18th June 2009
June 18, 2009 at 4:04 pm | In Damian | Leave a Comment
6th February 1975 to 18th June 2005
that can never be filled
But in my heart, there is hope
and you are with me still
Always there, never gone
Precious one, you left too soon
Though it may be true, that were apart
You will live forever, in my heart
God knows I want to hold you,
see you, touch you
and maybe there is a Heaven
and some day I will again
Please know your not forgotten
Until then…
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…
“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.”
4 years on…
June 11, 2009 at 1:33 am | In Damian | Leave a Comment
The posts below were written by me on this date in 2005, 2006, 2007, 2008 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
Archie Enjoying the Sunshine…
May 31, 2009 at 3:10 pm | In Cat | Leave a Comment
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 
What have I been up to?
May 30, 2009 at 9:40 pm | In General | 1 CommentThere just aren’t enough hours in the day any more so sadly my blog has had to be put to one side I am going to try my best to post here once a month just to try and keep you all up to date and if I fail you have my permission to shout at me 
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…
April 27, 2009 at 10:42 am | In General | Leave a Comment
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!
It’s been a while…
April 16, 2009 at 1:30 am | In Cat, General, Lupus Stuff | Leave a Comment
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…
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…
The worlds most relaxed cat…
March 27, 2009 at 12:07 am | In Cat | Leave a Comment
Archie sleeping on the sofa!
My surgery…or lack of it!
March 16, 2009 at 1:25 am | In General | 1 CommentOn Monday 9th March I was scheduled to finally receive the operation I have been waiting over 3 years for.
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…
Pre-op assessment and other things
February 19, 2009 at 7:41 am | In General | 1 CommentIn a couple of hours I will be heading to the hospital for my pre-op assessment (again). Fingers crossed the pleurisy and pedicarditis doesn’t cause any problems…I am feeling better and just hoping they dont postpone my surgery because of them.
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
Toolip…again!!
February 12, 2009 at 12:49 am | In Cat, General | Leave a Comment
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
Happy Birthday…
February 6, 2009 at 12:01 am | In Damian | 2 Comments
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
Poor Archie…
February 4, 2009 at 10:43 pm | In Cat | Leave a Comment
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
Cheer up Tooolips
February 3, 2009 at 9:10 pm | In General | Leave a Comment
Well, they cheered me up for a moment. Might try to take another shot of them tomorrow when they are open
PAD 2009 – Day 16 (Kitchen Revisited)
February 2, 2009 at 8:11 pm | In PAD 2009 | Leave a Comment
‘Tea P’
PAD 2009 – Day 13 (Kitchen Revisited)
January 26, 2009 at 8:38 pm | In PAD 2009 | 1 Comment
Now this one should be easy for you all! Any guesses?
Slowly catching up with my editing…I WILL have January done before February starts LOL
Remembering Rose…
January 26, 2009 at 1:42 pm | In General | Leave a Comment
26th January 1984 – 11th November 2006
PAD 2009 – Day 12 (Kitchen Revisited)
January 23, 2009 at 8:11 pm | In PAD 2009 | Leave a Comment
Thermal Cup
PAD 2009 – Day 11 (Kitchen Revisited)
January 23, 2009 at 8:08 pm | In PAD 2009 | Leave a Comment
Egg Cup
PAD 2009 – Day 9 (Kitchen Revisited)
January 22, 2009 at 10:15 pm | In PAD 2009 | Leave a Comment
‘Almost time’
PAD 2009 – Day 8 (Kitchen Revisited)
January 22, 2009 at 10:11 pm | In PAD 2009 | Leave a Comment
‘en egg ti’
New Surgery Date
January 21, 2009 at 1:00 pm | In General | Leave a CommentI went to see my MP again on Friday to let him know that I am still waiting for my operation and amazingly the hospital called me yesterday to say they had a date for me! I should be having surgery on Monday 9th March…fingers crossed it actually happens this time!
I keep apologising for not getting the rest of my PAD shots posted….I will post them shortly…I need to nip to the shops today and will no doubt be tired later so I’ll say I will post them over the weekend and that gives me plenty of rest time lol
Another quick post…
January 20, 2009 at 1:39 am | In General | Leave a CommentA couple of days ago a friend of mines wife, Monica, was taken to hospital with what they thought was the sickness bug that seems to be doing the rounds here. After various tests they received bad news yesterday, Monica actually had blood poisoning. Throughout the day she became much worse and sadly passed away Monday morning around 1am
She leaves a husband, Terry, 2 children and 2 grandchildren – 1 grandchild has just recently been born. As you can imagine the family are devastated. Your thoughts and prayers for them all at this difficult time would be much appreciated.
Quick post
January 18, 2009 at 12:20 am | In General | 1 CommentI will try and post the rest of my PAD updates tomorrow but just wanted to ask for your thoughts and prayers for MBF. He is having a tough few days so any support you guys can give would be greatly appreciated.
I’ll post more tomorrow night, thanks all
PAD 2009 – Day 7 (Kitchen Revisited)
January 15, 2009 at 7:32 am | In PAD 2009 | Leave a Comment
Whoops, I meant to tell you all that Day 5 was a flattened wine bottle that had been made into a cheeseboard! It’s from Australia (I think), tends to just decorate the kitchen and has very little use!
Any ideas what might be inside this item?
PAD 2009 – Day 6 (Kitchen Revisited)
January 15, 2009 at 7:29 am | In PAD 2009 | 1 Comment
I am slowly working my way through the images now I have a raw converter on my laptop! I hope to be upto date with the edits today!
I’m trying to keep you all guessing at what these items are from my kitchen…your thoughts on this one?
PAD on hold!
January 6, 2009 at 7:42 pm | In General | 2 CommentsWell, my PC has decided to die on me overnight so for the time being there will be no PAD…not until I can get working out how to edit images on the laptop!!
I’m also feeling really low. I am sleeping most of the time and when I do manage a few hours awake I just can’t seem to function properly Not the best start to the new year
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