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Continuation [Nov. 24th, 2014|12:00 am]
Lucinda
I couldn't finish the last entry.
Sometime I find it better not to dwell on things too much.

After Martha came and went, life got... more crazy.   Almost like she was trying to detract from the pain we were feeling, my Grandmother became seriously ill with a condition called fibrocytic lung disease.  Basically the lungs lose their elasticity and turn to fibrous, tough tissue which makes it hard to breathe.  However, being in her mid-eighties, the lack of oxygen manifested itself as a dementia.  She became increasingly belligerent and difficult to deal with.    By the time the Dr's has decided what was wrong, there was nothing that could be done.

We cared for her at home, and would receive phonecalls to say that she'd wandered into the street, or been violent to a passing neighbour, or the visiting carer couldn't settle her.   My strong, independent, life loving battle axe of a Grandmother became a shell of herself.

In early July 2013 I was called by the wake up carer.  Gran was bleeding from the nose and it couldn't be stopped.   I practically flew up there and got there before the paramedics.    I'm not squeamish, but there was more blood than I have ever seen.
She was fading in and out of consciousness, so I just propped her up, held a bowl under her chin, pinched her nose and hoped for the best.
The best was the worst.
She passed away.  The strongest woman I will have ever had the pleasure of knowing in this life, and with the exception of my Mom, the woman who made the biggest impact on my adult life,  is gone.    She's been gone a while now, and I miss her with every fibre of my being.   I miss her obstinance, her arrogance, and the all consuming love that she had for us all.     I miss the bad cooking, and the fights.  

Life seems so unfairly grown up when you have no grandparents left in this world.
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Martha [Oct. 3rd, 2014|11:39 pm]
Lucinda
We don't know how long we're here for.    It's so important to remember that, and to cherish every moment that we have in this world.

It's been a long time since I wrote a journal entry.. it's been a long time since I had a free moment when I could put enough words together to make sense.
Three years is a long time to sum up in one short diary entry.

During three years we have loved, we have lost, and we have grown as a family.   Time has continued to tick by.

On 25th January 2013, Martha came into our world.  
We knew from about the mid-way point that she was special.    As a diabetic, any pregnancy carries the risk of developmental problems, and at 14 weeks we became aware of possible issues.   At 16 weeks I had an amniocentisis, and at 19 weeks it was confirmed that Martha had several development issues.   We were offered a termination, but how do you terminate a baby that you have carried for 5 months?  There wasn't a question about whether we wanted to continue with the pregnancy.   We had to continue.

Things became more serious at the 28th week.   Grown scans showed that she was growing too quickly, her heart was enlarged, and she had a neural tube defect that was causing compression of her spinal cord, and also excess fluid on her brain.   We already knew that she had Down's Syndrome.    The news just kept getting worse with each appointment.

Steve and I had done our research and we knew that the odds were stacking against this being a happy outcome, and although we hoped dearly that we were wrong, we knew we wouldn't have Martha forever.   Two days before Christmas, this was pretty much confirmed to us by the specialist.  

We had a quiet family christmas with the children.   We waited until after the big day to explain to the younger ones that the baby that Mommy was carrying was very sick.  We were honest and open, and the older children had already been aware of the sadness surrounding this pregnancy.  Willow cried.  She wanted a sister to mother.  She didn't understand that babies could be sick and it was difficult for her to comprehend.
My older girls were my rocks.   There's a saying about daughter's becoming best friends as they grow.  This is true of my twins.  They are 10 years old, with wisdom and sensitivity way beyond their years.   Anyway, I digress..

We prepared for her arrival very differently from the arrival of any other baby.   It was no longer about the natural birth, or the earth mother experience.  It was about birthing a very special baby in such a way that wouldn't cause her any pain or distress.
I had an epidural and pethidine.

She didn't cry, and she was with us for almost 5 hours before she passed in our arms in the same peaceful way that she came into the world.

Sadness can be consuming.  It can eat you up inside, and it did for a long time.   But it didn't destroy us.  She didn't destroy us.
Neither of us will forget those special hours we spent with her.    
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(no subject) [Aug. 28th, 2011|06:44 pm]
Lucinda
The world has officially gone insane. 
The country which I have chosen to call my home for the last 26 years has suddenly become a dynamically unstable place to be.   This is a weighty statement coming from a girl who grew up in Northern Ireland at the height of the Troubles.  

The rioting and looting scares me for one reason, and one reason only.  There is no real political intention behind it.    This summer, our teenage population simply got bored and decided to wreak havoc on a national scale.   What does this say about the nation as a whole? 
Our kids have no respect for themselves, no respect for authority, and no fear of consequences.    They are selfish must-haves who believe that they are entitled to take from this world without giving back. 
I've watched socialists talk on the television, attempting to justify the looting by stating that the youth are living in abject poverty with no prospects and no ability to be upwardly mobile.   It is,frankly, horseshit.     Go to Rwanda, Somalia, Ethiopia, and you will see abject poverty.  You will see people dying of thirst and starvation because they have nothing.  

