Work, life and two-part TV programmes

I've sorted out my days at work, so from next week I will have a Wednesday off again, and instead work Tuesday, Thursday and Friday morning. Hopefully the day mid-week will make a difference to my current energy levels, which are pretty poor at best. I'm finding that I just come in from work at lunch time, collapse on the sofa and barely move from this position for the rest of the day. Logically you could say that I would be best not to work at all and then I could do other things with my day, but in reality I would probably lounge around, watch some TV, and if I was really pushing the boat out, go outside and fill my bird feeders. At least if I go to work I have instead:

a) Got up at a reasonable time
b) Dressed in something other than jeans, which is good for general well being (medical fact)
c) Spoken to real people i.e not Seb
d) Had some exercise, even if this is just walking to my car
e) Earned some money
f) Continued to further my career and expand my knowledge
g) Hopefully helped someone
h) Avoided recording and spending afternoon watching the first half of a two part crime thriller, without realising it was a 2 parter until watching to the end of the first part. Having not recorded the second part, I will now never know who the murderer is. Had I been at work, this disaster may never have occurred.

That seems like a lot of reasons to go to work actually, with (h) being a particularly compelling argument. I am so fortunate that my work place has accommodated and supported me at every turn, and I realise that without this flexibility I would have been forced to stop working a long time ago. I see other people with CF really struggling to get a foothold on a job, or to maintain a working life that fits in with treatments, hospital visits and the unpredictability of health from one day to the next, and I feel grateful for what I have. CF makes life difficult in many ways, but for me one of the worst is this dichotomy of mind and body; the mind is active, willing and ready to take on the world, yet the body simply cannot keep up. This is why it is so important for me to try and maintain an outlet for my mind, for a restless mind does not make for a healthy body. There is clearly a balance, and the line is unfortunately so thin I could be accused of failing to see it at times. However at the moment, despite my extreme tiredness, my weight is staying up, my lung function is stable and its now 4 weeks since my last IV's. Having a sense of daily purpose makes me even more diligent with treatments, keeps me more active and more importantly, prevents me from hearing the tick -tock of the transplant clock. I may be tired, but at least I know it's a tiredness from doing something, and not the tiredness that comes from the boredom of doing nothing. Despite all this, I know this is an area of my life that needs continual evaluation and adjustment and eventually I may have to find mental stimulation elsewhere, but while the list of pros outweighs the cons, its onwards and upwards. Or at least just forwards.


Footnote: There appeared to be a great deal of interest in my dying swan act. Sadly I could not find my tutu, and was therefore unable to perform. This is likely a fortuitous thing, as I suspect any clip I added may find itself on You Tube or similar, under the category of either comedic, or weirdo. Neither would be acceptable.

Another Footnote: For interest, here is a photo of Seb "threatening" his Loofah Dog (name on tag, not me being cutesy and weird) by dangling him at great height through stair bannisters. I have no idea what Loofah Dog did to deserve this treatment but I guess it must have been bad.

Ramblings of a Ballerina




Well, I don't really have anything interesting, witty, or profound to say this week. So I will give you a resume of the week instead. Exciting eh?

• I attended my first physio session using oxygen on Monday. The physio offered me nasal specs (tubing worn over nose) or a mask . Although the mask is probably better if you start to breathe through your mouth, as happens when exercising, I opted for the nasal specs, so I could still talk clearly. The fact I'm too breathless to talk and exercise at the same time is besides the point. I might have suddenly had something very important to say. Anyway I got on well, and definitely felt that I had increased stamina and was therefore able to complete much more of the class than previously (I was joining the cardiac rehab class again -the one with all the oldies). The only downside to completing more of the class, was my inability to move from the sofa for the rest of the day and evening. I may have overdone it slightly due to my new found energy (part of which may have been psychological), so I will maybe take it a bit easier next week.

• In the meantime I am supposed to be working on some upper body exercises - some light weights to build muscle and exercises to improve my posture, which is becoming more and more like the hunchback of notredame. I say 'supposed to be working on' because I haven't really done any weights yet, although I did practice my posture exercises whilst walking Seb today. Everytime he stopped to pee (which is roughly once a minute) I pulled my shoulders back and pushed shoulder blades together and held it for 10 seconds. I think I might have looked a bit odd - probably like I was doing a chicken dance or something. I'm not sure what a chicken dance is actually, but I may have just invented it. I only manage to walk Seb once or twice a week on the days I don't work, so I will have to practice these exercises at other times. Maybe when driving to work. Would that constitute as 'undue care and attention' I wonder?

• I am settling into my new job, although my days have now changed to a Tuesday, Wednesday and Thursday morning. The three days in a row regime is not really working out for me. When I woke up this morning my limbs felt like lead weights and my energy level was non existent. There was no way I could make it into work which I find both frustrating and disappointing. My chest isn't even particularly bad just now, so I feel like I should be able to cope and it seems utterly pathetic that I can't even do 3 mornings in a row. However I will see if I can shuffle things around a bit, so I can have a day off mid week again, which seemed to be easier. There is still the potential to reduce my hours to 2 mornings a week, but I am reserving this for when things get really bad. Whatever really bad is.

• I am going to see Swan Lake, the ballet, with my uncle. I used to love going to the ballet when I was young and first saw Swan Lake when I was five. At that time I wanted to be a ballerina, and attended ballet classes. The fact I am not a ballerina is nothing to do with CF holding me back, and everything to do with the fact you have to be good at ballet to be a ballerina. I was better at modern dance, where you got to shake your booty to the beat and wear ridiculous costumes in garish colours. Much more fun. I did at one time however, think I was cut out to be a ballerina. This delusion was not helped by my mum and my uncles blatant encouragement towards my 'dying swan act' (a famous scene from Swan Lake). If you have not seen the ballet, it basically involves much dramatic flapping of arms as the ballerina (swan) slowly falls to the ground before finally flapping her last and dying. A bit morbid for a five year old perhaps, but it wasn't so much the content or meaning, but the rapturous applause from my family whenever I performed it that spurred me on. I am all for encouraging children regardless of their talents, but I feel there probably are limits. I wonder after seeing Swan lake again tonight if I will feel the need to perform one last time, just for old times sake. I might even have that old tutu in the loft.....
  

Ready... or not?

So, I'm sitting at home in the afternoon having coffee with my friend, when the phone rings. I answer, and the nice lady says "Hello, I'm one of the doctors, phoning from the Freemans Hospital in Newcastle." There was a momentary pause before she quickly added "..but I'm not phoning about new lungs." At this point I exhaled slowly, gathered my thoughts and answered "oh well at least I can calm down now". There was probably only 3 seconds between her introduction and the affirmation that this was not a call for my transplant, but somehow a million different thoughts had managed to race through my head. More important than the thoughts however, is how I felt. A mixture of fear and excitement, followed by a sense of disappointment when I realised the call was not 'the one'. This is good. This means I am ready for the call, I am willing to take a leap into the unknown and a step towards my future.

This may seem like a strange thing to say, as you would assume I was ready for the call as soon as I went onto the list and that I have spent each day waiting and hoping, and looking at the phone expectantly. I haven't. I have instead spent a great deal of time trying to come to terms with being on the list, with being 'sick enough' to need a transplant and becoming comfortable with the decision I have made. People probably think there would be little to think about - surely you either need a transplant or not? Well, its just not that simple. Its all about the timing of going on the list; the risk of going on too early versus the one of leaving things too late. Due to a chronic shortage of donors, there is always a wait before suitable organs become available, which means the call could come in months, or it could be years. An average wait for lungs is probably around 18 months. They then have to take into account your blood group and height, and how easy this will be to match. For example, I have the commonest blood group so there are more people in my 'group', making the wait longer. Taking all this into account a decision about listing for transplant has to be made based on how you are just now, but more importantly, how much your health is likely to decline over the next 2 years.

There in lies the problem. If it was solely based on how I am just now, would I really take the risk of undergoing major surgery and the possible post operative complications? Unfortunately transplants are not a cure, nor are they fool proof and there always remains a risk that you simply swap one set of problems for another. Despite this however, life expectancy after transplant is ever improving, and the latest statistics for Newcastle suggest around a 50% ten year survival. Hopefully in the not so distant future there will be some statistics for 20 year ( or more) survival. With any luck I will prove to be one of them.

