I wonder if anyone will read this. I wonder if anyone remembers I exist. I wonder if anyone will care. I have been led to wonder a lot of things over the past few months. Life makes me confused. Events that I can't begin to understand have occurred and left me feeling bereft, frightened and alone.
I have deliberately, methodically and completely intentionally removed some people from my life. They were doing me no good, in fact I think one of them in particular was doing me harm. So, no more contact. Which is strange and yet freeing at the same time. I have allowed myself to be used as a personal bank, agony aunt, sounding board, psychologist.....and if I need someone I look around and find myself alone. No more. I had to set myself free, I had to get a second mobile phone because I was feeling unable to cope with having my main number available to all and sundry 24/7 but was scared to switch it off. Ridiculous.
So, the past few months. Arguments between my medical team about treatment options for my brain tumour. A death in the family which has rocked things to the core. Mental health has been surprisingly stable given that I've been taken off all medication and quite a lot of shit has happened. Been dumped by a couple of people I thought were friends but have survived and realised that I can't change who I am just to suit others.
Why then. Why. Why am I finding it so hard? Deep inside I am screaming out in pain and anguish because things hurt so much. I accept that I'm not the best of people, I make mistakes, I'm not perfect...I accept that, essentially, I am nothing. I am worthless. I give zero, do zero, achieve zero. I let people down. I'm flawed. I'm unpopular, I'm intrinsically wasteful. I offer nothing. I fear commitment. I relish opportunity yet waste it when it's given.
I love. I feel. I care. I think. I listen.
I look around and I have no-one. It's my own doing because I am me. But I can't change my core, only the outward appearance. But I can't change that because I can't bring myself to live a lie.
What is it that I am afraid of. I can answer that in one word.
Life.
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Showing posts with label physical illness. Show all posts
Showing posts with label physical illness. Show all posts
Sunday, 8 May 2011
Tuesday, 15 March 2011
So Long Since Then
I desperately need to write an update and not only to let out the stuff that I've been burying over the past months since I last wrote. I'll try and do that soon.
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Wednesday, 1 September 2010
How Do I Choose?
When I saw my specialist on the 20th August we had a frank conversation about my illness. In that conversation I told him that I've been informed that other individuals in my family tree have had either related tumours or other indicators that he asked me way back at the time of diagnosis to find out about. When he first asked me about this I outright asked both of my parents whether anyone had the symptoms he was interested in. Both parents said no. At the risk of sounding like Jeremy Kyle, one of them lied outright.
Just before I went to my appointment on the 20th I spoke to my parents on the phone. *She* told me that someone in the family tree has got one of the major illnesses that my specialist had asked me to find out about. I asked why she didn't tell me when I asked and she said, "you're making a big fuss over nothing". I explained, as calmly as I could, that it was my specialist who wants to know, not me. Of course that changed everything and she told me about a number of people who had the exact symptoms I asked her about in the first place.
At the appointment I told all this to my specialist, he said that this "new" information changes things significantly and he wants me to have a DNA screening to look for a mutation on Chromosome 11. This is an Autosomal Dominant condition which affects a protein called Menin. Menin is responsible for the regulation of cell division and when there is a corruption of this type it causes tumours to grow in the Endocrine system but also can cause huge levels of Calcium in the blood which in turn leads to problems such as Kidney stones.
He told me that if he'd had all this information at the beginning he'd have encouraged me to get tested straight away. The fact that my 1st cousin had a Pituitary adenoma for which she had surgical intervention would have been enough for him to do a DNA screen "just in case". With the family history now apparent he is even more convinced that all isn't well on 11q13.
The condition he's looking for is called Familial Multiple Endocrine Neoplasia Type One (fMEN1). If one parent has the mutation they have a 50/50 chance of passing that to their child. There are 1:30,000 people affected by fMEN1 and worldwide the approximate number of individuals with it is 209,107.
