Return of the Bouche

A couple of months ago, I realised that I hadn’t blogged for a while and I thought to myself that I should get back to it and write a post. But, if I am honest I just couldn’t be bothered. It wasn’t that I had fell out of love with the Bouche blog or that I didn’t want to write (I have had plenty to write about!) I can’t even say I haven’t had time as I had six and a half weeks off in the summer after having carpal tunnel surgery!
I can’t really pinpoint what has made me not want to blog. It is probably been an amalgamation of things. I know feel like I want to blog again and hopefully this time, I won’t lose my momentum.

My last post told of my pending motor test for HD and touched very slightly on how I was feeling about it. I was very nervous as I had convinced myself that I was showing signs of HD. I have always had a firm plan regarding any kind of testing for Huntington’s disease.
I am very anti having the genetic testing for Huntington’s disease done. I have always said that if I was concerned that I was showing symptoms that I would have the motor function test done first. If this showed that I was showing some symptoms, then I would have the full genetic test done.
So I had the motor test done and I am not showing any symptoms of HD, which means I won’t be taking the gene test in the foreseeable future. Which came as huge relief. It also gave us the green light to start trying for a baby. Our baby plans came to a halt last year as Mr Bouche’s mum was diagnosed with lung cancer in February 2012 and passed away in November 2012. But, we decided to start trying in July this year (I have another post on this, following shortly!)

I have put all my personal fears to rest for now. However, Daddy Bouche has been going downhill slowly in 2013. Nothing major, but I just know in his eyes he has had enough. He has had some chest infections and his eating has become a little erratic at times where he does not want his food when being fed. He coughs quite a lot when being fed and his feeding is becoming a concern as he cannot be fed safely anymore.
After a meeting with his gp, speech therapist and staff at his home, it has been decided between us that he will have a peg fitted to feed him directly into his stomach. I have really battled with this in my head as his eating was the last one pleasure he had (albeit eating puréed food). I feel like I am forcing something on him that he wouldn’t want but I also cannot let him be fed dangerously or not at all. It has been really hard and we are just waiting on the appointment for the gastroentologist.

My younger brother M has also decided to have the HD test a few weeks ago and he gets his result next week. I am terrified for him. There is a part of me that thinks he has HD and I have done for a long while but I still hope that he is HD free. My wonderful uncle (Daddy Bouche’s brother) had the test earlier in the year and was negative which was amazing news. I just hope M has the same result!

More to follow……

Bouche x x x

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Something on my mind

Blogging has been the last thing on my mind recently.

Regular visitors to Bouche in the City will know that my father has Huntington’s disease and that I have a 50% chance of inheriting HD. I have never been tested and my mantra has always been that I will not be tested until I became aware of possible symptoms of the disease.

I guess for a long time I was not concerned and I guess deep down I thought that I didn’t have HD. I have a good memory, I wasn’t showing any motor symptoms and I wasn’t showing any emotional symptoms.

That was until last summer. I had some work done on my teeth and I had noticed that I occasionally bit down on my crown, which caused me to pull a face. It soon passed after a couple of weeks, or so I thought. Then after several months, my mother and husband noticed that I did it quite frequently. I am not aware that I do it and if I really concentrate then I can stop it.

During the same time, I also noticed that I would get involuntary movements in my feet and would get pains in my legs, at night whilst asleep.
I didn’t mention it to anyone, not a soul. I desperately wanted to tell my husband, but his mother was battling cancer and was very poorly. We needed to focus on her and making her comfortable through the cancer treatment.

My mother in law passed away in November. It was a difficult time (still is to be honest) I focused on being there for my husband and put my concerns back in the box in my head. I started to feel so angry about my mother in law’s death and would often find it hard to keep my emotions in check.
After Christmas, I decided I had to book an appointment with the genetic counsellor for the new year. It was after I had arranged it, I told Mr Bouche. He was obviously upset but understood why I needed to see her.

I went to the appointment and after speaking to the counsellor, I have decided to see a geneticist to have a motor test done. They will be able to observe me and conclude whether I am showing signs of HD. Depending on the results of that test, I will then decide whether to have the full gene test or not.

There is so much to think about and I am terrified to be honest. I am trying to be positive but some days that can be really hard. I will probably have a few weeks wait before I see the geneticist and is going to feel like the longest wait ever. But, what will be, will be.

