Sorry i have not been updating everyone, but i needed some Reza time.
not much medical news, my pain is now under control which is amazing. it makes such a difference. still no feelings from chest down. otherwise it's waiting time.
my head is very clear, although the hospital environment is generally realistically negative. everyone wants me to be realistic! they keep saying it to me! you are realistic aren't you? yes i am thank you very much. i find it that if i speak with an air of confidence about my chances of recovery, they think i'm in coocoo land. we'll know in 4 weeks time, that will put everyone's mind at rest. as far as i'm concerned, i will beat it and that's that. no other way to think, right?
let me describe you my room.
my room is 5 meters by 6 meters. window to my left, door to my right, my bed in the middle of the room, bathroom in front of the bed, i haven't been in there yet! to my right, small fridge with a small worktop surface area which has become the kitchen. window looks at the side of the hospital building, not very inspiring at all.
the days just rolled into a week, it was a good week, much better than last weekend.
my days have been much better, a very different routine than last weekend.
i sort of wake up around 6 to 7.30 with a very dry mouth (side effects of morphine) and slightly in pain, normally the pain wakes me up. it's not too bad, it's just the way i'm lying in bed. so i move about a little bit. i have what is called a monkey hoop above my bed, i grab it and pull my upper body from left to right. i'm getting better at it everyday.
i try to go back to sleep if i can, but it's very difficult to get comfortable. i have to eat something before i can take my tablets, but it's so much effort. it takes me an hour, sometimes till about 9 to get my strength and wake up. if i'm lucky Jojo walks in with some delicious sprouted and steamed millet i can have with rice milk, if not i ask the nurse to pass me a piece of sprouted bread or i have a bowl of sprouted buckwheat with rice milk. it's double hard being so disabled and being 100% faithful to my diet. but i believe in it.
depending on the nurse looking after me (it's an effort juicing the wheatgrass and i can't just ask any of them to do it) or if Jojo comes in early, i have a shot of wheatgrass which gives me immediate energy and i feel awake.
around 10.30 i have a bed wash, 2 nurses come in to do this, they need to turn me etc. the last couple of days i managed to wash my own upper body, i'm getting stronger everyday. i have my own organic soap and organic lavender cream and the nurses enjoy it, it smells delicious. they all ask about the diet, organic stuff and agree with what i'm doing.
sometimes, after the bath i feel shattered, i go to sleep for a little bit, otherwise they lift me up with hoist (an odd looking machine and it looks like they lift me up in a plastic bag!) and i sit in a very odd looking but well supported wheelchair. it's nice to be sitting upright, but very tiring as my muscles are weak/ not working to support myself.
Moh comes in at 11, makes my wheatgrass juice if i haven't had it and then my green juice. i read the paper as he makes my salad for lunch. i have my lunch as he reads the paper. he's got the food preparation down to perfection. it's a routine.
he leaves, either i have a little nap or get into my wheelchair for an hour. it's more of an exercise activity. the whole operation, getting me ready for the wheelchair, lift me up, put me in it, sit there, then get back to bed takes a couple of hours. it's such hard work. most of the time i poo myself as they move me, so they have to clean me etc... i used to get embarassed, but now it's a normal affair. i have absolutely no control, i'm just like a baby, i go. if i can i small something, i call the nurses, they come and clean me. that's another 30 minute job, sometimes in the middle of the night too!
Sometimes Dave (my step brother) comes around 5 and makes my juices for me. he is very good at it. Moh comes around 6/7 for my evening juice (if Dave hasn't come) and makes my dinner too. i'm a lot more lively in the evenings, we chat. my dad has been here this week, he comes in the evenings with Moh. it's been nice seeing him, he can't do much as he doesn't understand any of my diet. times goes by fairly quick, everyone leaves by 9. i do my research on spinal cord recovery, raw food suppliers, look for nice snacks etc.
around 11, i get ready for bed, nurses come in and turn me to my left or right and put cushions around me so i don't roll back. as i lie on my back most of the day, i sleep on my sides at night so i don't get pressure sores (the skin breaks if you put. my bed has air mattress, a pump pushes pressures around the mattress to help relieve pressure from one area. takes getting used to, also noisy at night.
i switch off around midnight, meditate and try to go to sleep. the mind games start, hopefully fall asleep around 1, around 4, they come to turn me and check if i'm clean! sometimes it's really difficult to go back to deep sleep after they roll me, and just dose on and off till i wake up.
all the nurses have been amazing this week, very caring and gentle. not much interaction with doctors, my pain in under control, i'm getting stronger by the day.
