. "Your levels are fine. The Creatinine has dropped again". Phwew says I.
So "yeah, not too bad, a bit better everyday actually..." is true but has an asterisk attached with the ailments listed above.
Wednesday, July 04, 2007
the occasional clearout
I was scared of the Yoga but it turns out to be the best thing I could have done. Today I feel a lot more supple. I am most pleased.
So I got into one of those clearout modes. It's best that people stay out of my way when these set in because your efforts will not satisfy. Luckily I am alone with Rage Against the Machine.
I have discovered that in our one bedroom flat, where only three different individual people have ever slept (apart from my good self and Imelda) we have a stock of 10 pillows! Count them, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10! And to cover these pillows we have 14 pillow cases!
Why oh why do we horde things? Luckily there was a skip delivered at the shop across the road this morning; tonight, under the cover of darkness...
So I got into one of those clearout modes. It's best that people stay out of my way when these set in because your efforts will not satisfy. Luckily I am alone with Rage Against the Machine.
I have discovered that in our one bedroom flat, where only three different individual people have ever slept (apart from my good self and Imelda) we have a stock of 10 pillows! Count them, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10! And to cover these pillows we have 14 pillow cases!
Why oh why do we horde things? Luckily there was a skip delivered at the shop across the road this morning; tonight, under the cover of darkness...
Tuesday, July 03, 2007
times are a'changin'.
I realise I haven't been updating this blog much lately. I guess there's not all that much to say - I figure people would get bored with the same old "tired, but slowly improving".
Last week I was at the hospital again for a blood test and the doctors were pleased at my recovery rate. Almost normal now, apart from the platelet count. But normal counts is misleading. The truth is I'm tired a lot of the time. This isn't the kind of 'ooh i went to bed late last night' tired. This tiredness infiltrates the core of you, sleeping for 12 hours has little effect on it. Then another day I'll get up and feel great. There doesn't seem to be a pattern to it. But I guess it's a good thing as it reminds me to take it easy. I'm always trying to get ahead of myself.
This morning I'm going to do a Yoga class. That should be gentle exercise enough and allow me to stretch my tendons a bit, which are so tight. I'll report back, but I'm expecting some pain...but good pain.
This morning I received a comment from a guy named Duane from New York who is also suffering with relapsed Hodgkin's. I started reading his blog and he has some interesting things to say. Journal of a Prize Fighter. Duane, I wish you all the best and thank you for the comments you've made and for following my blog.
I also want to take this opportunity to thank everyone who has been so supportive. By sending cards, emails, phoning me, etc. I don't think I'll ever be able to express how much this has meant to me.
In other news Imelda and I will be moving from our flat into a house, with garden in the near future! My mum and dad are buying it and letting us live in it for a low rent. I'm really looking forward to having a garden, extra bedroom, and, wait for it...workshop! That's right, a dedicated place that is only mine for all my tools and bikes. "where's Tom?", "He's in his tool-shed again!"
Before my mum and dad offered to do this we had decided to move anyway. While our flat has lots of happy memories, and I wouldn't even describe the past 2+ years as unhappy despite the difficulties we faced, moving will be a new start. A new chapter of my life will begin.
The fear? The fear is what I expect every cancer patient has. That "will I relapse?" thought. Right now I'm doing well with it. In the past I have gone into spirals of depression. Maybe this time it's because I was so ill from the chemo that I wonder how anything could survive that. Who knows how 'the fear' will develop over time.
Last week I was at the hospital again for a blood test and the doctors were pleased at my recovery rate. Almost normal now, apart from the platelet count. But normal counts is misleading. The truth is I'm tired a lot of the time. This isn't the kind of 'ooh i went to bed late last night' tired. This tiredness infiltrates the core of you, sleeping for 12 hours has little effect on it. Then another day I'll get up and feel great. There doesn't seem to be a pattern to it. But I guess it's a good thing as it reminds me to take it easy. I'm always trying to get ahead of myself.
This morning I'm going to do a Yoga class. That should be gentle exercise enough and allow me to stretch my tendons a bit, which are so tight. I'll report back, but I'm expecting some pain...but good pain.
This morning I received a comment from a guy named Duane from New York who is also suffering with relapsed Hodgkin's. I started reading his blog and he has some interesting things to say. Journal of a Prize Fighter. Duane, I wish you all the best and thank you for the comments you've made and for following my blog.
I also want to take this opportunity to thank everyone who has been so supportive. By sending cards, emails, phoning me, etc. I don't think I'll ever be able to express how much this has meant to me.
In other news Imelda and I will be moving from our flat into a house, with garden in the near future! My mum and dad are buying it and letting us live in it for a low rent. I'm really looking forward to having a garden, extra bedroom, and, wait for it...workshop! That's right, a dedicated place that is only mine for all my tools and bikes. "where's Tom?", "He's in his tool-shed again!"
Before my mum and dad offered to do this we had decided to move anyway. While our flat has lots of happy memories, and I wouldn't even describe the past 2+ years as unhappy despite the difficulties we faced, moving will be a new start. A new chapter of my life will begin.
The fear? The fear is what I expect every cancer patient has. That "will I relapse?" thought. Right now I'm doing well with it. In the past I have gone into spirals of depression. Maybe this time it's because I was so ill from the chemo that I wonder how anything could survive that. Who knows how 'the fear' will develop over time.
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