Monday, 28 November 2011

Things about me

I am a very tactile person who loves to sit and stroke arms, rub feet, fiddle and twirl hair, rub my feet together when comfy, rock to sleep, (all which I do without realising) and cuddle a ridiculous amount. However, I can not STAND the feel and touch of:
  • Tea bags *shudder*
  • Velvet *squirms*
  • Mouse mats *squeals*
  • Wool clothing (my wool skirt is hell to put on and smooth down)
  • Carpet
Yes, the carpet is an odd thing. This doesn't mean feeling carpet with my hands (although you will never catch me running my hand over 'good pile') but mainly with my feet. I can not walk on carpet barefoot. You know that feeling when your feet are all smooth feeling? - that is the worse time to be on carpet. And those who rub their feet on carpet when they have an itch - that makes my teeth hurt as much as nails down a blackboard. Sometimes getting out of bed in someone else's house (I have floorboards throughout my house!) and walking across the carpet can send me into panic and I end up doing a special kind of walk on the sides of my feet - toes in air, to either a pair of socks or slippers.
I have no idea where this comes from - friends and family deem me as odd. Hey ho!

I might tell you something else about me soon but in the meantime, what makes your teeth hurt / body shudder / face wince?


Thursday, 24 November 2011

Shaded Confessions

She had picked the tree. It was a vast oak with a strong reach providing plenty of shade against the mid-august sun. As they walked towards the large shadow, her eyes scanned for a place to sit - a spot where the grass was full, no thistles or twigs that might stab or sting her bare feet. Her heart was racing. She had wanted it to be perfect so that the moment was there and the words would flow.

They placed the old rug on a lush mound of grass, spreading the corners and kicking off shoes to weigh down the edges, protection against the summer breeze.
After unpacking the basket of homemade lemonade, triangles of sandwiches, strips of carrots and peppers to submerse in dips and two cup cakes each, she took a moment to stop and watch him. His eyes were beautiful. She had always loved his eyes - so many colours and flecks of light, she wondered whether she would ever see them cry or the colour become dull; the thought made her own eyes water so she pulled down her sunglasses to hide her thoughts.

They didn't say much whilst they ate and sipped the cold lemonade. Just a few pleasantries about how beautiful the day was and how the breeze was welcome as was the silence of the great open park. She wanted to say they should do it more often. She regrets not saying it now.

He ate, read the paper and snoozed in the sunshine. His body unwinding with every long exhale as she watched from behind her dark shades. Every so often she felt for the piece of
of paper that was in the pocket of her strappy summer dress. It was a hand written note, one that she had read countless times. She didn't actually need the note, she knew the words
off by heart but it reassured her. Twice she pulled it from her pocket and started to unravel the small squares, but twice, her fingers worked the paper back to its folded state.

She wanted to blurt the contents out and let all 357 words fall from her lips as quick as possible. What will he say? Will he laugh, cry or be angry. Will he scoop her up into his arms and kiss her with all the answers she will ever need.

She held the paper, clenched in her fist, took one breath and whispered... 'My name is not Clare...'

Timeline Terrors

One thing that I really don't understand, and am sure I never will, is how people can be cruel to others.
I detest bullying of any kind. Whether passively or aggressively, hurting other people is wrong.
And those that torment, tease, wear-down, control and purposely degrade and belittle are the worst type of bullies.
There are those that hide behind others,a bravado or an online personality who emotionally bully others for no other reason other than that they can. They find it entertaining and generally have no sense of compassion for anyone else.

Twitter has scared me recently. I have seen far too many nice people hurt and upset due to other Tweeters. It is all too easy to bitch, tease or degrade when no one knows who you are and when hidden by a computer screen.
As well as the general nasty attacks on time lines, there have been groups who jump on a bandwagon and who are quick to join in the name calling and bitterness when actually, they know nothing of the situation or the personal traumas that are taking place behind the scenes.
Twitter is a place to voice your mind and your opinion. Being able to have freedom of speech and reach a vast audience is in some ways what makes it special (and somewhat addictive) But what when that is taken too far? It forces people no option other than to leave, close accounts or be someone they don't want to be in the form of a new account.

This then doesn't make it real. And this isn't restricted to Twitter, all online forums face the same.