So, with that in mind if I ask myself again: based on how I am just now, am I ready to take the risk of transplant? Yes. Yes, because my fear of not being called is far greater than the fear of being called. The only certainty of not having a transplant is that I will deteriorate - it may be very slow, it may be sudden, but it will happen. With a transplant there are no certainties, but there is hope; hope for a new beginning and ultimately a longer, happier and healthier life. I think that hope is worth taking a risk for.

MOT

I had my annual review this week, or "MOT" as its sometimes called by the CF team (oh, how witty). If I was a car, I guess I would have been declared unroadworthy and towed to the scrapyard. Thankfully I am not a car. Actually overall things were not too bad, and I have stayed reasonably stable over the past year, albeit at a lower level than before, but by no means on a slippery slope. It was a long afternoon, starting with exercise tests consisting of a 6 minute walk and a 3 minute step test. The 6 minute walk is basically 2 cones set out in the corridor, and you have to walk back and forth between them for 6 minutes trying to cover as much distance as possible, whilst having oxygen levels and pulse monitored. I did manage to finish it, although found it much harder than last year, and my oxygen levels dipped more than previously. The step test is simply that - stepping up and down for 3 minutes. I only managed 1 minute, but that's not a huge difference to before, since the step test is much harder than the walk test. I then had full lung function tests, which take about 1 hour in total and are incredibly boring and surprisingly tiring. My lung function was 0.69L, which calculates at about 23% of normal. I had hoped for a little more having just finished IV antibiotics last week, however in fairness it appears to have been stable around this level for about 6 months and was only a few percent higher last year. Stable is good. On a much more positive note however, my weight has gone up a kilo courtesy of M+S, tesco carrot cake and banana nesquick. Did you know that a tiny (and I mean tiny) slice of carrot cake has 210 calories? Winner.

So, overall the doctor was happy with my current level, and I just have to continue as I am doing and stay as well as possible for the transplant. The only new thing I have to try is using oxygen when exercising with the physiotherapist at the hospital, as it will hopefully allow me to exercise for longer and thus gain more benefit on a fitness level. There is no need for me to use oxygen at home, as sitting at rest my levels are reasonably good, and I can wander about the house at my own pace. There could be an argument for using oxygen when walking about, but on balance the energy exerted carting the cylinders about (which are not very portable) would outweigh any benefits at the moment. I am more than happy with this assessment, as oxygen use would have a huge impact on my daily life, and if I can avoid this, then all the better.

Now that I have bored everyone with the intricate details of my clinic review, I will bore you further with a Seb anecdote.

Seb: "The moody dog"

I am trying to watch TV (something quality like Richard and Judy I believe). Seb is annoying me by bringing various toys over and shaking them at me, squeaking them at me, and generally trying to entice me into play. After 5 minutes I give in, and start wrestling a large squeaky cow from him. The play continues for about 3 minutes, when suddenly Seb drops the toy, sits on the floor and stares at me with a furrowed brow. I shake the toy, I squeak the toy, I bop him on the head with the toy. He does not even blink. Clearly I have done something radically out with the rules of the game but I am not sure what, as only Seb knows what the rules of the game are. He continues to stare for several more minutes, before I intervene and ask for 'a paw' hoping to lighten the mood. He now stares straight past me, and becomes suddenly deaf. I ask again. I ask for a third time, and as well as being deaf, he now becomes intently interested in his back paw. I ask for a fourth time, in a loud commanding voice. He continues to stare past me, and lifts the paw about 2cm from the carpet, whilst sighing loudly. I kid you not. I'm not sure that this is normal dog behaviour?

Let there be light!




Well I am nearing the end of my IV antibiotic course now and am thankfully feeling much better. I even managed a 20 minute walk with Seb yesterday. It was only meant to be 10 minutes (I now time 5 minutes walking, then turn back as otherwise I keep walking until I'm exhausted and then realise I still have to get home). Anyway, around the 4 minute mark this lady was passing me and paused to ask questions about Seb (what kind of dog? How old? What's his name?). She then slowed down and started walking with me in order to continue her conversation, which involved a rather in depth description of her nephews dog allergies. I thought it would look really rude if I suddenly said "Actually I was just about to turn round and walk back the way I have just come, so can't really talk to you right now". So I just kept walking. I was beginning to think I would be walking to the next town at this rate, but thankfully after about 5 minutes Seb became intently interested in a lamppost, giving me an excuse to lag behind. The lady got bored waiting and moved on, and I quickly scurried across the road before she thought of another question. I was very tired when I got home, but was pleased I had managed to walk further than expected and reassured that the IV's have done the trick.

Today we went to B+Q to look for new lampshades. There isn't really anything wrong with the ones we have, other than the fact that with those energy efficient light bulbs you can't see hee-haw. Even if you leave the bulbs to 'warm up' for 5 minutes (by which time you have forgotten what you came into the room for anyway) there is little more than an eery glow. I have been complaining about the lack of illumination in my life for months, and although I know it's not environmentally friendly, I did even ask Andrew to put some normal bulbs back in. Being in his 'green phase' he was horrified by this request, and instead removed the lampshades from the bedrooms. I agree that this was effective, but it did give the rooms a rather unfinished look, and the impression we were either moving out or had just moved in. So, we needed to find light shades that weren't ..err..so shaded. After wandering up and down the aisle in B+Q for 15 minutes debating the 'see through-ness' of several light shades, we settled on ones that were kind of wire effect balls so you could actually see the bulb. What we didn't consider was the fact that the energy efficient light bulbs are both large, and ugly, so being able to see them wouldn't be that desirable. So on spending a not insignificant sum on two new light shades and energy efficient bulbs, we both looked at them for a few minutes, before Andrew turns and says "Ah well, maybe we could just put normal bulbs in them and they would look ok." You have to love the man's logic.

A totally random observation I just have to share from this week involves warnings on packaging. The first one I came across was while studying my shampoo bottle in the bath (I get easily bored). I was amused to read under the list of ingredients, in bold: "WARNING, THIS IS NOT FOOD." Now, I understand the words "wheat grass and kiwi" may be confusing to some, but generally the words "shampoo" and "apply to hair" would resolve any doubt as to the edibility of the product. More amusingly, you just know that this warning probably comes from a law suit at some point, where someone, somewhere has used it as a salad dressing or the likes.

The most bizarre packaging information however was on a takeaway pizza box, where in capital letters is assured me that "We guarantee that this product contains no genetically modified organisms."

Dictionary definition of organism; a form of life considered as an entity; an animal, plant, fungus, protistan, or moneran.

Now, I could either take this to mean that "There may be living things in your pizza, but no need to worry because they aren't genetically modified." Alternatively it could mean "Don't worry, there are no genetically modified living things in your pizza, just dead ones." Ah well either way, thats ok then. I feel so much better knowing that.

Variety is the Spice of Life




I should really have known that by mentioning the words "IV free" in my last blog, that I would be tempting fate. In response, my chest decided to flare up the day after I made this bold statement and I am now back on IV antibiotics. I think the sinus infection was probably the culprit, but at least the facial pain from that has eased a little this week, and I'm sure the IV's will help clear it up further. I am therefore just trying to take things easy, do lots of physio and make sure I remember to eat. I had another little 'talk' from the doctor about my weight. I actually haven't lost any, I just have stopped putting it back on. She feels that I have not really pulled out of this frequent infection cycle, and that some extra weight may well be the way forward. One of the reasons for needing this transplant is the frequency of my infections, but the irony is that I actually need to be infection free at the time of the transplant, so the need to lengthen these windows of opportunity is utmost.