A nervous Bouche

X X X

Goodbye 2012, hello 2013

So here we are, in 2013. 2012 brought much sadness and I am glad to see the back of it, if I am honest. 2012 brought a fantastic new job for me and greatness, work wise for Mr Bouche. Little J passed his 11 plus with flying colours and 2012 had the potential of being a great year. However, Mr Bouche’s mum was diagnosed with lung cancer in February and sadly lost her fight in November.
It has been a difficult 12 months and some days are better than others. We are all grieving and Mr Bouche is finding it particularly tough. It is hard to start a new year on a positive note with the sadness that surrounds us. But, we are battling on.

I did make some resolutions last year which you can read here https://boucheinthecity.wordpress.com/2012/01/07/new-years-resolutions-goals/

Did I stick to any of them? Well, one maybe. I found my dream job and work wise I am so happy. I didn’t do great on the blog front. I did not manage to do much about my body but I did become less pessimistic and I think I did ok at being a friend.

So what resolutions do I have 2013? Well I have decided on quite a few and I do aim to stick to them!

I am going to wear more sequins – When purchasing an outfit for a night out in 2013, I will be seeking out sequins and bling. I am 34 this year and realise that I may have to start being cautious when choosing outfits soon, as to not look like mutton dressed as lamb. So while I can, I am going to rock the bling and sequins!

I am going to try and eat less and exercise more – I am not going to go on a diet this year but I am going to join the gym and start doing the spinning classes I love again. When I was at my happiest (figure wise) I ate sensibly, ate out, had the odd treat and did three spinning classes a week. So I am adopting this mantra once again and hopefully I will start loving my figure once again.

I am going to wear less makeup – I love looking glam but looking back on some photos from 2012, in some instances I look more drag than fab. I am toning it down for my daytime look, going easier on the eyebrow pencil and going for a more smokey eye / neutral lip look for nights out.

I am going to let things go – I am going to stop worrying about things I cannot control. Sadly in 2012, one of my friendships deteriorated. One of my oldest and closest friends and I drifted apart. I have tried to keep things going but it has not been reciprocated. I am not sure if I could have done more from her point of view but I have tried to keep the flow of communication going but it hasn’t. Obviously, I am sad about this but I guess this is what happens in life. People drift apart and people can be in different places. I need to stop worrying and pondering on this situation and maybe in time we will reconnect but for now, I am going to let things go.

I am going to listen more – I am a bit of a whirlwind at times. I can be excitable and when friends are talking to me, I can on occasion be known to butt in and talk about myself. Friends have told me things and I have been so airy fairy that I haven’t taken things in. I know this must be frustrating so in 2013, I am making a conscious effort to listen.

I am going to stop saving things for best – If 2012 taught me anything, it is that life is too short. I am going to light my posh candles, use my expensive bath oil and drink that expensive bottle of wine.

I am going to try and dress nicer than I think I should – On those days when I think I’ll just throw an outfit together, I am going to stop myself and think about dressing a touch nicer. I am going to think about my outfits for work the night before and accessorise more. When just going to the pub in the evening I am going to dress up more, than I have in the past, and when going out for a special occasion I am going to try and not wear my faithful skinny jeans and pull out all the stops.

I have high hopes for 2013. I am hoping for a happy home life, no more sadness, successful work life and fingers crossed, maybe our plans for a baby may come to fruition.

Here’s to 2013.

Bouche x x x

Bouche’s favourite Christmas song

Those of you that follow me on twitter or know me personally will know that I am not a massive fan of Christmas. Christmas has never been the same for me since my Dad reached the latter stages of HD. I miss curling up on the sofa with Daddy Bouche and watching a Christmas film whilst munching on a chocolate orange or some matchmakers.
Mr Bouche is also a bit of a Bah humbug and this year especially, we are really not feeling the Christmas vibe after losing Mr Bouche’s mum last month.
There are some aspects of Christmas that I do enjoy. I love buying gifts for my nearest and dearest. I love going to church on Christmas Eve for christingle, I love a mulled wine and a slice of stollen and I love a Christmas song.

My favourite Christmas song of all time is Fairytale of New York by The Pogues and Kirsty MacColl. I love the foot stamping chorus and I will at some point over the festive season, be found belting this song out with some feet stamping!

What’s your favourite Christmas song?

Bouche x x x

Bouche loves bond

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Unless you have been hiding in a cave somewhere you will have heard that the newest bond film is due for release on the 23rd of this month. Having seen the trailer for skyfall, it promises to be all that a bond film should be. A handsome James Bond (courtesy of a delicious Daniel Craig), action, adventure and some beautiful automobiles.

I am particularly excited about skyfall. Is it because it has the gorgeous Daniel Craig in? No. Is is because it was filmed in lots of my favourite London locations? No. It is because it will feature the Aston Martin DB5.

