The old lady

Whilst watching Eastenders this evening, Derek referred to Pat as ‘the old lady’. Which instantly made me think about  my Nanny. I have wanted to write a post about her for so long but I have been waiting on some old photos from my Mum.

My Nanny, was always referred to as The Old Lady by my Dad, his brothers, my Grandad and literally all the family. As a young woman she was known for being a social butterfly. She was always immaculately turned out and enjoyed a drink and a dance. I remember hearing one story where she was dancing and had a full skirt on. She spun around on the dance floor, and exposed her knickers which matched her skirt and which she wore over her tights!

My earliest memory of my Nanny is at a family party and she was having a good dance on the dance floor. I was about three and I was mesmerised by her. I watched her dancing for a while before she scooped me up in her arms and started dancing with me.  

 

I was named after my Nanny whose name was Joan. I don’t think it was just the name I inherited from Nanny, I am also known for my love of a good boogie.

Nanny had four sons, so when I was born, the first granddaughter, I was spoilt rotten. I always remember my childhood christmas’ at Nanny and Grandad’s and they were fabulous. We always played lots of games and Nanny’s cooking was pretty terrible, but we didn’t care. We loved being there!

As time went on, Nanny and Grandad split and divorced and Nanny met and later married a lovely man.They moved to Leeds and I saw her less frequently. Soon after my Dad was diagnosed with HD, Nanny was also diagnosed too.

She soon swapped dancing for the church and travelled the world whilst she still could. As the disease took hold and she became very poorly, I decided to see her less and less. I was scared and I didn’t want to see her sick. I wanted to remember her as the social butterfly, she once was.

Nanny passed away in 2007. I was devastated and even though almost five years have passed it still feels recent. I am sad she never got to see me get married but I hope she was watching over us.

So to The Old Lady, you are gone but never forgotten and every time I dance, I dance for you.

Bouche x x x

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Goodbye 2011

So that’s it. 2011 is over and 2012 is upon us. I can’t lie, 2011 has been a disappointment but that said I thought I would give you a run down of Bouche’s year anyway!

January – I started my blog! After months of tooing and froing I finally did it! Mr Bouche turned 32. I joined Weight Watchers, with the view of losing three stone.

February – Was a quiet month but I spent 5 hours at Guys hospital having my root canal treated. I helped a good friend move into her home after a turbulent 18 months for her

March – Little J turned 9 and I suddenly realised that he as becoming a young man. My good friend Doris and I headed to the cinema and ended up in London Gallery’s and had a fab night. Mr Bouche took me on a date, even though I had, had three hours of root canal treatment!

April – April brought Easter and lots of family time. I spent lots of time with Daddy Bouche. I also visited my GP to be referred to the genetics clinic at Guys. The first of the 2011 babies was born to a good friend and he is a beaut. Our girly trip to Butlins was booked for later in the year. The royal wedding brought a houseful at 11am and some hangovers the next day!

May – The second of our 2011 babies arrived and he is a handsome chap. My mother in law turned 60 and we had a lovely day at my sister in-law’s. More root canal treatment for Bouche and a big girly night out. We also went for our first appointment at Guys Hospital to discuss our options at the Genetic clinic.

June – My sister and law and I headed to Wembley to see Take That in concert. June also saw Huntington’s awareness week and the summer party at my Dad’s home. I attended an Ann Summer’s party which was more than fun. We also had a family get together at Mr Bouche’s Dad’s house and I finally met his aunt from New Zealand.

July – July brought the third of our 2011 babies and she is absolutely adorable! I also headed to Essex for Essex Polo which was hilarious and so much fun. Amy Winehouse passed away and I wrote the saddest tunage tuesday. July also brought a client go karting event at work and despite being very competitive my team came second from bottom!

August – I bravely had my second tattoo, of our wedding date in roman numerals on my wrist. We joined the local Huntington’s Disease support group for a meeting and made some new friends. We also celebrated our first wedding anniversary and had a bit of a shindig at home.