I know, to most people, it will seem completely alien to struggle with weight gain, as opposed to weight loss but the two are actually remarkably similar. Both focus on food; monitoring the kind of food you eat, when you eat it and ultimately how many calories are consumed in a day. Regardless of the intended end goal, the process is similar, and at the end of the day, it is tiresome, unnatural and turns eating into a daily chore instead of an enjoyment. In CF, the required calorie intake is much higher than normal yet this is set on the background of food not being absorbed efficiently due to enzyme deficiencies, trying to keep blood sugars stable in CF related diabetes, and active infections leading to nausea and appetite loss. This imbalance, unsurprisingly, can lead to a constant battle of wills. I manage to offset this imbalance with overnight feeds, which provide me with an additional 1500 calories a day. Although it may be hard to believe, I do actually eat three main meals during the day, although I admit that portion size is on the small side. In addition, there are many supplemental drinks, powders and potions (I believe I have tried them all over the years) that can be added to foods, or taken on their own. Some of them are more bearable, especially the milkshake style drinks, so you would think it would be easy to just have one or two of these supplements a day and be done with it. However, I could maybe liken this to the Slimfat diet or similar - I am sure in the first week of such a diet, you think "hey this is great, these shakes actually don't taste too bad. I can manage one of these a day", but after a few weeks pass you really couldn't face even looking at one, never mind drinking it. In any diet, motivation soon starts to wane and in true Scottish terms "you just take a scunner." Based on this observation my new weight gain plan is going to be based on real food, but in edible portions and of varying types, because if eating can be made somewhat less of a chore, I can perhaps start moving in the right direction. A little of what you fancy is never a bad thing, so I suspect a trip to the local M+S food store may be a productive first step, where they have lots of mini deserts you can just eat from the pots, and those big tubs of mini bite treats in every variety. After all, they do say that variety is the spice of life.

To end on a completely random note, I have added this video of Seb from my mobile phone. This was taken to illustrate the fact Seb cannot actually be seen in the garden when it has been snowing, which I guess is testimony to his Tibetan roots. On calling him it seems that he has not responded, until this little dot just appears from nowhere and flies into the house. I am not sure why I find it so amusing, but I do. Simple things eh.

Shake those Giant Electric Bootees





I haven't really blogged any health updates for a while, although you can generally assume this is a good sign. I have been IV antibiotic free for 5 weeks, and oral antibiotic free for 3 weeks. Weight, lung function and oxygen levels are all much the same as before Christmas. I don't expect much shift on the latter two, and am happy just for 'stable' but would still like some increase in my weight. My appetite has taken a tumble in the past two weeks, largely due to flair up of sinusitis which, as well as causing intense facial pain and pressure, has the unfortunate side effect of removing my ability to taste. Sinus problems are common in CF, and I've lost count of the number of times I have had surgery to try and alleviate chronic symptoms. The benefits are usually fairly short lived, but sometimes its just gets to that stage where you can't take any more. At the moment I feel I have tried everything - daily saline nasal washes (by the way, this is an ENT recommended practice, not some voodoo thing I picked up on the internet), steroid nasal sprays, decongestant tablets, painkillers of every variety known to man, cold compresses, hot compresses, massaging my face, massaging my head, steam inhalations. I even bought some herbal remedy which tastes disgusting, so logically must be doing something good. Is that not how these things work?! The frustrating thing is that I know even if surgery would help, I would not be considered fit enough for a general anaesthetic, for what is ultimately non-essential procedure. I'm not sure whether this surgery can be done under local anaesthetic but I would be willing to try anything at this stage. Now I have got that off my chest, I'm sure this will just be an acute flair up, things will return to their grumbling baseline soon, and all will be forgotten by my next blog entry.

On an entirely different, and less woeful note, I was at one of those fancy spa's last week. I had gift vouchers to spend, and being unsure what treatments would be suitable, I had booked a 2 hour slot where the therapist decides on treatments best suited to your needs. Apparently I needed my feet encased in paraffin wax and my face required 20 products to be applied in quick succession. You learn something new everyday. The foot therapy started with a 'foot spa' which was essentially a fancy way of saying they needed to dunk your feet in some warm water to make sure they were clean before anyone touched them. Fair enough I say. After this I had to relax on the couch while the therapist did unmentionable things to my feet. I suspect one of these was to remove my cuticles, but it did in fact feel more akin to having surgery for an ingrown toenail. As I was lying there in the darkened room with my eyes closed, listening to whale music and wincing in pain, I did consider why it is socially acceptable for someone to inflict pain on you just because it is under the guise of a 'treatment' or 'therapy'. I believe a form of Japanese torture is to insert bamboo sticks under the nails. Are you seeing any similarities here?

After the initial pain, the process moved in an entirely surprising direction. Having buffed, polished and filed my toenails to perfection, she then encased my feet in paraffin wax, wrapped them in (what felt like) plastic bags and then popped my feet into giant, plastic, electric heated slippers. She then left me, plugged into the wall socket, for 10 minutes. I was momentarily concerned about the fact I was plugged in, but thinking back to science class, I don't think paraffin wax conducts electricity. Having reassured myself that I was not about to be electrocuted, I then took a fit of the giggles at the absurdity of my position (fortunately therapist was out of the room during this outburst). People everywhere in the world are going about their daily business, commuting to work, earning money to pay the next bill and generally worrying about life's stresses.... and there I am lying in a darkened room in my pants, draped in a towel and sporting the worlds largest electric booties. What is the world coming to?

The facial component was somewhat less bizarre, although I am not entirely sure if all the products applied to my face (and then washed off, I might add) were strictly necessary. I was also slightly worried about coughing in the therapists face, as she had wrapped me up like a mummy in the towels, so I couldn't even lift my hand to cover my mouth. I therefore attempted to cough with my mouth closed. This is a fascinating and very useful skill, which I hope to develop. The facial then ended with a wonderful neck, shoulder and head massage, which I would gladly experienced for the entire 2 hours. However I suppose if that had happened, I would then have missed all that earlier fun with the torture and the bootees. We couldn't have that, could we.

Karaoke Queen




Well tomorrow will be the start of week 2 back at work. Relatively speaking, the first week back wasn't too bad, but I did quickly notice that on the three mornings I went to work I felt quite unwell in the afternoon, and became incapable of moving from the sofa for the rest of the afternoon. I think this was even more noticeable after two weeks break, where I had felt reasonably well most of the time, and could just take everything at my own pace. I am not sure what this means for my future work plans yet; after all it could just be the normal 'first week back to work syndrome' that everyone experiences after a holiday, not to mention the fact the weather is so depressingly wet and miserable at the moment. January blues indeed. On the upside, I am changing placement in 3 weeks time and my new work place will only be about 15 minutes drive away, and since I've worked there before I already know all the staff, so I wont have to explain about CF and the transplant situation all over again. I am looking forward to the change, and am hoping it will be more suited to my health situation and, with any luck, I may even find it a little less tiring.

Due to the weather situation, myself and Andrew barely ventured out of the house this weekend. Even Seb didn't seem that keen to go outside, and being the strange dog that he is, he normally finds the rain and wind 'invigorating'. Lucky him. Anyhow, we managed to whittle away several hours on both Saturday and Sunday playing on the Singstar game I got for Christmas. To anyone who hasn't seen it before, it is essentially an elaborate karaoke game where you are given scores at the end of a song based on your performance. In a previous post, I believe Nicola did leave a comment warning me not to listen to the 'playback' mode. I should have taken heed. Having scored a 'Rising star' on my Tiffany performance (it is clear I grew up in the 80's) I decided to listen to the recording on playback. Oh my God. Bad, awful, tone deaf and utterly painful are words that barely capture the essence of my performance. I was so bemused by the fact I seemed to have been gaining points for all my correct notes with little comments like "cool" and "great" popping up on the screen. I then realised this was perhaps due to the fact we were playing it on easy mode where you are awarded points not for hitting the right note, but for being somewhere in the ballpark. On trying a song on the difficult mode, it became clear I was barely in the ballpark, never mind scoring any goals. The little "cools" were replaced with "awful" and "bad" on every line I sang. It became increasingly obvious that when Seb had been intently pawing my arm earlier in the game, he was not, as I had believed, 'attention seeking' but was probably just begging me to stop. However, I will not be defeated. They say practice makes perfect so I'm sure in another...err...year or two, I will have made some progress. In the meantime I will revert to playing it on the easy mode, where being in the ballpark is rewarded. Ignorance is, indeed, bliss.

