I had a kinda mini argument with Mum today, its odd, but kinda shows me how differnt our views our and perhaps why we irk each other often.
I cant recal how we got onto the subject, but we were talking about the end of the year. I said its been a good year, to which she looked at me and, oh thanks! I said what? She said, I got Cancer this year. To which I replied, you survived cancer this year. To which she said, you dont know that yet, not till I get my next scan. To which I replied, well you look pretty alive to me and unless you drop dead within the next 24 hours, then you survived cancer this year.
I then continued with, there has been no unexpected or untimely deaths, I have been to theater 14 times with no real issues and gernally things are going ok. To which she kinda grunted and said, you hardly had life threatening surgery. To which I replied, and its hardly minor surgery. For a while, I have no viable airway, my airway is open to the world and there are a lot of risks to it. To which she kinda made one of those whatever faces and walked away.
It just makes me think, how differnt our thinking is these days. I do wonder where I get my thinking from if the person I spend most time with is so differnt. Or does it then become a case of, well I dont want to turn out like that so I will try hard to be the opposite.
It also make me think about how I put things to my mum. I do downplay things such as surgery, always sugar coat and higlight benefits whilst skipping risks. Is it wise. Im not sure. On one account, its almost as if she belittles some of my issues as pettite almost, perhaps that is my fault. But if she knew more, if things were said straight, what would happen then? I think she would stress more, get more depressed and so on.
But then, my head goes back to the summer, when I thought she was begining to understand. A few times, it seemed like whilst she was ill, she sort of knew some of the issues I struggle with, and when I mentioned that I was still holding on to hope that I wouldnt be ill forever and therefore wouldnt need to live close by forever for her to look after me, she teared up, as if thinking dream on.
Its not that I want sympathy or pity or even think my life is tough, its just that I never seem to know where I stand with her or how she views me. One day, she is telling me what I cant do and that I need to look after myself more, the next day, that I am not doing enough and should be doing other things at my age.
I know I have always had difficulty with my sense of self, I have no idea who I am, which is what has lead to some of my issues in the mental health setting. I cant help but think, that perhaps mum has the same issue, maybe thats why I feel the way I do.
I dont know, I guess I am rambeling. And whilst I do think I am a lot differnt from my mum, I also see a lot of the parts I hate most about myself in her. Espcially the competitvness, even in things that shouldnt be a competition. I know she spends a lot of time compering her ills with my ills and on a discussion with Dad last month in regards in to travel insurance, she near took his head off for suggesting that I am sicker than her. I am just not sure, at this point, how I can persuade her to look at herself as not being sick. She has had the surgery, she has done chemo and radio and the only thing now is a anti cancer drug once every 3 weeks. She should be improving, moving on and getting her life back. They would expect by now, for the average person to be back at work, back at life and moving out of the ill catergory. Yet she seems to be clinging to it. She has a tablet she has to take once a week. You take it and for the hour afterwards, you cant lie down and you cant eat or drink. To my mind, it wouldnt be a problem, you would take it, then go shower and dress and such and by that point, carry on with normal routine. But to her, its this huge deal. She tells everyone how hard it is and how much it gets in the way. Really, if your going to complain at something like that, then its nothing.
I'm just bitching and rambeling at this point with no real purpose. I just wish I could wave a magic wand and somehow know here I stand and who I am. Just finding things hard with her at the moment I guess. I frequently seem to find my Dad and I rolling ours eyes behind her back. But i guess she is just as hard on him and that hurts too.
At this point, I want to run away. I want to be well enough, to go escape, to run far far away start fresh and build my own life and my own self and know exactly where I stand in the world.
One day.
Next year.
This year, I am going to get well.
Next year, Im going to rebuild my life.
Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts
Saturday, December 31, 2011
Friday, October 28, 2011
cest le vie
Rachy passed away today. She was a fighter & and inspiration thats for sure. Breathe ease Rach. My thoughts are with her friends and family tonight. x (http://lungs-for-life.blogspot.com/)
I have discovered a way to get my hypertonic saline running easier without it leaving me in agony.
Usually, as my throat is being scraped every 4-6 weeks, it gets raw. I cough a lot, which irritates it more. So running hypertonic becomes a little painful. (think chapped/split lips and eat salt and vinegar crisp)
So anyway, tonight, I have had my humidifier on most of the evening and just left it on whilst running my nebs. oh it was heaven. As my throat is warm and moist, the salt isnt sticking, so im hoping its going into my lungs better. Weird feeling though, as I am blowing out through my mouth piece, the steam coming out was warm and so the plastic piece in my mouth was going warm.
The reason I am on my humidifier is my own fault. Last night, my body refused to shut down for sleep, so when my alarm went off at 7:30, the first thing that came to mind is, who hit me over the head with a hammer, closely followed with, who has been feeding my drugs as my vision was very wavy. After reassuring myself that no, I didnt go out last night, this cant be a hangover, my mind clicked, that it was in fact a migraine. I hate migraines. I have had them since I was about 5, though they started as stomach migraine. Managed to take some meds for it, but of course they take nearly an hour to kick in and this morning was not one I could delay or disrupt, today was about supporting mum.I managed the basic tasks like dressing, but the thought of nebbing when my head felt like it was splitting, was not a thought I could bare. It just wasnt an option.
So radiotherapy clinic went ok, though it is the first one so will take a while to hit in. But the staff seem nice enough so yeh.
By afternoon my head was still pounding, so I decided to nap it off. After about an hour, I remember half waking, but not being able to wake anymore. Thinking, something is not right, I cant breathe. After a scary few minutes, trying to wake up enough to get help, I managed to move to my other side, with aims of getting up, but quickly falling back into the abyss.
When Dad woke me later, I was breathing better than earlier, but still not great. I checked my peak flows and it was 110. I was like WTF!! Its been a long time since that low, were talking pre trach days, so god knows what it would have been when it woke me.
I have loads of treatments tonight and its back to 220, but just incase, I have made sure my emergency bells are still reachable.
Its just an odd feeling. Im not being all woe about this, I know its my own fault and I can take it in my stride, its just a little scare, to keep me on my toes. But it is annoying, today, isnt about me. My parents dont need any of this, I need to be supporting my mum. I cant afford to get sick right now. And the thought of not seeing a doc for 3 months, makes me a little nervous.
But alas. Tomorrow is a new day, and we begin again. Tomorrow I will wake refreshed from a nice sleep. I have just changed my bed and I am looking froward to snuggling down.
I have discovered a way to get my hypertonic saline running easier without it leaving me in agony.
Usually, as my throat is being scraped every 4-6 weeks, it gets raw. I cough a lot, which irritates it more. So running hypertonic becomes a little painful. (think chapped/split lips and eat salt and vinegar crisp)
So anyway, tonight, I have had my humidifier on most of the evening and just left it on whilst running my nebs. oh it was heaven. As my throat is warm and moist, the salt isnt sticking, so im hoping its going into my lungs better. Weird feeling though, as I am blowing out through my mouth piece, the steam coming out was warm and so the plastic piece in my mouth was going warm.
The reason I am on my humidifier is my own fault. Last night, my body refused to shut down for sleep, so when my alarm went off at 7:30, the first thing that came to mind is, who hit me over the head with a hammer, closely followed with, who has been feeding my drugs as my vision was very wavy. After reassuring myself that no, I didnt go out last night, this cant be a hangover, my mind clicked, that it was in fact a migraine. I hate migraines. I have had them since I was about 5, though they started as stomach migraine. Managed to take some meds for it, but of course they take nearly an hour to kick in and this morning was not one I could delay or disrupt, today was about supporting mum.I managed the basic tasks like dressing, but the thought of nebbing when my head felt like it was splitting, was not a thought I could bare. It just wasnt an option.