I have until Friday to decide whether to consent to the DNA screening. If this was going to have an immediate impact on any other person then it would be really easy for me to say yes. As it's not particularly going to affect anyone other than me I'm caught between getting it done just to know one way or the other and not getting it done because really it doesn't make much of a difference. To be honest, I know that if it came back as a positive result I'd have even more attention on me than I already do and as I already hate that I certainly don't want any more.
During this afternoon I rang the NHS Organ Donor and Blood Transfusion service to ask if a positive result would impact upon my eligibility to donate. Blood Transfusion person said I'm already ineligible to give blood because of hypothyroidism so the question isn't relevant. Organ Donor person tried her best to help but she couldn't find a single thing on her database about fMEN1 and being a donor. She said that the only thing she can suggest is that I stay on the register and if my organs ever are able to be donated the Dr's who are expert in such things will make a decision based on my full medical history.
That part about my full medical history is making me swing towards getting the test done. That way, if my organs are ever considered for transplant, the medics will have all the information they need. If it's negative then brilliant, if it's positive then they'll know what to do.
Factors making me not keen on the test are;
Money - this is an expensive test and I already get so much from the NHS I feel appalled at what I cost them.
Time - doing the screening takes a lot of time for the medics and approximately 12wks minimum for results.
Consequences - can I justify this when it's only going to change things for me and no-one else.
Statistics - 1:30,000 is so rare that I don't believe it's possible I'll test positive.
So, that's the decision I have to make. I've been pondering on it for days and I'm no closer to an answer. Read more!
Just before I went to my appointment on the 20th I spoke to my parents on the phone. *She* told me that someone in the family tree has got one of the major illnesses that my specialist had asked me to find out about. I asked why she didn't tell me when I asked and she said, "you're making a big fuss over nothing". I explained, as calmly as I could, that it was my specialist who wants to know, not me. Of course that changed everything and she told me about a number of people who had the exact symptoms I asked her about in the first place.
At the appointment I told all this to my specialist, he said that this "new" information changes things significantly and he wants me to have a DNA screening to look for a mutation on Chromosome 11. This is an Autosomal Dominant condition which affects a protein called Menin. Menin is responsible for the regulation of cell division and when there is a corruption of this type it causes tumours to grow in the Endocrine system but also can cause huge levels of Calcium in the blood which in turn leads to problems such as Kidney stones.
He told me that if he'd had all this information at the beginning he'd have encouraged me to get tested straight away. The fact that my 1st cousin had a Pituitary adenoma for which she had surgical intervention would have been enough for him to do a DNA screen "just in case". With the family history now apparent he is even more convinced that all isn't well on 11q13.
The condition he's looking for is called Familial Multiple Endocrine Neoplasia Type One (fMEN1). If one parent has the mutation they have a 50/50 chance of passing that to their child. There are 1:30,000 people affected by fMEN1 and worldwide the approximate number of individuals with it is 209,107.
I have until Friday to decide whether to consent to the DNA screening. If this was going to have an immediate impact on any other person then it would be really easy for me to say yes. As it's not particularly going to affect anyone other than me I'm caught between getting it done just to know one way or the other and not getting it done because really it doesn't make much of a difference. To be honest, I know that if it came back as a positive result I'd have even more attention on me than I already do and as I already hate that I certainly don't want any more.
During this afternoon I rang the NHS Organ Donor and Blood Transfusion service to ask if a positive result would impact upon my eligibility to donate. Blood Transfusion person said I'm already ineligible to give blood because of hypothyroidism so the question isn't relevant. Organ Donor person tried her best to help but she couldn't find a single thing on her database about fMEN1 and being a donor. She said that the only thing she can suggest is that I stay on the register and if my organs ever are able to be donated the Dr's who are expert in such things will make a decision based on my full medical history.
That part about my full medical history is making me swing towards getting the test done. That way, if my organs are ever considered for transplant, the medics will have all the information they need. If it's negative then brilliant, if it's positive then they'll know what to do.
Factors making me not keen on the test are;
Money - this is an expensive test and I already get so much from the NHS I feel appalled at what I cost them.
Time - doing the screening takes a lot of time for the medics and approximately 12wks minimum for results.
Consequences - can I justify this when it's only going to change things for me and no-one else.