No one in this country lives in true poverty.   They may live on the breadline, but as long as the government keep handing out £65 per week to each unemployed individual, and as long as we have a temperate climate, clean water on tap, supermarkets selling cheap and readily obtainable foods; we will NEVER know what poverty is.    
People living in poverty would not steal designer footwear, electrical goods, hair weaves, and whatever else.   People living in poverty would steal food, water.  
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Open Letter [May. 22nd, 2011|11:40 am]
Lucinda

I know that you've come back here, and I know that the anonymous comments were left by you.   You left your calling card in the form of your IP address, and it didn't take long to trace which part of the country the comments were coming from.    
Seeing as you were the only person in my offline life to know about this old journal, then it doesn't take a lot for me to put two and two together.  
Sweetheart, you are 32 now.  Don't you think you should have grown out of this?     

I'm unsure of what your agenda is, but it's got to stop.    This is the only warning I'll give you.  

This journal is my private headspace, and I'll not have it invaded and vandalised.    

If you have to get in touch then you already know the agreed way that you have to do that.   Not anonymously.



 

 


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(no subject) [Apr. 26th, 2011|02:47 pm]
Lucinda
Just when I think I'm doing good, something happens and I find myself back where I began.  

I've hated this easter time.  Hated, hated, hated it.   I've gone through the motions with the kids, but really all I've wanted to do is curl up in a ball and sleep the fuck through it.  I haven't because that would have been unfair to my family, but hell, had I been on my own I would have stayed in bed for 4 days straight.

A lot of what I'm feeling is related to my hormones.   The older I get, the worse my PMT gets.   Couple that with some stinky depression, and you get an emo 31 year old woman.

Can't praise my ever tolerant hubby enough.    Once more, he's my rock, he's putting up with my bad behaviour, and he's being a sweetie.
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Life Hiatus [Apr. 11th, 2011|06:38 pm]
Lucinda
My life went on a hiatus not long after Di died.     Christmas was difficult, but probably not as hard as I thought it would be.    The worst time came afterwards, during the dull, cold, and incredibly snowy January we had this year. 
Through most of it, I've felt like I'm living in an alternate reality, and in a minute or two I'll find myself back in the life where my big sister and going back many more years, my big brother, are still alive.
To say that we never truly expect to see our own siblings pass away is an understatement.  Sometimes I find it hard to believe that I'm soon to be 32 and where I was once one of five, I'm now one of three.    I know that this is life in it's rawest form, but I still hate "God's plan" nontheless.

My parents have coped better than expected.   My Father is a very philosophical man, and has dealt with his grief and pain through working his large vegetable garden.
My Mother has been somewhat lost, and if anything, this has brought us closer together.   We are best friends now.

I thank the Gods that I have been blessed with the most caring, wonderful husband  who has kept the family and household running when I couldn't face it.   He has never moaned, whined, griped, or any of the above.  He's been my rock.
I will admit that there were moments where he had to be Mother and Father to the kids, because my brain was located somewhere on another planet.    But he brought me through it, and I'm stronger for it.

Right now, and for the last 2 months, I've found the way out of the dark tunnel of mourning that I was locked in.    It's been a slow process, and whilst I'm sure that counselling could have helped,  I knew in my heart that only I could get over the loss in my own way. 
I am good, and I plan to stay this way.

Steve and I are trying for another baby.  Our last one.  It's been much talked of since Willow was born two years ago, but we had a miscarriage which threw the curve a bit. However, with Teague at school, with Willow walking and talking, the time is right.   Also, the agreement is that I get my tubes tied (although I'm pushing for hysterectomy as once my child-bearing is done, my womb will serve me no purpose other than the menstrual grief it gives me!).
Ironically, whilst trying is fun, we do seem to be having some fertility issues.   We have agreed to give it until I'm 34 and then we give up.   I learned that mother's over 34 are referred to as "Older Mothers" in the medical circles.   I don't want to risk my health.
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Sad News [Dec. 31st, 2010|08:04 am]
Lucinda
On 17th November 2010 just after midday, my brave, wonderful sister lost her fight with cancer.