So radiotherapy clinic went ok, though it is the first one so will take a while to hit in. But the staff seem nice enough so yeh.
By afternoon my head was still pounding, so I decided to nap it off. After about an hour, I remember half waking, but not being able to wake anymore. Thinking, something is not right, I cant breathe. After a scary few minutes, trying to wake up enough to get help, I managed to move to my other side, with aims of getting up, but quickly falling back into the abyss.
When Dad woke me later, I was breathing better than earlier, but still not great. I checked my peak flows and it was 110. I was like WTF!! Its been a long time since that low, were talking pre trach days, so god knows what it would have been when it woke me.
I have loads of treatments tonight and its back to 220, but just incase, I have made sure my emergency bells are still reachable.
Its just an odd feeling. Im not being all woe about this, I know its my own fault and I can take it in my stride, its just a little scare, to keep me on my toes. But it is annoying, today, isnt about me. My parents dont need any of this, I need to be supporting my mum. I cant afford to get sick right now. And the thought of not seeing a doc for 3 months, makes me a little nervous.
But alas. Tomorrow is a new day, and we begin again. Tomorrow I will wake refreshed from a nice sleep. I have just changed my bed and I am looking froward to snuggling down.
Thursday, October 27, 2011
good, bad, indifferent.
As the title suggests, this week has been a week of everything.
Today was Chemo clinic with my mum. They had to stop one of her chemo drugs on the last cycle, as it was causing damage to her heart. She was becoming increasingly breathless and not dealing with it well at all. so it became heart scans and medication and wait and see. Today she got the results of her latest heart scan and although the damage is not completely gone, it is getting a lot better fairly quickly. This is great sign. But it now means weighing up the options. The med that was giving her the most trouble, is called Herceptin, or more commonly that great new wonder drug, the one that has been the feature of many articles about postcode lottery due to its expense and a lot of places not offering it. She is meant to be on it for 12 months. So every 3 weeks, till August 2012.
We spoke with the doc today and she did some calculations at how much effect it will have. With the surgery, the chemo she has had and the radiotherapy, she sits at approx 68ish% chance of still being here in 10 years (Bear in mind that 10%ish in the other 32% died of other causes) To add this other drug, gives her roughly another 7% chance of still being here in 10 years. Now 7% is nothing to be knocked, I mean out of 100 people, thats 7 more alive. But, and this is my opionion no one elses, is 7% worth it, if it means for the next year, her life is on hold as she cant move about? Knowing my mum, I would say not.
I have noticed through this, how differnt she is from me in her ways of dealing with things. I tend to keep stuff in, protect others from the truth, and deal with things of my own accord. She likes to share with everyone, everyone knows how she is feeling, and if she feels rough, its not unusal for her to burst out crying along with slogans such as, I just want shooting, or why me. The way she was over the summer, to put her back to that for 9+ months, I dont think she would hack it. I think it would destroy her. Not to mention, all that time sitting, at her age, would be damn dangerous to her joints and her lungs. But, its not my descsion, and its not one I can partake in. She needs to make it herself. If she dosnt, then there is always the risk of blame and guilt if things go wrong. Plus how could you possibly say to someone, I dont think you should have a treatment that will potentially keep you alive.
So tomorrow, we begin radiotherapy. That is going to be 3 rounds of 5 days a time. So with the oncolgoist, mum has decided she will probably go back for a go on the chemo and see how it is, but we are going to leave off on it until the radio is finished. So stage 2, here we go.
hmm
As for me, im still coughing a fair bit, though the coughing fits have eased a little, but the stuff im coughing up, not good. My peak flows dropped to 200 yesterday, despite nebs. I have also coughed up a lot of hard crap. Today, my peak flow jumped back to 250, yet I feel breathless, which dosnt add up. So silly lungs need to start behaving. I wont gross you out with stomach issue crap, due to increased chest crap.
And, as for the last one, I dont know if I blogged about this, but I think I am becoming more accepting of my transplant and finally reaching a point of acception, the point where most other people reach soon after. Well anyway, I want to know more about my donor. I dont even know if it is possible, with it being so long ago. I mean I know nothing of them, age, sex, nothing.
The only place I can think to ask is my transplant centre, Leeds. However, I want to do this on my own, not with my parents, just something I think is more private to me right now. Well, next week I have Liver clinic. More has radiotherapy and my niece is off school. PERFECT! This means, mum will be happy to let me drive to Leeds with my niece. (she dosnt like me doing long drives on my own incase I have problems) And as she has clinic, she can stay home. Which gives me perfect opportunity. And then, I shall leave it to fate. If they can give me details, then so be it, if they cant, then I will know it is time to move on. I mean really, how long do they keep records of that stuff.
Yup, and so, sleep time, as I have to be up in 7 hours.
Today was Chemo clinic with my mum. They had to stop one of her chemo drugs on the last cycle, as it was causing damage to her heart. She was becoming increasingly breathless and not dealing with it well at all. so it became heart scans and medication and wait and see. Today she got the results of her latest heart scan and although the damage is not completely gone, it is getting a lot better fairly quickly. This is great sign. But it now means weighing up the options. The med that was giving her the most trouble, is called Herceptin, or more commonly that great new wonder drug, the one that has been the feature of many articles about postcode lottery due to its expense and a lot of places not offering it. She is meant to be on it for 12 months. So every 3 weeks, till August 2012.
We spoke with the doc today and she did some calculations at how much effect it will have. With the surgery, the chemo she has had and the radiotherapy, she sits at approx 68ish% chance of still being here in 10 years (Bear in mind that 10%ish in the other 32% died of other causes) To add this other drug, gives her roughly another 7% chance of still being here in 10 years. Now 7% is nothing to be knocked, I mean out of 100 people, thats 7 more alive. But, and this is my opionion no one elses, is 7% worth it, if it means for the next year, her life is on hold as she cant move about? Knowing my mum, I would say not.
I have noticed through this, how differnt she is from me in her ways of dealing with things. I tend to keep stuff in, protect others from the truth, and deal with things of my own accord. She likes to share with everyone, everyone knows how she is feeling, and if she feels rough, its not unusal for her to burst out crying along with slogans such as, I just want shooting, or why me. The way she was over the summer, to put her back to that for 9+ months, I dont think she would hack it. I think it would destroy her. Not to mention, all that time sitting, at her age, would be damn dangerous to her joints and her lungs. But, its not my descsion, and its not one I can partake in. She needs to make it herself. If she dosnt, then there is always the risk of blame and guilt if things go wrong. Plus how could you possibly say to someone, I dont think you should have a treatment that will potentially keep you alive.
So tomorrow, we begin radiotherapy. That is going to be 3 rounds of 5 days a time. So with the oncolgoist, mum has decided she will probably go back for a go on the chemo and see how it is, but we are going to leave off on it until the radio is finished. So stage 2, here we go.
hmm
As for me, im still coughing a fair bit, though the coughing fits have eased a little, but the stuff im coughing up, not good. My peak flows dropped to 200 yesterday, despite nebs. I have also coughed up a lot of hard crap. Today, my peak flow jumped back to 250, yet I feel breathless, which dosnt add up. So silly lungs need to start behaving. I wont gross you out with stomach issue crap, due to increased chest crap.
And, as for the last one, I dont know if I blogged about this, but I think I am becoming more accepting of my transplant and finally reaching a point of acception, the point where most other people reach soon after. Well anyway, I want to know more about my donor. I dont even know if it is possible, with it being so long ago. I mean I know nothing of them, age, sex, nothing.
