My life on a plate! A place where I get to waffle on about anything and everything, and hopefully raise some awareness about Cystic Fibrosis and organ donation on the way.
Saturday, September 29, 2007
*Warning this post may well bore any male readers*
I went shopping with some girlies today for wedding make-up. I don’t wear much (not base stuff anyway) so was at a bit of a loss where to start. I sat myself down at a well known brand’s counter and asked for “something that doesn’t really look like anything” (mmm coherent.) Anyway skipping quite a lot of colour matching and testing, I walked away with my first ever foundation. Ever.
Does that make me a real grown-up now?! The woman asked what my usual regime was and I was too embarrassed to say “er nothing skin has been the least of my worries” so I made it up. My friend whispered “why don’t you just say I’ve been ill?” but I suddenly went obscurely shy. Strange for me I know, as usually I will take the opportunity to tell anyone and everyone, but for some reason, wedding related stuff has bought out a new slightly more demure side of me (ha, A will be lucky if that lasts for the wedding itself).
When you are so poorly that sitting up takes incredible effort breathing wise, make-up hair and beauty tend to go a little neglected (except for when rather lovely cheering squad members paint your toenails/do you hair for you). I felt this new step into vanity was yet another indication of my transfer into the norm, I suppose I am still shedding elements of the ill me bit by bit, and I am not sure how long it will continue. I can see it going on a while as there are still lots of firsts to come.
I definitely care more about my image now. Actually I didn’t not care, but it’s just I felt too poorly to really enjoy putting on nice clothes etc. It’s so nice to be browsing the shops, looking for clothes which are pretty rather than what is comfy, what will allow me breathing space even when come evening I feel so out of puff I feel restricted in anything and everything.
That energy I had lost isn’t just useful for investing in sponsored walks and campaigning. It’s in doing all the little things again, those things which aren’t essential but are fun. Even taking a long bath is back into my regime, although I still get out sooner than I need through a subconscious fear of getting exhausted.
Speaking of which I am off to immerse myself in gorgeous hot bubbles...
Thank you for your lovely messages and emails of support, as always you are a rather lovely bunch. When writing our campaign blog on myspace I entitled it “down but not defeated”. Life can be hard, but if I had let that stop me in the past I wouldn’t still be here. Plus it’s always harder for someone else, for example Robyn’s family and closest friends, and they are still going. I continued to feel quite down after writing that blog until Saturday when I sat with tears streaming down my face with A trying to soothe me. I spouted a rather childish “it’s not fair” followed by “I couldn’t save her” both of which were somewhat daft things to say. As always (annoyingly) A was very logical about the whole thing, pointing out gently that it doesn’t matter how hard I campaign, I won’t be able to save everyone.
That’s the key thing really isn’t it? If I want to pursue this as a line of work (and I do, I love helping people and I think I’m quite good at it) then I need to be able to cope and carry on. Also it is extremely important that I take that vital thing that Robyn’s mum said away with me; remember how precious your life is, and use that to ensure I keep a good balance.
On Friday night I went out to celebrate two 25th birthdays. As I was sitting chatting to my friend I realised the last time I had been present at one of her birthday celebrations was her 18th. After that she went to uni, then I went, then I was too ill. Yet now I was able to go along and celebrate with them and eat a rather huge burger from the Gourmet Burger kitchen which I made such a terrible mess of I had to carve up with my knife and fork to salvage it. Saturday night I was out again, this time up in Covent Garden sampling various cocktails.
My daddy and I went shopping late last night (I had to get petrol and milk and it was dark and there were wolves after me etc) and as we walked out of the supermarket having dashed around to get a few bits my dad said “do you ever stand there in the queue at the checkout and want to turn round to the people behind you and say “this time last year this would have been impossible!” it’s funny, I often get that feeling, it’s more whenever I suddenly realise I am doing something for the first time or something that would have taken so much effort and been so draining. I want to turn round and squeal “look at me I did it!!” and shout out with glee (the word glee is not used enough in my opinion).
For me life is good. I am lucky, am here, am alive, am living it. So I am getting off the computer and going out now to enjoy it some more. Have a great day.
Robyn’s funeral was yesterday. It was a beautiful ceremony, but I was just filled with aching sadness throughout. I was determined to be brave but as soon as the cars pulled up the tears started to flow. I was on my own but a few of her friends were fantastic and looked after me, in spite of their own grief. Her family were indescribably brave, filled with dignity, coming over and saying hello, and even thanked me, when all I felt is that I failed.