September – I turned 32, this involved a carvery lunch, a girly breakfast on my birthday, dinner with my aunt and uncle and a big girl’s night out. We also took Little J to the O2 to see Batman live. Babies number four and five arrived (twins) and are real smashers! I took my cousin to a wedding fayre and she asked me to make a speech at her wedding. Both Mr Bouche and I were personally affected by 9/11 and we remebered the date by purchasing a beautiful canvas of New York for our lounge. I also worked in the disaster recovery site and got to see Daddy Bouche lots that week, as I was based near his home. September also brought worry. We went to Guys Hospital and after they had looked at family history, they wanted to test me for a duplication of chromosome 15. It was one long week but all was well and I was negative.

October – October started with a sex and the city afternoon tea in London and a family bbq at my aunt and uncles (otherwise known as mum and dad number 2). We had a wedding reception which was fab and a visit to Mr Bouche’s uncle’s restaurant in London. I started organising my cousin’s hen weekend. Work was frantic and looked as if we were in trouble and our jobs were at risk.

November – We had another wedding reception, a 30+1 birthday party and the girly Butlins 80’s weekender. It was also the month that my company collapsed and I was made redundant along with half of the company, with the further 50% go early in 2012. With that it brought leaving drinks and an interview.

December – The start of my unemployment! My little sister was 9 and we had a tea party at Casa Bouche. I had a girly curry evening. Lots of christmas shopping was done. I met up with my cousin for some wedding preparation shopping. I signed on. I claimed ppi. We had an appointment at Guys and missed it as we were stuck in traffic. I had two interviews and am still waiting for the result. We had a visit from an absent friend. I avoided my family at christmas (I saw them on the 23rd, this isn’t really christmas is it?). We saw Little J on christmas eve and gave him his presents. Christmas day we visited Daddy Bouche and then came home for the Bouche’s christmas where we saw no-one but ourselves! Boxing day, we went to Mr Bouche’s sisters (www.cherishedbyme.com) and had a lovely day. The 27th saw us at Mr Bouche’s Dad’s which was eventful as usual. The rest of December has seen me mainly eating cold meat, cheese and pickles and drinking wine in my pj’s! I have managed to apply for some jobs and have an interview lined up for early January. Mr Bouche and I spent New Years together in doors, toasting the new year in and ushering 2011 out!

What will 2012 bring? Below is what I know will happen for certain!

An interview in January, which I hope will be successful and bring a whole new adventure.

A wedding in February. Mr Bouche’s best friend’s sister gets married.

A hen do in March organised by myself for my darling cousin.

A wedding in April, where I will be the acting mother of the bride and will read a speech about my fabulous cousin in a father of the bride fashion.

Little J doing his 11 plus. Wowsers, where has the time gone?!

The Olympics hitting London.

Our nephew goes to university.

Everything else will be, no doubt a rollercoaster!

Happy new year everyone, lets hoping 2012 will be fantastic!

Bouche x x x

Bah humbug!

This time last year I was half way through my christmas shopping. New decorations for my tree had been bought, I was busy making menu decisions for christmas day and had even made my own mince pies.

Now, don’t start thinking I am one of those Kirsty Allsopp types who start their christmas shopping in June, pickle their own onions and make fantastic personalised gifts. I am not! I don’t even really like christmas!

Mr Bouche and I have a mutual dislike for christmas and would happily stay indoors from December 24th to December 28th and not see a soul! We always shun family christmas dinner and instead choose to eat christmas lunch together and enjoy the day, just the two of us. We do visit Daddy Bouche on christmas morning but we always decline invitations.

You see, Christmas is not the same as we both feel a little lost. I have never enjoyed christmas since my Dad was diagnosed with HD. Christmas has never been the same. I don’t get along with my step dad and cannot think of anything worse than spending christmas day with him, over my dad.

Mr Bouche always feels a little sad. Little J usually spends christmas day and boxing day with his Mum and her family. It is hard for him to spend christmas day without little J and even harder to spend it with other children.

