It's a Dogs Life

Seb has recently taken to lying on top of his kennel in true Snoopy style. He doesn't sleep outside (in case anyone was going to call the RSPCA) - the kennel is just there in case he wants shade in the summer, although he has never really used it. Andrew moved it into the middle of the patio a few weeks ago, when he was cleaning the paving stones, and since then Seb has decided this is wonderful vantage point from which he can survey the garden and beyond. He lies up there for hours, just watching and listening to ensure all is well with his little kingdom. It's a hard life for such a small dog.

On the subject of Seb, I'm seriously thinking of setting up a video camera to see what he gets up to when I leave the house. When we are getting ready to leave the house and Seb realises he is not coming, he will just climb into his basket, look a little forlorn and then curl up as if going to sleep. When we return, he is at the front door, stretching himself as it just woken from slumber. So you would be led to believe he had been sleeping the entire time you were out. Not so. We keep all the doors shut to prevent Seb poking about in all the rooms, but a few months back the dining room door must not have been clicked shut and on my return I found small pawprints all over the dining room table. I took this as a once off fluke, where he had accidentally realised the door wasn't shut properly. However yesterday, I found the study door open on my return, then today I found my bedroom door open, with a tell tale slipper in the hallway. I can only conclude that Seb waits until we leave, then jumps out his basket and goes round all the doors one by one in the hope of finding one I haven't shut properly, then when he hears the key in the lock, returns to the hallway and pretends he has been there all the time. Genius.

Anyway, I am out of hospital and enjoying being back at home, in my own bed and with non-hospital food. Andrew has been on holiday this week, so we have managed to get out a bit. Mostly to the shops, and mostly so I can spend money. The first trip involved a new pair of curtains for the dining room, which now means I need to change the light fitting, rug and maybe paint the dado rail. I might also have to move the pictures, which wont go with my new 'theme'. Funny how these things just snowball. Or is that just me?

Unfortunately my week of good health hit a sticky patch last night and I started feeling off colour and had a fever again. I decided just to head straight up to the hospital today, instead of allowing another infection to take hold. The doctor felt it was probably a different type of bug this time, which can be treated with some oral antibiotics, so hopefully that will get me back on track again. This run of infections really does seem relentless at the moment, but I'm still convinced a good spell is in store so it's just a case of trying to keep on top of things, and trundling on as best I can.

Not wanting to leave on down note, I will leave you with some bird photos I took recently (this really is turning into one of my most random blog entries, so sorry about that):

Coal Tit

Blue Tit

I have not fallen off the face of the Earth

Well I think that may have been one of my longest gaps in blogging – sorry about that folks. I wish I could say it was because I was off doing something rather exciting, although sadly I’m just otherwise tied up in hospital. Well, not literally tied up. That would just be weird,

I had been feeling so much better after my last IVs and in fact, was just thinking about blogging to tell everyone about my new found energy and fervour for life, when I felt the niggling start of a cold. I decided to hold off on the blog, as telling everyone how well you feel is a sure fire way of jinxing the good fortune. Although the cold never did seem to amount to much, my chest was quite offended by even the thought of it, and I started to feel pretty bad, very quickly. Anyway, to cut a long story short I came into hospital about 10 days ago, felt pretty grim for most of that time, and at last now feel I have turned the corner and on the mend again. I am due to finish the IV antibiotic course on Monday, so they will hang onto me until then, when I will be given my release. I had secretly been hoping to get home for the weekend, but for once am just doing as I am told. I will however get some parole over Saturday and Sunday though, so can pop home for a while and escape these 4 walls (which, for those interested, are a rather insipid pale peach with unidentified splash marks on one wall).

Quite why I only managed a pathetic one week off IV antibiotics before this infection is a mystery (although that still beats the 2 days off the last lot). It may just be that the viral infection set everything off again, or that the steroids I was still in the process of reducing made me more susceptible to infection, or that it was just sheer bad luck. The doc says I probably don’t have as much reserve now, so the infections are taking a slightly different pattern, and in their initial stages hit me a bit harder than I was previously used to. In the past I could always predict the onset of an infection and head it off quickly, before I felt too unwell and needed hospital admission. Now I feel I can’t quite predict anything anymore but it may just have been a bad run and I am ever hopeful that I am now due a settled few months. I have also started some medication to try and stimulate my appetite, so if that works and I gain some weight, it might make all the difference.

While I have been firmly ensconced in hospital, Seb has been enjoying a 5* holiday at my mum and dads. He wasn’t talking to mum for the first few days as he had clearly decided that the fact she left the house with me, and then returned without me was a sure sign she was up to no good. He instead clung to dad like a wee limpet, following his every move, sitting on his knee every time he sat down and barking and crying whenever he left. Fortunately he has now settled down and is parading around as normal again (Seb that is, not my dad), spending much time lying up on the furniture (where he not allowed) or looking in the garden for the big ginger cat (which he is in fact scared of). He also had great fun one afternoon when someone left a kitchen chair out, and he got onto the work surface. He did knock a couple of sealed Tupperware boxes containing fairy cakes onto the floor, but fortunately they didn’t open. However the big pack of Lurpack butter wasn’t so lucky. They really should make those lids dog proof.

Incidentally, its Sebs 3^rd Birthday today. I don’t think he will be getting a cake, but mum did say he might get a scrambled egg if he is good. What are the chances of that?

Birthday Boy

Randomness

I think I am overdue a proper update, so this might be quite a random post of events from the past couple of weeks.

Health wise, it all went a bit haywire again but I am now back on track! I had finished those last IVs after my trip to Arran I was feeling better at the time, although still very breathless. However within a couple of days, my temperature was flickering back up again and it was clear that something hadn't quite been dealt with during that course of antibiotics. I went into hospital for a few days and started on an IV antibiotic that I have previously had an allergic type reaction to. This time however I had some steroids with the antibiotic to suppress the reaction, and much to everyone's delight, have been managing fine with them. The best news is that this particular antibiotic kept coming out as the most effective one (in the lab anyway) for my bugs, so theoretically it should hit them pretty hard (that is real medical term, honest). I would say that, so far, this seems true as I am much less breathless than I have been for months and my exercise tolerance is definitely better. I am almost scared that by saying this I am going to jinx it, but hey, I'm sure you all wanted to hear that bit of cheery news.

My other exciting news is that I was speaking at Scottish Parliament yesterday. The Live Life then Give Life Campaign (founded by friends of mine, who have CF) were presenting on the topic of organ donation, with particular reference to issues within Scotland. I was asked to attend and speak on the subject of 'life on the list' in an effort to illustrate that organ donation is a topic affecting real people. I thought it all went very well and I managed to stand up and speak without sounding too nervous, dropping my notes or knocking over any equipment in the process, which is always a good start. It was nice to have the experience of attending such an event, and to have a 'wee shot' at public speaking - my own experience being fairly limited to power point presentations at work. The Daily Record were covering the story, so you may have read an article about me in todays paper. I didn't really want to do an interview, as I do find these things very difficult - largely due to the fear of how things will come across in print and the lack of control I have over that, not to mention the emotional strain of telling my story all over again. Instead, I gave them a copy of my speech and they used that for the article, so at suppose I can't argue that it wasn't my words. I hope it helps a little in raising awareness of the issues, and keeping the topic of organ donation high profile. I must say well done to my friends who organised the event, as so much work went on behind the scenes (most of which even I am unaware of). I just turned up on the day and smiled a lot, and I'm the one who's face was in the paper. Doesn't seem quite right, but the sympathy vote always wins over. That, and my natural good looks of course ;-)