Jojo is getting into the RAW food cooking/preparation. she is making me nut ice cream, such an amazing treat. she is going to prepare different dishes at home and bring them in. i'm very lucky.
everyone says how inspiring i am and all the kind words and comments that i keep reading on the blog. when i look at the people around me, from my brother who is on call 24/7 to Jojo, Dave, my family, all my close friends and friends, to you beautiful people that are reading my blog, lifting my spirit with your words, positivity, encouragements, jokes and sharing your experiences, no wonder i feel as good as i do. i feel very lucky to be so loved, supported and appreciated by everyone. when i read some of the comments on the blog and emails that friends have sent, i have tears in my eyes, tears of such joy and happiness that everyone has so much enjoyed my existence, and they remember the little details about me, my personality and how i've changed their lives. i have tears in my eyes as i write this, it makes me so emotional in a nice way.
i'm going to beat this, no question about it. i'm giving it all i've got in a true Reza way.
this wednesday they will assess to see if i can go to a rehabilitation centre in London called The Wellington. This would be amazing as they specialize in people with the extend of my disability. the issue is i'm i well enough from the effects of the cancer to go out of hospital. i'm not holding hope for a transfer for at least another 3 weeks. will let you know.
a big thank you to my cousin Nadereh who's been shipping supplements, food and equipments constantly from America. thank you so much.
i'm looking forward to this week, i feel it's going to be a good week.
love and positive energy
to life force
reza
Saturday, 10 May 2008
Monday, 5 May 2008
Time is a Healer
i loved the jokes, and a good few of them hurt, specially the monkey!
it's been a hell of a weekend packed with everything; pain, despair, confusion, questions, back tracking, mind games, uncertainty, if this, if that, emotions, back to positivity, laughter, feeling supported, inspired, hope, and back again... you name it, i've felt it.
i got up Friday feeling weak and in pain. i saw the pain doctors and we decided to change my pain killer. i'm on OxyContin and Steroids, they're heavy on the stomach, make you constipated etc. i hate the thought of taking pills on an empty stomach too. they've offered me patches which is much easier to use, but it takes a few days to work out the right dose and make the move. it's been a painful swap. i felt as if i have tumor all over my body, every bit of my chest that is not paralised hurts. not only i can't move my lower body cause i can't feel it, my upper body is in so much pain, i don't want to move! on top of this, the side effects of chemo is kicking in and that is a whole different story itself.
it starts with a little of cry, feeling of despair, what have i done to deserve this? no one deserves this? this is too much, i feel drowsy and fall asleep, strange dreams, stuck between 2 worlds, questioning everything, the cancer, my diet, the chemo, will it work, should i be doing it, what choice do i have, what if it doesn't, my will to go on and so on! i'm frowning, teeth grinding, i wake up, mouth totally dry, feeling rough, have some water, bang, i feel alive again. brain kicks in, come on Reza, get yourself together... full circle and this just goes on for a few hours. nurses come in to check on me, but i just don't want to speak to anyone. Moh arrives and he comforts me. makes my wheatgrass juice and that picks me up, and i jump out of it. the rest of the day is up and down.
i spend a few hours reading through my blog, so inspiring, i love it. a few emails and texts come through on my phone, so encouraging and up lifting. i pick myself up and feel positive. i don't know what it is, but we get so easily caught up into a cyclone of negativity, it's so easy to give up, anyone can question, blame, find a way out. we can spend hours talking about why, discussing reasons, if i had done this, if i had done that, sooner, later, more, less... so easy to do as there is no answer. hindsight is a great thing and i wish we could live life using it, i wish! i am where i am, deal with it.