Last year, however, was the most perfect christmas. Little J had decided to spend christmas eve with us and woke up with us on christmas morning, the first time in 8 years. Even if it was 4.30am, it was just perfect. We had a family breakfast and we got to see Little J’s christmas morning face! I went into overdrive to make it the perfect day. It was the first christmas as a married couple and the first christmas in our house. The tree was up, on the first week of December and all the presents were wrapped weeks in advance.

This year could not be more different. I have bought three christmas presents. Every time that bloody coca cola advert comes on, I turn the tv over. Whilst in the supermarket this week, when I heard the christmas songs being played I put my iPod on and listened through the head phones and don’t even get me started on the John Lewis ad. Has christmas started early this year?

We have no definite answers from Little J as to whether he wants to stay on christmas eve, but I guess we are both expecting it to be a no. I can’t even start to get organised. I have zero interest this year. I don’t think being made redundant has helped and I am hoping the whole christmas period will pass whilst I am asleep.

I know it will be different when we have a baby. Maybe Little J will want to be with us all christmas, maybe we will embrace all family gatherings and not feel like something is missing, maybe I will buy presents in June and pickle my own onions!

Bah Humbug Bouche x x x

A plan that works

My baby plans are not going quite to plan. After our last appointment at Guys, Mr Bouche and I decided that we would try and get pregnant naturally, and go for the CVS testing at 12 weeks once we are pregnant. We discussed when we would start trying and we agreed that we would start early 2012.

I am already 32 and aware that time is a factor, bearing in mind that we need to have these CVS tests and we may not have a HD embryo on our first attempt. So as far as we were concerned the sooner the better.

This past week has been pretty rotten and our quest to start making babies could be postponed as my job is now at risk and I am likely to be unemployed come the end of November.

I know I should be more sad that all my hard work and career progression is coming to a close and that I will need to start again but I am more sad that Mr Bouche and I cannot start a family as we had hoped in the new year.

I can’t seem to go onto facebook without seeing another pregnancy announcement. It seems even girls that I least expected to be announcing a pregnancy, are at the moment and I feel like the last one to do so. Yes, I am jealous. I want a baby! I want to show off a scan picture and tell people that the weight around my middle is not caused by my love of wine and crisps but a little human being.

Nothing ever seems to go to plan with me and starting a family is definitely not following the plan I had envisaged! I guess I will just have to create a new plan. Maybe a plan that will actually come to fruition!

A plan that works!

Bouche x x x

Something else to deal with? The next steps

For those of you who read my blog regularly, you will be aware that I had to have a test last week to determine whether I had a duplication of chromosome 15, which my father and brother have. We are considering our choices for having a Huntington’s free baby and this new information and test was a massive curve ball.

Please see the first post here…

https://boucheinthecity.wordpress.com/2011/09/20/something-else-to-deal-with/

Our consultant at Guys advised that the results would be back in two days. After a four day wait (the NHS hey!) the results came back and they were NEGATIVE!

I can’t tell you what a relief it was for both myself and Mr Bouche. Lots of tears flowed and we had a good conversation about how we wanted to progress.

It came to light at the appointment that we had misunderstood genetic exclusion testing. This is where we will provide the hospital with our blood as do our parents and they create a genetic profile. We then try to get pregnant naturally and at 12 weeks they do a test on the foetus. We believed that the test would be for the HD gene and thus if positive, I would have the gene. We were very anti this as I do not want to be tested. However, what actually happens is they test for the baby’s genetic make up. Lets say My Dad is A, my Mum is B, Mr Bouche’s Dad is C and Mr Bouche’s Mum is D. A, B, C and D are made up of two parts (inherited from our parents, parents). So only one half of A has the HD gene (the part from My Dad’s mum).

The prenatal exclusion test will consist of the genetics team testing the cells derived from our foetus and will check the DNA to see which combination of A, B, C and D the foetus has inherited. If the foetus has B and C or B and D we are good to carry on with the pregnancy. If the foetus has A and C or A and D the baby is at risk of Huntington’s disease and we will be given the option of terminating the pregnancy.