The only place I can think to ask is my transplant centre, Leeds. However, I want to do this on my own, not with my parents, just something I think is more private to me right now. Well, next week I have Liver clinic. More has radiotherapy and my niece is off school. PERFECT! This means, mum will be happy to let me drive to Leeds with my niece. (she dosnt like me doing long drives on my own incase I have problems) And as she has clinic, she can stay home. Which gives me perfect opportunity. And then, I shall leave it to fate. If they can give me details, then so be it, if they cant, then I will know it is time to move on. I mean really, how long do they keep records of that stuff.
Yup, and so, sleep time, as I have to be up in 7 hours.
Saturday, August 20, 2011
scary
I feel so raw, exposed and on edge right now.
My heart is on sleeve so please be gentle.
I am still learning
Learning to deal with life and all it seems to throw at us.
Mum has changed chemo treatment and this week was her first one that will last the next 3 rounds.
It hit her yesterday and she had a rough night last night.
I feel guilty as I got up at my usual time this morning and was none the wiser that she had had a rough night.
Damn hearing.
Today, I went for the weekend shop. We always restock things of the weekend. Its normally a task mum and I do together. Mum wasnt up to it and so I did it. I went slow and I managed things. It was good. I felt useful, able to something that would make a difference.
I had just lifted the shopping into the boot of the car and was returning my trolly.
And then it happened.
That thing that happens sometimes.
All the crap that was building on my chest and throat moved, I coughed as normal.
But then started chocking.
From what I can tell, when this happens, its somthing hitting my vocal cords.
If anything touches them, they go into spasm.
I coughed and spluttered.
Making my way back to car as quick as my lungs would allow.
Where I coughed some more.
I sat in the car for almost 20 minutes.
Tears streaming down my eyes.
coughing and gasping and coughing some more.
I had thoughts running through my head about what would I do if I couldnt catch my breath.
I was in the car, no one around. I couldnt call out nor get my phone.
Glugging some drink down inbetween coughing fits eased things.
But I was bent over double, using my hands to support my ribs.
Eventually things relaxed.
I sat in the car for a few more minutes, waiting for my muscles to relax.
Waiting for the pain to ease.
By this time, my head was also pounding.
And then I drove home and unpacked the shopping.
Where I was told off for being out for so long.
I understand she is not well.
I know she will be short tempered
It just seems to be the same thing every time.
When she gets sick, she thinks I suddenly get better.
I really do wish this were true. Then I wouldnt feel like such a failure.
Dad came in shortly after and I finished off tea.
Another tutting at as the bread I bought wasnt fresh enough and I managed to crack the yolk on the egg.
I really hope they both manage some sleep tonight.
I am trying not to take things personally.
I know things are 100x harder for the pair of them right now.
I am loaded up to my humdifier and I think I may just spend the the day on this tomorrow.
I have not the time to be sick this week.
Thoracic clinic on Monday.
Liver clinic on Wednesday.
A LLTGL thingy on friday.
My heart is on sleeve so please be gentle.
I am still learning
Learning to deal with life and all it seems to throw at us.
Mum has changed chemo treatment and this week was her first one that will last the next 3 rounds.
It hit her yesterday and she had a rough night last night.
I feel guilty as I got up at my usual time this morning and was none the wiser that she had had a rough night.
Damn hearing.
Today, I went for the weekend shop. We always restock things of the weekend. Its normally a task mum and I do together. Mum wasnt up to it and so I did it. I went slow and I managed things. It was good. I felt useful, able to something that would make a difference.
I had just lifted the shopping into the boot of the car and was returning my trolly.
And then it happened.
That thing that happens sometimes.
All the crap that was building on my chest and throat moved, I coughed as normal.
But then started chocking.
From what I can tell, when this happens, its somthing hitting my vocal cords.
If anything touches them, they go into spasm.
I coughed and spluttered.
Making my way back to car as quick as my lungs would allow.
Where I coughed some more.
I sat in the car for almost 20 minutes.
Tears streaming down my eyes.
coughing and gasping and coughing some more.
I had thoughts running through my head about what would I do if I couldnt catch my breath.
I was in the car, no one around. I couldnt call out nor get my phone.
Glugging some drink down inbetween coughing fits eased things.
But I was bent over double, using my hands to support my ribs.
Eventually things relaxed.
I sat in the car for a few more minutes, waiting for my muscles to relax.
Waiting for the pain to ease.
By this time, my head was also pounding.
And then I drove home and unpacked the shopping.
Where I was told off for being out for so long.
I understand she is not well.
I know she will be short tempered
It just seems to be the same thing every time.
When she gets sick, she thinks I suddenly get better.
I really do wish this were true. Then I wouldnt feel like such a failure.
Dad came in shortly after and I finished off tea.
Another tutting at as the bread I bought wasnt fresh enough and I managed to crack the yolk on the egg.
I really hope they both manage some sleep tonight.
I am trying not to take things personally.
I know things are 100x harder for the pair of them right now.
I am loaded up to my humdifier and I think I may just spend the the day on this tomorrow.
I have not the time to be sick this week.
Thoracic clinic on Monday.
Liver clinic on Wednesday.
A LLTGL thingy on friday.
Friday, July 08, 2011
bad day
Today has been a horrible day.
Probably one of the worst in a long time.
I woke, coughing my head off. I soon realised that not only did I still feel exhausted, but the top half of my body ached so much. My fears were confirmed when I looked at my phone and my sister had text, asking me to call her when I woke as she was worried about me, as I sounded rough all night.
So I spent the night coughing. And my youngest niece told me earlier that I was scaring her during the night, as I kept making gasping noises. Apparently, she kept checking on me to make sure I was still breathing, aww.
So yeh, looks like my luck with my throat has ended.
But, that has left me exhausted and more than a little annoyed/disappointed. Which has left me struggling to deal with everything else. My mum at home isnt well, so my dad is stressed and not sleeping. Which has left him grumpy and mum emotional. When those two emotions hit, it makes for a angry daddy. He shouted at my sister, for something stupid, which left her upset and set me on edge. Then I had to go home and then come back up here. Which once again, caused more stress. And well to cut a long story short, my who does not cry, couldnt stop for a while. Which my sister saw, and made her worse as well the strife now between her and my parents. The whole thing is fucked up. It would be so easy right now to just fall apart, but I have to keep it together. Now lets just hope London dont piss me off, else things may get dangerous.
Tomorrow is a new day.
Probably one of the worst in a long time.
I woke, coughing my head off. I soon realised that not only did I still feel exhausted, but the top half of my body ached so much. My fears were confirmed when I looked at my phone and my sister had text, asking me to call her when I woke as she was worried about me, as I sounded rough all night.
So I spent the night coughing. And my youngest niece told me earlier that I was scaring her during the night, as I kept making gasping noises. Apparently, she kept checking on me to make sure I was still breathing, aww.
So yeh, looks like my luck with my throat has ended.
But, that has left me exhausted and more than a little annoyed/disappointed. Which has left me struggling to deal with everything else. My mum at home isnt well, so my dad is stressed and not sleeping. Which has left him grumpy and mum emotional. When those two emotions hit, it makes for a angry daddy. He shouted at my sister, for something stupid, which left her upset and set me on edge. Then I had to go home and then come back up here. Which once again, caused more stress. And well to cut a long story short, my who does not cry, couldnt stop for a while. Which my sister saw, and made her worse as well the strife now between her and my parents. The whole thing is fucked up. It would be so easy right now to just fall apart, but I have to keep it together. Now lets just hope London dont piss me off, else things may get dangerous.