The weeks from diagnosis to that day were hard on us all.   Her situation went from being a mildly hopeful chance of being pushed into remission with chemotherapy,  to being hopeless.   
She had a massive infection immediately after being diagnosed, and this delayed the start of chemotherapy.    She came out of hospital on a Thursday  with a view to starting chemo on the following Monday.   But on the Friday night my oldest Nephew called my parents because she had woken up from a nap and couldn't speak.  
She was rushed to hospital where we were all told that she'd had a stroke.   The hospital care was appalling, and we had to fight fight fight every day to get even a basic standard of care for her.   Soon they told us that the stroke had been catastrophic.   It had wiped out a lot of brain.
However, over the course of a few days she began to regain consciousness and was able to have meaningful conversations.   What the stroke did take were the memories of the cancer diagnosis.   She had no concept of self, of her own person, of the present, or of why she was in hospital... so we did not tell her.   The hospital staff didn't like our decision, despite it being unanimous amongst my parents, my ex-brother-in-law, my brother and other sister, and the neices and nephews who were old enough to understand the situation.    We were told that they would, at some point, organise a meeting with Dianne to re-explain her diagnosis.    
(I've never been allowed to say my sister's name online, so always used the initial "H" for her middle name Helen... her name was Dianne).
I got quite shirty, and told the consultant in charge that he'd find himself and his staff quickly embroiled in a lawsuit if they arranged that meeting.    That threat seemed to stop them.

One day, about a week after the stroke, I was at the hospital when the Nurses were doing their medication rounds, and I was surprised that they didn't give Dianne any tablets.   After all, my sister was Diabetic, Epileptic, had high blood pressure, and had a thyroid disorder.   On an ordinary day she would take 12 pills in the morning and 8 pills in the evening for her conditions.     So I asked the nurse where her medications were. The answer was:  "Oh we are giving them to her intravenously as she has no swallow reflex".  I looked for the cannula, an IV bag, anything... and there was no sign of her having IV medications.   I said this to the nurse, and she said that they'd get a bag up at some time.    
I realised that for 6 days my darling sister had been neglected.   She was nil by mouth, but had not been given any IV fluids as there clearly was a cannula sited.    Unhappy with this, Jim and I went to the Charge Nurse and demanded answers.  They had none to give, but promised a cannula would be sited before the day was out.

The next day we went to visit and found Dianne was in a deep sleep.   A nurse breezed in to the room, told us that Dianne had been in a coma for 24 hours and there was nothing they could do.  I noticed there was still no IV up, so I asked this nurse if she knew that Dianne was diabetic and epileptic, and hadn't had any fluids for a week.   She ranted back at me about how we should be grateful for the care she is getting, blah blah blah.     My father and brother called the woman who is in charge of the entire hospital, and she went straight to the ward.
Within hours Di had been given fluids, medication and was conscious again.

From there we had rounds and rounds of arguments with the staff of the Acute Stroke Unit, until we demanded they move her to another unit.   Eventually that happened, and she was moved to a much better unit with her own room.   At this point all hope was gone when the doctors revealed a blunder:   the diagnosis had always been terminal, there had been some confusion over the results and the cancer had spread to her liver and bowel.
Again we decided not to tell Di.  Again we were told that they had to.  Again I threatened legal action. 

The end came quickly.   On Monday 15th I went to visit with my Mom, and Di was asleep.  But her breathing was odd.  Off.  Not right.
I knew it was indicative of "the end".  But I also knew that Mom wasn't ready to accept that, so I went along with the pretence that Di was just asleep.
The next morning we were all called to the hospital as she had taken a turn for the worse.   We all sat in that room waiting, reminiscing. 
Dianne opened her eyes, but I'll never forget the total lack of life or soul in them.   It was merely reflex, there was nothing left of my sister.

She lived through Tuesday, but on Wednesday she held on until everyone except me and my Dad had gone to get coffee and food... then she took her last breath.   No dramatics, no gasps.  She just never breathed again.   And that was that.


There's not much else to say.   The funeral was beautiful.  There were so many people that they filled the chapel, and the service had to be relayed outside. 
I still half expect her to call, and I still find myself on the verge of picking up the phone to call her before I realise that we dont have phone service where she is.
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(no subject) [Oct. 14th, 2010|07:04 pm]
Lucinda
The results are back, and it is confirmed.
My sister has small cell lung cancer.
It's believed to be fairly early stage, given that she had a chest x-ray in june that did not show the tumour.   The good news is that it has not spread anywhere else.   That is the only good news.

The bad news comes in abundance. 
Small Cell lung cancer is the most virulent form of lung cancer, with the poorest prognosis.  It has a less than 5% chance of survival over 5 years.
The location of her tumour means that it is inoperable, therefore surgery is ruled out.  Chemotherapy is the only option, along with radiotherapy, and the purpose of the treatment is not to cure the cancer or put her into remission, but simply to make her comfortable and as the medical professionals put it "prolong her life".

I still have hope, but secretly, it's difficult to maintain a positive outlook when everything seems so bleak.

I no longer sleep well.  How can I? 
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(no subject) [Oct. 5th, 2010|07:40 pm]
Lucinda

I realise that I didn't finish my last entry.  I meant to, but life got hideous.
 