We have made the decision that we are going ahead with a natural pregnancy and will have the exclusion testing over the PGD IVF. We have also made a decision that we will only terminate two pregnancies. If the worst happened and we terminate two pregnancies, we will enrol on the PGD IVF programme.

It has been a hard decision to make but we feel that although terminating a pregnancy would be so difficult both mentally and physically, we feel this may be better than the emotional rollercoaster of IVF.

I know some people won’t understand our choice and may even disagree with terminating a pregnancy, we are living the devastation that has been caused by this awful disease. So we feel we are justified in making such a decision as we don’t want this disease to destroy anymore lives.

Bouche x x x

Something else to deal with?

The past month has raced by and before we knew it, we were fast approaching our appointment with the PGD team at Guys hospital. Last Friday, I received a message from our genetic counsellor asking us to come in earlier so they could go through some history and dot some i’s and cross some t’s.
I can’t pretend this didn’t make me nervous and over the weekend, I tried to keep it to the back of my mind.

I woke yesterday full of nerves and apprehension. Mr Bouche and I made our way to Guys hospital and were met by the genetic counsellor and taken into a room. She explained that the PGD specialist had looked into my family history.

My brother had been diagnosed with a duplication on chromosome 15 a few years ago. At the time, because I was well the doctors believed I was unaffected. However, with advances in genetic medicine it now seems you can be a carrier and not be affected by any symptoms.

So what does this mean for me? My brother inherited the chromosome duplication from Dad and thus I have a 50/50 chance of inheriting it. So I had to have a blood test to determine whether I have. My brother is fairly well but as he has inherited it from his father the symptoms are mild.
However, as a woman, if I was to pass the chromosome defect on to my children the effects are a whole different ball game.

So if didn’t have to worry about passing huntington’s on, I now have to worry about chromosome 15 duplication. This defect can cause birth defects, growth problems, seizures, cleft palate, communication delay and mental retardation.
Thankfully, they have taken my blood and I will have a result back later this week. I would be lying if I said this new information hadn’t put me on another leg of the emotional roller coaster but I have to wait for these results patiently. I also have to stay away from google! The temptation to research is there but I must resist until I know whether we have this to deal with.

To be continued ….

Bouche x x x

A Mad Fortnight

Bouche has had a manic couple of weeks. Work has been crazy and leaving the house at 6.30 am and returning at 7.30pm has meant that I haven’t had much time for my beloved Bouche in the City.

So apart from working like a trojan, what has been happening in the past fortnight? Well, being busy at work has meant that, I have had very little time to eat as well as other things. Which has meant that even though I have not been tracking my Weight Watcher’s points, I have still managed to lose weight. This has meant that I am just 6 pound off target, for the PGD IVF programme at Guys Hospital, London.

We have had a letter from Guys to say that I need to join a Smoking cessation clinic in order to proceed with the funding appointment at the PGD clinic at Guys. I knew this was coming, I do like smoking but I know it is bad for me and will hinder the PGD process. I am not a big smoker at just 5 a day (plus more if I have had a wine!). I have given up before and know I can do it. So, next friday I will go to the clinic and start the process to being a non smoker so we can have a HD free baby.

I have spoken to the genetic nurse and they are happy for us to come for an appointment now, they know I am giving up smoking and am very close to the acceptable BMI. I asked how long it would take for an appointment, and was told that we will be seen with four weeks.

My reaction? Wow, this is actually happening! I was quite negative after our first appointment, which created lots of tears and emotions. After lots of tweeting, facebooking and searching on the world-wide web, I am in a very different place. I have been introduced to stories of couples that have been successful and I am now in a place where, I know we will do whatever it takes.

This past thursday, Mr Bouche and I went to a HD support group and we have decided that we are going to actively network with families that are effected by HD. We hope that we will learn about people’s positive experiences and how they live lives to the full whilst suffering HD.