Tomorrow is a new day.
Wednesday, June 29, 2011
one hospital then another
Right now, I feel content. I have no words describe it really. I spent the most part of the last 8 years filled with hate and anger towards myself and projecting it on those around me. But right now, that part is buried. Dont get me wrong, I know it will be back, but for now, I am enjoying the calm. The small things make the biggest difference.
Simple tasks, such as making something pretty, buying new colouring pens, playing with my niece, reading, baths, hair dye, the closer bond forming with my mum, the chance to occasionally feel useful, to pay some hospital time back. Its like a big warm blanket is wrapped tightly around me. And for now, I am managing. For now.
Today, though, has been a long and tiring day. At 9:30 this morning I had an appointment with my new respiratory consultant. I like him, he seems down to earth, or perhaps it he was more honest after having a refferal from one of the top thoracic surgeons in Liverpool.
Anyway, long story short, he is curious as to why I have so many infections in my chest and he would like to see how my lungs are now. So, we are going to run a load of tests. First off bloods, which were done today, testing for some lovely fungus and allergy type things. He said my chest sounded clear, but askedfor a sample of what I was coughing up to send off. From said sample to send off, and the fact that I had a major sore throat this morning (never a good sign) as well as my saying I think there was something currently in my chest, he gave me antibiotics too. But, and this is where I like him already, it was a 10 day course! Most places only give me 5 or 7 days, which hardly does anything and I end up needing a second course. So he has my trust already ha.
I had to have a spirometry test (urgh)
FVC (forced vital capacity): 3.54
FEV1 (forced expiration volume): 2.16
PEF: 2.48
Which give me a a lung function of (drum roll please) 61%
Not bad I guess, but yeah.
He is also sending me for a repeat CT scan. The one on file is from 2009, so he wants to compare the condition of my lungs now. On top of that, he is sending me for some gastro type test thingy (there is a condition common in my dads side of the family of lungs developing holes) And he will call me back to clinic once he has the result from there. I think he is also thinking of trying inhalers as he asked me which ones I have had in the past. And then asked about steriods and if pervious ones had helped with my chest complaints. I told him that I couldnt tell him a good answer to that, as the times I have had them, were when my airway was really bad, which would also effect my chest.
So yeah, as far as first appointments go, this one went ok.
And then we dashed off to another hospital for mums second round of chemo. Which took forever. They tell you it will only be an hour, but it was more like 4 hours. Mum dozed in the chair while it was running and I struggled to stay awake. Sorted out both of our prescriptions whilst we were waiting.
Came home at 4 and I fell asleep for just over 3 hours. I was dead to the world as well. But, this is where it gets frustrating. Mum is going through worse treatment than me and yet she had to sort tea as I was out of it. I do feel guilty about this. She knows I help when I can and so dosnt mind me sleeping, but I still wish I could do more.
Simple tasks, such as making something pretty, buying new colouring pens, playing with my niece, reading, baths, hair dye, the closer bond forming with my mum, the chance to occasionally feel useful, to pay some hospital time back. Its like a big warm blanket is wrapped tightly around me. And for now, I am managing. For now.
Today, though, has been a long and tiring day. At 9:30 this morning I had an appointment with my new respiratory consultant. I like him, he seems down to earth, or perhaps it he was more honest after having a refferal from one of the top thoracic surgeons in Liverpool.
Anyway, long story short, he is curious as to why I have so many infections in my chest and he would like to see how my lungs are now. So, we are going to run a load of tests. First off bloods, which were done today, testing for some lovely fungus and allergy type things. He said my chest sounded clear, but askedfor a sample of what I was coughing up to send off. From said sample to send off, and the fact that I had a major sore throat this morning (never a good sign) as well as my saying I think there was something currently in my chest, he gave me antibiotics too. But, and this is where I like him already, it was a 10 day course! Most places only give me 5 or 7 days, which hardly does anything and I end up needing a second course. So he has my trust already ha.
I had to have a spirometry test (urgh)
FVC (forced vital capacity): 3.54
FEV1 (forced expiration volume): 2.16
PEF: 2.48
Which give me a a lung function of (drum roll please) 61%
Not bad I guess, but yeah.
He is also sending me for a repeat CT scan. The one on file is from 2009, so he wants to compare the condition of my lungs now. On top of that, he is sending me for some gastro type test thingy (there is a condition common in my dads side of the family of lungs developing holes) And he will call me back to clinic once he has the result from there. I think he is also thinking of trying inhalers as he asked me which ones I have had in the past. And then asked about steriods and if pervious ones had helped with my chest complaints. I told him that I couldnt tell him a good answer to that, as the times I have had them, were when my airway was really bad, which would also effect my chest.
So yeah, as far as first appointments go, this one went ok.
And then we dashed off to another hospital for mums second round of chemo. Which took forever. They tell you it will only be an hour, but it was more like 4 hours. Mum dozed in the chair while it was running and I struggled to stay awake. Sorted out both of our prescriptions whilst we were waiting.
Came home at 4 and I fell asleep for just over 3 hours. I was dead to the world as well. But, this is where it gets frustrating. Mum is going through worse treatment than me and yet she had to sort tea as I was out of it. I do feel guilty about this. She knows I help when I can and so dosnt mind me sleeping, but I still wish I could do more.
Friday, June 17, 2011
Its late
Its amazing how fragile life is.
In 25 years, I have not realized just how delicate our make up is, how easy it is to break beyond repair. And how little it really means in the grand scheme of things.
I am sitting up tonight to write this, and I know, I should be in bed instead, I know I will regret not getting the sleep in the morning, but right now, I still need my outlet.
I have not long gotten back from my local hospital, but as a visitor. Its a strange experience.
Monday, didnt go as well as I hoped. I still have the trach in and its still just as small. I am still unable to cap and talking it tiring. They lasered the new scared area again as it had pretty much closed in the week I was home. The scar tissue is re growing above the trach and so it is unsafe to take the trach out. They are hoping that it will slow down and eventually stop, but they have been hoping that for over a year now. There is a lot of unspoken things at the moment, but I think what they are saying, is that the trach is in place for the foreseeable future, either that or a stent again,but given my scaring issues stents are not great.
If it were just the trach, that would be one thing, but its the issues that go with it. The team and I have been trying to stay a step ahead this time. I have bactroban and a couple of other creams to treat the wound infections that I seem to habour on hand and I have been using them off and on. I have increased the nebulisers I do and have been trying my hardest not to complain at sitting on the neb for hours at a time. I still have my hypertonic nebs, which are a god send, but right now, I cant use them. I am too raw. I mean, usually, I get to 3 days post laser and I have no pain, yet I am still in agony this time. My throat has just had too much of a battering.
Physio increased my carbocystiene to 3 times a day, which is helping, but gradually wearing off and I was put on a tablet to help stop me from getting dizzy, due to the oxygen changes I am now experiencing. But it is still far from ideal. My head pounds of a morning and if I do to much. Pain I can deal with, but this brings tears to my eyes.
But for another month I am set. I have just set up my deliveries of trach stuff again and tomorrow, will inform the nurses, as protocol requires. I have informed my GP, though they are usless anyway. Just say, well you know what you doing, so just let us know what you need. Its like talking to a wall, sympathy only goes so far. And when talking about the headaches from the lack of oxygen an the neck pain from coughing, its met with oh yeh, you should rest more till it goes away. Yeah because that is possible. It makes me made, because I sleep my life away and yet still feel exhausted.