For those Seb fans, I can give you some serious Seb naughtiness that has gone on in recent weeks. The piste de resistance was probably on Sunday when we were having a family dinner for Frances Ann's anniversary. Mum was busy in the kitchen, cooking and setting out the dining table. We were all lounging in the living room, being typically unhelpful and lazy. Seb was wandering about between the two rooms. So, I'm sitting in the chair and I notice Seb come bounding into the room, looking suspiciously cheerful. I notice he has something in his mouth, and as I try to identity what this large, pink stuff is hanging from his jaws, when I suddenly hear mum shreaking "Where's my prosciutto gone?!" "Where's your dads prosciutto gone?!" I then realise what the pink stuff is in Seb's mouth. Seb realises I have realised. Seb turns his back and quickly mashes all 7 slices that he has stolen from the dining room table into his mouth and attempts to swallow them whole, and succeeds. I go through and inspect the dining table. Everything appears untouched, apart from the 2 plates which now just have a some melon and a few untouched strawberries but no prosciutto. Seb follows us through and stands innocently looking at the table, pretending he has no idea what all the fuss is about and acts as if he is also deeply puzzled by the missing ham. Who could have stolen it? Not me! Clearly feeling invigorated by his successful thieving episode, he then dived through the living room and tried to help himself to a bread stick. I highly doubt he even likes bread sticks, but was obviously still riding the adrenaline high and it didn't really matter what it was he was stealing. This was followed by stealing mums cousin's sandal (she made the mistake of taking her foot out of it for a second), dads slipper and a milk carton from the recycling box. I think he needs an ASBO.

Today is Frances Ann's 3rd anniversary. The CF trust have a webpage called Stars in the Sky set up in memory of people with CF, where each star represents someone who has lost their life and contains a message about that person. On a chosen special day, the star twinkles brightly in their memory, so if you go here today, you will see Frances Ann's star is twinkling and you can read our message.

(if you are reading this after Sunday, you can still click on the star. If you switch on the grid, her star is in C2).

On days like this, I have a little card that Frances Ann once sent me, which I bring out and read. She sent it to me after a long and difficult hospital admission, where I had taken some time off work to be at the hospital with her. I thought I would share part of the message on that card:

"The little blue fish on this card is like you, because you're not like all the other sisters in the world - you're a million, trillion, zillion, gazillion times more special! Thanks for being my supersis. Love you so much there's no word."

Those words make me feel sad for what I have lost, but they also make me smile because of what I have - memories that are free from regret and free from the feeling of words unsaid. I imagine in life that is pretty rare.

New York Marathon

Well, I think you can gather that I will not be running the New York Marathon, but I know someone who is, and even better, she is running it in aid of Cystic Fibrosis. Alison is around the same age as myself, and has already run the London marathon for CF. Her family are good friends of my own family, and have always been so supportive of all our fundraising events. The very least I can therefore do is give Alison a mention here on my blog, and put a link to her 'Just Giving' page where sponsorship can be donated online (click the banner on top right of blog).

Lots of Luck and thank you for choosing to support CF once again!

Wheel Chair Rally Driving

Well, I am almost finished my IV's - 2 days and counting. I am feeling better, although still very tired at the moment. Sometimes the antibiotics themselves can really drain you though, so hopefully I will feel much brighter next week.

I did manage to go on my trip to Arran and had a nice relaxing time. We had my friends civil ceremony on the Tuesday morning and a meal in the evening, so I was able to have a rest in the afternoon. I was really tired on Wednesday though so we decided the best course of action was to just drive around the coast, looking at the nice scenery and generally behaving like a pair of pensioners. Fortunately the weather was absolutely beautiful, so we got the roof down on the car and I can now technically say I spent the day outdoors. We did get out the car to take photos, eat an ice lolly and have some lunch. Adventurous pair that we are.





Having had such a sedate day on Wednesday, I felt determined to see some of Arran from outside the car before we left on Thursday. Neither my lungs or my peg tube (which has been playing up big time again) agreed however and I managed a shuffle round one shop before we had to go back to the car again. Not to be beaten, I had brought my newly acquired emergency wheelchair with me, and decided we should give it a test drive. I had borrowed one from the Red Cross a few months back, so that I would have a back up plan for getting out when I was really breathless. Although I didn't need to use it much, it seemed a good idea to get my own so that I have more options for getting out and about. The GP kindly organised that and I got a nice shiny black one (to match my nice shiny black car) just last week. I call it my back up plan, because at the moment I do want try and walk as much as I can, to maintain some muscle bulk and general fitness. However, when I have days when I would choose to stay in because I can't walk further than the next room then this seems like a sensible choice to make. In the past I have worried that by using a wheelchair I was giving in; now I can see it simply means not giving up.


Anyway, to get back to my story, on one of the leaflets we had there was a list of suggested walks and trails for the 'less able' and it had information on suitability for wheelchairs. We selected one that was apparently accessible to wheelchairs and pushchairs. It started off alright - a little bumpy perhaps but generally flat and even. Then gradually the road became more rough and before I knew it we seemed to be in rocky terrain, bumping and jolting and generally taking off road wheelchair use to completely new levels. As we charged down this stony path, Andrew seemed to think that the only way to overcome the rocks and boulders strewn in our path was to gain momentum and just hurtle me over them. I did not know there was such a thing as 'wheelchair sickness' but I can assure you it does exist. To make matters worse, there were several small bridges to be negotiated. I say bridge - they were in fact planks of wood, only about 6" wider than the wheelchair going across streams. I did that thing where you hold you breath, as if it makes everything smaller. Andrew did that thing where you pretend you are going to steer the wheelchair over the side and into the water. Oh, is it only him that does that? I thought so. This face was not laughing. At the point the path was now going to cross a golf course and we had the added hazard of being knocked out by a roving golf ball, we decided to turn back. Once back to the car, I had to take tablets for nausea, pain killers for my peg tube which had been jostled around, and was in need of a stiff drink for my nerves. Andrew had a sore back from bending over almost double and red raw hands from gripping the chair as he rammed it over rocks. Maybe next time we will just stay in the car.


The start of our rocky journey:


Herring Gull, snapped by Andrew from top deck of ferry:

Spot the resemblance?

I thought Seb looked a bit like a sunflower with his cone on. He wasn't particularly impressed when I made him pose beside the sunflower for a photo though - look at that huffy wee face. He is wearing his orange cone as a preventative measure, as I noticed he was scratching at the skin round his eye and the last time he did this it lead to conjunctivitis which went on for weeks. It seems to have helped and he is now on a cone-free trial and the skin is looking much better. Unfortunately he was rather over invigorated its removal and over the course of yesterday I rescued a trainer, 2 slippers and my Pep mask from the back lawn. I'm hoping the novelty will have worn off today.

Health wise, I've been a bit off colour and had to start back on IV antibiotics on Monday. I was really quite disappointed as I only finished the oral ones on Friday and thought I had been doing quite well before that. Its scary how quickly my chest can decide to go downhill again, but I am adopting the 'act quickly' approach and am refusing to let things grumble on. Hopefully these IVs will get me back on track as soon as possible. In the meantime I'm just taking it easy (nothing new there) and hoping for some sunshine so I can sit in the garden. I think that might be asking a bit much though.