So what else has happened? Mr Bouche started a new contract three weeks ago. This has necessitated Mr Bouche getting up 4 – 5am. The broken sleep has killed me, even though I am usually up 6am. With work being so mental, I have not been getting home until at least 7pm, and with Mr Bouche heading off to Bedfordshire (bed) at 8.30, we have been eating dinner and parting ways. That said, I have been catching up with my ‘crap’ programmes that are sky plus’d and we have really embraced the time we have had together. We have far more productive conversations in the 90 minutes we have together, and we both seem to be more appreciative of the time.

Little J is on school holidays, which can be a challenge in itself. He seems to thrive on the structure of being at school and the past few weekends have been challenging. That said, he is adapting better to the idea of having a sibling although he is keener to have a brother than a sister! (Not sure we can determine this boyo!) Little J is also adapting to our post marriage style of parenting, I am old school and Mr Bouche is becoming more like me (old school) by the week and Little J is readjusting well.

I have managed to fall out with two friends and make up again and allegedly been a good friend without realising!

My mum seems to have had a personality transplant and we have been getting on well. I have also managed to laugh myself and my colleagues through a difficult couple of weeks at work!

So what is next? Losing that dreaded 6 pounds in the next few weeks, packing in the cigarettes, having a get together to celebrate our 1st wedding anniversary next week, my 32nd birthday in three weeks, a birthday dinner, two birthday drink ups and a week off work. I love having lots going on and the next four weeks will hectic woop woop!

 

Bouche x x x

It could be you

Last week the Weirs from Scotland scooped £161.5 million on the euromilllion lotto draw.

That got me thinking what I would do if I won such a grand amount of money.

First on my list would obviously be to hand my notice in! I love my job, but if I was loaded I wouldn’t be dragging my arse into the city everyday, that’s for sure!

Next, would be to buy a special someone’s house so she wouldn’t have to move.

Onto my property portfolio. I would buy us the family home that we’ve always dreamed of. Lots of character, somewhere with space, somewhere where little j will never say ‘I’m bored’ (I am very optimistic about this ha)

I would obviously let Mr Bouche loose on some car dealerships!

Next we would buy our dream place in Ibiza. Somewhere in the hills.

I thought about moving Daddy Bouche into a lovely place with private nurses but you know after some thought, I wouldn’t. He loves where he is and they take care of him so well. Therefore, I would give Birling House a substantial amount of money so that they never had to worry about funding.

After a lovely family holiday. We would make sure all our friends had a little something and of course send the in law’s off to Thailand to find their dream home.

Obviously some serious spending would need to take place. I can shop and bugger me I would!

Next, Sod that NHS funding! I would be at Guy’s with my £8000 and would start the first PGD IVF cycle.

Money can buy you many things but all that money wouldn’t give Daddy Bouche his health back and I couldn’t buy more time with him, when he was well. Plus, there are no guarantees that even with all that money that the IVF would work. Hmmmmm

Would the money change my life? Hmmm probably not! I would have more stuff and I could make other’s lives better, but it may not bring me a HD free baby and certainly wouldn’t bring my Daddy back 😦

Bouche x x x

The waiting game

It has been 6 weeks since our initial appointment at guy’s hospital with the genetic counsellor and we are still waiting for our referral appointment with the PGD team.

So being the impatient cow that I am, yesterday I called them to chase it up. I was a little disappointed to learn that we had only just been referred and that we would have to wait about 8 weeks for our next appointment. However, being told that we would have an appointment with the PGD team in 8 weeks has made it seem real once again and I am starting to get that mix of emotions, that I had a few weeks ago. I am excited that the ball is rolling, nervous as we will apply for the funding and apprehensive as I know it is a bit of a long shot.

I was happy to learn that all my rollercoaster emotions are totally normal. The genetic counsellor did say she would be worried if I hadn’t been a bit emotional!