then i dream about food, chocolate, stake, chicken, pizza you name it, i'm craving it. puddings i didn't even like, i'm suddenly craving everything. if i'm taking chemo, why do i need the living food. maybe i have a little bit of desert, feel good factor. i start giving myself reasons why it would be ok. but then i realise i'm fighting for my life. no second prizes in this race.
the day turns into night... Moh goes through the routine, sorts out my room, makes sure i have everything i need, i brush my teeth and he leaves. the night journey begins... i try meditating, helps me sleep, but with my mind wondering off so often it's impossible. hours of going round emotional turnabouts!
i didn't sleep at all, up all night questioning everything, could not stop! this morning Jojo comes in, not sure what time it was but i was in my horror state of mind, tired and fed-up and i just burst into tears, like the mornings before. WHY ME? WHAT HAVE I DONE TO DESERVE THIS? Jojo comforts me, makes my wheatgrass juice and i come back to life again. Moh comes soon after. i ask for more pain killers, i feel better. my dad is coming to see me this afternoon. i haven't seen him for 6 months. last time i was on chemo too but not paralised. it's a tough news for any dad.
it was really nice to see him. they left an hour ago and now i'm posting.
i feel much better now. back to normal Reza. hopefully the roller coaster ride is over.
fingers crossed my dear friend good guy/bad guy Chemo has now left my body and i can get on dealing with Mr Cancer. Meanwhile i need to focus on my back, get my upper body stronger so i can get into a wheelchair easier, be more mobile, spend less time in bed like a vegetable, and start my new life campaign.
i have another Chemo in 18 days, and my scan in 32 days approx.
not that i'm counting, but time is the key factor and the healer in every way.
i'm getting used to my condition, i know it will be getting easier as time goes by.
Love and Positive Energy
Life Force
Reza
Just wanted to add that the nurses have been incredible this weekend.
Whatever there is to be said, when they are good, they have a heart of gold, Balgi, Sara, Jane, all of them.
Thank you so much.
it's been a hell of a weekend packed with everything; pain, despair, confusion, questions, back tracking, mind games, uncertainty, if this, if that, emotions, back to positivity, laughter, feeling supported, inspired, hope, and back again... you name it, i've felt it.
i got up Friday feeling weak and in pain. i saw the pain doctors and we decided to change my pain killer. i'm on OxyContin and Steroids, they're heavy on the stomach, make you constipated etc. i hate the thought of taking pills on an empty stomach too. they've offered me patches which is much easier to use, but it takes a few days to work out the right dose and make the move. it's been a painful swap. i felt as if i have tumor all over my body, every bit of my chest that is not paralised hurts. not only i can't move my lower body cause i can't feel it, my upper body is in so much pain, i don't want to move! on top of this, the side effects of chemo is kicking in and that is a whole different story itself.
it starts with a little of cry, feeling of despair, what have i done to deserve this? no one deserves this? this is too much, i feel drowsy and fall asleep, strange dreams, stuck between 2 worlds, questioning everything, the cancer, my diet, the chemo, will it work, should i be doing it, what choice do i have, what if it doesn't, my will to go on and so on! i'm frowning, teeth grinding, i wake up, mouth totally dry, feeling rough, have some water, bang, i feel alive again. brain kicks in, come on Reza, get yourself together... full circle and this just goes on for a few hours. nurses come in to check on me, but i just don't want to speak to anyone. Moh arrives and he comforts me. makes my wheatgrass juice and that picks me up, and i jump out of it. the rest of the day is up and down.
i spend a few hours reading through my blog, so inspiring, i love it. a few emails and texts come through on my phone, so encouraging and up lifting. i pick myself up and feel positive. i don't know what it is, but we get so easily caught up into a cyclone of negativity, it's so easy to give up, anyone can question, blame, find a way out. we can spend hours talking about why, discussing reasons, if i had done this, if i had done that, sooner, later, more, less... so easy to do as there is no answer. hindsight is a great thing and i wish we could live life using it, i wish! i am where i am, deal with it.