Whilst I have a lot of personal stuff to go through, I will be stepping back from Twitter for fear that comments will be made and I will be judged for decisions or depicted as someone who is always poorly and complaining, although I am not that type of person and those that know me, know that but, that doesn't protect me from those that don't and who will be quick to judge.

Sunday, 20 November 2011

The Good, the Bad and the Ugly

Last week wasn't as bad as I anticipated. Which is good; with two hospital appointments I feared that the week would lead to some very difficult decisions having to be made. Decisions that I had already started to work through and partly arrived at.

The Good
Wednesday's appointment with the fertility clinic was the one I feared the most. Expecting to hear that my body is not hospitable enough to conceive naturally or grow a baby, I was told that they saw no reason why a) I would not get funding for IVF this time round due to the remaining ovary having to be removed and b) that my uterus is healthy and should be good to grow and carry.

*breathes massive side of relief*

After hearing that decision and knowing that a report is going back to the PCT to request funding, I felt a little more optimistic about my appointment with my consultant on Friday. I like Mr Metcalf, he is always very straight forward, explains things well and is genuinely nice. I feel lucky to have such a consultant on my side. He told us that, most importantly, I have time. The next operation does not have to happen imminently and that it can wait for the ivf treatment so that we do have the 'back up'. Now all we need is the ivf treatment to come through quickly.

The Bad
Both appointments, whilst lifting a little weight off my shoulders, also imprinted some concern at the back of my mind. IVF isn't always successful and I know that this one round will be my only chance at having my own child.
The biopsies from my last procedure shows that there are cell changes in other parts of my pelvis and whilst they aren't bad cells, they are the same as Derek (borderline tumor cells)and an area of concern. So to ensure that these don't spread any further I will not only be having my remaining left ovary and tubes removed, also my peritoneum and omentum as the cells are littered throughout.

The Ugly
It is almost as though Derek cocked his leg before he left and sprayed my insides, marking his territory. The next operation will therefore be a big one and not as keyhole like I had hoped. They will go in though my current scar and up higher this time so above my belly-button. They will cut the current scar out and once done and they have taken everything, they will pull it all together and sew me up - I guess a bit like a tummy-tuck but the scar will be bigger and along with the two recent keyhole scars, my stomach will look at bit of a mess.
The thought of another big operation, days in hospital and 6-weeks recovery absolutely scares the crap out of me but I know it has to happen. But what scares me more is that to ensure the cells are all gone for good and to stop the spread I was told I may have to have some rounds of chemotherapy. That word makes my insides quiver but I am glad I know the whole process so I can prepare and hopefully, the operation will be enough.

This week, we also found out that my nan has cancer. I am not sure which type but it is 'down there' and she is having to have a full hysterectomy. At the moment we are waiting for a MRI to if and how much it has spread. She could end up as a patient with Mr Metcalf also, depending on the type and stage of cancer. All horrible and very upsetting but I know she will be in good hands.

The next 6 months are going to be very hard for us as a family. We all have our fears and we are all trying to prepare.

Wednesday, 9 November 2011

My head... this second.

Do I stay on Twitter or not?
Do I keep my left ovary or have it removed?
Do we attempt a round of ivf or have it as (it seems) how nature intended?
Do I have it all taken out?
What about early menopause?
I need to remember to reply to that text...
Will HRT make me grumpy... how will it change me?
How do I deal with not being able to have children?
Do I need to keep talking about it?
Should I stop expecting people to understand?
I need to reply to him
Why hasn't anyone been in touch?
How am I going to pay the mortgage next month?
Must remember to call Dad...
There is no food for dinner
What if adoption takes too long?
What if I resent my friends, siblings when they have children?
What if the new cyst grows as fast as the other
Can I take another 6 weeks off for more surgery?
I need to reply to email
Who will look after me?
Who will run my business?
What if the girls don't like me?
What if I get homesick?
How am I going to do this?



Sunday, 6 November 2011

I spy

The playground never dies
Fickle games and hidden lies
The race never ends
Fast pace fewer friends
The stories forever told
He said what? Her response cold
The twisting tales continue
A whisper to another - the facts untrue.
The playground never dies
No matter the age, there are always spies.


- Posted using BlogPress from my iPhone

Thursday, 3 November 2011

Just an update for now.....

I have almost given up trying to update this blog with the trials and tribulations of my never ending health issues.
I want to get back into writing creatively but at the moment, I do not have the head space to string words together the way I would like, so for now, the blog is back to being a dumping ground and my emotional filing cabinet.