I am going to my friends civil partnership ceremony next week, and then afterwards the guests are being treated to a night at a spa hotel in Arran. I am really looking forward to the day, and have also booked an extra night in Arran so we can have a chance to see some of the sites, as I have never been before. Hopefully my chest will be a bit better by then, but we can at least have a drive round the island and admire the scenery from the comfort of the car, so I'm sure it will work out ok. I must admit that trying to arrange going away somewhere with oxygen in tow does make things more complicated, but I think I'm more or less sorted now. I have even decided on my outfit after mum insisted I try things on and decide early, as I have a terrible habit of waiting until the day before announcing that my outfit no longer fits because I have lost weight. I feel like I'm looking a little on the scrawny side just now, but managed to select something that makes me look a bit less so. Clearly some more carrot cake is required..

I'm off now to finish reading Harry Potter. I have been dreaming about witches and wizards for the past few nights. The fact I had a factual discussion with my friend this morning about unicorns would suggest that my ability to separate reality from fantasy is fast diminishing. I must finish the book soon and then read something more adult, before I regress completely. I fear it may be too late.

Plants and Pigeons

Apologies for the lack of updates on my blog, but life has been fairly quiet and non eventful of late. Health wise I am doing ok. My chest went a bit of the rails last week, but I got some oral antibiotics and am feeling much better now. It's funny how sometimes you don't realise how bad you were feeling, until you start to feel a bit better again. It just makes me realise that I can't even begin to imagine how much better I will feel after my transplant. I think you lose perspective of what is 'normal' in these circumstances, but I'm sure I will be in for a pleasant surprise.

The garden is progressing well and the rockery is now planted. We took a lot of care and attention laying out all the plant pots in their positions before planting, but in reality since we don't know what half the plants are or how big they might grow, it will all be a great surprise when things start to mature (or not, as the case may be). Seb has show great interest in the new rockery, and when ever he goes into the garden he heads straight for it, leaping over the small wall into the soil. He then parades around between the rocks, kicks the soil up with his back legs before finally peeing on every plant in site. I'm hoping the novelty of this wears off soon. He did however take this to a new level of naughtiness the other night, when he actually dug up one of the plants and tried to run off with it. Fortunately we were both in the garden and rescued the plant from a crazed and exhilarated Seb, who seemed to think this was a great new game. I have seen him do this once before when he was a tiny puppy. I had planted lots of pots with bedding flowers, only to come out an hour later and find them strewn over the lawn, soil all over the patio and an exhausted little puppy looking rather pleased with himself. Thankfully he never touches the plants in mum and dads garden, so hopefully this was just a moment of madness and will not happen again. Fingers crossed.

Percy the pigeon came into my kitchen the other day. I think it was because I had forgotten to fill up his bath, and he thought he could maybe use the sink instead. I was a little surprised to see him sitting on the window sill when I came into the kitchen from the garden, and quite alarmed when he kept repeatedly flying at the window in an effort to escape. Dad was with me at the time and like any good responsible parent, he chose to quickly run back into the garden and leave me standing there on my own. Seb did come sprinting in from the garden to help until he was told in no uncertain terms to GET BACK OUTSIDE (in that tone) before he made the situation ten times worse. Thankfully in the time it took me to go and get a big towel (which I was going to attempt to catch Percy with) he had managed to find the back door and flew up into the tree, where he stayed motionless and traumatised for the rest of the day. Next time, his bath will be ready and waiting.

Striking a Balance

Life seems to be on a reasonably even keel at the moment. I had a clinic appointment last week and although everything is at a lower level than before, they were happy enough with me. I have started to adapt to the lower lung function and unpredictable energy levels, so through both trial and error I am learning my new limitations. I have found it difficult to adjust at times because in my mind I can still do everything I could do 6 months ago, but my body will soon remind me otherwise. I think it's just a case of learning to strike the balance between doing as much as I can without overdoing it, and this is often easier said than done.

On the subject of striking a balance, I had a meeting with my work today to update them on my progress. I think the effort required just to get ready this morning and drive myself the short journey made it even clearer that I cannot possibly go back at this stage. I did enquire about trying to do some work from home but this isn't really a feasible option, and to be honest I was probably relieved to hear that as I would inevitably put myself under pressure. A more realistic and probably useful idea is that I set some time aside every week to keep up to date with work related things. There are lots of online modules I can complete and journals I can read to keep my mind involved and my knowledge fresh, so I can possibly make a start with that idea. Right after I finish watching day time TV...

For the Seb fans, here is another random escapade. Yesterday I was pouring a carton of cream down the sink, as it had been open too long and I get funny about these things. Anyway, I went outside immediately afterwards to put something in the recycling box and I notice Seb's furry bottom sticking out from between the boxes. I move in closer to see what he is up to, and realise he has his mashed his head under the waste pipe from the kitchen sink and had been lapping up the cream as it poured out! Goodness knows how long he has been up to that wee trick, but Andrew will be extending the pipe to prevent him doing it again. His taste for cream did however also remind me of the time my neighbour took him a walk when he was a puppy. Apparently he spied a man eating an ice cream cone on a bench, and before the neighbour realised what was happening, Seb had jumped onto the man's knee and started licking the ice cream. Not surprisingly he didn't much fancy finishing the cone after that. Some people can be so fussy..

It's not all about the lungs..

The ongoing garden project took us on a trip to a new garden centre at the weekend. We were attempting to select some plants for the rockery, although due to limited knowledge in the field of horticulture, we managed this task based on "Oooh that looks nice - does it say 'hardy' on the label?" In my humble opinion this would seem as good a method as any. My friend Fi has become my garden guru and is giving me lots of advice, and politely answering queries such as "the plant went all brown and the leaves fell off - do you think I didn't water it enough?" My aunt also gave me lots of cuttings last summer which have been sitting in small pots on top of the dogs kennel for nearly a year now. Now I just need her to come back and tell me which are actually plants and which are just weeds that have managed to grow in the 'longer than expected' intervening period. I may sound like a lost cause, but we all have to start somewhere...

Seb has just returned from a weekend break at mum and dads. He is pretending not to have missed me at all. Chances are he actually didn't. I think he has too much fun when he stays there and gets spoilt rotten. Apparently they were both gardening on Saturday and since the front garden is not fenced in, Seb had to stay on the veranda area, which has railings around it. Dad felt so sorry for Seb that he positioned a garden chair next to the railing so Seb could sit on the chair and watch them in the garden. I'm surprised he didn't pour him a long cool drink to sip on as well, although I did hear that Seb was enjoying drinking from the water fountain, which he clearly thought was there for his personal use. Also of much amusement is the fact mum was running (yes running) with Seb on the lead (he cannot be let off a lead, as he would just wander off). The last time I saw her running, she tripped and managed to do a forward roll without letting go of Seb. Now that's what I call quality entertainment.

I had a lovely day yesterday visiting my old flat mate (hello Anna!) for the afternoon, and it really lifted my spirits. It can get a bit tiresome having the same daily routine and I feel recently my thoughts have been dominated by health, and lack of. Seeing friends, especially those from a time when life seemed simpler and more care free, can help put things back into perspective. I suppose it helped to remind me that there is more to me than bad lungs and the quest for making them less so. I did actually have a life before this, and not much of it had anything to do with lungs (apart from the breathing part). It's hard not to become very focused on the idea of 'when I get my transplant, then I can...." and in the meantime forget about living right now. I just need to sometimes remind myself that its not all about new lungs and new beginnings; sometimes its just about what is happening right now, appreciating life as it is, and making the most of today.