I am no petrol head. But, I love love love a classic Aston. Why you may ask? It is because Daddy Bouche had a few in his time. My dad belonged to the Aston Martin owners club and had a DB5,DB6 and a DB7. I grew up helping daddy wash the Astons on a sunday morning and watching Bond (secretly I think my Dad wanted to be Bond).

I have watched all the bond films. I have watched the older Bond films more than once. Whenever 007 graced our screens Daddy Bouche would be watching and thus the rest of the family would have to watch. In those days we only had a TV in the lounge and a black and white portable in the kitchen.
I have never asked Daddy Bouche who his favourite bond is, but I would guess it is Roger Moore as we watched more of Roger than Sean, Timothy or George. I remember being about 9 and having a bit of a crush on Sir Roger. He is my favourite Bond. He had a certain class that none of the others had. My favourite bond theme tune is Nobody does it better by Carly Simon from The spy who loved me, starring Moore. Carly Simon was one of my Dad’s favourite artists and he used to sing this to me as a small child. So obviously the spy who loved me is my favourite Bond film. When I see the parachute on the opening sequence it brings me right back to being 5/6 years old and watching it with my Dad. He would talk me through all the cars. It is the bond movie with the lotus esprit which goes underwater but it also has the ultra scary villain Jaws! (I used to hide behind the sofa when he came on!) Oddly enough The spy who loved me didn’t feature an Aston Martin, but nether the less I rate it as my top bond film.
Goldfinger is the best Bond film featuring an Aston Martin and Daddy Bouche had a DB5 which he restored himself. I do love that film but I just prefer Sir Roger as Bond. He was just that little bit sexier than Connery in my eyes and had a touch more class and boy did he know how to handle a speedboat.

That said Daddy Bouche would not be amused if I didn’t post some pictures of his Bond inspired cars. So I will do so just to keep him happy here are some pictures, even if my favourite Bond never drove them.

Bouche x x x

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Happy birthday Daddy Bouche

Today is Daddy Bouche’s birthday. He is the grand old age of 57. Mr Bouche and I wanted to do something a bit different for Daddy Bouche’s birthday this year. He has suffered a few infections these past months and for a time, wasn’t his usual self. The infections have passed and during the past month or so he has been much like his usual self. Obviously, some days when we / I visit he is having an off day but the past few visits he has been vocal (not in the word sense but in the noise sense) and has laughed a lot. I do like to joke and tease Daddy Bouche so it is great when I get a response of some kind and for some reason Daddy Bouche finds me funny!

I really wanted to take Dad out for the day. It has been 6 years since I last took him out on my own (when he could still walk) and I remember having such a fun day out. It is impossible for Mr Bouche and I to take him out on our own as we cannot fit his wheelchair in our car. It also concerns me that I may not be able to do what a carer can do for him. I am terrified of feeding him, in case he chokes and the thought of having to change him (he is incontinent) leaves me cold. Dad was a proud man and to do that would horrify both him and I.

So after a conversation with one of mine and his favourite carers, she suggested that we went out in the home’s minibus and went somewhere that had memories for both Dad and I.

So yesterday we went to whitstable. I grew up in the south of Kent and we visited Whitstable when I was a child, frequently. Dad had a speedboat and we used to waterski from Whitstable and from the surrounding coastline.

I have been off work this week and the weather has been pretty pants so even up until yesterday morning we weren’t sure if the weather would hold up for us. It seems we had Mother Nature on our side as it was a glorious day.

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We wandered past the harbour and saw the fishing boats, took in the sights of the seafood market, browsed the wonderful shops in town and admired all the beach huts and houses.
Dad normally has a couple of naps during the day but he stayed awake the entire time and smiled all day (unless he is having his picture taken as below!)
We drove a short distance and went to a wheelchair friendly place for lunch.

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We had such a wonderful day. It was the happiest I have seen Daddy Bouche since our wedding, two years ago. I am a little bit cross with myself that I have not done this sooner as we both enjoyed it so much. One thing is for sure, we will be going out on more trips in the future.

Happy birthday Daddy.

Lots of love

Your loving daughter

Bouche

x x x

A right to die

If you are someone who doesn’t read newspapers, watch the news or actively participates in social networking then you may not of heard of the case of Tony Nicklinson. For those that do, you will probably be familiar with Tony’s story.

Tony Nicklinson is 58 and suffered a stroke in 2005 and has been suffering with locked in syndrome ever since. Tony has been paralysed ever since and is unable to move anything apart from his eyes and head. Tony has been fighting the British judicial system to allow a doctor to end his life. Tony is deeply unhappy and does not want to carry on with the life, he now lives. He has no motor functions has very little dignity left and wants to end his life.