On a less frivolous note, my friend Emily is still in ITU after receiving her transplant 10 days ago. Due to the development of some problems, she had to be put back onto the ventilator last Thursday and, from her blog, I gather all the doctors can say at the moment is that "she is not out of the woods". She has come through many rocky times in the past 2 years while waiting on her transplant, so I have every faith she can pull through this and make a full recovery. Something my mum always says is "Where there is life, there is hope" and I truly hope that Emily's new life is just about to begin.

It's back to old clothes and porridge

For those non-Scottish readers, the above should be pronounced something like "It's back tae auld clathes and parridge". It makes so much more sense in a Scottish accent. Honest. Anyway, what I mean is that the festivity is now well and truly over and this week I've been thrown back into the reality of life. Work, food shopping, cooking, trying to nurse back plants that have not been watered for 2 weeks, going to bed at a normal time, and getting up at an abnormal time. I am seriously considering moving back home to my parents permanently. Life was so much easier there.

There has been some ongoing celebration however, as a good friend of mine who I met via the CF trust forum a couple of years ago, has finally received her double lung transplant after waiting almost 2 years on the list. I have been avidly watching her blog for updates and so far all seems to be going well and she came off the ventilator yesterday, which is a massive step forwards. The next stage will be require a lot of hard work, as she will have to build up her physical strength in order to use those new lungs to their full potential, as well as simply trying to recover from such major surgery. I will be hoping and praying for her to make a full and speedy recovery over the coming months.

Having someone I know well actually go through this life changing operation is a strange feeling. It makes it somehow seem more real than before. My only past experience of life waiting for transplant was with my sister Frances Ann, who waited 2 1/2 years, but still never got that call. I think as a result of this I sometimes do not believe I will ever get called, or that the whole experience is even real. In a way this is partly a self protective response, where I do not want to think about my situation or consider the possible outcomes, but it is also partly due to a real belief that the call may not come. I do not mean this in pessimistic glass is half empty way, but only in a realistic, what are the odds calculation.

However, what I have realised in the past days is that the odds are the same for everyone. There are only two options, therefore I am just as likely to be called as not to be. Seeing a friend receive that call just goes to show me that it does happen and it could happen. Anytime. On that basis I have been a little more alert and a little less blasé. I even checked my "Newcastle suitcase" (you have to have a bag packed ready to go) to make sure I had in fact put sensible things in it, having not looked at it since I was listed 6 months ago. The friend I was talking about once told me that when she re-checked her bag, she found that in the stress of being listed, she has packed something along the lines of 5 pairs of pants and a poncho. That would have been a good look post-op! Luckily I found I had packed clothing items for both halves of my body, which was a relief to say the least.

Health and Happiness for 2007

I would just like to wish everyone a very Happy New Year!

Traditionally this is a time to look back over the past year; to lay your life out before you and examine the ups and downs, the good and the bad, and to wonder how you can carry forward only the positives and create a new year filled with opportunity and adventure. However, looking back on last year I don't think I can separate the good from the bad. 2006 was a year where I was forced to make many adjustments in my life: to adapt to declining health; to learn that work does not define me; to relinquish some of my independence and accept help from others; to be placed on the transplant list and learn to live with both the fear of being called, and the fear of never being called.

I suppose written in black and white, my list of memories for 2006 could appear to be memories of sad and stressful times. Yes, like everyone else I have had my own share of sadness, my own share of stress, but equally I have had more than a generous share of happiness, laughter and pure unadulterated silliness. Adjusting to life on the transplant list has been both the lowest and the highest point of the year. This dichotomy arises from the simultaneous fear that the transplant will not be successful or that it could bring a whole new set of problems, set against the glittering hope that it will be a gift that is truly life changing.

I will not look look back on 2006 as a year to be forgotten, or one I need to put in the past. I will instead carry forward what I have learnt, and my resolution will be to continue to learn, to adapt and to enjoy my life as it is. Should this be the year where I get that 'call' then so be it, but if it is not I am sure I will still be much richer in experience, much wiser in mind and hopefully just as healthy in spirit by next New Year. So, here's to Health and Happiness for 2007!

Christmas: The Musical

I was a little frustrated to discover that my pre-emptive strike with IV's had missed its mark slightly, therefore I had to start some oral antibiotics a few days before Christmas. On Christmas eve I was feeling extremely puffed, resulting in a forced suppression of my usual hyperactive childlike behaviour of chatting excitedly, whilst repeating at 10 minute intervals "only one more sleep 'til Christmas!" My calm and contained mood extended into the afternoon, when, as per tradition, my friends came over to visit and we chatted and exchanged gifts in a mature fashion. However following the family tradition of watching a Christmas film before bedtime, I could contain myself no longer. This year we watched "Santa Claus the movie". I don't know how I could seriously be expected to watch a film with Santa, reindeers, and magical moments, without becoming a little excited. The result was a serious case of insomnia, where I was still lying awake at 2am listening for the jingling of Santa's sleigh.

Christmas morning started at 7am (this is the earliest I am allowed to wake anyone else). I opened my stocking first and gave Andrew his, kindly allowing my parents another 10 minutes in bed before I woke them up by playing the First Noel loudly on the piano. (And yes I know at 27 it would appear that I am too old for a stocking but I say bah humbug to that). We then spent the next hour (or two) opening gifts and strewing paper around the living room. In the middle of the mayhem Seb ran about franticly squeaking his new toy and generally looking pleased with himself. Several hours were then spent recovering from this burst of activity and excitement before we all sat down to a lovely Christmas dinner. As usual mum cooked a beautiful meal, and although I had to go and lie down half way through (due to tiny appetite and lack of sleep) I did manage to squeeze in dessert later in the evening, so did not miss out. After lying down, I clearly made a full recovery as was later to be seen clutching the microphone of my new PS2 with sing star game, whilst belting out Patsy Cline's "Crazy". I understand some people are under the illusion I may be able to sing because I played the piano when younger, however, I can assure you the two talents are in no way interchangeable. The fact the sing star game scores your performance was testimony to my lack of musical ability, as is the fact that even my mum tells me to stop. Despite the poor performance, it was great fun and I'm sure it is a wonderful lung workout, if nothing else.


I am now just taking things easy and preparing for the next burst of activity over new year. This will be spent at my mum and dads, but Andrews parents will also be joining us. I suspect the sing star game may make an appearance. As you can see, Seb is also relaxing after all the excitement. He can't quite believe he has to wait another whole year before Santa comes again.

Christmas Traditions: Old and New

Christmas is a time of wonderment and enchantment; the season of glittering Christmas trees, twinkling fairy lights and beautifully wrapped gifts that rouse a sense of excitement and intrigue. Yet, paradoxically it is also a time of reflection and contemplation, where emotions can be at odds with one another; joy and excitement suddenly and unexpectedly giving way to a sense of sadness. It is a time of year when the loss of loved ones becomes painfully clear and old emotional wounds can begin to ache. Traditions slowly evolve to encompass the changes loss can bring upon family dynamics and with time everyone gradually learns to accept and adapt.

These thoughts crept into my consciousness last weekend when I was decorating the Christmas tree. I bring back decorations from all my holidays as a souvenir, so decorating the tree is like flicking through an old photo album. There are glittery baubles from New York, where I got engaged, a bright yellow duck from Boston where I completed a 4 week elective at university, small tartan (!) clad reindeer's I bought when Frances Ann and I went on a shopping weekend for her 18th birthday, a glass angel from Rome, which was the last holiday abroad I went on before being listed for transplant. Memories from over the years flashed through my mind, and filled me with a sense of accomplishment with where my life has taken me. Yet it also reminds me of how much living I still want to do, and how much I have to lose if I do not get a transplant. I then came across the angel decoration in the photograph, which is a little wind chime that Frances Ann bought me the Christmas before she died. I treasure this dearly and it takes pride of place on the tree. After the initial bubbling of emotion settles, I can look at the tree every day and in seeing the angel, I have a reminder of my beautiful sister and each Christmas we shared together.



So, yes traditions will evolve and people will adapt, but memories from over the years will never fade. Christmas may be a time for reflection and reminiscing, however it need not be a time for mourning. Memories should be a source of laughter and, as a family, we should embrace Christmas with the love and joy we have always known, and not feel at all guilty for enjoying the celebration. I know that Frances Ann is with us is in spirit and mind, and she will look on with a smile and a nod of approval. After all, I still have many more Christmas days to celebrate, and many more decorations to collect, so I intend to approach the season as I always do - with the attitude and mentality of a 5 year old.

p.s only 8 more sleeps

The World's Cleanest Fly




This is a story about a pair of latex gloves, a sterile medical procedure and an unfortunate fly. Interested? Then read on.