then i dream about food, chocolate, stake, chicken, pizza you name it, i'm craving it. puddings i didn't even like, i'm suddenly craving everything. if i'm taking chemo, why do i need the living food. maybe i have a little bit of desert, feel good factor. i start giving myself reasons why it would be ok. but then i realise i'm fighting for my life. no second prizes in this race.
the day turns into night... Moh goes through the routine, sorts out my room, makes sure i have everything i need, i brush my teeth and he leaves. the night journey begins... i try meditating, helps me sleep, but with my mind wondering off so often it's impossible. hours of going round emotional turnabouts!
i didn't sleep at all, up all night questioning everything, could not stop! this morning Jojo comes in, not sure what time it was but i was in my horror state of mind, tired and fed-up and i just burst into tears, like the mornings before. WHY ME? WHAT HAVE I DONE TO DESERVE THIS? Jojo comforts me, makes my wheatgrass juice and i come back to life again. Moh comes soon after. i ask for more pain killers, i feel better. my dad is coming to see me this afternoon. i haven't seen him for 6 months. last time i was on chemo too but not paralised. it's a tough news for any dad.
it was really nice to see him. they left an hour ago and now i'm posting.
i feel much better now. back to normal Reza. hopefully the roller coaster ride is over.
fingers crossed my dear friend good guy/bad guy Chemo has now left my body and i can get on dealing with Mr Cancer. Meanwhile i need to focus on my back, get my upper body stronger so i can get into a wheelchair easier, be more mobile, spend less time in bed like a vegetable, and start my new life campaign.
i have another Chemo in 18 days, and my scan in 32 days approx.
not that i'm counting, but time is the key factor and the healer in every way.
i'm getting used to my condition, i know it will be getting easier as time goes by.
Love and Positive Energy
Life Force
Reza
Just wanted to add that the nurses have been incredible this weekend.
Whatever there is to be said, when they are good, they have a heart of gold, Balgi, Sara, Jane, all of them.
Thank you so much.
Thursday, 1 May 2008
Joke Day
another eventful day, but only a couple of doctor visits, but no more bad news. i'm having radiotherapy tomorrow to ease the pain on my left shoulder, that will give me a bit more mobility and quality of life straight away. radiotherapy is the least toxic and dangerous treatment of all for cancer and more money should be spent towards this area. i'm happy to go ahead with this treatment. There is a long story about my radiotherapy doctor. he is one in a million!!!! can't wait to tell you in my new post.
Gary, i've been imagining the movie and laughing about it all day. i bet it must have jumped to your head as you were reading. give me a few years, i'll walk again and we will make a movie. you can cast Jojo and Moh. Actually ZA, you will have to cast Moh. i tell you what he is slowly edging towards this diet having a few sips of green juice, i don't think apple pies will ever go off menu, nor the pint and a late curry. but all the exercise he is doing running around the golf course looking for his balls, he'll burn that off easy!
Moh gave me a hair cut in bed, followed by my nurse giving me a bed bath, i feel so good. brand new. a new physiotherapist came to see me today, she was good, we did some stretching, help me sit on the bed etc, just sitting upright on the bed was enough to make my day brighter. how the smallest of things make me so happy right now. i felt very tired afterwards, slept for a bit.
i'm taking every hour as it comes now, some moments of sadness, back tracking, looking back and wondering, but then i jump out of it. there is no point of thinking like that. what was so good about Hippocrates was the notion of NOW and then HOPE for the future. we must behave like mountain river (not sure what the right name is), fresh water keep flowing, the minute we stop, we become stagnated, we'll end up smelling, like i did before i had my bed bath : ). in a way being in hospital does that, specially when you're being told bad news after bad news, not only physically you're hit, mentally you're being tortured. i'm not saying for a second it's done with bad intentions, but it's how it makes me feel.