Which brings me to life this week. My mum has taken ill. When I got back on the train, my mood was stooped out, I was tetchy even for me and I dreaded facing my mum as I knew I was going to fall apart as soon as I saw her. Turned out the other way though. As soon as she saw me, she started crying. Turns out she had been feeling unwell, but didnt want to cause a fuss. So a couple of hours after getting off the train from London, I was driving my mum to A&E. It took every once of strength I had to stay strong for her. To give her medical info correctly, to remember diagnosis from before I was born, to tell them her drug list, allergies, treatment plan. She just wasnt in a position to remember it herself.
She was admitted in the end and I left the hospital about 2am to go home and sleep. I hadnt slept the night before due to a med mix up an pain so the sleep was needed.
Since then, I have been trying to keep on top of things. I need to keep her positive. She needs to see that this isnt a problem and can be managed, else next time she will put it off again. I have been sorting out appointments and shopping, phone calls and washing. Making sure she has everything she needs, like she does for me. Making sure my dad get food an sleep. He does not deal well with these type of things and would probably just shut down an sleep in the chair, eating chips permanently.
To say it frustrates me, is an understatement.Im 25 an should be able to deal with this kind of thing. But instead, it is taking me forever to get on top of what needs to be done. Using large amounts of caffeine to be able to make it through to the end of the night. But I will admit, that finding the time to fit in the things I should be doing, is becoming increasingly difficult. Dressings, medication and nebulizers are being left till last minute and perhaps not done as well as should be.
Things will settle, one day.
But then, going into my mums ward and seeing them all set up with their chemo, no hair and in so much pain, is a heartening experince. Sometimes, we go on, not for the hope of a better life, but to make the lives of those who need us better. Running away would be easy.
I think that is what I am seeing most right now. The extra reserves that come into play at hard times.
I hope I can repay my mum even a small amount of the care she has given me. But I also hope with every bone in my body, that my mum never reaches the point that some of those people on he ward are in.
In 25 years, I have not realized just how delicate our make up is, how easy it is to break beyond repair. And how little it really means in the grand scheme of things.
I am sitting up tonight to write this, and I know, I should be in bed instead, I know I will regret not getting the sleep in the morning, but right now, I still need my outlet.
I have not long gotten back from my local hospital, but as a visitor. Its a strange experience.
Monday, didnt go as well as I hoped. I still have the trach in and its still just as small. I am still unable to cap and talking it tiring. They lasered the new scared area again as it had pretty much closed in the week I was home. The scar tissue is re growing above the trach and so it is unsafe to take the trach out. They are hoping that it will slow down and eventually stop, but they have been hoping that for over a year now. There is a lot of unspoken things at the moment, but I think what they are saying, is that the trach is in place for the foreseeable future, either that or a stent again,but given my scaring issues stents are not great.
If it were just the trach, that would be one thing, but its the issues that go with it. The team and I have been trying to stay a step ahead this time. I have bactroban and a couple of other creams to treat the wound infections that I seem to habour on hand and I have been using them off and on. I have increased the nebulisers I do and have been trying my hardest not to complain at sitting on the neb for hours at a time. I still have my hypertonic nebs, which are a god send, but right now, I cant use them. I am too raw. I mean, usually, I get to 3 days post laser and I have no pain, yet I am still in agony this time. My throat has just had too much of a battering.
Physio increased my carbocystiene to 3 times a day, which is helping, but gradually wearing off and I was put on a tablet to help stop me from getting dizzy, due to the oxygen changes I am now experiencing. But it is still far from ideal. My head pounds of a morning and if I do to much. Pain I can deal with, but this brings tears to my eyes.
But for another month I am set. I have just set up my deliveries of trach stuff again and tomorrow, will inform the nurses, as protocol requires. I have informed my GP, though they are usless anyway. Just say, well you know what you doing, so just let us know what you need. Its like talking to a wall, sympathy only goes so far. And when talking about the headaches from the lack of oxygen an the neck pain from coughing, its met with oh yeh, you should rest more till it goes away. Yeah because that is possible. It makes me made, because I sleep my life away and yet still feel exhausted.
Which brings me to life this week. My mum has taken ill. When I got back on the train, my mood was stooped out, I was tetchy even for me and I dreaded facing my mum as I knew I was going to fall apart as soon as I saw her. Turned out the other way though. As soon as she saw me, she started crying. Turns out she had been feeling unwell, but didnt want to cause a fuss. So a couple of hours after getting off the train from London, I was driving my mum to A&E. It took every once of strength I had to stay strong for her. To give her medical info correctly, to remember diagnosis from before I was born, to tell them her drug list, allergies, treatment plan. She just wasnt in a position to remember it herself.
She was admitted in the end and I left the hospital about 2am to go home and sleep. I hadnt slept the night before due to a med mix up an pain so the sleep was needed.
Since then, I have been trying to keep on top of things. I need to keep her positive. She needs to see that this isnt a problem and can be managed, else next time she will put it off again. I have been sorting out appointments and shopping, phone calls and washing. Making sure she has everything she needs, like she does for me. Making sure my dad get food an sleep. He does not deal well with these type of things and would probably just shut down an sleep in the chair, eating chips permanently.
To say it frustrates me, is an understatement.Im 25 an should be able to deal with this kind of thing. But instead, it is taking me forever to get on top of what needs to be done. Using large amounts of caffeine to be able to make it through to the end of the night. But I will admit, that finding the time to fit in the things I should be doing, is becoming increasingly difficult. Dressings, medication and nebulizers are being left till last minute and perhaps not done as well as should be.
Things will settle, one day.
But then, going into my mums ward and seeing them all set up with their chemo, no hair and in so much pain, is a heartening experince. Sometimes, we go on, not for the hope of a better life, but to make the lives of those who need us better. Running away would be easy.
I think that is what I am seeing most right now. The extra reserves that come into play at hard times.
I hope I can repay my mum even a small amount of the care she has given me. But I also hope with every bone in my body, that my mum never reaches the point that some of those people on he ward are in.
Friday, April 29, 2011
these days
I know that I say this often, but the last few days have truly been so much of an emotional roller coaster. It has aldo shown me to a point that, the saying is true, that that does not kill you only serves to make you stronger. Illness is a nasty horrible thing, but at the same time, it does bring family closer and make you appreciate what you have.
Mum is home recovering and seems to be doing fairly well. She is still doing the whole negative thoughts thing. She only has a small scar and no drains, yet has convinced herself that the docs took a lot and decided things were to bad to bother doing anymore so closed her back up and left it at that.
Its funny, my surgeries never effect my sleep. Night before mums, I didnt sleep at all. In the last 3 days, I have had maybe 7 hours sleep, instead of my usual 12 hours a day.
The night before she went in, she said some pretty mean things to me. I completely forgive her for saying them, given what she was going through, but they hurt all the same. I think that I got mad and tried to ignore it, I kept on with house work. Everything hit a down point and I felt like I was going to explode. Before I knew it, I found myself heading back to old habits. Whilst I dont try to kid myself that self harm is fully behind me, it was a shock to come face to face with it again so abruptly.
I am not niave, I know the exact reasons behind my harming. Its a control thing. When things get out of control, I run to it for comfort. I have very little control over my body, how it will feel from one day to the next. I have no control over my life right now, it is controled by hospitals, health and abilities. To lose control over my routine and relatinoships was too much. Harming, allowed me to feel in control again. I was able to cause the pain, to feel crap for a reason of my own doing, to control where and how. Whilst I am not ashamed that went back to it, I know that I will struggle more with for the next few weeks. Its like inviting an old friend back into my life and not being able to stop thinking about them.
