- Sleep glorious sleep, it feels so good to sleep for 5 hours! Even though it's not a lot, my body needs it so badly. I'm not sure why this 3 am thing has started and gosh I hope tonight after time change it doesn't become 2.....lol
I am tired, I think the radiation's starting to tire me, I lay there and my head spins with thoughts details, fears, organization plans, and trying to just get to the next heart beat......This poor old body is one giant boo boo and needing a kiss....My body is so abused and confused and I don't even know what's right or wrong anymore. Everyday it is changing and I try so hard to stay with the changes and figure them out and what is normal (what ever the hell that is anymore) what do I report? and trying to trust myself again after being so completely abused by my doctors. I am afraid of every heart twinge, pain, spasm etc. Did I take my pill??? Oh pills, glorious pills those pretty little things, strange colours and shapes with long technical names written on them. those little tablets that I hate. I am not a pill taker never have been I am not good at this thing and yet I am trying. I am figuring out how much I need control in my life and how hard it is to give up.. There is a certain amount that I do not need well most likely all of it. Being put on a time schedule to take a pill, eat food, drink this, do that makes me slightly rebellious,(not hard to see that). It seems everyday I am gaining another bottle or two with instructions up the wazoo, when to take and what to take. So I have started writing a pill log to try and remember when I have or what I have and how much I have taken, when start getting so many pills I feel like I need to know what has gone in my body, so other people know also we wouldn't want to over medicate.. If my pressure is taken I write it down and keep a log. I am on some morphine and several others but am concerned when you start mixing all these pills and remembering when and how much so, now my control is, did you write that in my pill book? did you give me 1/2 dose full dose etc...They have given two different med's for my esophagus and I think they are helping not so much pain, and I have some neat "sun tan" marks on my chest and back, but absolutely nothing to complain about again you just need to be aware..
So I did it 5 full treatments of radiation" DING DING DING" "hand the little lady a prize" and the heart is still beating. I still most of the time have a smile on my face when my "TWANDA" face has softened some what....I'm keeping that baby close by...
Yesterday met with the social worker again to fill out the disability papers, that's pretty hard and if that is not giving up control boy what is...The team at Oshawa Lake ridge hospital is amazing a well oiled machine trying to save lives and hand out compassion and miracles when needed., and yet somehow staying slightly disconnect how could you not, you see these people everyday working on you trying to give you more days, weeks, years, how can yo not come to love and trust them and even sometimes hold onto them that few extra seconds when they are helping you up off the radiation table just to feel that human contact in that cold mechanical room..
So, on the lighter side of life not sure how this will translate, it might have been a case of you having to be there but I am still laughing my ass off even though mostly at my poor husbands expense. ( by the way him and mom really need prayers still ) although I did make my mom almost pee herself on the way home from treatment....I did want to mention one horrible side affect I am having from all these treatments....I have developed Tourette syndrome.. yes that dreaded syndrome where there are random ticks and verbal expressions that cannot be controled..... and boy do I have a case of it... You know I can cuss just as well as the next person and typically I as a Christian and business person feel like it's not a great witness to talk blue rings of smoke around people...but I do like a good FUDGE and COKE (thanks Sam Sandra McGowan) and shut the front door..... but occasionally there is nothing like the big grand daddy of them all. And that's where it began in the car yesterday... again stressed.... the week..the doctors, finished 5 treatments,, heart still beating blah blah blah. Let me paint the scene...No one can drive, and I'm exhausted so I phone my son in Toronto to come drive me from Oshawa to Frankford with my mom and Step mom cradled in the back of the car still completely shell shocked and broken down from the last two days events and realizations. I drove my self from Peterborough to Oshawa not that I cant just the tiredness and having a few dizziness issues with the heart isn't the smartest , anyway driving on the 401 with my son( who just informed me) who no longer has his license, cause he lives in Toronto so no need... but at that point I didn't give a fly'n fig newton just get me the hell home. So we are out of rush hour driving some what peacefully along the highway quiet thoughtful you get he picture when you.... know what I going say this dumb ass driver comes a longs and just cuts us off slows down and just completely oblivious of what he just did....Well, I (have you ever hear of the champ on the radio station? utube him you 'll know what Im talking about, I did my version) I snapped ....At that moment I discovered my new side effects from radiation Tourette syndrome... and boy, oh boy did the words fly.. I think some times I was speaking