Last week in the high court, Tony lost his case to change the law on assisted dying. Even though Tony cannot speak, when he heard the news it was obvious how he felt. Devastated.

Although, Tony vowed to carry on fighting. He obviously felt that the fight could not be won and started refusing food. After refusing food after the judgement, Tony caught pneumonia and died at his home on Tuesday.

Tony’s case probably has touched every person who has read about it. For me, it has touched me so much more. My dad has Huntington’s disease and is very much like Tony. He knows what is going on around him and although his memory isn’t very good, I can talk about things with him and he understand and reacts. Like when Mr Bouche and I told him we were getting married, he cried. He cried during our wedding and when I joke around with him he laughs. He cannot speak, has no motor functions and has no real quality of life. I know deep down he would not have wanted this existence. He was such a proud man and to be left the way he is, is extremely sad.

I have 50% chance of having Huntington’s disease too. Mr Bouche and I are doing the necessary to have a baby free of HD, as for my fate we will have to just wait and see. I do not want to be tested. I don’t want to know my destiny. I worry already. I see things I do and wonder if it is HD. There is a big part of me that thinks I have it. If I had to guess as to whether I have it, I would say I am 70% sure that I have HD.

If I do have HD then I know my fate. I will eventually be like my Dad and other HD sufferers I have seen. I will be like Tony Nicklinson. The thought makes me so sad and I am terrified.

I am loud, opinionated, vivacious, vocal and spirited. The thought of not being able to communicate and not being able to sit, stand, walk and hug is not something I want to contemplate.

Mr Bouche and I have spoke about my fears many times. He knows, that I do not want to be like my Dad or Nan was. I pray the law changes, so if I do develop HD, I can decide I want no more and die before the disease takes me to an undignified place. Where my family are scared to see me, when I cannot hug my children or grandchildren, when I cannot show Mr Bouche that I love him and when I am just a feint shadow of myself.

The sadness that Tony Nicklinson showed when he lost his battle against the courts speaks volumes. How tragic that he had to starve himself to death in order to die with some kind of dignity and peace.

I don’t expect everyone to agree with my views but surely a human being should be able to end their pain and misery if they should wish.

R.I.P Tony. I hope you have found peace now.

Bouche x x x

HD awareness week 2012

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This week is Huntington’s disease awareness week. As someone who has been hugely effected by this horrid disease, I feel it is only right that I try and spread a little awareness through my blog. For those of you who are not aware, my father has Huntington’s disease, my Nanny had huntington’s disease before she passed away and I have a 50:50 chance of inheriting the disease.

Huntington’s disease, which is often called HD, is an hereditary disorder of the central nervous system. It used to be known as Huntington’s Chorea or HC. Huntington’s disease usually develops in adulthood and can cause a very wide range of symptoms. The disease affects both men and women and is hereditary. An effected person has 50:50 chance of passing it on to their children.

A person with HD will lose their memory, lose their faculties, lose the ability to communicate and eventually need round the clock care like my father.

The Huntington’s disease association is a charity which provides much needed support and information to suffers of HD, their families and their carers. It is a fantastic charity who have provided my father, my family and I a great deal of support over the years. If you feel you would like to donate a small amount of money to a worthwhile cause, it would be greatly appreciated. Although, this post is not to ask for money but to spread awareness.

If you would care to take the time, please take a look at the Huntington’s disease association’s website to find out more about HD and the wonderful work that The HDA do.

Further information about HD can also be found here found here http://hda.org.uk/download/fact-sheets/HD-About-The-HDA.pdf

Many thanks

Bouche x x x

Survival

Nickie over at www.Iamtypecast.com has asked some of her blogging chums to contribute to the #dosomethingyummy campaign for CLIC Sargent http://www.yummymummy.org.uk/. Nickie has given us a writing prompt and has asked to share our inner most thoughts. This week is about Survival.

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I was 13 years old when my Dad was diagnosed with Huntington’s disease. Over the next 5 years the disease took hold of him and slowly chipped away at my family. My mum lost the plot, my brother started drinking at 14 and I tried my hardest to keep it together as I felt I was the strongest of us all. Thinking back to when I was that age, I probably should have had more support. For a brief period when I was 14, I was taken into the care of my aunt and uncle and put on the social services risk register. Once back with my family, my dad had got progressively worse. My mum was in the middle of a nervous breakdown and my brothers were running amok, and I started to get obsessional about food and my weight (but that is another story). There were times when my Mum would go out, my dad was in bed and I was playing Mum to my younger siblings. I didn’t have the carefree teenage life that my friends had. I was always trying to keep our family together.