Onwards and Upwards

Thank you for all the lovely supportive comments on my last blog entry - it really helps to know that my friends and family are there for me during both the highs and lows. You will be pleased to read that this entry will be a 'high', although this is largely due to the Chocolate Brownie Sundae containing 38.9g of sugar (approx 8 tsps) I have just consumed. Sugaaaar Rush!

Yes, I am trying to put some weight on again, and this time I used the method of adding lots of random deserts to my online Tesco order based purely on total number of calories. The chocolate brownie sundae has an amazing 780 calories in one serving so that was first in the basket. I don't even like sundaes but with that many calories I figured if I could even eat half it would be a roaring success. I suggested to Andrew that he could help me eat it, as it did really look rather daunting with all its chocolate mousse, brownie pieces and fresh cream. Funnily enough he agreed to help with little persuasion. Between us we managed to tackle the beast and polished off the 780 calorie, 165% of daily recommended saturated fat dessert. The initial glory of a job well done soon gave way to us both lying on the sofa feeling rather queasy and all together not very well. It's rather fortuitous I added that bottle of Gaviscon to the shopping list then.

I have been getting out quite often with the portable oxygen. Unfortunately I have found the cylinders too heavy to carry myself, so either Andrew or mum has to come along as professional oxygen cylinder carriers. This does take a little practice however, as clearly my tubing is connected to the cylinder, so I am therefore connected to the other person. A strange shuffling dance ensues whereby we slowly move around the shop (or where ever) with me intermittently shouting directions "left ahead" "over to that shelf" "Stop here" "Ahhhhhh" (thats me being pulled by the nasal oxygen specs when the other person walks in different direction). All good fun though. Hopefully things will get a bit easier (in fact I thought today I wasn't quite as breathless) because I would like to get out to the shops on my own again and be able to walk around a bit more freely. Always good to have a goal to aim for - and if all else fails I am trying to build up some arm muscles so I can maybe carry the cylinder myself.

I have been signed off work for another couple of months, and then I will take it from there. At the moment I would not have the energy to manage at work, and to be honest I was struggling significantly for quite some time before this. Whether I do get back to work before my transplant looks doubtful, but nothing is impossible. I will just concentrate on the eating, exercising and such like for the next couple of months and see where I am at the end. Fortunately I am not yet bored (mostly because mum is keeping me busy by making sure I get out of the house and don't become a recluse) but I have a few ideas for things to keep me occupied should my brain begin to wilt.

Seb is at least pleased to have me around most of the time, or at least I think he is. He likes to act a bit casual about these things. He prefers hanging out with Andrew at the moment because he is digging in the garden (creating a rockery) which is far more interesting. Seb follows behind, poking his nose into each new hole dug and generally making a nuisance of himself. If all else fails he likes to run off with a gardening glove or anything else he can find lying around. Mum was trying to hang washing out today and stopped to talk to my neighbour. When she turned back the peg bag had disappeared, although there was a small trail of coloured pegs leading to the culprit. He hasn't yet worked out the concept of covering his tracks, although I suspect its only a matter of time.

Butter wouldn't melt...

The Ripple Effect

I haven't really been blogging much recently, because I feel I am just going over the same old ground health wise and am even boring myself with my gripes. However if I think back to the reason I started this blog, it was to record the journey towards transplant, which has to include both the ups and the downs. So today I apologise, because unfortunately this is more of a down.

My thoughts feel scrambled and haphazard at the moment, as I try to adjust to this new place I find myself in. The breathlessness continues to be ever present and its resulting impact on daily life is increasingly frustrating. Simple tasks, like moving around the house and getting dressed in the morning requires a concerted effort. Who would have thought putting on some socks could be quite so labour intensive?

The stairs in the house, like the proverbial thorn in my side, are a constant source of annoyance and trouble. If Andrew is around, I can hitch a lift if necessary but left on my own I sit and ponder "Do I really need to go up there?"

My mum has taken over all household chores and her remit continues to expand - prescription collector, banker, dog walker, chauffeur, chef, laundrette and the new esteemed post of 'Portable Oxygen Cylinder Carrier'. When she goes off duty, Andrew comes on duty and his list of roles is equally endless, ranging from the sublime to the ridiculous. Yet, I'm not sure what my role is?

Eating has become a major source of stress. I don't feel hungry. Ever. I feel breathless and tired trying to eat a proper meal. My weight is on the decline and I cannot afford to lose any more, yet my peg tube decides that now would be a good time to start playing up again. I am taking my overnight feeds 7 nights a week, but am waking up half way through the night feeling sick and with heartburn, and have to switch the machine off. I then wake up with low blood sugars, because I had taken enough insulin to cover the whole feed. Who would ever think eating could be such a chore?

I have hardly been to work in the past few months and not at all for the past month. I suspect I may not be able to go back this time. I feel both relieved at the thought of not struggling into work, and at the same time horrified that I may be about to lose a crucial link; a link to independence, to sanity and to reality. Who would have thought the prospect of lazy days, long lies and no commitments could be so frightening?

It may seem from this post that I am feeling down, but that's not the case. I just feel a little overwhelmed at the moment, and perhaps, at times, a little afraid. A small health change is like a stone thrown into the water - the ripples spread out into almost all areas of life, and sometimes you are not quite sure where they will stop. However, I know they will stop. The waters surface will become still again. My life will fall into order; I just have to let it.

Fame and Fortune

Well, at last the Daily Mail article has been and gone so now I can sit back and relax. Overall I was pleased with the finished piece, although as expected there were several misquotes but none were too disastrous or misleading. One of my favourites was the "special phone" I apparently have for the transplant call. That would be my mobile phone then. Although to be fair it is quite a special phone - it has wee blue disco lights that flash when it rings (seriously). Anyway, on the whole the journalist did me justice and the facts about both CF and transplant were both accurate and informative; a rarity I imagine. I felt the issue about the lack of organ donors and the dire need for people to sign the register (and to discuss this decision with their family) came across strongly and I can only hope that by offering my own emotional experiences people will be moved enough to consider signing up themselves. What takes only a few minutes of your time could end up being the difference between life and death for someone else.

Following on from the article today, the CF trusts PR agency contacted me to say that a weekly magazine was interested in the story. I offered my apologies and said no, I wouldn't be able to do that. She then phoned back a few minutes later to say that the magazine wanted me to know that they would be very sensitive, would let me read the article first and would pay generously. I paused at the pay generously part and my pupils became like dancing cartoon pound signs. I decided to discuss the idea with some friends, Andrew and my mum before making a final decision. My friends wondered whether I would find it stressful, my mum knew I would find it stressful and Andrew asked "How much are they paying?" Clearly concerned about my health and well being then. I've decided to say I can't do it, as the lack of control over such an article would worry be senseless. However, more importantly, I feel that the story is not just about me; its also the story of my two sisters and their battle with CF. I have to be careful with those memories. They are precious; too precious to risk being misrepresented or tarnished just for the sake of a good magazine story.