So there I am, sitting quietly, minding my own business, whilst making up this afternoons dose of intravenous antibiotics. As I have a port (permanent IV line under skin) the whole process has to be extremely sterile in order to avoid any infection being introduced into the line. This involves excessive and repetitive hand washing, careful opening of syringe and needle packets onto sterile drapes, much swabbing of things with alcohol wipes and most importantly, the donning of sterile latex gloves. Each pair of gloves is packed into its own sterile package, which when opened has a further packet to unfold, thereby revealing a pair of neatly presented 100% sterile gloves. The packaging assures me this to be true, unless opened or damaged. The packaging on this afternoons gloves was neither opened or damaged, so you can imagine my surprise when I unfolded the packet to reveal a dead fly firmly squashed onto one of the gloves. I thought my eyes were deceiving me, but I could clearly make out one flattened and distorted wing, and what looked to be some sort of antennae sticking out at a funny angle. I am intrigued to know at what stage in the process a fly managed to find its way into a latex factory and onto my gloves. I assume that the gloves are made sterile by irradiation after initial packaging, which would imply the fly has also been irradiated until sterile. Therefore I am now making claim to owning the worlds cleanest fly (albeit a dead one). In case anybody is concerned, I did not use the gloves but have instead kept them as a souvenir.

From the above ramble, you will have guessed that I have gone ahead with the pre-Christmas IV's. This was largely decided when the CF nurse phoned last week to say " Do you want to start your IV's tomorrow?" My initial response of "uhmmmmm..." quickly prompted a retort of " tomorrow or monday; those are your choices". There did not appear to be a third option of "neither, because I'm not having any". I therefore decided to go for Monday, and was relieved to have seemingly made a sensible choice, because over the few intervening days I was becoming more symptomatic and would have required IV's before Christmas anyway. The only downside is a very itchy head that one of the IV's appears to be giving me, in combination with numbness around my mouth (like I've been to the dentist). As a result I am being forced to put a great deal of effort into the avoidance of excessive head scratching and drooling whilst in public.

Its less than 3 weeks to Christmas, so I am getting a little excited. I am not into my countdown of "..it's x amount of sleeps until Christmas" yet, but this will come soon enough. I think I will put my Christmas tree up this weekend, and simply ignore any bah humbug 'it's far to early' comments. I have already donned my staircase with magical icicle lights, which I may be inclined to leave up well into the new year; my excuse being that LED's are more energy efficient (or something).

Buddha Baby





This is a projection of how I may look by next year should I continue my current weight gain. I think its rather attractive. Well, it may be a little bit of an exaggeration, but I have now regained all the weight I lost over the summer (about 10 pounds in total) so if anyone wishes to now refer to me as 'Buddha Baby' it would not be entirely inappropriate. I think I have managed this due to a combination of consistently eating breakfast and making sure this is something appropriate like weetabix, instead of my usual choice of, for example; 2 chocolate digestives, one savoury mince pie, one slice of fruit loaf, one caramel log, or 2 chocolate truffles. I have not stopped eating the above selection of goodies, but have instead moved them to a more sensible 'supper' slot, which has been created by attempting to do my night time physio earlier in the evening. These small adjustments all appear to add up (to 10lbs in fact). I have no doubt that the period of time off work has also aided this weight gain, and this gain has in turn kept me infection free over the past 5 weeks and also pushed my lung function back up to what it was earlier in the year (as was measured at clinic last week). So I am delighted that my month long sabbatical was indeed worthwhile.

Speaking of work, I am now into my second week back. I didn't post about it last week, as I was a little disappointed with my first day back, which had left me feeling washed out and exhausted. However I suspect this the normal first day back feeling most people would experience, and I have found it to be easier this week. The 10 am start was definitely the way to go, as I now have enough time to complete all treatments and have the added bonus of missing the rush hour traffic. Winner.

Now my dilemma for this week is deciding whether I should go on a 2 week course of intravenous antibiotics prior to Christmas in an effort to ensure good health over the festive period. In some CF centres the use of 3 monthly IVs is advocated regardless of whether patients are symptomatic, but in my case, I never get to 3 months without needing them anyway. However, although I had some oral antibiotics about 5 weeks ago, I have now been off IVs for almost 3 months. Record breaking stuff. Logically you could therefore assume that I would be likely to require IVs before or during the Christmas period, and therefore logically it would be better to strike now and have them done and dusted by Christmas day. However,if you take into account the fact I feel quite well just now, it would then appear rather illogical to pump myself full of intravenous drugs that will predictably make me feel not so well due to side effects and add another hour or two off treatments onto my day. Also from past experience, I can become unwell within weeks, if not days, of a course finishing, so it does not even come with any guarantees. I will debate this over the coming week. The fact I both suggested it and agreed to it at clinic last week is irrelevant. I think I am entitled to change my mind. Fifty times a day it would seem.

Chicken Soup for the Soul

I spent this morning making chicken soup (with stock made from an actual chicken no less).. and it really is good for the soul. Not the chicken soup itself (although it was rather heart warming), but the ability to do something constructive and useful with my time, with the added bonus of creating simple lunch solutions I can freeze for those times when all I can find in the cupboard are savoury mince pies and chocolate digestives. The fact I knew how to make chicken soup is a direct result of mum' s frequent visits during which she attempts to mould me into a mini-me. Worryingly it would appear that she is succeeding.

On a serious note though, I have discovered, not surprisingly, that doing at least one constructive thing a day on the days when I'm not at work is indeed good for the soul, and more importantly, is necessary for a healthy mind. Everyone at some stage dreams of a days rest, tucked up on the sofa watching day time TV, but when this becomes your reality it can fast become your nightmare. There is nothing quite so depressing as wondering where your day has gone, then realising you have in fact dedicated it to Trisha, Phil and Fern...and are now recounting stories from your marathon viewing to anyone who cares to listen. As much as it is important to takes thing easy at times, it is also important to achieve the balance between activities that give you pleasure and those that give you a sense of achievement. In fact pleasurable activities become even more so, when you have also completed a more accomplished task (for example, sitting down to enjoy a cup of coffee and some trashy TV after completing the housework is so much more satisfying).

Unfortunately the problem is that with declining health it can become more difficult to complete any tasks, and indeed I have found that day to day achievement based ones generally seem to be more physical e.g cleaning, shopping, cooking, running errands. In this instance it is important that I recognise my limitations (hence my mum visiting so often and taking on my errand running, dog walking, cleaning lady post), but it is also important that I don't simply sit back adopt the sick role, throw my hands in the air and my towel in the ring. Quite frankly, I am still completely capable of throwing the towel in the washing machine instead. The other difficulty with CF in particular is the fluctuation in health and hence fluctuation in ability. I can go from being able to take the dog for 10-15 minute walks and managing a short stroll round the shops, to barely being able to tie my own shoelace. Literally. So what I have to be careful of is not always assuming I can't do something because I couldn't yesterday, but vice versa assuming I will be able to do it tomorrow because I could today. So in essence I need to push my self to achieve what I can do today, however small or large an accomplishment it might be, because unfortunately through this journey towards trasplant many of these simple tasks may become much harder, if not near impossible. I also need to retain as much of daily normality as possible to ensure an easier transition post transplant..can you imagine having given up all the most boring accomplished based tasks pre-transplant only to discover you no longer have an excuse to avoid them afterwards? I can't imagine I would be shouting "Oh yay, I now have two new lungs, where is the iron?!" Its not a head transplant I'm having.

Playing to the Gallery



Since last posting I have learnt two important, yet costly, facts:

1. The list of official veterinary diagnoses include rare conditions such as "Wimpy dog" and "Playing to the gallery"
2. "Wimpy dogs" who enjoy "playing to the gallery" generally result in large and unnecessary veterinary bills.

I shall explain further..

