6th February 1975 to 18th June 2005

It feels like just yesterday. Some days I still feel the grief is just too much to handle. I miss your smile, your voice, the touch of your hand, our lovely cuddles, stroking your beautiful face, running my fingers through your hair. I’d give anything to be able to do those things again.

I will never forget the moment I said goodbye to you. I remember laying my head next to yours on the bed, stroking your face and hair, how beautiful you were even with all the machines and tubes. I talked to you for hours, just you and me, I told you how much I loved you. When the time came for me to leave I held you close to me and whispered goodbye in your ear and that I will always love you. As I turned to leave I stopped in the doorway and stood alone for what seemed like forever, just looking at you as the tears ran down my cheeks…

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“You were the best person any of us knew, and you died and you lost everything. I lost everything. I lost the only person I ever loved”

“No you didn’t. I was right here and you loved me anyway….Lost love is still love. It takes a different form that’s all. You cant see their smile or bring them food or tousle their hair or move them around a dance floor. But when those senses weaken, another heightens. Memory. Memory becomes your partner. You nurture it. You hold it. You dance with it….Life has to end….love doesn’t.”

(The Five People You Meet In Heaven – Mitch Albom)

The posts below were written by me on this date in 2005, 2006, 2007, 2008, 2009 and the here and now…

11th June 2005

Never in my wildest dreams could I have seen this coming. I only spoke to you this morning and you sounded a lot happier. When I didn’t hear from you at 9pm I gave you a call but you didn’t answer, I thought maybe your water tablets were working again!! Tried you again a few minutes later and when you didn’t answer I paniced. You were so well compared to a few days before, when I rang the ward the staff nurse said you were being taken to ICU, they couldn’t tell me what had happened but I already knew it was bad. By this time it was 12.30am, I called ICU and spoke to your Mum, what a weird conversation that was. I wanted to get to you right then but trains weren’t running and Mum had had a drink so couldn’t drive me. I went to sleep at about 1.30am and prayed that you would last the night. I wanted to hold your hand and tell you that I love you…

11th June 2006

9am, 1 year ago today, would be the last time we would ever speak. You sounded so much brighter, you were feeling so much better, if only I had known then I would never hear your lovely voice again

Words can not begin to explain how lonely life has felt without you So many things have happened since you entered hospital on 5th June last year, all of them would have been that much easier if you had been here, if I could have talked them through with you.

I have been blessed with MBF, J, A, P and G. Without them I wouldnt be here now. They have been so kind to me and helped me to cope since you’ve been gone. But they will never be you

I am writing this late on Saturday night (or early sunday morning I suppose) I have felt like I was on holiday today. The new flat has a balcony and with the door open its felt like an apartment in the Canaries or something, plus I remembered to put suncream on so it even smells like holiday!! I met some nice people when I was out at the football, I am pleased I pushed myself to go, you’d have hated the heat but the atmosphere was great….game was less great but, we did win!

I just wish you were still here to share life with me. The love, laughter, tears and joy you brought was abruptly and cruelly taken and has left my heart in pieces. I want to understand why you had to go but know I never will

Before this all becomes too much for me I will sign off (for now) but know sweetheart that there isn’t a day goes by that I dont think about you and wish that I could have you back.

I love you today and always XXXX

11th June 2007

There are times in life when you wish that things would move quicker but, there are other times when you can’t believe that life dare move so fast! It’s difficult to really understand that it has been 2 years since this terrible journey began.

Reading back through posts like those above enables me to see how much I have been through in that time and also shows me that even on days like today when I don’t feel it, I am doing ok!

This post today will be a short one, my deepest feelings are only to be shared with Damian in my ‘special time’.

What I would like to do is take a moment to thank those who know exactly what today means and who walked with me through our week in ICU…to my Mum, C and W, to J, to A, to R the Pastor at RBC, to MBF – all of you in some way started a new journey with me on this date and I wouldn’t have made it to today without your love and support.

Thank you, all of you {{{HUGS}}} xxx

11th June 2008

Funny, it only seems like yesterday. I’d still just like to be able to stop the world for a moment and try to get to grips with all that has happened since this day 3 years ago.

I don’t have much to say today, I am finding things difficult at the moment and don’t seem to be able to find the right words to say properly how I am feeling.