Anyway, I can also do without the stress as my health is just struggling to get on an even keel at the moment. I mentioned in my last blog that I was due to finish my IVs on Friday but my chest decided to start playing the fool and I had several episodes of haemoptysis (coughing up blood) over the weekend. This is not uncommon in CF, because the chronic inflammation in the lungs can cause the blood vessels to become fragile and prone to bleeding. It is often associated with infection, so I had to continue the IV's over the weekend until the bleeding settled. It was much better by Monday so at the moment the doctors are assuming it was just a random event and I've now stopped the antibiotics (phew!) Unfortunately the breathlessness is still lingering on and I am now beginning to suspect it might be a long term thing, which I'm sure I will get used to. It has been stopping me getting out and about though, and that has been getting me a little down. Last week I tried to go to the garden centre one day and the pet shop another, with mum, but as soon as we got there I felt too breathless and wanted to come home. To help with this I am getting some portable oxygen cylinders that I can take out with me. At the moment I am only using oxygen overnight and occasionally during day if very breathless, but for the most part I don't need it and my oxygen levels are stable. The problem is that when I start walking, the lungs can't quite keep up with the increased oxygen demands and I become tired and breathless quickly - if I was wearing some portable oxygen it would hopefully allow me to keep going longer. I do not propose for one moment that I will be needing this all the time, but certainly at times of infection and in these recovery phases, that bit extra help might allow me some more freedom. The psychological aspect of going out with an oxygen cylinder and tubing on my nose is another issue, although to be honest, if it makes me feel less breathless when walking then I think I can live with the odd stare or two. Now I just need to ask my dad if he can fashion a small cart for the cylinder to go in, with an equally small dog harness at the front....

See.... I wasn't making it up!

Click here for daily mail article

Health, Seb and Daily Mail (again)

I have just been taking it easy since my last post, and trying to give the IVs a chance to work. I finish them on Friday and am looking forward to a long lie on Saturday morning. The daily grind of making up and administering the IVs three times a day becomes quite boring after two weeks, so when you finish them its feels like you have just gained all this spare time during the day! I think the IVs have cleared my chest up so that's good news, although I still feel more breathless than I did a couple of months ago. However this may well just be a new level I have to adjust to, but I will just go with the flow and see what transpires. I think I need a little more time off work though, just to get myself back on track and my energy levels up again, as the IVs themselves can be quite draining. Fortunately I have both mum and Seb to keep me entertained. For different reasons I might add (mum tends not to roll about on the furniture and run off with my slippers).

Speaking of staying entertained, I was experimenting my new camera earlier today in the garden trying to get a photo of a Blackbird who was gathering worms to feed his chicks. Yet again as I crept up the garden in my stealth like fashion, I became aware of someone following me. It was of course Seb who was keen to join the birdwatching and photography session and had come to investigate. When I turned round he looked away and tried to act all casual, as if he just happened to be coming up the garden anyway and was not at all interested in what I was doing.



I tried to ignore him and carried on with taking photos but was soon distracted by a scrabbling noise behind me. Seb had managed to clamber onto a large mound of earth which was piled in the corner, and had now sitting there with his "look at me, am I not clever?" face on. He then pretended not to be interested and stared off to the side, as if enjoying the view. However I knew whenever I turned my back he was watching me but would quickly look off to the side again if I dared turn round. If he isn't climbing on top of things, he is climing into them, like yesterday when I thought he had gone missing from the garden but he was in fact hiding in a hole, peering over the edge like it was a bunker and he was a wee soldier. He really is quite a disconcerting dog at times.



The journalist who wrote the mysterious disappearing Daily Mail article phoned today. She said it was common for papers to over commission articles which then don't get published, so she was looking for other avenues to explore. She had suggested some of the weekly magazines (you know the human interest type idea). As much of a snob as it made me sound, I had to say a definite and final NO to that idea. The CF trust had originally asked my to consider one such magazine but when I had looked up the most recent edition I found headlines such as "Help! My baby's brain is leaking!" and "My eyeball exploded". I just could not face this kind of approach. I don't mind trying to help raise some awareness but not at the expense of my life story being used as a sensational coffee break read. I suggested that the Daily Mail still may use the story for transplant week, which is 7th-14th July. She thought this was a great idea, and was going to contact them regarding this, so I will let you know if I hear anything else. Don't hold your breath though, because I won't be!

Long Time No Blog

I've not been feeling very well recently, hence the large pause in blogging. I thought last week it was just the after effects of my London trip (too much excitement and singing of Mary Poppin's songs all round). However by the end of last week I was feeling really breathless, having lots of chest pain and generally worrying even myself. I hung on until the end of the week, trying various experiments such as attempting to walk to end of road and back to 'evaluate breathlessness'. Sometimes I do the most stupid things. Anyway by the Thursday afternoon I realised that speaking in full sentences was becoming a bit uncomfortable and clearly any disruption to my ability to speak is an emergency situation. I was reviewed on Friday, and it was agreed that the original infection from last month was still lingering on, and had probably only been suppressed by the oral antibiotics (which at least had allowed me to got to the awards). I have now started a different IV combination and stayed in hospital over the weekend to get them started. Thankfully things seem to be moving in the right direction now, and I am feeling much less breathless already. By the end of next week its entirely possible I will be sprinting to the end of the road and back. There is nothing wrong with a little misplaced optimism at times.

A good friend of mine nominated me to receive a gift from the Chloe Janet Ball Trust. This trust was set up in memory of a young lady with CF and their aim is to bring enjoyment to the lives of people with CF. This could be a trip to the theatre, a lovely meal, a night at a hotel - something that will be enjoyable and memorable to the recipient. I was honoured and delighted to be nominated for this and I decided for my gift, to purchase a digital camera so that I could continue with my new found interest in taking photos of the birds in the garden. I felt this was something I could enjoy regardless of health status, and then after my transplant I will be able to venture further afield and maybe one day I will be blogging photos of my world wide travels. Before any of that however I need to learn how to work the damn thing. It has a lot of buttons - I can so far switch it on and pop the flash up, which is a useful start. I was going to read the manual, although my friend Fi kindly informed me that intelligent people do not read the manual, but work it out for themselves. I say intelligent people let their husbands work it out first, and then just ask them.

For those still wondering about the Daily Mail article - join the club. I did email the journalist, but it would appear she is freelance so doesn't know much more than anyone else. She was annoyed the article had not been printed and was going to contact me if it wasn't in last week, to discuss putting it in a different publication. However I have not heard anything, so am assuming it will just disappear into the ether, never to be seen again. Ah well, all that primping and preening for the photo shoot was a was a little pointless, although at least Seb seemed to enjoy himself. If I do hear anything else I will update my blog accordingly. Unless I see the article and the photo is really bad, in which case I will tell no one.

The Big Smoke

Well, I have just about recovered from my trip to London. We travelled down on the train, which was fairly relaxing but tiring all the same. On arriving late in the afternoon, we took a taxi straight to the hotel and got checked in. We were staying at the Hilton Metropole, which was a beautiful hotel, with fabulous views from both our rooms. That evening we had a lovely dinner in the hotel, before heading out to see Mary Poppins. The show lived up to all my expectations and more. The sets were absolutely amazing and the cast all so professional. Even Andrew enjoyed it, despite having been adamant that he didn't like musicals. I must admit it was hard not to sing along (although I did refrain). I may have to start using the word Supercalifragilisticexpialidocious in every day conversation though. Just for my own amusement. (I can't believe spell checked doesn't recognise it - I think I'll add it to my dictionary).