It started off as an average Wednesday. After running some errands I was relaxing on the sofa, and Seb was amusing himself in the garden. He normally scratches the back door when he wants back in, and after an unusually long period of silence I went to check he had not escaped from the garden (again). In fact he had not escaped but was instead sitting on the doorstep holding one bloodied paw out at a funny angle, and looking very sorry for himself. He hopped into the house on three legs and just stood there looking bewildered. I scooped him up and laid him on the couch so I could inspect the paw. Realising something unusual was happening (he is not normally allowed to lie on the couch), Seb lay back with all legs in the air, looking quite pathetic and folorn. On closer inspection I could see he had caught a nail in something and it was bent inwards, digging into the pad of his foot and bleeding. I managed to get an appointment at the vets for later that day, and in the meantime Seb lay in his basket holding the foot up in the air and looking perplexed. If I left the room, he would slowly lift his head up with great effort, as if the sore foot was now also affecting the muscles in his neck. You know the way someone who has the cold shuffles about in a pathetic fashion, just to remind you they are ill.

On seeing the vet, he was at first worried that Seb had broken his leg because he wouldn't weight bear at all. On examination however, it appeared to just be the loose nail, which the vet pulled off with one swift move. Despite the removal of the offending nail and a painkiller injection, Seb still refused to put the paw down and stood there defiantly holding it out at 90 degrees. The vet appeared amused, and said "I think there is an element of playing to the gallery here..he should be able to put the foot down now". I was instructed to keep the foot dry and clean with salt water, and if he still refused to walk on it by the next day to come back.

Next morning and Seb was still hopping around like a strange lopsided bunny, holding the foot out in a dramatic fashion just in case we had forgotten he was an invalid. So it was back to the vets for further inspection. There was nothing obvious to be seen, but since he still refused to put the foot down at all, an x-ray under sedation was now deemed necessary and I had to leave him at the vets for the day. The fact that when the vet was examining his foot, Seb was also licking her face at the same time, made me a little suspicious of how sore the foot really was.

I returned to collect Seb at the end of the day, to find him hopping merrily about the veterinary practice with his little bandaged paw looking quite pleased with himself. The vet explained that she had looked carefully at the x-ray and could find nothing wrong. She then hesitated before announcing "I think its really a case of a wimpy dog". The official diagnosis. Wimpy Dog.

It cost me a grand total of... *drumroll* ... £160 to discover that Seb had a broken nail, is a total wimp and enjoys a bit of amateur dramatics. Well, you know the old fable "the boy that cried wolf"...I'm going to read that story to Seb tonight and he better take heed.

I tried to take this video on my mobile last night to demonstrate the little hop-a-long dog. Due to the poor quality, I took the second video using my camera barely 10 minutes later. In that time, Seb had decided after 2 days of no weight bearing and £160 vets bill, that he could in fact walk on the foot after all and no, he would now not be performing for the amusement of my blog readers. Born actor I tell you.

Returning to work and driving hazards

Well this is my last week signed off before I go back to work and I am already feeling anxious about returning. I thought all this lounging about the house would give me far too much time to dwell on how I was feeling and make me overly focused on CF, with my daily routine involving an analysis of symptoms and what they might mean. Interestingly quite the opposite has occurred. Not having the pressure of going to work has made me much less focused on how I feel on a day to day basis, and much more able to just take things as they come. When I'm working, I am much more stressed when I have an 'off' day because I then have to decide whether I am just tired, a bit run down, have an infection brewing, or am just having 'one of those days' that the rest of the non CF population are also susceptible to. I then have mini battles in my mind over going to work, not going to work, seeing how I feel in the morning, seeing how I feel when I get to work, phoning the hospital, not phoning the hospital. These internal conversations with myself can go on for some time, and tend to eat into more useful activities, like watching TV and relaxing, or more importantly, sleeping. The most likely conclusion to these events is that I phone mum and ask her, because clearly she has the answer to everything.

Anyway, despite my anxieties I am looking forward to going back to work. I do really enjoy it when I am well, but unfortunately even my little 4 hour shifts can feel like an eternity when I don't feel so well. However I have now had my hours changed to start at 10am, which should be much easier, and I have also have vowed to actually stay off work when I am unwell regardless of whether this happens the same week I go back. Now I hope someone will remind me off this the next time I ignore my own advice.

For some comedy value I thought I might mention the incident at the traffic lights the other day. Andrew had been driving my car, and being a good foot taller than me, he has to adjust the seat fairly drastically. So I got into car and put the seat back up, pulled it forward and put the steering wheel back into position. I didn't get off to a good start, as I was wearing my big boots, which although sensible and flat have grips in the shape of a large rubber foot print (you have to see it to know what I mean, but rest assured they are not the best footwear for driving). I more or less shot out the driveway at high speed, in a jolty fashion... you know the way when you can't feel either the clutch or the accelerator through your shoes, so just have to hazard a guess at clutch control. By the end of the road, I was getting the feel for things, but now felt a little to close to the steering wheel so decided at the next set of traffic lights I would move my seat back. I got to the next set of lights and went to move the seat back a notch. I didn't move back a notch...I FLEW back at high speed as far as the seat would allow. Obviously being a midget, I could not longer reach the pedals, so my feet shot off both the accelerator and clutch, causing the car to simultaneously stall and roll forward at the same time. I managed to grab the handbrake and at least stop the car moving, but was practically sitting in the back seat, and pinned in this position by the seatbelt. It was to be expected that the lights would now change to green. Fortunately the cars behind did not toot at me...I am not sure if they perhaps saw my started and slightly horrified expression in the mirror, or whether they thought I had just gone crazy and felt it safer to just leave me well alone. I did eventually manage to haul myself forwards by holding onto the steering wheel with one hand, and operating the seat lever with the other. Then feeling slightly startled and still wearing my big boots, I shot of round the corner with an excessive revving of the engine. Moral of this story is: never wear big boots with comedy grips when driving, and small people should never adjust position of a car seat unless parked in driveway or similar.

So I think I've now received the last of my internet purchases. Thank God. I was able to luxuriate in bed this morning without the fear and trepidation of the door bell ringing at some unearthly hour. Throughout my little internet spree, the post man managed to arrive twice when I was half undressed, three times when I was tucked up in bed sound asleep and another occasion during a stand off with Seb, where he was sitting up on the couch and I was frantically shouting "'Off!" while waving arms. At least the postman was useful on this occasion, as for Seb, the door bell is a signal to run at high speed and pogo up and down at the front door. It is a frosted glass door and he therefore makes a complete spectacle of himself. Nothing new there then.

I had my meeting with work to discuss reducing hours, so my contract has now been changed to three half days a week, instead of four. I have the option to reduce this further to two half days if necessary in the future. I think having the extra day off during the week will be helpful for catching up with rest (and highly important activities such as hair appointments and meeting friends for coffee). I am also having a further meeting with my current boss, to see if I can adjust my starting time a little. I currently work 9am until 1pm, but I think a later start (maybe 10ish) would make a huge difference. This would give me more time to do my physio and nebulisers, without having to get up in the middle of the night to do so. I do at least feel a little more in control of things, and maybe all these small tweaks to working life will make all the difference. At least the difference between being able to work at the moment, or not. A somewhat important difference.

On a completely random note, I have decided I am very prone to what I think is referred to as 'false economy'. Two examples from past week alone:

1. I find out where the nearest Aldi's is, because mum tells me they have wrapping paper at 99p for 10 metres. Bargain. I find nearest Aldi's (20min drive) and buy the 99p paper. I also buy £28 worth of other "stuff". I cannot fully account for this stuff, and I'm not entirely sure why it cost £28. But at least the paper was only 99p.

2. I go to "pound shop" to buy pack of chew bones for Seb at cost of £1. I manage to spend £9. Again I cannot account for this £9, other than knowing I must have purchased nine items. I only needed one item.

Moral of story: in future only keep £1 in my purse and no switch card.

For some light entertainment I will leave you with another clip of the marvellous performing Seb. This is his 'play dead' trick in response to the fingers pointing at him like a gun while saying Bang! I am so easily amused.