tongues cause I wasn't sure what the heck I was saying but the verbal abuse was profuse and very well posed and eloquent at least I thought so. If you had seen me in the jeep it would have looked like I was practicing sign language and leading a full on concert symphony all at the same time.....Everyone was silent and I'm sure my verbal string is still flowing over the vehicle in some black and grey cloud with some pretty colours following...Then it began small looks, side glances, a little chuckle wait, wait for it, that's it, the whole vehicle was exploded into laughter that stupid, no sense laugh, that gut freeing, belly roaring, snorting laughter and we couldn't stop it and really it had been so long I didn't want it to, crazy stress relief laugh you know the one when you snort and every-time laugh even harder ( Joanne van Geissen) and tears are running down your face... that kind that is more healing that 20 pills except for the little white one i gave my mom yesterday....lol I think there was more healing medicine in that laughter than all the doses and pills my body is being slammed with...oh GOD it felt so freaking good ( I do have some amount of control yet...lol) so we slow down the laughter to little rumbles knowing it could spring up again at any moment. So, in the mist of the car roaring with laughter I received a phone call from a well meaning person from my past.. Anyway I pick up the phone ( you guys might think this is cruel, it wasn't meant to be remember crazy silly laughter and a week of stress from hell and back....) but people have heard I'm terminal and then when they call they say.... so how are you ? in a concerned voice that you haven't heard in years and makes you think what do I still owe you 5 bucks and you wanna collect or something???Anyway so this soft voice on the line says to me" I heard Hope how are you doing" and the only thing I could think of in that giggle infested vehicle is "I'm dying how you doing?" Well, then a another round of laughter and the poor lady was taken back. I did apologize and explained what was happening at the minute but I think most people are thinking that I'm laying in bed curled up in the fetal position waiting to meet my maker... Don't think so....I have a lot of laughter in me and I'm going let it roll... so with this in mind I text ed my poor concerned husband who I banished home for two days to gain whats left of his sanity which after him hearing the fiasco of the driving is really not making him feel much better, but in that moment I thought I should text Brad and let him know about my new side effect.. I was dying with laughter, killing my self with this text waiting for his response I have (TEXT) Honey I'm having a new side effect from radiation and it's really bad...(waiting) I have already typed in the phone (text) Tourette syndrome.. I am sitting laughing with everyone in the car waiting for his reply imaging all of the humour he was going to think and how witty I was... waiting, waiting, finger on button but nothing, nothing, I figured he had dropped dead on the floor thinking I was serious or something so what would any good wife do who that she was so freaking funny i pressed (sent) message delivered....nothing absolutely nothing... well, when I got home 15 minutes after my last text, I met my white faced Santa husband of mine at the door and you know what he thought it was a real side affect and was pale from worry, you know what i did , I had a small pang of guilt and then you guessed laughed my freaking ass off again.... If you know me I can be bad. One more thing before I shove off..
..... I received another call yesterday from a man from my past and said "oh Hope I don't know what to say" and I just said perfect that's all you need to say... really people say nothing else...Depending on my mood, emotion, my pain, or anything else I'm going through the same response might be handled in different ways... So please, be thick skin with me right now. Please no more stories of how my friend had it worse than you and they are doing great, and if you drink this, and eat that, and smell this and think that,,,,,,AAAAAAAHHHHHHH NO more asinine advice please, I know people want to help and if it is truly well meaning I appreciate it. I am taking advice from people I know who are or have been going through this Teresa Bell, Gerry Katherine Terry people that knows what i am going through and I have appreciated every whisper from their sweet loving lips...It's just all this info and do it this way, go to this guy, and blah blah blah puts a little pressure on me like if I don't do it this way or that way it will be my own fault if i don't survive..and i know you guys don't want me to feel any more pressure so I can see where it's coming from a place of love and concern and wanting to help but please allow me to get through this journey on the path that is right for me and when the time comes and I need advice I will gladly ask... My loving caring friends,,, Please continue to pray for my heart not just medically speaking but in all the ways one would think of a heart, breaking loving, losing hoping and wanting to be full... Love you all have a blessed day and if you see a gray jeep Cherokee flying down the road with some crazed look lady conducting a symphony wave smile but stay the hell out of my lane......lol Lynne Loweposted toHope Stone
You are very SPECIAL, Hope!!
Monday, 4 November 2013
Nov 2
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