I am fully aware that I could never have saved Robyn all on my own, but I think with Live Life Then Give Life’s recent successes (Peter, Lisa, myself) I have been on a bit of an over confident streak, that things have turned around. Losing Robyn was a blow to us all, and watching all her friends yesterday clearly a shock to everyone who knew her.
On a truly personal level (this is my blog so if I can’t state it here where can I) two new things happened today. For the first time I experienced survivors guilt. Watching someone who could have and should have been in my position, been where I am standing now. It coursed through me, stinging from head to toe, why was I still here when Robyn wasn’t? It made me ache and her family’s gentle kindness made it even more so.
The other peculiar thing was that I got to see my “alternate ending”. This is what would have been the end of my story if it wasn’t for that one person making a decision. I couldn’t help but relate things I saw back to myself – the friends, the parents, the long-term boyfriend – and it was strange seeing what could have been.
I came home cross and tired. Cross with myself, cross with life, still tearful at the loss of a life that need never have gone. I ached for her family to get her back, for this to be some sort of Hollywood movie where then they turn back time and show what can happen if you change things, but Robyn is gone, another life lost due to the shortage of organ donors.
As I left, Robyn’s mum hugged me and as she was squeezing me tight whispered “don’t forget how precious your life is.” Which will be the key thing I try to take away from yesterday and I hope blog readers will too.
I woke up bright and early raring to go. Long-suffering A was forced out of bed on his only day off to make me beans on toast (figured I probably needed something a bit more substantial than a cereal bar) and I in the meantime spent an inordinately long time donning my pinkandsparkly fairy costume.
I drove my grandma, (who in a fit of madness had signed up to walk it too) and grandpa up to Hyde Park, and complete with rather large and glaringly pink banner, we walked up the road towards the main gate. As we reached the meeting point, I could already see clusters of pink winged people and other bright yellow ladies (CF Trust T-shirts) I got a round of applause as I arrived and whooped appropriately in return.
After some meet and greeting plus plenty of posing for photos I hollered at the Angels to head towards the starting line as it was by this time 5 minutes to 11. We trouped across the field, me leading the way (ON FOOT still can’t believe it) and squeezed onto the track to join the other 20 000 odd ladies who were eagerly raring to go. Events like this are just such amazing examples of human spirit. People walking for loved ones, for those they have lost, for those that have overcome adversity…I just love the atmosphere.
We were whooping with glee as we set off, helped somewhat by the rather nice group of armysoldiermen who were waving at us from a balcony. I quickly lost interest in carrying the huge banner I had made and my ever faithful Angels took it in turn to carry it (mum swooping in if ever a camera came into view).
It was gloriously sunny with a strong breeze; fantastic for keeping cool, not so fun for those carrying the banner and trying not to take off. First k was fine, and the second, then pain round my ankles began to kick in. I could feel the fluid swishing around (mm) and my ankles tightening as they inflated even more. I was determined to keep up a good pace as after all this is supposed to be a challenge; so many wonderful people had sponsored us I felt I really had to keep going briskly to make it worth their while.
As we approached 4k my legs ankles and feet were really beginning to hurt. To keep myself going I just remembered how last year it had been my entire chest and my lungs aching and burning, and how incredibly lucky was I just to have dodgey fatfeet this year instead of tiny fading breathers. Seeing I was struggling a bit Lucy gave my hand a good squeeze; nothing said but enough done, I knew I would get to the finish.
In the final k we approached a slight incline, various angels getting behind me to give me a bit of a helping hand! Then suddenly I could see the leafy shaded corner and had a flashback to seeing my two grinning physios waving me over to get me out of the chair exactly a year ago.
We turned that final corner and were hit by a wall of cheers; people lining the edges of the course shouting and encouraging everyone on for those final 500 metres. We moved ever closer to the finish and I couldn’t suppress the joy that was bubbling up inside me. With a rather loud whoop I broke into a run hearing “oh god she’s running!” from various shocked Angels and sprinted (well stumbled) towards the finish line.
The feeling of joy was just indescribable; what a rush, what a buzz, I just felt so alive!! People were throwing their arms around me, hugging me, squeezing my shoulders, everyone just so thrilled to be part of an event which was a million miles away from last year.
It wasn’t until we moved towards where the medals were being handed out that the tears came. Never in a million years could I have dreamt how this summer would be. Every day is so amazing, days like this even more so. I love my life so much, am so incredibly lucky, and to be able to share so much joy and celebration with so many people was just fantastic.
My ankles are still a little swollen but I feel absolutely fine. I am still grinning from ear to ear about it all, a huge well done and thank you to all my angels and lets hope the money we have raised for the CF Trust will go to find a cure and prevent children born today going through what I have been through.