My sister has an inoperable tumour in her chest.   We don't know too much about it at the moment, and she's doing okay within herself, but she's living with the diagnosis hanging over her like a dark cloud.
I can't even remember when it happened - maybe three weeks ago? Maybe not that long?   She was rushed into hospital with a suspected myocardial infarction (heart attack).   When they investigated, she had something like 3 litres of fluid accumulated in the pericardium (sack that surrounds the heart).   They put a drain in, and drained it off.    They said that if it stopped draining within 3 days, then it had come as a result of an infection, possibly MRSA.
It did stop draining within the 3 days, and things were looking up.  But the consultant was concerned that she wasn't getting better as fast as she should be.   At 43, she should be bouncing back fast, and she didn't.
So they investigated other possibilities, and sent her for a body scan.     Naturally, none of us were expecting the news - least of all her.
She has a tumour that so far they are classing as "lung cancer", but it's located on the exterior of her lung.   It is pressing against her heart and wrapped somehow around her oesophagus.     So yeah, not good.

The only silver lining at the moment is that the worst case scenario was that the fluid around her heart was malignant due to the cancer spreading, and thankfully that has come back as benign.  
The consultant is from Sudan, and I don't really know whether they do things differently in his culture, but he hasn't been the most tactful.  He told her about the cancer when she was on her own in hospital, he didn't wait until someone got there to be with her - he just came out with it.    But, he did this before any diagnostics have come back - so even though it's unlikely that it's anything other than cancer, he didn't wait to see.
When she asked about treatments, he said that the hospital board would need to meet to discuss whether treatment was appropriate.  Yet, another Doctor said that when the diagnotic tests prove positive that it is cancer, then they would do both chemo and radiotherapy.   He was honest about the prognosis - if it is cancer (and I keep using the word "if" because I'm all about hope), then the treatment would be to prolong life and not to get rid of the tumour. 

The Sudanese Dr keeps saying things like "If you get out of hospital...",  "if we send you home...".     If?   IF??
There's nothing like encouragement and hope from the medical profession, is there? 

My biggest fear, and this is something that I'm writing here but would never dream to say in real life, is that if this does turn out to be cancer - then my sister is generally a negative person.   The glass is always half empty, if you get what I mean.    I'm concerned that she won't fight it.
We've had an argument about this, and whilst she probably thinks that I'm a heartless bitch,  SOMEONE had to say something.    I told her that she HAD to look for hope.   Of course, she took this as me belittling her possible diagnosis, and she has been rather offish since.    This I can tolerate, as long as I know that she's not going to wallow and prophesise her own death.

I've been a bitch to my Mom too, but she took it on the chin and took my point.   I was there when Mom was told, and her reaction was "I can't go through this again".   I told her not to ever think that way in front of me, because we're not at a point where we've lost H.    We're not losing ourselves in our own self pity - I will not allow it.
There are six children who need stability and support through this, and the worst thing that could happen is that they see the adults in the family lose focus.    We all have to step up, it's our responsibility.   



 


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Wealth [Sep. 21st, 2010|06:40 pm]
Lucinda
The last year has seen our belts tightened to new extremes.  But, out of every dark cloud comes a silver lining.      The self-sufficiency idea in itself, is good.  In practical terms, you have to live in a climate somewhat more predictable than England.   
Out of this "social experiment" I have learned that I can and will grow a wonderful array of vegetables and salads.   However, not the variety needed to keep my families pallates amused for long. 
So now we grow the things we really really love, we make bread, cakes, and anything we can.   Then we buy the staple foods that we simply cannot produce ourselves.
Energy-consumption wise,  we're fair to middling.   If you live in a 17th Century cottage, you learn that it gets cold.  We don't have the luxury of cavity walls or double glazing, and as the colder days are drawing close, we will be once again forced to utilise our growing log pile.
Luckily, due to the nature of hubby's job, we get our firewood for free.... and now they say that burning sustainable wood is far better for the environment than any other method of heating.   My, how things change! 
We do have central heating, but Steve is rather frugal where that is concerned!   Slippers and thermals are the way forward! 

Generally, we manage well... but we don't do it as cheaply as we could.  However, do I want my children growing up without a little bit of luxury here and there?   I don't think I do.      I'm not saying that they get what they want all of the time, but there has to be a little parental flexibility exercised from time to time.  

I now work.  I have a little part time job at a charity which helps the elderly with their social and welfare needs.  It's very rewarding, and the job seemed to find me at a time when we really needed that little bit of extra income.  
It also gives me a chance to get out of "Mommy" Head and get back to being Luci.    Reclaiming myself has been important to me.    I didn't realise I had lost myself in the fug of child-rearing, until I got those 18 hours a week where there are no arguments over who has the wii controller, who is watching what on the TV, or general toddler screaming!   Those 18 hours are precious!
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