This past year has been another one full of so many ups and downs. I’ve been to Germany, Snowdonia and the Isle of Mull (twice). I’ve had good health days and some really bad health days. I’ve made some great friends, lost some old friends, refound an important old friend and moved house…I am sure there are many more things!

Throughout everything, as well as my Mum, brother and sister, there has been one other constant in my life since June 2005. MBF, thank you for sticking by me and supporting me through everyday since then XxX

Tomorrow I will return to St Thomas’, exactly 3 years to the day when I headed there to see you. This time I am returning for the results of extensive tests and I am hoping to know for certain whether I have MS, Lupus or something totally different. So it’s going to be a day full of mixed emotions I am sure.

However, no matter where I am or what I am doing you are always in my thoughts Damian, I don’t think that will ever change, and days like today will always be full of happy and sad memories of you xxx

For Damian

11th June 2009

Looks like I say this every year, but, I can’t believe how fast time seems to go. So many things have changed this past 4 years.

MBF is here today and we are planning to head to the coast for the day. It’s also C’s birthday. We had come home from dropping her at the airport this day in 2005 when my world flipped upside down. Having not heard from you at the usual time it took quite a few phonecalls to find out what was happening with you…

4 year’s on C is 25 and will be a Mum sometime in the next few weeks! That will make me an Auntie…how old does that make me sound!!

These posts get harder and harder for me to write as the years go by. I don’t really know what to say

A few days ago I managed to catch an episode of ER that I had wanted to watch for ages…in hindsight I should have read the reviews before watching…instead I spent much of the last half an hour in tears. Whilst the cause and type of injuries aren’t anything like what you went through, the tests and outcome are so close to what happened I couldn’t help but relive those last few days…

Here’s a Youtube video of the scenes I am talking about…

Still miss and love you Sweetheart xxx

11th June 2010

5 years, 5 whole years since I heard you speak. Days like today do not get any easier

You have missed so much, and I have missed being able to share so much with you too.

New Years Eve 2009 I completed something you and I had dreamt of for years, I saw in 2010 in Sydney Harbour – it was AWESOME! I have never seen a display like it in my life and doubt I ever will again!

A bitter sweet evening though, MBF was wonderful, but, it was ‘our’ thing and I wish you had been there…though I have no doubt the awesome evening had a helping hand from you too…if there is any justice you’d get to choose your view for NYE’s too!

It seems since I came back from holiday and my health has been it’s usual pain in the arse I have been thinking about you and missing you more and more. Having the ring on my finger used to make me feel I was carrying you with me but as a lot of people ask if MBF and I, or even the guy I was at a conference with this week, are married it’s begining to lose it’s meaning…I will have to come up with something else special for the next 5 years that gets me through.

I am heading to a place we loved next week for your special day, I really hope you’ll meet me there, a walk along the beach always makes me feel close to you…till next Friday, thinking of you and love you always sweetheart xxxx

6th February 1975 – 18th June 2005

For now it’s just a place for us to write anything we might need to remember! Oh and for posts about how excited we are LOL

You can check it out here BIG Trip Blog

When we got through to baggage reclaim we heard a loud cheer, clapping, music and a bell ringing and soon worked out that every time a soldier (etc) went through they were receiving this wonderful reception. It actually made Mum and I quite emotional.

Whatever your opinion on this ‘war’ these people are fighting for a better world for all of us and I only wish all troops US, UK and others received a welcome home like this!

About Operation Welcome Home Maryland

‘Hundreds of our Sailors, Airmen, Soldiers and Marines return from the War on Terror every week through the gates of the Baltimore/Washington International Thurgood Marshall Airport. Since March 2007, Operation Welcome Home volunteers have greeted over 250 flights and more than 60,000 Soldiers, Sailors, Airmen and Marines.’

You can find out about this wonderful organisation here.

This video wasn’t taken on the day we were there but does give you a tiny glimpse of what we saw…

26th January 1984 – 11th November 2006

An Uckfield woman is promoting an organisation she formed which provides information about everything relating to brain tumours.

Natalya Jagger set up Brain Tumour Buddies last year after being struck by the lack of information for brain tumour patients in the UK.

Natalya first became aware of the disease when a friend’s daughter, who lived on the Wirral, was diagnosed with a brain tumour and died at the age of 22 in 2006.

Natalya joined online brain tumour groups at the time and started collecting information which she has since brought together on a website which can be found at www.btbuddies.org.uk.