I have been constructive this week and have finished the canvas for mum. As the canvas was fairly big (almost 1 metre wide), I had to mostly stand to paint. I like to sit when painting..it tends to tame me a little, and means more paint on the canvas and less on the wall, floor, my clothes and Seb. Fully realising the dangers of standing when painting, I was suitably attired and had donned my little blue lab coat. I have no idea where this originally came from; I only know my dad gave me it years ago so its original use was probably related to lying under cars or something of that ilk. It goes down past my knees (best to cover as much clothing as possible) and I look pretty ridiculous. I was absolutely convinced the post man was going to come (or the window cleaner) whilst I was dressed in this highly fashionable wee number. The post man did not come...the post man thought it more amusing to wait until 7.40am this morning when I was all tucked up in bed, sound asleep. He is such a thoughtful man.

I have added a photo of the canvas. The little people look a bit like my mum and dad (although apparently dad said "who are they meant to be?" Clearly this has nothing to do with my artistic skills and everything to do with the fact he has no idea what the back of his head looks like).

I saw my GP last week and he signed me off work for a month to see if I could get on top of things health wise. I must admit to be feeling a lot better, and also more energetic. Its hard to say whether this is due to just finishing my antibiotics or due to not being at work. I suspect its a combination of the two. So far I am not feeling bored or fed up, but I think this is because I plan to get back to work in a few weeks so it just feels like I'm on holiday just now. I do have a meeting with work this week to discuss reducing my hours, so in my own way I'm trying to be sensible. I know in the long term, working might not be helpful, but at the moment its best just to humour me. Everyone else does.

So what have I been doing with all this free time? I have been internet shopping. Oh yes. Christmas has started early in this house and there is no stopping me now. I have many excuses for this ridiculous behaviour, including the fear of becoming unwell mid-December with no shopping done (been there, done that) and also the fact I'm hopefully going to be at home when the parcels arrive. Last year I was no stranger to finding those little 'sorry we missed' you cards sporting a miniature map directing me to a collection depot 10 miles from my house, in some dodgy industrial estate (the kind where drug deals take place after dark), only to collect an item I probably could have bought in the corner shop. This year, I plan to receive all internet purchases before I return to work.

This great plan is already looking flawed. Why is it that when the post man is bringing junk mail and bills, he arrives around midday when I am sitting on the sofa, washed, dressed and looking serene; but when he is bringing parcels he arrives early in the morning when I am either in bed, on the toilet, or in a state of undress. I therefore arrive at the door with my hair at right angles to my scalp, my dressing gown on backwards over the infamous mismatched pyjamas whilst waving frantically at Seb shouting loudly "get back, get back! It's not for you". The postman's timing is uncanny, and I feel it goes beyond coincidence. Either he is in cahoots with the window cleaner, or they are in fact, one in the same.

In an effort to distract me from my internet shopping spree, and I suspect to try and save my sanity, mum has asked me to paint her a picture for her bedroom. Funnily enough this involved more shopping, as Andrew had to drive me into town to collect some supplies. Namely a canvas I could hardly carry and a bag full of paints. I have no idea what I am actually going to paint yet, and I do have a bad habit of just getting stuck in with no prior planning so its anybody's guess really. My main objective is simply to keep Seb's paws out of the paint, as on a previous occasion he stuck his two front paws in some bright orange paint. Had I been thinking clearly, I would have let him walk over a canvas, called it art, and sold it on ebay for a small fortune. You live and learn.

Today Seb helped me tidy the house. You may consider this a form of animal cruelty, but to be fair most of the toys on the floor were his.

My chest was still playing up after a week on the antibiotics, so being my usual patient self, I made an appointment at clinic to review the situation thinking I may need to start some IV antibiotics. Fortunately my tiny lung function was remaining stable and my oxygen levels were better. I explained that despite this encouraging news, I was still coughing excessively, felt out of breath and generally 'didn't feel too well'. She sat pensively for a few moments, contemplating the situation, then with an almost wistful look turned and said "you know Jacqueline, that at this stage, 'generally not feeling too well' is to be expected and something you need to accept". I was slightly taken aback, but recovered long enough to throw back my plea of "..but I don't feel well enough to go to work". Clearly in my head this is the medical yard stick by which the severity of infections are measured. She looked at me, one eyebrow raised in a quizzical fashion and said nothing. I could feel my face flush with embarrassment as I thought about the conversation we had just a week previously regarding work and its effect on health. Sheepishly I conceded that 'not feeling able to go to work' perhaps called for a lifestyle adjustment and not necessarily more drugs. After mulling this concept over and trying to look at the situation objectively, and not emotionally, I have decided to take some extended time off work..perhaps a month or two..and see what effect that has on my general well being. In that time I plan to mainly focus on two things; exercise and eating. I will also make enquiries into reducing my hours at work, so that my plans to go back are not completely unrealistic. At the moment I just need some time; time to contemplate and time to accept.

I mentioned the plan to increase my exercise and I am seeing the physiotherapist weekly to work on this. At my last visit she suggested we could join the cardiac rehab class, which is essentially a gentle exercise class mainly for patients recovering from heart attacks. You can therefore imagine that the average age of participant is well over 60, and some looking more like 80. So there we all are, about 30 oldies and me, littered round the gym hall all watching the physiotherapist intently and attempting to copy her moves. It started ok..stepping sideways, forwards, backwards and marching on the spot, all in time to some cheesy 60's classics blaring from the tape deck. Then we had to add in the arms. Now I always thought I was reasonably coordinated, having taken some dance classes as a child, but I discovered that, I am in fact, not. My feet and arms appeared to be incapable of moving in unison, and should the move involve the feet and the arms going in different directions it was fairly disastrous. Being very mature, I stared to giggle and behave in an inappropriate manner, exaggerating all the moves and making faces at my physiotherapist. Realising I may be disrupting the class and showing up my physio, I tried to control myself and stifle the sniggers. That was until I stopped to catch my breath and standing at the side of the class, scanned the room. Rod Stewart was blasting out 'Pretty Woman' and everyone was attempting a sort of knees bending and punching arms out in front at the same time maneouvre. One particular man, who looked in his late 70s, was going great guns; knees bending in time to the music, stooped over with his head down and enthusiastically punching the air with vigor. I think he was so caught in the moment he even had his eyes shut and may in fact have thought he was Rod Stewart. Looking round the room, it really was reminiscent of bad Christmas party where everyone has had a bit too much to drink. It all proved too much. I had an uncontrollable fit of the giggles and had to move to the seated area and compose myself. I was in fact unable to rejoin the class. Surprisingly I think the physio wants me to try the class out again, so in future, I best learn how to behave in public.

Lastly I better update you on Sebs little eyes. He was pleased to find it was the vet with the cookie jar and I was pleased to find his eyes looked much better and I could stop the drops. The vet has suggested I try to get Seb used to having his eyes examined, by rewarding him for letting me poke and prod at his face (well thats not exactly how the vet phrased it). This should be achievable, as Seb loves to perform in return for rewards. Sometimes when he is perfoming tricks, I think he is the smartest dog I know and then sometimes he clearly reminds me of his limitations. For example, in the morning he loves to come upstairs and burrow under the duvet, where he mashes himself against my legs and goes to sleep. The other morning it was hot and I was lying with my legs on top of the duvet. He came bounding onto the bed where he then stopped abruptly and stared at my legs. He sniffed at them, he pawed at them and had a good look round before deciding his best bet was to try and mash himself against them anyway. He lay there for a few seconds before deciding that this wasn't quite right. He tried all sorts.. draping a paw over my leg, draping two paws over, and resting his head on my leg before finally trying to clamber on top of them. Still thoroughly confused he rolled off and began alternating between frantically pawing my leg and the duvet, as if this action would somehow get my legs to go under the duvet. By this stage, I was feeling a bit sorry for him, so put both legs back under the duvet and pulled it back so he could climb under. He just stood in the middle of the bed looking completely bewildered and staring at where the legs had been, before throwing me a look that seemed to say " I dont know what you're playing at but its not funny". He then ran off to find Andrew. That dog has no sense of humour.

I may have been a little too smug a little too soon. I was back up at the hospital today getting myself kitted out with some oral antibiotics, as my chest decided it didn't want to play ball anymore. In fact it doesn't want to play any kind of sport, whether it involved balls or not. To be fair I don't feel too bad really, just more chesty and generally tired out. I've also been having recurrent headaches of late, so I am going to get my overnight oxygen levels checked when I finish these antibiotics. However I'm more inclined to believe these are tension headaches, and suspect its directly related to the fact I'm finding work a struggle at the moment and consequently worrying myself silly about the prospect of not coping.