I am not very good at talking about what is in my head but give the me tools to write and it will all fall out and at the moment I need to this.

So, after my post about Things as they are at the beginning of September where I had been for an ultrasound and been told my left, remaining ovary wasn't 'normal' and being refused for funding to have any eggs frozen as a back-up-plan, I have been thrown back into the system.
Last Wednesday I had a laparoscopy, which is a camera in through the belly button to have a look around. I was under GA again and this time, knowing what to expect I tried to fight the icy cold liquid as they pumped it in through my veins. Obviously you can't fight it and I won't up two hours later on a morphine high. I spent a few hours in recovery again - I am clearly unable to manage any level of pain as I was watching women come in and out of recovery whilst I was still laying there with the world spinning. After getting back to the day surgery ward and sleeping of the GA and the morphine I was visited by my consultant who told me that I have a 5cm cyst on my left ovary so it will all have to come out. He said he wanted to see me within two weeks and then left. I think I fell back to sleep.

Back at home that evening it all started to sink in. Whilst he said that he will write to the fertility clinic to get the Hampshire Primary Care Trust to review their decision following the new findings, I now have massive doubts that any of this is actually going to come together.
Thursday and Friday were hard. I peeled off one of the dressings on my belly and cried. I do not have a small little incision, I have a gash that has been stitched poorly and left me with a ridge of skin, I looked and felt like I have been butchered.
And whilst friends were meeting and supporting Twitter Friend Gray on his awesome Tweetathon, all I could do was watch. It was the IOW Festival all over again - me being unable to move, in pain whilst friends were together having a good time. But I sucked it up and did what I could from my bed to help the fantastic cause.

Now one of the things that I extremely grateful for, is having a friend who is a medical student. In her final year, Peta has been an absolute star in helping me to understand what the big words on pieces of paper mean. She has come along to nearly all of my appointments and explained what consultants are actually saying. Last night, over dinner she was reading my discharge notes and what was actually found last Wednesday and told me exactly what it meant. In the most simplest form; I don't think my insides are very baby-making friendly. Words such as: bulky uterus, polypoidal endometrium, adhesions, nodularity etc mean that my insides are a bit of a mess, let alone Derek's bastard love child growing on my left ovary which has grown to golf-ball size in less than two months.

Talking with Carl last night, who has been an absolute rock of support we were discussing the what ifs and some decisions that might have to be made. Do we want to get eggs or an embryo frozen and implanted at a later stage knowing that my insides are not very welcoming and may not work. Do we do it as a back up knowing that egg stimulation and the whole process can be painful and if unsuccessful - heartbreaking? Do I go with my gut instinct that I will not be able to have a child naturally and request to have it all taken out?

There are so many questions and so much to think about. I have another appointment with the consultant on the 18th November when I will hopefully know more and understand what needs to happen. My head is full with the what ifs and the thing that makes me the saddest is that I might not be able to give my mum the grandchild she craves. I mean naturally as we have already discussed adoption and if I can't have children then this is what we will do - there are far too many babies out there needing to be loved.

There is also work to think about. It is almost certain that I will have to be cut open again to have the cyst removed and that it won't be able to be done through key-hole. This will be another six-weeks recovery time and maybe longer as it is only 6months since the first operation, let alone the two little holes and one gash I have in my tummy from last week. Hopefully though it will be OK as I will have my apprentice with me AKA Flossy who starts full time with me next week as The Marketing Collective's Junior Marketing Executive. I can not wait. Not only working with my sister but also the pressure it takes of me and the projects and work that I know we will be able to achieve. She has helped me for the last couple of years and knows the business. She is confident and I know she is going to do extremely well. There will be ground rules and I will be her boss and not her sister during office hours - for me as much as for her! I fully expect to see her on The Apprentice in a few years!

Wow, this feels better; 'stuff' is out of my head. I know all will be OK and as it is meant to be. I am strong and I have an amazing support network around me so what ever will be - will.

Maple Stars

Yellow maple stars fall from the sky

Blustery angles and sweeping breezes

I want to be walking

With the stars amongst my feet

The ground rich with colour

The air sweet in smell

If I could catch a falling maple star

I would make a wish

That you are by my side

With our own little stars to watch