The information is for patients, families and caregivers and has been praised by organisations like Macmillan Cancer Support and the Brainstrust as well as brain tumour survivors.

Natalya, who is taking advantage of International Brain Tumour Awareness Week, to tell people more about the devastating disease said: ‘Over time, and through Rose’s short battle, I have learned just what a huge impact the diagnosis and side effects of a brain tumour can have on not just the patient, but their family, carers and friends.’

She said there was, as yet, no cure for brain tumours but she believed greater awareness of the illness would lead to more support, increased funding for research and better outcomes for all whose lives were touched by the disease.

*******************

Article on Uckfield News website following my press release for International Brain Tumour Awareness Week

A Tunbridge Wells man is this week celebrating International Brain Tumour Awareness week, thankful to be alive after being given just months to live four years ago.

David Grant was 48 when he was diagnosed with a Glioblastoma Multiforme, a World Health Organisation grade 4 brain tumour (the most aggressive grade) in August 2005.

Having no history of headaches David went from being a person who was sorted out with a 16p packet of paracetamol, to being rushed into the operating room for a craniotomy, in just 11 days.

His operation was a success, removing a tumour the size of a walnut. However, David’s wife Lisa, was told the tumour was malignant and highly aggressive. Doctors advised her he had just 12 to 15 months left to live.

Today, four years later, following radiotherapy and chemotherapy, David has far outlived the medical team’s expectations. He continues to work full time and is enjoying watching his daughter grow.

David said: “Ever since the operation I’ve had regular MRI scans. The period between them has lengthened now to six months. June was my 13th post-op scan and my consultants analysis of it – that scan could not have been better – was the same as the previous one.”

He added: “My next scan December – bring it on.”

However, stories like David’s are rare. While the five-year survival rates for many cancers is more than 50% and rising to over 90% for some cancers, for brain tumours, the five year survival rate for men is 14.1% and women is now only 13.8%.

International Brain Tumour Awareness week is an opportunity for those affected by a brain tumour to raise awareness of the disease and BT Buddies, a project founded by Uckfield resident, Natalya Jagger, aims to do just that. It provides vital information, support and assistance to people affected by a primary or secondary brain tumour and to raise awareness among the general public (including patients, their families, carers and medical professionals) about all areas relating to brain tumours.

Natalya founded the organisation after a friend’s daughter, Rose, was diagnosed with a brain tumour in 2006 at the age of 22. She died later that year.

Natalya said: “I knew nothing about brain tumours. Over time, and through Rose’s short battle, I have learnt just what a huge impact the diagnosis and side effects of a brain tumour can have on not just the patient, but their family, carers and friends.”

As yet, there is no cure for brain tumours. But campaigners believe greater awareness will lead to more support, increased funding for research and better outcomes for all those affected.

Brain tumours have overtaken leukaemia as the biggest cancer killer of children in the UK. The number of children dying from a brain tumour in 2007 was 33% higher than in 2001, while child deaths from leukaemia were 39% lower than in 2001. In 2008, 85% more people under the age of 65 died from a brain tumour than from leukaemia. Today, one in five cancers now spread to the brain. Despite this, brain tumour research receives less than 1% (0.7%) of cancer research spending in the UK.

For more information on brain tumour, or to find out about the work done by BT Buddies go to www.btbuddies.org.uk

*******************

Following the distribution of a press release by BT Buddies (me) articles have started to appear here and there to shine a light on brain tumours and those affected by them during International Brain Tumour Awareness Week

Anyway, I have an interest in the pathway as part of BT Buddies so I clicked on the link and was greeted with the following paragraph…

“Imagine you have just six hours to live. You’re wired to monitors, and have tubes all over your body. Nurses and doctors know you’re not going to recover, but they still keep changing your drugs and taking blood from your arm. Your spouse is trying to hold your hand and talk to you. But all you can hear is a machine that goes “beep”. It’s probably the last thing you’ll hear.”

This is how Damian died. Had he not already been a patient when he had his massive heartattack he would have died very quickly at home. Instead, because he was an inpatient he had a massive heartattack and was worked on on the general ward he was on for over 5 hours by people trying to (obviously) save his life. He spent the next 7 days in intensive care where we kept being told over and over that he was not going to recover and they would give us a few hours and then they would switch his life support machine off. Those few hours would pass and they would return to us and say they wanted to try one last thing. For 5 days this was our life.