Eventually, my mum finally cracked under the pressure and wanted out from caring for a sick husband and after a nasty incident involving police, my Dad left the family home. I was devastated. Everything I tried to do to keep us all together had failed. All the pain and suffering we had been through was for nothing. I was so angry at my Mum. How could she let this happen to us, how could she not love Dad enough to care for him.

I started to resent Mum and I spent a lot of time with my Dad at his new place. He needed me more than ever and I wasn’t going to run out on him. Mum and I argued constantly and eventually she asked me to leave. I was 18 and studying for my A levels. It should have been the best time of my life. Instead I was now homeless, penniless and my world had collapsed around me.

At this time I was working part time for Stakis hotel group in their banqueting team and my boyfriend worked in the restaurant. Immediately after leaving my Mum’s I stayed with him for the weekend then we approached my boss at the hotel. The hotel had living quarters for some staff and I asked if I could temporarily stay there until I could find a place. My boss was fantastic and allowed me to stay there rent free. I suddenly realised that there were people out there that would help me find my feet and that maybe I could do this on my own. I could be independent and stand on my own two feet.

At the staff house, I would spend my evenings going through the local paper looking for a place to live. I was working part time and I knew I was going to struggle to study and work more hours. I was terrified about the kind of place I was going to find especially as I only had £200 a month to spend on accommodation if I stayed at college and worked part time around it. However, I found a room in a house advertised in my price range. So I called up and arranged to view the room.

When I walked into the house I just knew it was going to be my home. It was a two bedroom house and I would share with the landlady. She was the most compassionate woman I had ever met and after a cup of tea, I ended up explaining how I came to be homeless. She assured me that I could do this. I could live away from home, work part time, get my A levels and eventually get a job that I deserved.

So that weekend I moved in to my lovely room in my lovely house with a lovely landlady. I was so scared that I wasn’t going to be able to manage. I studied hard, I worked my hours and occasionally did an extra shift. These extra shifts paid for cheap nights out with my friends. Dancing the night away carefree, like they had been doing years earlier. I continued to support my Dad and help him whenever I had time away from work and college. I paid my rent on time and I gained a very special friend in my landlady. I passed my A levels and I found a job at a stockbrokers. My Mum and I never recovered from that time, however I became so strong. It is true what they say, what doesn’t kill you, makes you stronger. I survived that time in my life and I am a better person for it.

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I have never really talked about this time in my life like this and whilst I am typing the tears are pricking my eyes. This is a great cause and I am pleased Nickie asked me to contribute.

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Bouche x x x

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A series of firsts

Yesterday, my friend Paula at Cad E An Sceal tagged me in her post about a series of firsts. http://cadeansceal.blogspot.com/2012/02/series-of-firsts.html?m=1 So here goes. I hope you learn something new about me!

Who was your first boyfriend?
His name was Jason Barth. I was around 9 and he was the cutest boy in the school. I recently bumped into him outside my office. He didn’t recognise me but I sent him a message on Facebook. He never replied! Ha ha

The first person you kissed?
My first proper French kiss was with an older boy that had a chalet at the same holiday park as my parents. I was 13, he was 16 and he was lovely although I didn’t appreciate him slipping me the tongue in front of my aunt and uncle. Oh the shame!

First job?
My first job was working for Stakis hotel group before they were taken over by Hilton. I was studying for my A levels and I used to work in banqueting. We used to have so much fun and I met my first love at the hotel. The best memories were of playing music after service, having a boogie whilst laying out for breakfast whilst drinking a Tia Maria and coke!

What did I buy with my first pay packet?
I had left home by then so it went on bills, college fees but I had enough for a night out and half a lager!

First cd you remember buying
The first cd I ever bought was colour me badd, I wanna sex you up. The first song I ever bought was Happy birthday by Altered images, which was on vinyl 7inch.

First holiday abroad?
My first holiday abroad was to Marbella. All I remember was that we were staying in a villa once owned by Marti Cane (remember her?!) and we were near McDonald’s!

What age were you when you moved out of the family home?
I was 18. It wasn’t a good time in my life. My mum had turned her back on my dad and they had split up. It was the start of a 4 year silence between me and my mum. However, I was determined to do everything on my own and I did.

Shall I pass the firsts on? Yeah. Onto Doris at www.dorisdoesdating.wordpress.com

Bouche x x x