View from hotel bedroom

On the Thursday we met two of our old flat mates, who now live in London, for lunch. It was lovely to catch up. We had also hoped to do a little shopping on Oxford Street, but unfortunately I was feeling really breathless so we had to abandon that idea, and head back to the hotel. It was probably just as well, because we needed plenty time to rest up before the big night. Later in the afternoon I met my coordinator from the CF trust and she was able to take me down to the main room for a sneaky peek. The room looked beautiful - NEXT was one of the sponsors and had decorated the tables - black table cloths and red accessories. It was stunning. When we popped down, Gareth Gates was rehearsing his new single, which he performed on the evening. The coordinator asked if he would come over for a photo, and he kindly obliged. He seemed a very nice guy, although very shy and reserved. The coordinater took a couple of photos, and she asked Andrew to come over for one of them. You can imagine his joy at having his photo taken with Gareth. Not something he will be telling his friends about.

At this time the coordinator also gave me some gift bags from the sponsors of the evening. NEXT had made up a lovely selection of goodies, including a watch, perfume, sunglasses and lots of other treats, as well as giving us all gift vouchers. BT had provided all the nominees with two video phones, with a years subscription to use them. Now I will be able to see mum when I phone her. I am not sure what to say about that.

The evening itself was lovely, and we first enjoyed a beautiful meal before the awards ceremony started and had champagne in the room. I have to say, it must have been so difficult to choose winners in all the categories, as everyone was so deserving in their own way. Although it would have been the icing on the cake to have won my category, the competition was stiff and I lost to a very worthy candidate! To have even been short listed in the first instance was an achievement, and I really enjoyed being part of the evening. I didn't cringe too much when I saw my video clip, although I thought I looked a little serious. Luckily Seb was there to lighten the mood and I was so pleased he made it into the final cut. Celebrity wise, I met Toby Anstis, David Seamen, Amanda Lamb and Cleo Rocos. They were all very friendly and down to earth. Cleo Rocos was quite a character, and kept calling Andrew "Love-Pot". I have been throwing this into conversation since, although will have to be careful people don't start to think that it's my pet name for him.

Me and Toby Anstis

All in all, it was a great evening although a very tiring one. It was nice to be part of the experience, and to have a moment of fame on the big screen. I'm expecting some calls from acting agencies now - not for me, but for Seb. Famous, and he doesn't even know it.

NB: Andrew has just kindly pointed out that my title "The Big Smoke" makes it look like I'm a country hick who doesn't get out much. Charming.

Just back from London, so will update when less exhausted! Didn't win an award, but had a lovely time and enjoyed the experience.

This is just to let people know that the show will be aired on Five Life tomorrow (Saturday) at the earlier time of 7pm. The academic category is early on in the show - and the good news is that Seb made a wee appearance in my video clip. Mission accomplished.

Quick Update

It would appear that I am not in Daily Mail today. I have yet again misled everyone into buying a copy. I can assure you that I do not have shares in the paper. I think, however, they should be paying me commission. I have emailed journalist to ask if she knows when it will be (unless of course they have ditched me altogether). I don't think I will mention it again, as I'm annoying even myself now.

Off to pack for London now..

Adapting

I am thankfully starting to feel better now, so will hopefully avoid the threatened hospital admission and be able to take my trip to London next week as planned. However, unfortunately, I am still feeling very breathless on any exertion which has been limiting my activities to those which generally involve little or no movement. That would be lying in bed, sitting all day on the sofa and walking between the two. Funnily enough, it becomes a little 'samey' after a while. I decided today I would try and take Seb out for a short walk and get myself back into some sort of exercise routine. I made it to the end of the road and back at what can only be described as a snails pace. Seb normally 'trots' when he is out for a walk, but today I was moving so slowly he had to do this weird skulking motion, not unlike a prowling cat. He looked really odd - I was secretly pleased though, as I hoped it would distract any passers by from the fact I was shuffling along like an old lady.

Although I can laugh, I also feel frightened by this new lack of mobility. I feel as if my world is slowly closing in on me, that gradually more of the things I love to do are being snatched from my reach and I am left with a feeling of increasing isolation. Today I just wanted to take Seb a long walk, to enjoy the fresh air and to feel I had accomplished something. Instead it was more like a hobble along the street, then 5 minutes sitting in the hallway recovering enough energy to remove my coat and the dogs lead, before taking up my trusty place on the sofa once more. A bit of an anticlimax all round. I am hoping things will improve over the next week with the oral antibiotics, and maybe its just taking longer to recover because this infection has lingered on. I know that I will find ways around these ever evolving issues. I will adapt, learn and develop new ways of coping; all I can do in the the face of such a fluid and changing situation. I just wish the goal posts would stay still for a little longer, that's all.

As a coping strategy to being stuck in the house this week, I have been trying to take photos of the birds in my garden. There have been lots of fledglings in the past week, so I've borrowed dads super dooper zoomy camera to try and capture some of the fluffy wee things (as illustrated in my photo of the week). I ventured outside with the camera earlier to try and take some shots from the top of the garden. As I slowly skulked up the garden path, in my stealth bird watcher like way, I became aware of someone or something following me. Yes, it was Seb. He feels the need to investigate everything and proved to be a great hindrance to my bird photography plans - wandering into shot, chasing off potential customers and leaving doggy nose prints on the camera lens. Needless to say most of the shots ended up with Seb as the main subject. No surprise there then.

Since we don't give Seb any toys, he has to resort to playing with small twigs:




If I don't update during the week its because I'm off to London on Wednesday for the awards ceremony, and more importantly, the Mary Poppins show. The awards show will be shown on Saturday 2nd June on Five Life at 7.30pm. The Daily Mail article should be in this Tuesdays health section. If its not, then I suspect the interview I gave was either:
a) to a bogus journalist
b) to an entirely different newspaper
c) a complete figment of my imagination

I wouldn't be surprised if it was C. I did momentarily think the fan at my bedside was a giant face last night - the lights were off and I was half asleep, but I'm not sure that entirely explains it. Best not to tell people these things eh? Oops too late.

The Monday Blues

Well, I said I would give it until Monday and then decide what to do about my 'not feeling so good' scenario. Things didn't really improve and after developing a temperature last night, I decided it would be sensible to get checked over today. The doctor confirmed that the infection appeared to be grumbling on and we agreed on an initial trial of some oral antibiotics, which have worked well for me in the past. He wanted to avoid IV's just now, since its only 1 week since the last course, but if I'm not improving by the end of this week I will need to go into hospital to start some different IV's and get a general overhaul to make sure we are on top of things. I have started to lose weight again, and really cannot afford to go down that road, so its back to the nesquick and carrot cake diet for the foreseeable future. I can, however, think of worse diets to go on.

The lingering chest infection means I am now off work again, having only been back for one week. I think I have probably been off work more than I've been at work this year, which is a little depressing. I am trying to be more sensible about taking time off when I'm not well, so I guess I will just have to accept the situation and realise that I cannot control these things, no matter how much I would like to. My work, as always, are being very supportive. The secretary did however suggest that I might just be taking time off due to the embarrassment of the impending Daily Mail article, which is sure to be passed round at the Tuesday team meeting. I told her is is likely to be a tear jerker, and she should count how many boxes of tissues are used and let me know. The article will either be in tomorrows paper or next Tuesdays, to coincide with the awards. I don't think you will miss it - there will probably be a huge photo of me, possibly on a nebuliser, and possibly staring forlornly out the window. I am rather hoping they have used the photo of Seb licking my nose instead, if only for comedic value.