However, from the very first day they knew that if by some miracle he pulled through he would need a heart transplant and would lose his right leg……his kidneys were failing and his liver had pretty much packed up…I wondered what made them feel the right thing to do was keep trying, over and over again without a care in the world for us sat in that small relatives room wondering if that next moment would be his last…or for Damian. How would he cope with all these things if he were to survive? If he were able to speak what would he want to happen?

I find the telegraph paragraph above provides me with a few more difficult questions. Would I have preferred Damian to die quickly and possibly alone? Would I have been ok that I never got to say goodbye? Or, whilst those days in intensive care were horrific, did they provide me with a way of spending a last few days with Damian?

Actually, if they had stopped trying to treat him that first day, moved us to a side room and gave us all time (he was on life support) to say goodbye I feel that would have been best for both me and Damian.

Instead we said goodbye the first few times they came and told us there was nothing more they could do…after that it became too distressing for me, and I was worried that as they said we should talk to him cos he could probably hear us, he too would be getting upset with us ‘giving up’.

I called my Mum and told her the doctors said he could probably hear us but I didn’t know what to talk to him about, my Mum told me to just say all the things I had ever wanted to incase these really were his last days… I stayed with Damian that first night alone and did what my Mum said…probably one of the most important things someone has said to me my whole life…

5 days after his heartattack I went home. I intended to go back the next day but around 7pm I spent sometime on my own with Damian and I said goodbye. Home was too far away for me to dash back if something happened to him so I couldn’t leave without knowing I had said it ‘just in case’. It was the most important moment of my life. He had lovely rosie cheeks and the nurse I had got to know very well had shaved him earlier so his face was so soft.. there were beeping machines, wires all over the place, nurses checking stats etc…but to me it didn’t feel like there was anyone or anything else there. It was also the most heartbreaking moment of my life.

The next day, before I left for the hospital, his Mum called to tell me they were running some tests and that we couldnt be with him whilst he had them so she would call me when I could go up and see him. Later that day she called, but it was to tell me that Damian had been declared brain dead. They believe a clot travelled to his brain at some point within the last couple of days. To be certain they scheduled the test to be run again the next afternoon.

Damian’s heart began to stop in the morning of the 18th June 2005 and he passed away, before the tests, and shortly after 11.30am. He was 30.

I will always believe that, after my goodbye that Thursday evening, that was when the clot travelled to his brain…I have felt ever since that evening that he knew when to say goodbye too and though he could not speak and hadn’t moved for days he signalled to me that it was ok for me to leave him…maybe I sound crazy?

Here I am rambling on! But just those few words at the start of that article brought all this back to me in an instant.

The next paragraph in the telegraph article says…

“Ten years ago, that was how too many people reached the end of their lives – in hospital, as a failing body, plumbed into machines, with staff doing their best to cope, but with no guidance on how things could be better. But today the way in which many hospital patients are cared for has improved enormously – and death is being treated as the natural end of life, rather than a failure of medical technology.”

I have experienced the death of both a sudden trauma patient and observed as an ‘outsider’ a terminally ill patient…Damian died just over 4 years ago, Rose died almost 3 years ago…So the NHS weren’t letting us down 10 years ago but at the latest 3 years ago and I have been made aware of other very sad final days since then…maybe one day someone somewhere will write guidance which is followed by all and does right by each individual patient and their loved ones…maybe…

Damian

1975 – 2005

I wasn’t impressed when he came running in with the bird in his mouth and dropped it under my desk…I was even less impressed when I realised it was still alive but obviously injured I sent Archie back out and put on 3 layers of plastic gloves so I could pick the bird up and put it in a little nest I had made for it…he seemed to be a bit injured but not sure how bad I’ve made a hole in the box so he can get out and taken him into my garden (where Archie never goes)    in the hope that he will either fly away or go up to birdy heaven…

Presents from cats are rubbish

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My first Blue Ribbon on DPChallenge

The start of my path…actually, that’s all the steps there will be and I’m still undecided about the stones I will be using around them. I’ve also put the soil I had into the bed on the left, it barely covers half of it!!