So i'm focusing on NOW, and i'm getting more positive by the minute. You are all part of this healing, your comments are helping me every step of the way. As i said, it's difficult to reply to everyone as there is so much to say in reply, a delicious RAW food dinner evening perhaps. I really want to go on your blogs and others, learn from your experiences, i just don't seem to find the time.
i seem to have so much to do, the list doesn't stop.
i will make an extra effort this weekend.
i'm not having any visitors either as i don't have the energy. this is my time. my blog is my healing and communication gateway right now. it's sit alongside my meditation.
i was thinking about a joke today. i fancy hearing a good joke. tomorrow is Friday, let's have a joke blog day, something we can share at the weekend. i wana tell the doctors or whoever comes in here. come on, let's see who's got the best jokes. i know Ardy has a lot of jokes, but some really bad ones! Arash, this is your time boy. disabled jokes are also welcomed. it can't be said i'm discriminating, can it?
love you all, and so grateful for your support.
to life force
reza
i totally forget, i was having chemo today, it finished around 8 tonight. i don't feel any different, no sickness. for sure we must be friends. come on buddy, let's kill some cancer cells. life force is all around you, helping you and watching you. in and out, it's a deal. we do the job together, you get out and life force and i will clear up. don't leave anything behind. we'll see you in 21 days. safe journey and thank you.
Gary, i've been imagining the movie and laughing about it all day. i bet it must have jumped to your head as you were reading. give me a few years, i'll walk again and we will make a movie. you can cast Jojo and Moh. Actually ZA, you will have to cast Moh. i tell you what he is slowly edging towards this diet having a few sips of green juice, i don't think apple pies will ever go off menu, nor the pint and a late curry. but all the exercise he is doing running around the golf course looking for his balls, he'll burn that off easy!
Moh gave me a hair cut in bed, followed by my nurse giving me a bed bath, i feel so good. brand new. a new physiotherapist came to see me today, she was good, we did some stretching, help me sit on the bed etc, just sitting upright on the bed was enough to make my day brighter. how the smallest of things make me so happy right now. i felt very tired afterwards, slept for a bit.
i'm taking every hour as it comes now, some moments of sadness, back tracking, looking back and wondering, but then i jump out of it. there is no point of thinking like that. what was so good about Hippocrates was the notion of NOW and then HOPE for the future. we must behave like mountain river (not sure what the right name is), fresh water keep flowing, the minute we stop, we become stagnated, we'll end up smelling, like i did before i had my bed bath : ). in a way being in hospital does that, specially when you're being told bad news after bad news, not only physically you're hit, mentally you're being tortured. i'm not saying for a second it's done with bad intentions, but it's how it makes me feel.
So i'm focusing on NOW, and i'm getting more positive by the minute. You are all part of this healing, your comments are helping me every step of the way. As i said, it's difficult to reply to everyone as there is so much to say in reply, a delicious RAW food dinner evening perhaps. I really want to go on your blogs and others, learn from your experiences, i just don't seem to find the time.
i seem to have so much to do, the list doesn't stop.
i will make an extra effort this weekend.
i'm not having any visitors either as i don't have the energy. this is my time. my blog is my healing and communication gateway right now. it's sit alongside my meditation.
i was thinking about a joke today. i fancy hearing a good joke. tomorrow is Friday, let's have a joke blog day, something we can share at the weekend. i wana tell the doctors or whoever comes in here. come on, let's see who's got the best jokes. i know Ardy has a lot of jokes, but some really bad ones! Arash, this is your time boy. disabled jokes are also welcomed. it can't be said i'm discriminating, can it?
love you all, and so grateful for your support.
to life force
reza
i totally forget, i was having chemo today, it finished around 8 tonight. i don't feel any different, no sickness. for sure we must be friends. come on buddy, let's kill some cancer cells. life force is all around you, helping you and watching you. in and out, it's a deal. we do the job together, you get out and life force and i will clear up. don't leave anything behind. we'll see you in 21 days. safe journey and thank you.
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