I am having a few other issues in regards to hospitals and doctors, but thats for another entry. I managed to be sensible and fght me fear so sought out treatment the next day. Some more medication and some stitches to take care of, but those things I can mange.
Last night, I was lying there, thinking. I was 12 when I made my first attempt at suicide. I remember vividly everything about that night including the disappointment the next morning when I was still breathing. I was niave. But I did write a letter back then. In it, I wrote about how I hated the fact that I didnt have a relationship with my mum. We didnt talk and we were far from close. Reviewing things now? Whilst at times I have hated it, being ill has forced me to be close to my mum and whilst we dont always see eye to eye, our relationship now is far better than it ever was. But it has always been a relationship built on my dependancy. The last few days things have felt a bit more even. She has needed my strength and support. She has needed my help and our relation ship has once again evolved. Perhaps I have gotten my wish after all, maybe this is how our relationship has been repaired and rebuilt. If only their were better circumstance behind it.
Mum is home recovering and seems to be doing fairly well. She is still doing the whole negative thoughts thing. She only has a small scar and no drains, yet has convinced herself that the docs took a lot and decided things were to bad to bother doing anymore so closed her back up and left it at that.
Its funny, my surgeries never effect my sleep. Night before mums, I didnt sleep at all. In the last 3 days, I have had maybe 7 hours sleep, instead of my usual 12 hours a day.
The night before she went in, she said some pretty mean things to me. I completely forgive her for saying them, given what she was going through, but they hurt all the same. I think that I got mad and tried to ignore it, I kept on with house work. Everything hit a down point and I felt like I was going to explode. Before I knew it, I found myself heading back to old habits. Whilst I dont try to kid myself that self harm is fully behind me, it was a shock to come face to face with it again so abruptly.
I am not niave, I know the exact reasons behind my harming. Its a control thing. When things get out of control, I run to it for comfort. I have very little control over my body, how it will feel from one day to the next. I have no control over my life right now, it is controled by hospitals, health and abilities. To lose control over my routine and relatinoships was too much. Harming, allowed me to feel in control again. I was able to cause the pain, to feel crap for a reason of my own doing, to control where and how. Whilst I am not ashamed that went back to it, I know that I will struggle more with for the next few weeks. Its like inviting an old friend back into my life and not being able to stop thinking about them.
I am having a few other issues in regards to hospitals and doctors, but thats for another entry. I managed to be sensible and fght me fear so sought out treatment the next day. Some more medication and some stitches to take care of, but those things I can mange.
Last night, I was lying there, thinking. I was 12 when I made my first attempt at suicide. I remember vividly everything about that night including the disappointment the next morning when I was still breathing. I was niave. But I did write a letter back then. In it, I wrote about how I hated the fact that I didnt have a relationship with my mum. We didnt talk and we were far from close. Reviewing things now? Whilst at times I have hated it, being ill has forced me to be close to my mum and whilst we dont always see eye to eye, our relationship now is far better than it ever was. But it has always been a relationship built on my dependancy. The last few days things have felt a bit more even. She has needed my strength and support. She has needed my help and our relation ship has once again evolved. Perhaps I have gotten my wish after all, maybe this is how our relationship has been repaired and rebuilt. If only their were better circumstance behind it.
Wednesday, April 27, 2011
Approaching
Tomorrow is mums surgery day.
The whole thing is not going so well to be honest.
Mum is scared, understandably, but she has it in her head that she is going to die a slow painful death from now on. No matter how much you tell her positive thoughts and such, she gets mad that things are not how she wants. The problem is, this is driving a huge rift between my dad and her. My dad has issues showing emotion and stuff to these types of things. Even with me, if I want advice on or his view on a medical thing, I just have to wait it out and he will give me hints when he is ready. He dosnt deal well with bad news and has spent many a time flat out on the floor when he hears it. I think he is more like me, if he distances himself and ignores it, he hopes it will go away.
The problem is, mum expects him to be the supportive type you see in films. And she is good at holding grudges. I can already see it driving them apart and it hard to watch.
I am trying to fill in the roles inbetween, but not doing so well.
My body feels like it is constantly fighting even more so than normal at the moment. On Sunday, dad asked me for a hand with the car. We were cleaning it and he dosnt know how the seats work and such so I was helping him where I could. I didnt feel like I had done that much, but I sat in the garden for 5 minutes and then suddenly was shivering. I put a jumper on and it was still warm out, but I could not get warm. I snuggled down in my bed hoping to get warm, but I didnt even have the energy to take my shoes off. In the end mum kept shouting me and I couldnt shout loud enough for her to hear me, so I forced myself to go down to her. She was asking about tea. The thought of actully eating made me want to cry. Normally, i eat and eat, but just the thought of the effort of using my hands to eat was freaking me out. Mum was telling me that I need to eat else i will be tired, so we settled on a milkshake, and then I literally crawled up to bed, this was about 9:30 so super early for me.
This morning, I woke at about 5am with the worst headache. It was so so painful. I took strong painkillers, but it wasnt shifting so after a couple of hours of tossing and turning in my bed I got up. Went out with mum to get some essentials, but the headache got worse, so came home to bed for a few hours again.
I have always had a large appetite, but at the moment, one meal, seems to be the limit of the day. Its strange, complete opposite for me. Not that I am complaining, i could do with losing a bit, but I mean, its easter and I havnt even had chocolate ha.
Oh well, have to be up early in the morning, so that is all for now.
The whole thing is not going so well to be honest.
Mum is scared, understandably, but she has it in her head that she is going to die a slow painful death from now on. No matter how much you tell her positive thoughts and such, she gets mad that things are not how she wants. The problem is, this is driving a huge rift between my dad and her. My dad has issues showing emotion and stuff to these types of things. Even with me, if I want advice on or his view on a medical thing, I just have to wait it out and he will give me hints when he is ready. He dosnt deal well with bad news and has spent many a time flat out on the floor when he hears it. I think he is more like me, if he distances himself and ignores it, he hopes it will go away.
The problem is, mum expects him to be the supportive type you see in films. And she is good at holding grudges. I can already see it driving them apart and it hard to watch.
I am trying to fill in the roles inbetween, but not doing so well.
My body feels like it is constantly fighting even more so than normal at the moment. On Sunday, dad asked me for a hand with the car. We were cleaning it and he dosnt know how the seats work and such so I was helping him where I could. I didnt feel like I had done that much, but I sat in the garden for 5 minutes and then suddenly was shivering. I put a jumper on and it was still warm out, but I could not get warm. I snuggled down in my bed hoping to get warm, but I didnt even have the energy to take my shoes off. In the end mum kept shouting me and I couldnt shout loud enough for her to hear me, so I forced myself to go down to her. She was asking about tea. The thought of actully eating made me want to cry. Normally, i eat and eat, but just the thought of the effort of using my hands to eat was freaking me out. Mum was telling me that I need to eat else i will be tired, so we settled on a milkshake, and then I literally crawled up to bed, this was about 9:30 so super early for me.
This morning, I woke at about 5am with the worst headache. It was so so painful. I took strong painkillers, but it wasnt shifting so after a couple of hours of tossing and turning in my bed I got up. Went out with mum to get some essentials, but the headache got worse, so came home to bed for a few hours again.
I have always had a large appetite, but at the moment, one meal, seems to be the limit of the day. Its strange, complete opposite for me. Not that I am complaining, i could do with losing a bit, but I mean, its easter and I havnt even had chocolate ha.
Oh well, have to be up early in the morning, so that is all for now.