View of the path from my seat

Looking at my new raised beds from my seat

View from my garden gate

During:

Completed:

My first bug:

The first bed is done:

Now I’m just waiting for the turf lifter and my new raised beds:

11th June 2005

Never in my wildest dreams could I have seen this coming. I only spoke to you this morning and you sounded a lot happier. When I didn’t hear from you at 9pm I gave you a call but you didn’t answer, I thought maybe your water tablets were working again!! Tried you again a few minutes later and when you didn’t answer I paniced. You were so well compared to a few days before, when I rang the ward the staff nurse said you were being taken to ICU, they couldn’t tell me what had happened but I already knew it was bad. By this time it was 12.30am, I called ICU and spoke to your Mum, what a weird conversation that was. I wanted to get to you right then but trains weren’t running and Mum had had a drink so couldn’t drive me. I went to sleep at about 1.30am and prayed that you would last the night. I wanted to hold your hand and tell you that I love you…

11th June 2006

9am, 1 year ago today, would be the last time we would ever speak. You sounded so much brighter, you were feeling so much better, if only I had known then I would never hear your lovely voice again (

Words can not begin to explain how lonely life has felt without you ( So many things have happened since you entered hospital on 5th June last year, all of them would have been that much easier if you had been here, if I could have talked them through with you.

I have been blessed with MBF, J, A, P and G. Without them I wouldnt be here now. They have been so kind to me and helped me to cope since you’ve been gone. But they will never be you (

I am writing this late on Saturday night (or early sunday morning I suppose) I have felt like I was on holiday today. The new flat has a balcony and with the door open its felt like an apartment in the Canaries or something, plus I remembered to put suncream on so it even smells like holiday!! I met some nice people when I was out at the football, I am pleased I pushed myself to go, you’d have hated the heat but the atmosphere was great….game was less great but, we did win!

I just wish you were still here to share life with me. The love, laughter, tears and joy you brought was abruptly and cruelly taken and has left my heart in pieces. I want to understand why you had to go but know I never will (

Before this all becomes too much for me I will sign off (for now) but know sweetheart that there isn’t a day goes by that I dont think about you and wish that I could have you back.

I love you today and always XXXX

11th June 2007

There are times in life when you wish that things would move quicker but, there are other times when you can’t believe that life dare move so fast! It’s difficult to really understand that it has been 2 years since this terrible journey began.

Reading back through posts like those above enables me to see how much I have been through in that time and also shows me that even on days like today when I don’t feel it, I am doing ok!

This post today will be a short one, my deepest feelings are only to be shared with Damian in my ‘special time’.

What I would like to do is take a moment to thank those who know exactly what today means and who walked with me through our week in ICU…to my Mum, C and W, to J, to A, to R the Pastor at RBC, to MBF – all of you in some way started a new journey with me on this date and I wouldn’t have made it to today without your love and support.

Thank you, all of you {{{HUGS}}} xxx

11th June 2008

Funny, it only seems like yesterday. I’d still just like to be able to stop the world for a moment and try to get to grips with all that has happened since this day 3 years ago.

I don’t have much to say today, I am finding things difficult at the moment and don’t seem to be able to find the right words to say properly how I am feeling.

This past year has been another one full of so many ups and downs. I’ve been to Germany, Snowdonia and the Isle of Mull (twice). I’ve had good health days and some really bad health days. I’ve made some great friends, lost some old friends, refound an important old friend and moved house…I am sure there are many more things!

Throughout everything, as well as my Mum, brother and sister, there has been one other constant in my life since June 2005. MBF, thank you for sticking by me and supporting me through everyday since then XxX

Tomorrow I will return to St Thomas’, exactly 3 years to the day when I headed there to see you. This time I am returning for the results of extensive tests and I am hoping to know for certain whether I have MS, Lupus or something totally different. So it’s going to be a day full of mixed emotions I am sure.

However, no matter where I am or what I am doing you are always in my thoughts Damian, I don’t think that will ever change, and days like today will always be full of happy and sad memories of you xxx

For Damian

11th June 2009

Looks like I say this every year, but, I can’t believe how fast time seems to go. So many things have changed this past 4 years.

MBF is here today and we are planning to head to the coast for the day. It’s also C’s birthday. We had come home from dropping her at the airport this day in 2005 when my world flipped upside down. Having not heard from you at the usual time it took quite a few phonecalls to find out what was happening with you…

4 year’s on C is 25 and will be a Mum sometime in the next few weeks! That will make me an Auntie…how old does that make me sound!!