For anyone interested (not sure who would be) my bathroom is progressing nicely. The stud finder and pipe cutter were used appropriately under professional Father-in-Law supervision, and there is now a shiny towel radiator on the wall and a laminate flooring underway. My dad was very helpful over the weekend. He was especially helpful at taking Andrew to Homebase and B+Q on "emergency visits for emergency supplies" which consisted of various power tools and accessories to add to Andrews collection. They would both come back with a pre-planned story about why this tool was essential, what else it could be used for in future, and how great a deal they got on it. I think dad deliberately left half his tools at home as part of a master plan in acquiring new tools for Andrew. I suspect its a bit like woman and shoes. Dad if you are reading this - I am on to you.

Lastly, you might notice that I have added a Guest book. It has the option of leaving private messages if you don't want everyone else reading your comments, or just leaving a general message. I don't think its really necessary but I saw it on someone else's blog (sorry Em!) and I wanted one too.

STOP right now!

My clinic appointment on Tuesday was a mixed bag really. The good news was that my chest sounded a bit better and my weight was reasonable, the bad news was that my lung function was exactly the same as it was pre-IVs and I still don't feel on top form. However the doctor told me "you have to accept that sometimes the IVs just don't work as well as they do at other times". Oh, ok then. I now feel much better.

I completely understand the need to avoid frequent courses of antibiotics, and indeed, I don't even want to go back on any just now. I just want to feel better, to have enough energy to get through some simple daily tasks without feeling I need to lie down and to maybe wake up one morning and actually feel ready to face the day. I don't really accept that the way I have felt the past couple of days is the way I am going to feel from now on...after all, I was feeling pretty good only a few weeks ago, and really enjoyed my few days in York. Maybe this is just a getting back to work tiredness, maybe its this miserable weather or maybe the infection is lingering on. I don't really know, but I am giving it until Monday and then....well I don't know what happens then. I will have to wait until Monday.

On a more upbeat note, an odd thing happened this morning. I tried to prevent a traffic collision my holding my hand up in the STOP position, like a police man directing traffic would do, except I was in my car at the time. I was driving along the road, and due to parked cars and some road works, there is only room for one car (mine). I reach the end of the road and another car is turning in, but they do not see me because they are too busy smiling and waving to someone standing at the roadside. I detect a potentially dangerous situation and I do the most logical thing. I adopt my stern 'official' face and hold my hand up in an authoritative STOP signal, and hold it there. (I suspect this may be along the same logic that sees me breathing in very deeply to make myself smaller when parking in a tight space). Goodness knows why I did not toot the horn, although to be honest I'm not even sure I know where my horn is. Fortunately the woman turned round at the last moment and saw my car, and unfortunately also saw me sitting in it signalling her to stop with my hand. I tried to nonchalantly turn it into a waving motion - a kind of friendly 'hello there little lady'. I think it may have been too late though and the puzzled look on her face told me so. The worst of it is, she actually lives across the street from me so I can't even fade into anonymity, although she probably already knew I was weird.

I am going to leave you with some pictures of Percy the Pigeon, who likes to take a daily bath in my garden. Usually for at least 30minutes at a time, during which time Seb has to stay indoors, as in the absence of squirrels, he likes to chase pigeons. I add these photos because I wish my life was as simple as this...

Now, I'll just pop my leg in and test the water temperature..

Now, if I just lower myself in gently, I'm sure I can fit myself into this..err..plant dish...

Ah, that's it. Give myself a good scrub now. It's been a whole 24 hours since I last did this..

Now, I will just lie here sunbathing for another half hour. That will really wind Seb up.

N.B I am fully aware that taking serial photos of pigeons is odd behaviour. Now leave me alone.

Just a Spoonful of Sugar...

Well, it has been a much quieter week. Thank goodness. Health wise I really needed some rest to try and get over this chest infection, which has lingered on a little longer than normal. I do feel like I am getting somewhere now, but will be getting checked out at the clinic on Tuesday just to make sure the IV's have done the trick. I also took delivery of my new oxygen concentrator, so hopefully it will allow a more restful sleep and make me feel a bit more refreshed in the mornings. I have only had it for 2 nights, and today I did feel more alert and rested so it looks promising. I suspect however that the real test will come when I get myself back to work (hopefully this week).

My good news of the week is that I have booked tickets to see "Mary Poppins" when we are down in London for the awards. I have my suspicions that this would not have been Andrew first choice of show, however I have been gently trying to enthuse by giving him regular renditions of "A spoonful of sugar" and "Chim Chiminey" (complete with actions I might add). I do wonder if karma was at work when after one too many outbursts of "A spoon full of sugar helps the medicine go down" I then suffered a 'sugar incident' when unpacking the Tesco shopping. Having taken delivery of my internet Tesco order, I was trying to unpack the bags and put everything away. This activity does make me considerably out of breath - there is something about bending down that makes me really out of puff (tying shoe laces are surprisingly difficult). I finally got to the end of the shopping bags, and was carrying a bag of sugar across the kitchen before standing on my tiptoes and attempting to launch it onto the top cupboard shelf. I was nearly blinded by the spray of sugar granules, before realising there was in fact a hole in the bottom of the sugar bag. Looking over my shoulder, I could see a trail of sugar making a glittery path across the kitchen tiles, along the work surface, and into the cupboard itself. Feeling tired and breathless I momentarily considered the idea of simply closing the kitchen door and leaving it for Andrew to deal with. But I'm not that cruel. Instead I opened the back door for some fresh air, started sweeping the floor and then climbed on a chair to reach the sugar laden shelf. Balanced precariously on the chair, feeling considerably out of breath as I try to clean the sugary mess, I see Seb out the corner of my eye, trotting past in a nonchalant manner, carrying one of my trainers. I dived off the chair to try and avert the impending danger, but it was too late. He was out the door and half way up the garden, rolling about in the wet grass with my trainer. Obviously having no footwear on, I couldn't go outside and Seb ignored my cries of "come baaaaaaaaaack". So, in a mature fashion I shouted loudly out the back door "Well you can keep the trainer. See if I care!" before slamming it shut. I really hope the neighbour wasn't in her garden.

I have been doing a bit of painting this week, as we are smartening up the bathroom, so needed some new pictures. I won't say much about the bathroom itself as it is a work in progress. Suffice to say that when Andrew asked to borrow my dad's 'stud finder' and 'pipe cutter', my dad made an emergency visit to find out exactly what he was up to. I'm sure it is all under control. Anyway, that also reminded me that I promised to post a picture of the sunflower painting I did for mums new kitchen a few weeks ago.

Sunflower

Bathroom Pics

Stardom




Warning: This is a VERY long post. What can I say? I had a busy week.

This week I had the daily mail interview, filming for the awards and the photographer taking pictures for the newspaper. So much for a week off work to recover from this chest infection. I am feeling absolutely shattered today, but my chest does seem to be improving, so hopefully a quiet weekend will get things back on an even keel.

I had the Sunday Mail interview over the phone on Thursday morning. It took 1 1/2 hours and she asked me so many questions I lost track of what I had and hadn't said. I think it will be very much a human interest story, as she wanted to tell my life story chronologically with facts about CF interspersed. She did explain that in order for people to read the article, you have to have that human interest angle, but I think I will find it very difficult to read, as I like to underplay any difficulties in my life, where as a good newspaper story will only serve to high light such issues. In fact the interview itself was emotionally draining, as she asked so many questions about both my sisters, and although I don't mind talking about them, it is hard to divulge such personal details to a complete stranger. On the positive side however, she was extremely interested in the issue of raising organ donor awareness, particularly as she has known someone who lost their fight with CF while waiting on a transplant. I hope that this message will come across in the article, and I will then at least feel that it has been worthwhile. I am not yet sure when the article will be printed, but it will be in the Tuesday health section.