Statistics - 1:30,000 is so rare that I don't believe it's possible I'll test positive.
So, that's the decision I have to make. I've been pondering on it for days and I'm no closer to an answer. Read more!
Saturday, 21 August 2010
Learning
I've not been writing here because I wanted to condense everything into one post. Thank you for the kind comments, just knowing someone cares is helping me to try and keep going.
I wrote before about finding out Dad isn't well. Since then a lot of things have come to light and I'm far from being surprised by that but I am feeling somewhat disappointed. Dad was diagnosed almost 18mths ago, he doesn't seem to realise this which is a blessing. He's been tried on Aricept but it was discontinued, with advice, because of the side-effects he was experiencing. Dad doesn't realise what Aricept actually is, he thinks it's for hypertension. I've bought a couple of books to try and help me understand what's going on for him, to be honest I'm floundering with this one. All I want is to help/support him as much as possible so I thought that getting a couple of books about others who have experienced loved ones having this illness would be as good a place as any to start.
Things with me seem to be sort of calming down. (jinxed it now)
Saw my specialist yesterday to discuss my latest MRI and blood tests. He feels confident that we can monitor things with regular blood work, six monthly clinics and another MRI in July 2011. Further to that he is arranging for me to have a range of other blood tests done, most of them I've had before and it's just straightforward annual monitoring (liver, full blood, fasting glucose etc) a couple are new to me, one which I can't remember the name of because it sounded complicated and the other is a DNA screen for chromosome mutation.
The DNA is specifically looking for irregularities on Chromosome 11 which results in tumours forming in the endocrine system. My tumour was/is in my Pituitary Gland and was a macroadenoma (part prolactinoma, part non-functioning) I use is and was interchangeably because surgery removed almost all of the disease but there is some rogue tissue still there. The reason my specialist is getting the DNA screening done is because he feels it may be the case that I have a disorder called Familial Multiple Endocrine Neoplasia Type 1 (fMEN1) He's basing that on my illness and the fact that a number of family members have had problems with high calcium resulting in intervention being necessary. Also because two relatives have had endocrine tumours.
It sounds a bit drastic or scary to be having this done but I really feel that this is a positive thing to be investigating. If the test comes back positive I will be able (hopefully) to be monitored for signs of other problems coming to light so they can be dealt with fast and with minimum fuss. If it comes back negative it's one less thing to stress about. Due to this I can't see any drawbacks to consenting to having the DNA test done.
So, that's where I'm at. There are other things I could write about but these are the main two right now.
Read more!
I wrote before about finding out Dad isn't well. Since then a lot of things have come to light and I'm far from being surprised by that but I am feeling somewhat disappointed. Dad was diagnosed almost 18mths ago, he doesn't seem to realise this which is a blessing. He's been tried on Aricept but it was discontinued, with advice, because of the side-effects he was experiencing. Dad doesn't realise what Aricept actually is, he thinks it's for hypertension. I've bought a couple of books to try and help me understand what's going on for him, to be honest I'm floundering with this one. All I want is to help/support him as much as possible so I thought that getting a couple of books about others who have experienced loved ones having this illness would be as good a place as any to start.
Things with me seem to be sort of calming down. (jinxed it now)
Saw my specialist yesterday to discuss my latest MRI and blood tests. He feels confident that we can monitor things with regular blood work, six monthly clinics and another MRI in July 2011. Further to that he is arranging for me to have a range of other blood tests done, most of them I've had before and it's just straightforward annual monitoring (liver, full blood, fasting glucose etc) a couple are new to me, one which I can't remember the name of because it sounded complicated and the other is a DNA screen for chromosome mutation.
The DNA is specifically looking for irregularities on Chromosome 11 which results in tumours forming in the endocrine system. My tumour was/is in my Pituitary Gland and was a macroadenoma (part prolactinoma, part non-functioning) I use is and was interchangeably because surgery removed almost all of the disease but there is some rogue tissue still there. The reason my specialist is getting the DNA screening done is because he feels it may be the case that I have a disorder called Familial Multiple Endocrine Neoplasia Type 1 (fMEN1) He's basing that on my illness and the fact that a number of family members have had problems with high calcium resulting in intervention being necessary. Also because two relatives have had endocrine tumours.