These posts get harder and harder for me to write as the years go by. I don’t really know what to say

A few days ago I managed to catch an episode of ER that I had wanted to watch for ages…in hindsight I should have read the reviews before watching…instead I spent much of the last half an hour in tears. Whilst the cause and type of injuries aren’t anything like what you went through, the tests and outcome are so close to what happened I couldn’t help but relive those last few days…

Here’s a Youtube video of the scenes I am talking about…

Still miss and love you Sweetheart xxx

Archie has only recently started going outside but he is loving every minute of it! Today he decided to go and play in the long grass in the garden outside my lounge (not my garden).

It’s lovely to see him enjoying himself

So, why is life so busy? As many of you know I launched the UK’s only information website for high grade brain tumour patients, their families, friends and caregivers at the start of March and things have been going from strength to strength. BT Buddies is receiving around 2,500 new visits a month and was awarded Cancerbackup’s website of the month in April.

For the last month I have taken on the task of putting together a website for anyone affected by a low grade brain tumour with a wonderful and extremely well respected lady within the world wide brain tumour community. The site will be launched on Monday 1st June and we hope it will help those seeking information on any type of low grade brain tumour.

Following the launch we will then be both working on a Paediatric Brain Tumour information website which we hope will be ready by the end of 2009. That will then see us producing the highest quality information for anyone affected by a brain tumour in the UK.

Add to all of this the request from the Association of Neuro-Oncology Nurses for me to produce a website for them and I am sure you guys get an idea of whats keeping me from blogging these days!!

So, that takes us to 4 sites so far, I think? But there are two more…

We will also have 2 fundraising websites! The one you all know about is RoseBuddies and though things have been quiet lately we have been busy at work behind the scenes.

On November 1st 2009 our ‘Book of Hope’ will go on sale. The book includes images from photographers around the world and quotes from them on their idea of hope. All proceeds from the sale of the books will go to providing Patient Resource Handbooks for newly diagnosed brain tumour patients and Treatment Records so that patients, their families or carers can keep a record of anything from blood test results to questions for doctors appointments.

Another very special fundraising project that we have been waiting a longtime for is finally coming together. We hope that in time for Christmas we will have on sale some of the jewellery Rose designed before she passed away.

Towards the end of 2009 we hope that we will become a registered charity ourselves and we will then publish a mission statement to make clear how the funds we raise will be used to help those affected by a brain tumour in the UK.

As well as all these things we have many events planned for International Brain Tumour Awareness Week from 1st to 7th November…I’ll try and update you on those nearer the time!

I think that’s pretty much all as far as the charity and information ‘work’ goes!

At the start of May MBF and I went to see the bluebells near where I live, it was a lovely day and they really did look beautiful…

After our day in the bluebell woods we also had chance to go and take some photos of my sister. She is 8 months pregnant with her first child…and my first nephew

She had wanted some photos of her ‘bump’ but didn’t want her face in them! So, this was taken whilst she was sitting down ‘resting’ between shoots…she’ll kill me when she finds out I took a sneaky one with her face in!

Not long to go now till she gives birth and I think the whole family is very excited!

My younger brother will be leaving at the start of August to go to university in the US and whilst we are all very proud of him I know we will miss him like crazy. Hopefully the baby will be a little distraction until my brother returns for Christmas

I had my latest appointment with the Lupus consultant this week and have added another autoimmune disease to my list. Secondary Raynaud’s Syndrome – http://www.medic8.com/healthguide/articles/raynauds.html. But I am plodding along and hoping all the positives happening for me right now pull me through the crappy times

Right, I think that is definitely all my news! Off to watch the Britains Got Talent final results now…

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Hardly had time to pick the camera up this month but tried to take a bit of time out yesterday to take some shots of my flowers before they past their best!

Archie by MBF 11th April 1009

Sorry I have been neglecting my blogging duties, it’s difficult to find the time these days inbetween migraines, BT Buddies and 4 other projects I am working on! Sometimes life just gets in the way a little!

BT Buddies

So, where should I start this update? Well, BT Buddies is halfway through it’s second ‘live’ month and we are going from strength to strength.