Today was the hydro active. It was amazing. Indescribably amazing. A day full of emotion, desire, achievement, happiness, memory, reflection, and celebration. I was going to write a nice long blog about it all but then my mum emailed me this beautiful piece she has just written. I figured I’d let her wiggle into the limelight instead. Will blog more about my feelings on it all tomorrow, and post some pics! But for now, over to my Mummy.
"A week or so ago, I watched a TV news item featuring a couple who had won 8 million pounds on the lottery. As they were interviewed, their faces betrayed a mix of delight, wonder, disbelief and just a tiny bit of fear, perhaps that they would be taken to one side at any moment and told that it had all been a big mistake or dream. I mirrored that expression on Sunday as watched with the most enormous pride fabulous Emily with her fantastic sisters and my ever youthful 76 year old mum, complete the Hydro Active 5km challenge around Hyde Park which, just a short year ago, seemed one dream away too far.
Last September, after months of hospitalisation due to her death defying round of collapsed lungs, we wheeled her out of the Brompton Hospital for the day and pushed a weary, cold but jubilant Emily in her wheelchair together with canisters of oxygen across the grass to join over 70 friends and all round wonderful souls who had gathered to support her. Their positive energy seemed to transfer as they took it in turns (unless a camera was about when it became my turn) to wheel both the chair and the portable oxygen around the 5km. At the time I looked at that frail body and rejoiced in how well she looked that day, but, looking back, I was just trying to avoid thinking the unthinkable, that our time together was well and truly running out.
12 months later, and I had to nip and weave along the course to keep up with my smiley, rosy faced, beautiful, courageous daughter who has been given a new chance at life life that she has honestly embraced and enjoyed every single day since departing Harefield Hospital in March.
Courage however was definitely the theme of the day: Lovely Maggie whose kind, generous eloquent thoughts leave me in awe who was walking with happy memories of Gaz and amazing Sue from Newcastle who taught me a lesson in courage and depth of character when remembering Chris with such dignity and that is not to mention super mum of 3, Sarah with Wills, running with such positivity and hope. I can not mention all of you but I do want to thank each and every one of you from the bottom of my heart for your smiles and hugs and support for the irreplaceable pink fairy."
Clearly my body has assessed the effort it took to do 500metres last year, decided that 5k as I am now is nowhere near tricky enough, so has decided to inflate my feet to amusing clown-like proportions.
I got home yesterday evening from meeting some friends at the pub and my feet felt a bit strange...when I looked down they were quite distinctly, well, large. I went off to bed hopeful that they would have gone down by this morning but no such luck.
Being the responsible adult that I am I phoned Harefield first thing to explain scientifically that “my feet have gone all puffed!” My lung function has not dropped and I am not breathless which is somewhat reassuring. They asked me to go and see my GP and amazingly within 20 minutes of ringing I was down at the local surgery for an appointment.
My GP is a lovely lady; she had a look, listened to my lungs and heart and prodded my feet for a bit. So now we know that it is fluid, that my heart and lungs sound fine, but that she would like me to now feed back to Harefield and take it from there. Oh and to put my feet up.
At this point I thought it may be wise to just drop into the conversation that I will be walking 5k on Sunday (note, not should, will.) She paled slightly and stated again that I really need to confirm with Harefield that such adventures are ok with chubbytoes.
Rang Harefield again, told the nurse what the GP had said, also dropped in about the whole 5k thing to which she started laughing and said “I knew you had something going on!” and passed me on to a doctor.
I think the doctor was busy as she was rather brisk, merely said to put my feet up and rest. When mentioning that I am going to walk round Hyde Park she said “oh, well 5k is quite a long way. Hmm. Just do what you feel you can do.”
The latter sentence was her biggest mistake. Bring on Sunday. Although at this rate I will have to do it in flip-flops as I cannot currently get any shoes onto my large clown feet...
If you read this post here you will know who I am talking about. Robyn was a beautiful, petite blonde smiley young lady. Incredibly clever she was working on her Masters whilst battling her CF and waiting for her transplant with a positive and cheerful smile on her face. We were working together on a relationships study for people with CF in the hope that we could produce some sort of help booklet at some point. We chatted via msn and via text, rarely by phone as she didn’t really have enough puff – it’s funny how someone you never see in person can become such a good friend.
When Robyn spoke at National Transplant Week this year you could have heard a pin drop. When she got so breathless someone had to take over, the impact was clear. She volunteered to talk to the media for us to try to get the issue of transplantation an even greater profile. She was on GMTV for Transplants in Mind and was their poster girl for this year’s campaign (click and click).