It sounds a bit drastic or scary to be having this done but I really feel that this is a positive thing to be investigating. If the test comes back positive I will be able (hopefully) to be monitored for signs of other problems coming to light so they can be dealt with fast and with minimum fuss. If it comes back negative it's one less thing to stress about. Due to this I can't see any drawbacks to consenting to having the DNA test done.
So, that's where I'm at. There are other things I could write about but these are the main two right now.
Read more!
Friday, 30 July 2010
Broken Crystal
I notice that I wrote my last entry on Sunday 25th July and without trying to give excuses for what I said I do have to explain the reasons for it. That day was the anniversary of the best friend I've ever had committing suicide. It's been three years but it is still exceptionally raw and painful. I spent the whole of Saturday and Sunday consumed with a mixture of grief and utter guilt. I ended up totally distraught and I honestly thought that the pain would never end.
To be honest, I'm still not back to my usual self. This week has been horrendous for other reasons and it has caused me to start questioning everything. Things that I thought were certain and that I thought I had managed to reconcile within myself have been thrown into the air and shattered into 1000 pieces.
I've written about Dad before, about how he has been my rock, carer, confidant. How he's stuck with me through the stupid, reckless, heartbreaking. His unconditional love and his calm and loving reading of bedtime stories, making up animal noises for when he wiped my ears with a cloth at my bathtime. This giant of a man who gave so much to so many people, not least his family and clients at work. A survivor of a ruptured Aortic Aneurysm 40miles from hospital in the middle of the night. They called him Lazarus and a Walking Miracle. Well they might, the 13th anniversary of his surgery passed last week.
I just call him Dad.
On Wednesday I learned that my wonderful, loving, gentle Dad is going through a horrible and rapid onset of Dementia.
He has fixed me up over the years, washed grazed knees and done so much more. I've done similar for him a few times. The hardest part now is knowing that there's no way I can do anything to fix this. He is changing right before my eyes, it's as if someone has given him a personality and memory transplant.
I'm not prepared for this. I've always known that as a very late baby I would lose Dad and I've prepared myself for that. But I've never factored in this, I thought death would take him before his mind started wearing out. I wish I had been right.
Read more!
To be honest, I'm still not back to my usual self. This week has been horrendous for other reasons and it has caused me to start questioning everything. Things that I thought were certain and that I thought I had managed to reconcile within myself have been thrown into the air and shattered into 1000 pieces.
I've written about Dad before, about how he has been my rock, carer, confidant. How he's stuck with me through the stupid, reckless, heartbreaking. His unconditional love and his calm and loving reading of bedtime stories, making up animal noises for when he wiped my ears with a cloth at my bathtime. This giant of a man who gave so much to so many people, not least his family and clients at work. A survivor of a ruptured Aortic Aneurysm 40miles from hospital in the middle of the night. They called him Lazarus and a Walking Miracle. Well they might, the 13th anniversary of his surgery passed last week.
I just call him Dad.
On Wednesday I learned that my wonderful, loving, gentle Dad is going through a horrible and rapid onset of Dementia.
He has fixed me up over the years, washed grazed knees and done so much more. I've done similar for him a few times. The hardest part now is knowing that there's no way I can do anything to fix this. He is changing right before my eyes, it's as if someone has given him a personality and memory transplant.
I'm not prepared for this. I've always known that as a very late baby I would lose Dad and I've prepared myself for that. But I've never factored in this, I thought death would take him before his mind started wearing out. I wish I had been right.
Read more!
Sunday, 18 July 2010
Stumble & Fall
Things are slowly but surely getting worse. They can't be that bad yet though because I can see it happening. I am a great advocate of keeping an eye on my signs/symptoms and making sure I at least try to get something done before things go totally wrong. This is only true of my mental health, I'm not so quick about physical health. I admit to being somewhat bored of all the medical things going on in my life, I really hate getting this much attention focused on me, sometimes I wish that I could just be left alone. But, if I am seen to be 'refusing treatment' then I know very well that I would be risking getting put under a CTO...definitely don't want that.