Things got off to a great start when we were chosen as Northeast Center for Special Care’s website of the month…

Press Coverage

And our launch was featured in various places up and down the country and across the globe…

Kent and Sussex Courier

The Advertiser 24

Eastern Daily Press

Virtual Trials

Pensive Ramblings Podcast

Community Newswire

Positive Change

Lancashire Evening Post

You can see their write up about the BT Buddies website by CLICKING HERE!

Moving on from the BT Buddies stuff, MBF, R and I are now working on 3 new websites which I will be able to tell you all more about in the next few weeks! I am very excited about the projects and hope things start taking shape very soon!

RoseBuddies

As well as managing BT Buddies and creating the 3 new websites I am also working on our fundraising ‘event’ for 2009. As the BritBallRun will not be taking place this year MBF and I have decided to do something a little different in Rose’s memory this year. We are currently putting together a book of images and words about hope. Doesn’t sound very exciting when I say it like that but we are really looking forward to finally seeing the hardwork of photographers from around the world as we piece the book together.

You can read more about the book project on our fundraising website and if you’d like to take part please read the ‘Information for the Book of Hope Photographers’ to find all the details we need from you along with your image Entries have to be with us by May 1st 2009.

Life…

I am sort of getting to grips with the surgery news, next week I am hoping to get measured up for some sort of support brace type thing…hopefully it won’t be as horrendous as ‘the boot’ especially as I’ll be wearing it permanently! I also have an appointment with my Orthopaedic Consultant at the end of the month but I think that is just to confirm I won’t be going ahead with the surgery.

A couple of weeks ago I went up to Leeds for a few days to attend some BT Buddies meetings and catch up with family. Unfortunately the day we travelled up there I was having really bad pain on the right side of my head. Since then things have been a bit ‘rocky’ as far as my headaches and stuff go and I seemed to be having more bad days than good at the moment I don’t know how I manage to find the time to (or energy) to keep all the projects going some days

Fatigue is also one of my biggest hurdles when it comes to trying to lead a ‘normal’ life. I say normal, however, it’s really the new normal…rewind almost 4 years ago and I would never have thought I’d be an almost 29 year old ‘widow’ with Lupus, Hughes Syndrome and a permanently broken left foot which makes me walk at a snails pace with two walking sticks!

Moving swiftly on…

MBF visited for the Easter break which was really nice. We always seem to have so much to do during his visits so it was nice to get a bit of extra time together to just chillout

We did go out for a few hours to see the Deer in a park near here. They were very tame and we even saw some people feeding them!

Deer, Knole 11th April 2009

Sadly the weekend passed far too quickly and both Archie and I were sad to see MBF go Archie is so well behaved when MBF is here, he even sleeps next to him sometimes which he never does with me!

Well, that brings you all up to date I think! Now I really should get to bed…

Archie sleeping on the sofa!

At my meeting before my operation with my surgeon I informed him of my diagnosis of Hughes Syndrome. Without hesitation he said there was a high risk, because of Hughes and because I have had a previous DVT, that I could die having surgery today. There would also be significant high risk of another DVT or worse a pulmonary embolisim for the 3 and a half months my leg would be imobolised.

My surgeon, Mr Ritchie, said he was unable to make the decision for me but that I needed to think whether or not the pain I have is worth risking my life for. I asked him what he would do and he said he would NOT have the surgery. Needless to say by this point, especially as I was on my own, I didn’t know what to do and was in a bit of a state.

Mr Ritchie said I had about an hour to make my decision.

I called my Mum who didnt know what to do. I called my Dad who was just concerned that I would be on disability benefit for the rest of my life if I didn’t have the surgery…I was getting no clearer about what to do.

Then I spoke to MBF and he said he wouldn’t go ahead with it, the first person to offer me a decent answer.

After speaking to MBF I called the Lupus clinic and spoke to Professor Hughes, the guy who Hughes Syndrome is named after, and he said he wouldn’t have surgery unless it was a matter of life/death.

I also had a wonderful call from the other side of the world….thank you R for talking to me and giving me your opinion x

I then spoke with the surgeon again and got my Mum to chat with him as well…not that that was much use as Mum still didn’t know what to do and my surgeon refused to sway my decision either way.

I asked what else could be done if I didn’t have surgery and the answer is nothing Not even physio. I will probably walk with 2 walking sticks/crutches for the rest of my life

So, we are going to look at a special brace which would come about half way up my lower leg and will support my foot like the aircast boot did. It’s made by the same people and has a puffer thing to inflate/deflate depending on how my legs feeling. But, unlike the boot, I can wear a shoe over it (one foot will always be bigger than the other LOL).