Sunday, April 24, 2011
Happy Easter
Tonight, is the first night I have gone up the stairs walking and not feeling like I had just run a marathon. Lately I have taken to crawling up the stairs as it just easier. It amazes me how much my breathing effects my muscles. On bad days, every time I lift my leg or arm, it feels like I am lifting weights. Tonight, I dont feel so bad and I begun kidding myself that perhaps things were settling.
Today, I took a big step. I used the wheelchair to help my mum with shopping. It did make things easier, and I didnt feel so exhausted that I could cry at the end of shopping. The sad part? It is probably the last time I will be able to use the wheelchair with my mum for a while.
She goes for her surgery on Wednesday. They have decided on a lumpectomy and removal of a couple of lymph nodes. They will then test the lymph nodes and the surrounding tissue to see if she needs further surgery and from there set a schedule for treatment and such.
I often go through phases with music. I find an artist or song who I love, put them on repeat and listen to them continually till I get bored. I hate doing it as I kill the song, but at the same time I love it. Right now, I am spending a long time just resting and listening to Joshua Radin.
I have also been playing with some watercolor paper to make some images.
I wanted to experiment mainly, but I also wanted to make a special card for my elderly neighbor for easter. Ideally, I need to do a little bit more on it in the morning, as I think it needs a little bit of purple in the top right.
What do you think? I should have spent a bit more time on it, but overall I like it I think.
Happy Easter every one.
And as easter is all about new life and beginnings, I hope that it rings true for you all, especially those on the transplant list :)
Today, I took a big step. I used the wheelchair to help my mum with shopping. It did make things easier, and I didnt feel so exhausted that I could cry at the end of shopping. The sad part? It is probably the last time I will be able to use the wheelchair with my mum for a while.
She goes for her surgery on Wednesday. They have decided on a lumpectomy and removal of a couple of lymph nodes. They will then test the lymph nodes and the surrounding tissue to see if she needs further surgery and from there set a schedule for treatment and such.
I often go through phases with music. I find an artist or song who I love, put them on repeat and listen to them continually till I get bored. I hate doing it as I kill the song, but at the same time I love it. Right now, I am spending a long time just resting and listening to Joshua Radin.
I have also been playing with some watercolor paper to make some images.
What do you think? I should have spent a bit more time on it, but overall I like it I think.
Happy Easter every one.
And as easter is all about new life and beginnings, I hope that it rings true for you all, especially those on the transplant list :)
Wednesday, April 20, 2011
Dreams
I keep having reoccurring dreams. In them, my family are arguing, they want me to do something, though I cant recall what and I am trying to escape them. Though, I cant escape, Im stuck on the floor. Not the strength to lift myself as my legs keep giving way. At some point, I end up in a wheelchair, trying to escape them, by dodging in and out of various places and jumping in lifts to get to a different floor. Its all very odd, but I find myself waking feeling rather anxious.
The weekend was exhausting to say the least, both mentally and physically. The physical in a way felt good, to force my muscles to work and keep going through the pain when I wasnt getting enough oxygen. The mental was a little more challenging. My sisters friend came for a 'chat' after she had had a few drinks. My sister having told her my life story, the friend kept asking me all kinds of questions, how I can deal with things so well and not get angry. How I keep going and not give up. She touched on more than a few raw nerves. And basically followed me around for about 5 hours asking all the same questions, wanting details, in my face constant wanting to know what I am going to do with my life. At one point, I went and hid in one of the empty wardrobes in the new house. I know I havnt dealt with things right and the things I still cover up where the things she kept trying to force me to talk about. Anyway, hopefully I wont see her again.
The next 2 months are probably going to be the hardest in my life so far, maybe. I am at Cancer clinic tomorrow with mum for her pre op and such. I need to get through that without crying for a start. Next week will be mums surgery, that is going to be one tense day. Then she has her recovery period. And my mind has already begun to stray back to thoughts of my surgery. I need to not think about mine yet. Cant face losing my voice or tubes yet again.
I really did over do it at the weekend and have since been paying for it. Yesterday, I woke at mid day and was asleep again by 2 and woke again at 7. Pretty much did the same thing again today. Aching all over and feeling full of cold. How to keep busy to keep my mind on the straight whilst not wearing my body down. My oxygen levels seem to sit at about 97% when I am still, however one set of stairs take them down to 92% and walking at a normal pace drops me to 88%. This is what tires me the most I think. And days when I have been out walking, I find that I crawl up the stairs rather than walk.
But this is all going to get better. We have to reman positive.
Its going to be tough for a couple of months, but after that, its going to be the end and its going to get better.
It has to right?
The weekend was exhausting to say the least, both mentally and physically. The physical in a way felt good, to force my muscles to work and keep going through the pain when I wasnt getting enough oxygen. The mental was a little more challenging. My sisters friend came for a 'chat' after she had had a few drinks. My sister having told her my life story, the friend kept asking me all kinds of questions, how I can deal with things so well and not get angry. How I keep going and not give up. She touched on more than a few raw nerves. And basically followed me around for about 5 hours asking all the same questions, wanting details, in my face constant wanting to know what I am going to do with my life. At one point, I went and hid in one of the empty wardrobes in the new house. I know I havnt dealt with things right and the things I still cover up where the things she kept trying to force me to talk about. Anyway, hopefully I wont see her again.
The next 2 months are probably going to be the hardest in my life so far, maybe. I am at Cancer clinic tomorrow with mum for her pre op and such. I need to get through that without crying for a start. Next week will be mums surgery, that is going to be one tense day. Then she has her recovery period. And my mind has already begun to stray back to thoughts of my surgery. I need to not think about mine yet. Cant face losing my voice or tubes yet again.
I really did over do it at the weekend and have since been paying for it. Yesterday, I woke at mid day and was asleep again by 2 and woke again at 7. Pretty much did the same thing again today. Aching all over and feeling full of cold. How to keep busy to keep my mind on the straight whilst not wearing my body down. My oxygen levels seem to sit at about 97% when I am still, however one set of stairs take them down to 92% and walking at a normal pace drops me to 88%. This is what tires me the most I think. And days when I have been out walking, I find that I crawl up the stairs rather than walk.
But this is all going to get better. We have to reman positive.
Its going to be tough for a couple of months, but after that, its going to be the end and its going to get better.
It has to right?
Monday, April 11, 2011
changes
I feel like I have finally switched. From annoying trying to deal with it phase, to coping or at least getting on with things. I hope this switch lasts because I truly hate being in the angry bitter phase.
So we are still working on trying to get admissions and stuff sorted. I am meant to be going to London for a laser again on Monday, but they were meant to ring and confirm it last week. I am starting to get desperate now and even moving from one room to the next, leaves me making this gasping whistling noise. The other problem is, I still think I have my chest infection, however, when my airway is narrow, I cant get the speed or amount of air to get a decent cough to clear my lungs. Means I have to run plenty of extra nebs but more so than that, it actually got kinda dangerous the other day while out shopping. I was leaning on the trolly, and something in my lungs dislodged, however, because I couldnt cough right, it kinda stuck in my throat, meaning I was literally gasping and chocking. I could see the colour draining out of mums face. I felt like I was about to pass out and the room began to swirl. My niece who was with me, was able to grab a drink from the next isle, which I managed to get a bit down and loosen my throat. After a few minutes I was eventually breathing easier and I was able to clear myself enough to carry on.
Its pretty scary when stuff like that happens. I actually got a pulse oximeter over the weekend however, I dont think (or hope) its accurate. It shows that my sats when sitting still are about 97-97% which is normal, however on exertion they drop to 76%. This cant be right as below 85% is when you start talking about organ failure. I know my resting heart rate is about 100 to 110 and again on exertion it jumps to 140. The machine seems to be reading that right.