What irks me slightly about treatment refusal is that I am under the impression that if I didn't have any mental illness I would probably be allowed to put my foot down and tell my medical squad not to do anymore.
The difference between physical and mental health for me is all about other people. I wouldn't be in any danger of potentially hurting another person or acting in an inappropriate way if I said that I don't want any more interventions. However, if I turned around and refused all of my mental med's there *could* be a risk of my behaving in a dangerous or inappropriate manner. I wouldn't want to cause hurt or pain (emotional or physical) to anybody other than myself.
It can be a tricky balance of doing what's right for everyone else and doing what's right for me. At the moment doing right by others is the important thing.
Read more!
What irks me slightly about treatment refusal is that I am under the impression that if I didn't have any mental illness I would probably be allowed to put my foot down and tell my medical squad not to do anymore.
The difference between physical and mental health for me is all about other people. I wouldn't be in any danger of potentially hurting another person or acting in an inappropriate way if I said that I don't want any more interventions. However, if I turned around and refused all of my mental med's there *could* be a risk of my behaving in a dangerous or inappropriate manner. I wouldn't want to cause hurt or pain (emotional or physical) to anybody other than myself.
It can be a tricky balance of doing what's right for everyone else and doing what's right for me. At the moment doing right by others is the important thing.
Read more!
Friday, 16 July 2010
Oh Well
So, I had a little jaunt to hospital on Wednesday. I don't remember a thing about it and I've lost yesterday too. No bad thing, just a little weird. It's not like memory loss from alcohol or illicit substances. Anyway, I've got a set of results in my grubby paw so at least I know what's going on.
To be perfectly honest I don't care very much about what's wrong. More medication, another test to be done (this time under GA) and then surgery to follow. I don't have a treatment plan for the other issue yet but I'm guessing that'll be a second surgery for the same problem as before.
It's almost funny. I probably need two separate operations and I know fine well that it'll be two different appointments and admissions for those. I don't totally get why the NHS can't have some system by which the two operations are done at the same time and the investigation I need under the GA in that same slot. Surely, that'd save money, time and effort?
Got to confess, I feel more than slightly guilty about all of the resources I'm taking from the NHS. Factor in all the drugs, tests, appointments, scans and various other bits and pieces and they must be spending an absolute fortune on me. Who am I to take all of that and not give anything back? There are so many people on waiting lists and yet here I am taking up all that time and money. I'm not even allowed to donate blood because the Blood Transfusion Service keep saying no.
I get totally confused by the blood grouping system so I can't even talk about any of it. My biology isn't too crash hot when it comes to remembering letters and what they mean. Strange because I memorised the Periodic Table with ease and can still remember most of it now.
Ok, I'm starting to meander so will sign off just now.
Read more!
To be perfectly honest I don't care very much about what's wrong. More medication, another test to be done (this time under GA) and then surgery to follow. I don't have a treatment plan for the other issue yet but I'm guessing that'll be a second surgery for the same problem as before.
It's almost funny. I probably need two separate operations and I know fine well that it'll be two different appointments and admissions for those. I don't totally get why the NHS can't have some system by which the two operations are done at the same time and the investigation I need under the GA in that same slot. Surely, that'd save money, time and effort?
Got to confess, I feel more than slightly guilty about all of the resources I'm taking from the NHS. Factor in all the drugs, tests, appointments, scans and various other bits and pieces and they must be spending an absolute fortune on me. Who am I to take all of that and not give anything back? There are so many people on waiting lists and yet here I am taking up all that time and money. I'm not even allowed to donate blood because the Blood Transfusion Service keep saying no.
I get totally confused by the blood grouping system so I can't even talk about any of it. My biology isn't too crash hot when it comes to remembering letters and what they mean. Strange because I memorised the Periodic Table with ease and can still remember most of it now.
Ok, I'm starting to meander so will sign off just now.
Read more!
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