I am also going to consider going back on crutches instead of walking sticks as that makes things easier and makes me walk slightly quicker (still not as fast as normal peoples slow pace though lol). I am looking for foldable ones with nice handles…found some which I like for £90 but will keep looking incase I havent found the best yet!

So, to cheer everyone up, here are some photos I have taken over the last few weeks…

Liverpool Metropolitan Cathedral…

Flowers…

The next couple of weeks are going to be pretty busy for me. BT Buddies, the website I have been working on for a few months now is almost ready to be launched. Press releases and leaflets will be going out from 1st March 2009 – in time for the start of brain tumour awareness month – and hopefully those that the website is for will hear about it. Then I have a couple of days in Liverpool attending meetings and getting together with some other photographers before my surgery on Monday 9th March 2009! Busy, busy busy!

And last but my no means least…

Congratulations to Anna and Chris on the birth of their lovely baby girl, Alyssa. I am so pleased for you both {{HUGS}} x

Happy Valentines Day XxX

As you may have gathered, my PAD has failed early on LOL Ill health and too much charity stuff is keeping me busy and I dont have any spare time between sleeps to take many photos. Quite like this tulip though as the detail in the petals has come out really well

I am currently moving my websites to a new server so we are busy working on solving problems before the proper launch at the start of March. I’ll share it with you all when I know all the problems are fixed lol

Still not feeling 100% and neither is Archie. The vet now thinks he has asthma and he had a bad time this morning but seems to be better tonight and is back eating again, I hope the problems dont last long for him cos its not nice to see him struggling

6th February 1975 – 18th June 2005

Here we are again, time seems to be passing way too quickly. It doesn’t feel like nearly 4 years since you left and I can’t believe you would be 34 today, you old git!

As time passes I’m not sure whether to celebrate your life or mourn your death on days like today, I suppose that I do both. To think of all the things you didn’t get to do can be upsetting but remembering all you did and the way you did it always makes me smile.

I read the following words in my memory book quite often as they capture your personality so well…

“…He was animated, caring and loyal, with a strong sense of fair play and justice. Always determined to get things right, but tolerant of other’s failings.

He was funny. Sharp, witty with an uncanny empathy for friends and colleagues. I personally shall miss his ability to gently mock my latest big idea, while believing passionately in its execution.

A man of simple passions; but simplicity born, not of dullness or ignorance, but a deep resonating simplicity born of personal tragedy, self knowledge and humanity. Having found his life, he loved it and lived it as brightly as possible…”

For some reason I don’t have the words today to explain things very well, so, I will share this video and the lyrics as they say how I’m feeling better than I can….

To Where You Are – Josh Groban

Who can say for certain
Maybe you’re still here
I feel you all around me
Your memory’s so clear

Deep in the stillness
I can hear you speak
You’re still an inspiration
Can it be
That you are mine
Forever love
And you are watching over me from up above

Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile to know you’re there
A breath away’s not far
To where you are

Are you gently sleeping
Here inside my dream
And isn’t faith believing
All power can’t be seen

As my heart holds you
Just one beat away
I cherish all you gave me everyday
‘Cause you are my
Forever love
Watching me from up above

And I believe
That angels breathe
And that love will live on and never leave

Fly me up
To where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile
To know you’re there
A breath away’s not far
To where you are

I know you’re there
A breath away’s not far
To where you are

I had planned a trip to go and see D with MBF this weekend but sadly I am not well enough to go now I am disappointed as over the last few weeks he has been on my mind a lot and sometimes I just get this urge to visit him. I like it there, if you can say that about such a place. There is a nice field and pond at the front and it’s nice to sit by the water for a little while and collect my thoughts. Hopefully once my surgery and stuff is done we’ll be able to take a trip to see him instead….

Thanks for reading all

I feel quite sorry for him but sadly Archie has allergies and when things are irritating him he scratches his ears. They have got bad recently so we’ve opted to stick this collar on him and I’m hoping his ears will heal and the new medication he started will have time to kick in This shot was taken a few minutes ago on my camera phone, he’s fast asleep

Well, they cheered me up for a moment. Might try to take another shot of them tomorrow when they are open