I know I am ready for this now. I am surrounded by lots of babies and bumps at the moment. Everyone I know seems to be pregnant or have a new born. I honestly never thought I would ever say this, but I am a little envious. I can’t go one week without a new baby announcement or a pregnancy announcement. A good friend of mine is overdue so there will be a new baby to cuddle next week J

I know I have to be patient and that maybe this will happen for us. I just can’t seem to be able to wait for anything! Plus, it seems I am thinking about this far too much. We need to be focusing on the now and doing the things in our life that we cannot do when you have a baby and not worrying about what will happen in the next couple of years. I need to give my brain a rest. Why can’t I just relax?

There is a pack from the PDG team at Guy’s on its way to us at the moment. When it arrives, I know I will read and pull every piece of information apart. That is what I do! I also have a programme sky plus’d that was shown on BBC2 this week about testing your genes. There is a piece in the documentary which explains the PGD IVF so of course I will be pulling that apart this weekend. I am pleased there is lots of information out there, but maybe there is too much for someone like me! I need to stop googling and start relaxing!

I just wish I could be more patient and go with the flow!

A very impatient Bouche x x x

Dear Daddy

This is my open letter to my Daddy…

Dear Daddy,

We have been through so much together and I wanted to write you this letter for father’s day.

I am sorry that you are the way you are now. I miss the old you but I am grateful for the memories I have of you, when you were well. I am blessed, as little brother was only 4 when you were diagnosed and I know his memories of you being well are limited.

I want to thank you for being a fabulous Daddy, who worked hard to give us everything you could. You worked so hard that you never took holiday and thus we never went abroad together. However, you made up for that in other ways.

My earliest memory of you and I, was when you took me to Hastings beach with Grandma and you took me into the sea. I was only 3 and a wave came in and swept me under. You  held my hand and when I emerged from the water I said ‘That was fun Daddy, can we do that again’. You taught to swim and even though you worked so hard you took me swimming every sunday to practise. You taught me to not be scared and I became a strong swimmer.

When I was 9, I decided I wanted to join the local judo club. I remember you taking me to buy my suit. They offered us a second-hand one. You said ‘no, my fanny ann will be having a brand new one’. That was typical of you, You always made sure that I had the best of everything.

You may have been working so hard that you didn’t make my nativity or the school plays, but you bought Mummy a video camera so you could watch. You always seemed proud. I remember being 10 and being in the school choir. We were invited to join the Kent music school and we recorded christmas songs for Radio Kent, and eventually sang at the Albert Hall. You were so proud. You had a recording and made duplicates to send to all the family. I remember that you had a copy in your car and played it on your way to work.

It was around this time that the signs of the Huntington’s started to surface. I remember you taking us to Chessington and Mummy was scared to go on the rides. You came on everything with me. We had such a fantastic day but you tripped and fell. You hit your head and it was bleeding. I also remember the Ramsgate carnival when little brother was about 6 weeks old. You cradled him in your arms all day. You were such a show off! You fell that day too, by the model village. None of us had any idea of what was to come a few years later.

You were such a strong man, a man’s man, who loved his Aston Martin’s and motor racing. But, you always made time to take us out for sunday lunch (every week), supported every hobby we had, whether it was Judo, motocross (yes I was a tomboy), dancing, gymnastics or swimming. You would always play fuzzy felt and sindy’s with me. When I was a toddler I always got up at 5.30 just so I could brush your false teeth (ergh!) because I idolised you. You always made room for me to snooze on the sofa with you when I was little.

Thank you for the wonderful memories that I have. These memories are cherished by me. I wish we had, had more time when you was well together. I miss my old Daddy and I am so desperately sad for the HD taking over.

I wish Mr Bouche had known you when you were well. I feel he really missed out. However, you may not be able to say it but I know you approve of Mr Bouche by the look in your eyes and the tears at our wedding. He is a fantastic father and he will make a fantastic father to any children we have, just like you.

I love you and I cherish all the memories.

With love forever

Your Fanny Ann (aka Bouche) x x x