Shopping and Squirrels

I've finally started to feel better after that viral infection. I was at clinic yesterday and although it was a rather average report, I am pleased to have survived the past couple of weeks without IVs, which is an achievement in itself. I have been given another course of oral antibiotics to keep me ticking over, but otherwise they seemed happy enough with my progress.

Life has been pretty quiet of late and I haven't been able to get out as much. That being said, I still managed an essential trip to the opening of a new Debenhams store. They sent an invite - it would have been rude not to go. To make it even more appealing, I had also coincidentally been sent an offer for a 'free Clinique gift pack' when you bought any 2 Clinique products before a certain date. I like free things. I like Clinique. The fact Andrew had to take a half day from work to take me to this store opening so I could get my free stuff is besides the point. I'm sure he didn't really mind.

I had to take the wheelchair and oxygen as I was still very breathless. It felt a little weird approaching the makeup counter in a wheelchair, with oxygen tubing on my face. I almost felt a little vulnerable and certainly lacking my usual confidence - almost as if I shouldn't be interested in buying pretty makeup because I clearly have much bigger issues going on. The lack of confidence didn't stop me buying lots of products in order to get my free gift pack though (which incidentally, was worth making the trip for). The wheelchair was quite useful at the overcrowded cafe though, as the lady directing people to tables got us a nice big table with comfy seats, then brought everything over for us. See, these things have their perks ;-)

The only Seb story I have this week, is the tale in which he nearly caught a tail. A squirrels tail that is. The story started with a squirrel who climbed up my drainpipe and then couldn't get back down again. It was clinging to the eaves of the house for dear life, whilst crying rather loudly. Now, I am not a big squirrel fan (since they eat all the bird food) but I couldn't leave it crying up there, so Andrew and myself were trying to work out a strategy for helping it down. Fear not, because Seb will save the day. He comes haring out the house, barking and po-going at the wall. The squirrel is so surprised and startled that it simply falls off the wall! Andrew and myself watch helplessly as it hurtles towards the ground, where thankfully its fall is broken by the plastic recycling box, which is bounces of rather impressively. The bouncing squirrel is stunned for a moment, allowing Seb time to race over and nearly grab its tail. The poor dazed creature realises what is happening and sprints up the lawn, with Seb hot on its heels. I really did think he was going to catch it a few times, as he was literally centimetres from its tail. Thankfully it confused Seb by suddenly changing direction, and it managed to escape. I have no idea if Seb would really even try and catch it, or if he just enjoys the chase. I would rather not find out..

Some more bird pictures, for the less juvenile readers ;-)

Bullfinch

Greenfinch

Goldfinch

Chaffinch

I can't believe it. Not only has my chest continued to get worse despite the antibiotics, but yesterday morning I woke up with some kind of cold/viral thing. Obviously the virus just has to run its course, but I've also started another oral antibiotic to try and clear my chest up. I am keeping everything crossed that it does the trick as I just can't bear the thought of going back onto IVs just now. The doctor has also suggested a different regime for the antibiotics I take long term, in the hope that it gives me a bit longer between infections, so it will be interesting to see if that makes a difference.

Between starting to feel worse and getting a cold, I did manage another shopping trip with mum. Good to see I have all my priorities right eh? We took my wheelchair this time, which was an interesting experience. It did make things a lot easier, as I didn't have to worry about the breathlessness and getting exhausted, however it was also quite frustrating at times. It wasn't so much the idea of people looking at me or anything like that, but more the awkwardness of trying to look at things when you are a) at a lower level than most of the shelves/rails and b) your position is under the control of whoever is pushing the chair. It really was like a "Little Britain" sketch at times, with me shouting in a loud voice (and pointing) "Over there" and "I want that". I had to speak in a loud voice, since I had my back to mum and she couldn't hear me, but unfortunately it did make it seem like I either had a hearing problem or was just a bit rowdy. Poor mum was exhausted by the end of the afternoon after pushing me and carrying all the bags. She was a very good wheelchair driver though and only ran over one persons toes. It was a cramped aisle and I think the person had abnormally big feet...

I was going to leave you with some more photos, but since you were all so juvenile about the last ones, I don't think I will bother ;-)

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.