On Tuesday afternoon Robyn lost her fight to CF. I’m just terribly terribly sad; for her, for her family, for her lovely boyfriend. She waited over two years, she remained positive, but that call never came. For me it’s an even greater reminder of why we continue to campaign and also why I am walking on Sunday in aid of the Cystic Fibrosis Trust. She never let CF dictate her life and will be greatly missed by an awful lot of people. Thinking of her family and friends at this sad time.
I did the Harefield fun run yesterday, although for me it was the fun walk. Actually it was just walk. No it was alright really. Contrary to what my mum or A may tell people I did not whinge all the way round and abuse various members of my family due to being made to complete the course ("just to see that you are ok to do the hydro next week.") I didn't make unreasonable threats on their lives either. Honest.
I do have some rather lovely photos but my camera has misplaced itself (I refuse to take any responsibility for it's naughty wanderings). Peter and his wife and kids were there - it was amazing to see him up and walking! You see a pic of his gorgeous children here.
But the good news is I am so so ready for this Hydro....it won't be very fast but I am confident I will make it. Bring on Sunday! YAY!
Yesterday morning I woke up with a familiar scratchy sore feeling at the back of my nose and throat. In the groggy early morning hours (genuinely early, not nearly-midday-early). First thought was a mild despair of “oh no here we go straight onto my lungs and in for IVs” until I remembered that these lungs aren’t quite as naughty as their predecessors, so this may well not be the case.
Then my brain decided to go into overdrive on the imagination front. “It’s my first cold since Transplant. I am immunosupressed. OhmyGOD this cold virus is going to invade my body and take over everything”. Nice rational stuff like that.
I took my temperature every few hours yesterday and did my lung function twice. No change. Same sort of regime this morning but despite trying not to be too neurotic I finally decided to ring Harefield “just in case”.
Me: “Hi can I speak to one of the nurses please? V Lovely Nurse: “Yes how can I help?” Me: “Erm, I have a bit of a head cold” VLN: (probably wondering what this has to do with hearts and lungs) OK...” Me: “Erm, well it’s my first cold post transplant, and, er I was just wondering if I needed to do...anything...” (trail off feeling a little thick) VLN: “OK well have you checked your temperature and lung function?” Me: (proudly) “Yes several times and both are fine.” VLN: (reassuringly) Excellent well you are doing all the right things, just keep an eye on it and let us know if anything changes.”
So you see having numerous collapsed lungs, pneumonia, septicaemia, low enough oxygen saturations to kill, well, anyone really, and a rather major operation does not necessarily make one any less of a worrier about the small things. I shall try and behave less like a man about this now and remember I am still allowed to feel a bit run-down, just like anyone else...
I did another talk on Thursday night, at a local Rotary club. I was there on recommendation from someone who had heard me talk before. They were a lovely group, and welcomed me warmly when I arrived. Some additional people had come along, after hearing I was speaking, which surprised me until I learned that they had a child with CF. I was a bit worried then, my talks are hard-hitting and made to make people remember just how devastating CF can be, because without this awareness of the more severe end, how can anyone expect people to decide to work hard and raise money and awareness?
Anyway I approached the parents prior to starting, reminded them that I was about to go into depth about “my end” of CF. They were lovely, said they fully understood, and the mother simply said she was honoured to meet me having watched me on TV many a time (which a)made me all embarrassed and b) was a reassurance as she clearly knew my rough history).
The talk itself went fine, I had one eye on the clock as otherwise I am absolutely awful and just keep talking till someone shuts me up. Afterwards I went straight to the mum to check she was ok and she just burst into tears hugging me. I felt rather bad then, although she was protesting that she was just moved because she said it was powerful. It’s such a terribly hard balance, I know she was perfectly aware what angle I was coming from but it still feels a bit like rubbing salt in a wound (wrong metaphor there but I can’t think of what I want to say). I gave her my card and told her to contact me if she wants to chat about anything; I hope she will. After the talk everyone who hadn’t raised there hand when I asked who was already on the register took a leaflet, some took several for family members as well. I have two more talks in the pipeline and another stemming from this too; I do enjoy doing it and I meet such lovely people.
I walked over to my parents this afternoon; apparently it is just over a mile which is about 1/3 of the distance I need to do. It felt fine, I jogged twice (for about 40 seconds a time) and I just had jelly legs by the time I got there, lungs felt amazing though. Ooh and most excitingly for me, I have a new toy. Which also now provides the capability for people to contact me direct without me giving out an email address. Woohoo! Click here to see what my rather clever friend has made me! (still under construction)
29 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007, and am now a very proud mummy.
I am very much a people person and a rather girly girl, loving all things pink! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to separate them from real ones in my head.