Mum wants me to go ahead with my big surgery. He surgeon is arranging it so that he operation will be before my big one. After that, she will have a few weeks where she is to recover before starting therapy, thats when I will have my big op, as sitting about is good for her as long as we can find some place to stay that isnt to far away. Plus, if she runs into trouble, the same hospital that I am in has a brilliant unit apparently that her doctor has worked in.
So the plan then is that I will be out of hospital and recovered when she starts her therapy, meaning that I should be in the best condition possible and able to look after her and take her back and forth to therapy, as it is about a 40min drive from ours to the place where she will have it.
I wish she had more support and contact in place, in fact I should fine out when her next GP appointment is. She has been reading up on the net, the net can be wonderful or a bain sometimes. And has been telling me that having this surgery and therapy will give her another 5 years at most. I tried to explain t better to her, but couldnt put it into words. How do you tell someone that it dosnt give you another 5 years, that it means that there is a 50% chance you will still be here in 5 years. Good for the optimist, bad for the pessimist.
Though, conversation has been very hush hush so far.
There is a lot of drama going on in my family at present, mainly with my sisters family. As a result, my youngest niece is staying in ours at present. I love having her around and spoiling her and generally just hugging lots. But she also needs to be protected and isnt a very happy person at best at the moment. She has been through so much already for a kid of her age, yet continually amazes me.
Mum has told her that she is sick, but needs to get a bit sicker before she gets well again. We know mum will lose her hair, so we need to prepare my niece. It also means, that if my breathing dosnt improve and I get stuck over the summer, my niece can help. She loves staying with me anyway, so depending, she would be helpful for things like changing beds and such that I really struggle with and carrying washing. My dad would do it gladly, but it just seems unfair. He is the only one working and supporting my mum and I, I would rather his time be spent with the supportive and social role with my mum than chores.
It seems odd planning all this, but it needs to be planned else appointments and admissions with clash.
The bit that makes me saddest, is what my niece said to my mum. She said, but you will get better? My mum said yes. I do hope its true. It would break my nieces heart to lose her. She is closest to her out of all the grandkids. She spends more time in ours than any of the others have
Please dont let it have spread.
So we are still working on trying to get admissions and stuff sorted. I am meant to be going to London for a laser again on Monday, but they were meant to ring and confirm it last week. I am starting to get desperate now and even moving from one room to the next, leaves me making this gasping whistling noise. The other problem is, I still think I have my chest infection, however, when my airway is narrow, I cant get the speed or amount of air to get a decent cough to clear my lungs. Means I have to run plenty of extra nebs but more so than that, it actually got kinda dangerous the other day while out shopping. I was leaning on the trolly, and something in my lungs dislodged, however, because I couldnt cough right, it kinda stuck in my throat, meaning I was literally gasping and chocking. I could see the colour draining out of mums face. I felt like I was about to pass out and the room began to swirl. My niece who was with me, was able to grab a drink from the next isle, which I managed to get a bit down and loosen my throat. After a few minutes I was eventually breathing easier and I was able to clear myself enough to carry on.
Its pretty scary when stuff like that happens. I actually got a pulse oximeter over the weekend however, I dont think (or hope) its accurate. It shows that my sats when sitting still are about 97-97% which is normal, however on exertion they drop to 76%. This cant be right as below 85% is when you start talking about organ failure. I know my resting heart rate is about 100 to 110 and again on exertion it jumps to 140. The machine seems to be reading that right.
Mum wants me to go ahead with my big surgery. He surgeon is arranging it so that he operation will be before my big one. After that, she will have a few weeks where she is to recover before starting therapy, thats when I will have my big op, as sitting about is good for her as long as we can find some place to stay that isnt to far away. Plus, if she runs into trouble, the same hospital that I am in has a brilliant unit apparently that her doctor has worked in.
So the plan then is that I will be out of hospital and recovered when she starts her therapy, meaning that I should be in the best condition possible and able to look after her and take her back and forth to therapy, as it is about a 40min drive from ours to the place where she will have it.
I wish she had more support and contact in place, in fact I should fine out when her next GP appointment is. She has been reading up on the net, the net can be wonderful or a bain sometimes. And has been telling me that having this surgery and therapy will give her another 5 years at most. I tried to explain t better to her, but couldnt put it into words. How do you tell someone that it dosnt give you another 5 years, that it means that there is a 50% chance you will still be here in 5 years. Good for the optimist, bad for the pessimist.
Though, conversation has been very hush hush so far.
There is a lot of drama going on in my family at present, mainly with my sisters family. As a result, my youngest niece is staying in ours at present. I love having her around and spoiling her and generally just hugging lots. But she also needs to be protected and isnt a very happy person at best at the moment. She has been through so much already for a kid of her age, yet continually amazes me.
Mum has told her that she is sick, but needs to get a bit sicker before she gets well again. We know mum will lose her hair, so we need to prepare my niece. It also means, that if my breathing dosnt improve and I get stuck over the summer, my niece can help. She loves staying with me anyway, so depending, she would be helpful for things like changing beds and such that I really struggle with and carrying washing. My dad would do it gladly, but it just seems unfair. He is the only one working and supporting my mum and I, I would rather his time be spent with the supportive and social role with my mum than chores.
It seems odd planning all this, but it needs to be planned else appointments and admissions with clash.
The bit that makes me saddest, is what my niece said to my mum. She said, but you will get better? My mum said yes. I do hope its true. It would break my nieces heart to lose her. She is closest to her out of all the grandkids. She spends more time in ours than any of the others have
Please dont let it have spread.
Friday, April 08, 2011
Well...
I have been struggling to come to terms with some new adjustments the last week or so. Its been a messy complicated time. I really have no other words to describe it. Today, I was due news regarding it and hoped for the best, thinking it wouldnt really change the outcome much. But it has. Thought I should get this down in my blog, before the real storm hits and it overcomes me once again.
Just over two weeks ago, my mum was diagnosed with breast cancer. Since then, she has been off work and on sleeping tablets. I will admit it now, my first reaction was the one that I try to have with everything, to be hopeful and I said that to her, its not a death a sentence. Sure there will be surgery and radio therapy for a few weeks, but once that is done with, there is a good chance to go on without any other problems.
Then I started to get angry with her. She has always brought me to deal with things, to carry on as normal for as long as you can as getting out of routine makes things worse and gives you more time to think about think about everything. And here she was doing the opposite. What was making me more irritated, was that she seemed to think that because she was off work, we could do all kinds, like clean the house top to bottom and spend long periods of time out of the house. Regardless of her situation I wasnt up to that.
Today, we have just found out that the cancer is stage 3. She needs fairly urgent surgery and it will probably be a full mastectomy. She will also need Chemo and more than likely Radiotherapy as well.
I had hoped so much that it wasnt going to be this advanced. From what I recall from my studying, the survival rate for stage 3 was something like 50%. She will lose her hair, she will be sick constantly, she will pick up tons of bugs.
Its a lot to take in. I know right now that she needs me to be strong. I need to be able to take her for treatments and look after her when she is home. I have no problem with becoming her career, but am I physically able to do it? I need to arrange London around it. They are going to try and fit me in for a laser in 2 weeks time as I am struggling now, major headaches and difficulty waking up and weak muscles. They want to admit me for my big op at the second week in May. I think I am going to ask them to put it off for a couple of months. To just keep going with the laser for a while. That way, I can manage it in day cases and get back home to my mum.
We shall see I guess.
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