I had arranged for the Daily mail photographer to come yesterday afternoon, after the filming for the awards, as I thought I could just wear the same outfit and my hair would at least be clean. However then journalist then informed me I had to "dress smartly, preferable wearing a skirt" with "no denims, no black, a pale top and plenty of make up". Ok then, that's me told! I then have a phone call from the "hair and make up artist" who would be popping round before the photographer arrived. This was getting more and more surreal, and I was becoming increasingly nervous about what was going to happen. As arranged the make up artist arrived yesterday afternoon just as the filming team were packing up, so I had to do a quick dress change and sit still to be 'beautified' before the photographer arrived. The make up was very nice, but far stronger than I would ever wear (although I'm reassured this is necessary for newspaper as the print quality is so poor). I am stating this now, in case I look like a dolly bird and anyone who has never met me thinks that my 'normal look'. Anyway, the photographer then arrived and promptly asked if he could take his shoes off so he could stand on my furniture. Okaaaaaaaaay. I then had to pose in various positions holding my nebuliser mouthpiece, while the make up and hair lady kept diving in between photos with a lip gloss and comb, to 'touch things up'. I kid you not. At one point I was standing in my bay window looking forlornly through the glass, while pretending to nebulise. Unfortunately my neighbours across the street chose this exact time to unload their supermarket shopping from the car, and I could see them looking over, wondering what the hell I was up to.

The 'photo shoot' then moved into the garden, where he asked me to sit on the grass. Seb having been shut outside in the garden clearly decided he would be left out no longer, so casually wandered into shot and lay down facing the camera. The photographer seemed to think this looked good and preceded to take lots of photos, asking me to move Seb into various positions. Have you ever tried to get a dog to sit where you want and face the camera on request?? Not an easy task. Seb however, played up beautifully for the camera, prancing around and jumping up on his hind legs to lick my nose repeatedly. When we moved onto to some other shots, that did not involve Seb, he decided it would now be a good time to steal the photographers bag and run round the garden at high speed so no one could catch him. Fortunately the photographer saw the funny side of the situation and in fact left me standing like a stooky, so he could go and take photos of Seb's antics as he raced round the garden, spurred on by the attention being focused in him again. Talk about stealing the lime light.

The filming was probably less stressful in a way, and not as bad as I had expected. They would pose a question, which I would have to incorporate into my answer, so that it looks on the film as if I am talking unprompted. This didn't take too long to do and I think I came across ok. Although I was inadvertently trying to put on my 'TV' voice. I am not sure what this will sound like, but I was going for 'polite and intelligent' and suspect I may just have achieved 'polite but pretentious' instead. I hope not. The cut away shots should be amusing, as they largely involved Seb. I was feeling particularly smug about this, as both Emmie and Anders (fellow CF'ers also going to awards) set the challenge that I would not be able to get Seb into the film. I didn't even have to ask, because as predicted Seb forced his way into the limelight by running back and forth in front of the camera. They asked me to throw a ball for Seb. I did so and Seb just looked at me, looked at the ball and ran off in the opposite direction. Prima Donna. They then asked "does he do any tricks". Tricks? Of course he does tricks I reply. So there followed a Seb variety show, involving play dead, hide the treat, dance, spin and generally look like a circus dog. I personally didn't think he was really up to scratch, being confused slightly by the outdoor setting and the strange people, however the camera man seemed delighted with his efforts. I always knew he was destined for stardom......Hollywood here we come.

Health and Horse Racing

Health wise, I'm not so good this week but I went up to the hospital yesterday and got kitted out with some IV antibiotics, so hopefully will be feeling in top form again soon. I had expected to need some IV's fairly soon anyway, but hadn't anticipated feeling quite so unwell quite so suddenly. It's funny how these things can just seemingly come from nowhere and catch you unaware. I also had a sleep study done last week, where I spent a night in hospital getting my overnight oxygen and carbon dioxide levels monitored. I had been experiencing some bad headaches on wakening in the morning, which can sometimes be due to a build up of carbon dioxide overnight, so it was best to get this checked out. The test basically involved some large clothes pegs clipped to my ears and a wire running from one peg to a monitor. Needless to say I didn't sleep very well. Fortunately however the carbon dioxide level was ok - a little higher than normal but not enough to cause the headaches (or any concern). The oxygen was lower than the last time it was recorded overnight, and it was decided that starting some overnight oxygen would be a reasonable step to take. Although in a way this signifies a deterioration in my health over the past months, I feel surprisingly ok about it all. Mostly because the purpose of the oxygen is to hopefully allow a more restful sleep (your body tends to wake itself up when you oxygen levels dip too low) and therefore can increase energy levels the following morning. At the moment my biggest struggle with getting to work, is the getting up and ready part, which I tend to do in slow motion due to feeling so physically tired. I am hoping this will be a little easier with the oxygen, although I appreciate that not everyone benefits in this way. I also appreciate that it is fairly unusual to have made it this far along the transplant route whilst avoiding overnight oxygen, so I really can't complain at all!

On the more positive news front, my mum and dad hosted a very successful horse race night in aid of the CF trust and the Butterfly trust (CF family support services). In one evening they managed to raise an impressive £2656.89. I include the 89 pence because myself and Corey painstakingly counted the money ourselves (please note that any error in this total is Corey's fault entirely). It was a good night, and I was especially pleased when my horse "Puff-a-Long" came from behind at the last second to win its race. However I think I could hear cries of "Fix Fix" when both Andrews horse, and his brothers horse went on to come first in their race also. Probably just a sign of good breeding....or something.

A small update on the CF awards front. I had a phone call from their PR agency this morning to tell me that they had sent out a press release regarding the awards, and a few people were interested in my story. Eeeeeek! In main, the Daily Mail were very keen to do an exclusive story (I think for their Sunday paper). I agreed that I would speak to the journalist, but that I really needed to know what angle they are taking with this story, and ideally would like to see a rough draft of the article before it is printed. I have had some cringe worthy experiences in the past when our family agreed to do some awareness raising articles at the request of the CF trust. One example was an article for a well known Sunday paper, where mum said something along the lines of "You have faith that treatments will improve, or a cure will be found". This was translated into "They pray together as a family every night that a cure will be found in time" printed under a large photo of the family. I was mortified going into school the next day, fearful that all my classmates now had this visual image of me kneeling with my family, our hands clasped in prayer saying a few rosaries before bedtime. Another article claimed that "Jacqueline plays basketball on a regular basis to keep herself fit". I was very interested to read this, as to my knowledge I did not play basket ball and I certainly hadn't mentioned basketball during the interview. I then realised they must have noticed the basket ball ring we had put on the side of the garage a few years earlier. Talk about making assumptions. Back in school again, I had to explain to my friends that no, I was not a secret basket ball player in my spare time and nor had I pretended to be one. Needless to say I stopped agreeing to do these articles after a while, and became very tired of the sensationalist angle they always have to take. However I do feel a certain obligation to raise some awareness of CF - in particular that it is no longer the childhood disease it once was. Most people with CF are now living well into adulthood, and more importantly, they are managing to lead a so called 'normal life'. If the article is going to be related to the awards (as opposed to a sob story approach) then I think it's a positive message for young people with CF, and their parents to read; the message that people with CF can go to university, can work, can get married, can be the proud owners of naughty little dogs like Seb, and essentially can live an enjoyable and fulfilling life.