It's interesting that I have been pondering about work; its pros, its cons and its role in my life, because my doctor brought up this very topic today. She was observing that in the last few months my health has not been at its most stable, and indeed, has probably taken a slight downward trend. She wonders why this is. She wonders whether work interferes with my ability to tackle my CF head on. She wonders whether I have my priorities in exactly the right place. She wonders whether I should be working at all. She wonders why giving up work would, to me, seem like my world had ended.

So why do I keep working(and intend to for the foreseeable future)? In part it probably stems from some fairly dysfunctional core beliefs I have about myself. About the fact I define myself largely by my achievements and my ability to achieve. I strived hard to succeed at school, so I could secure a place at university. I strived hard at university to secure myself a successful career. And now I strive at my career...to secure what? My future. My happiness. My sense of self worth. Deep down I know that the only sure thing work will bring me is money. And we all know what money can't buy you. I know my future is my own to mould and to sculpt and to discover as it unfolds. Its something that will come around regardless of where I work, what I work as, or whether I work at all. My happiness is something that lies within myself and can probably only flourish when I stop worrying about my future. My sense of self worth is, I suspect, even more complex but if I'm looking for affirmation that I'm someone worth knowing, then surely I need only look to my family and friends and the question is answered. However, putting this frightening glimpse into the psyche of Jac aside, I do have some far more sensible and practical reasons for continuing to work. Quite simply, it gives me a reason to get up in the morning. It gives me a structure to my life and shifts my focus from health to something far less tedious and it means I am not 'just waiting' on my transplant. I enjoy my work, and I love meeting people and hopefully making a difference to someone. I am not yet ready to give that up and in fact I intend to hold onto it fairly tightly, possibly until its prised from my gnarled little fingers. I will however slacken my grip on the reigns a little, and I am planning to reduce my working hours. It seems like a fair compromise to me.

On a lighter note, I will leave you with the latest installment of Sebs eye fiasco. The return visit to the vet, did as suspected skin me another few quid, but unfortunately did not result in an 'all clear' verdict. In fact it was even worse than not all clear; it was 'still looks red AND has now spread to the other eye'. Seb was not impressed by the vets rough handling and prying open of his eyelids. Especially since this was not followed up by a small dog biscuit from the cookie jar (his usual vet has a cookie jar). In fact to illustrate just how unimpressed he was with the whole situation, on leaving the treatment room he casually sauntered past reception only pausing momentarily to lift his leg and pee up the desk. As you can see, I have brought him up well. Anyway, we ended up leaving the vets with different eyedrops, to be applied..wait for it..four times a day. Four times?? I was barely managing once daily drops. Six days later and I can safely say that Seb is pretty much traumatised by the whole scenario. A scenario that involves him being wrapped tightly in towel, with only his face showing, to prevent him batting the eyedrop bottle with his paws (which he had discovered to be very effective stalling tactic). We are due back at the vet tomorrow and I am hoping and praying for a positive outcome. Seb is simply hoping and praying its the vet with the cookie jar.

The CF nurse just phoned to remind me I'm due to have my port flushed on Friday. This is fantastic news. It means I have been off antibiotics for nearly 4 weeks! Over the past few months I have barely been getting past 2 weeks before needing at least oral antibiotics, so I'm feeling strangely smug. I am also wearing a strangely smug expression. Its verging on scary though, so I am now reverting to a more comfortable and relaxed expression. Worryingly this is slightly scowl like. I have bad habit of frowning inadvertently and therefore looking like I strongly disapprove of what's being said, when its more likely I am in fact not even listening ;-)

The nurse also asked how I was getting on with the NG feeds, and had I made any decisions about removing the peg tube yet. The short answer to the last question is "no". I just can't decide what to do. I feel very much trapped in a no win situation at the moment. I have managed fairly well with the NG feeding, however I remain extremely anxious about the prospect of removing the peg tube. Its like my safety net. I can manage to get the NG tube down at the moment, when I'm well...but what if I was feeling sick? (which is often); what if I have a cold with runny nose and tickly throat?; what if I need oxygen and therefore have tubes jostling for position on my face; what if I need to do extra bolus feeds during the day?; what if I have a sinus infection (which again, is often)? Even writing that list is making me hold one hand over my peg tube in case a passing mad man steals it. Yet on the flipside, the damn thing is still sore. Its reached a new plateau of pain; not quite as sore as before, but still sore enough to make me swear (under my breath of course, and only posh swear words like "drat") at least once a day. On balance though, Seb makes me swear (and pray at the same time), more than once a day and I'm not having him removed. Yet.

Speaking of the fluffy creature himself, I will now update on the eye drop fiasco. I have now discarded all attempts at both the 'softly softly' and the 'stealth' approach. Sadly I had to also abandon the giant dog treat outfit. The hire shop only had a 'bonio bone' outfit. Seb doesn't like bonio bones. I think they are too dry and tasteless. And they are clearly not cheese (which he would kiss a cat on the lips for). Anyway, I have now progressed to hard line tactics. Namely getting him into a headlock while Andrew administers the drops. To be fair I am taking the most dangerous position, especially since he is so wriggly that I had to mash his head against my head for extra leverage. Quite obviously I was taking the risk of having my nose bitten off, but instead I found my eyeball being nearly licked out of its socket. Thankfully while Seb was engaged in this endearing, yet 'wrong on many levels' activity, Andrew got a couple of drops on target. I am due back at the vet tomorrow for a follow up, so we are all hoping for the all clear and no more drops outcome. An all clear that costs another £30 no doubt.

Seb, it's time for your eye drops. Where are you?

I survived the first week back at work and despite being absolutely exhausted, I have at least made a start and will just take it a day at a time. Unfortunately I have been coughing a lot more this week. Since I am otherwise feeling ok, I have, by a process of deduction, concluded that I am in fact allergic to either early morning starts, or work, or a combination of the two. I have yet to decide on a treatment plan. Avoidance seems appealing, but perhaps not practical (largely from an earning money stand point). Desensitizing would involve going into work late and then over a period of time starting a little earlier every day. Again, appealing but verging on grounds for dismissal. So I guess I will have to adopt the "complete exposure therapy". In simple terms this means stop whinging and get the hell on with it. This is my new motto. I think it has a certain ring to it.

Healthwise, I'm still having problems with my peg tube. I got so disheartened and frustrated by it this week, that in a little hissy fit I may have phoned the CF team and demanded its removal. This was met with a slightly flustered response, a degree of umming and ahhing, followed by an urgent appointment with the doctor to "discuss". Discussion ensued, and I put my case forward that pain from peg site was limiting both physical activity and eating. Both of which are fairly crucial to my well being. Obviously I cannot simply stop my overnight feeds, so would need to resort to nasogastric feeding (shoving tube down nose on nightly basis). From the doctors perspective he was concerned, firstly, that removal of tube would not eliminate the pain, as the cause is not entirely clear. Secondly that the original peg was so difficult to insert that having another one should NG feeds fail would not be a simple procedure, and lastly, that transplant team would, in light of current poor weight, conclude that he had in fact lost his marbles. We came to the mutual conclusion that I should NG feed for 10 days and then review whether I still wanted peg tube removed.

I have therefore NG fed for past 3 nights, and it has been ok (well as ok as shoving tube down nose can be). However I do have some niggling concerns about this route. The main one is chronic sinus problems making NG tube painful, my motivation to use NG tube if feeling very unwell and also the fact I cannot disconnect it easily. I had therefore found myself having to carry the entire feeding pump and litre bottle of feed with me to the bathroom at 3am (in the dark). Clearly if I just happened to be consuming any whisky liquers prior to bedtime, this could prove dangerous, and at worst fatal.

Strangely the peg tube hasn't been as sore since I commenced the NG feeds. This could be one of three reasons: 1. Total co-incidence 2. Not using peg is allowing it to settle 3. Peg tube over heard discussion about imminent removal and is now pretending to behave in order to avoid expulsion. (Sometimes at night I think I can hear a small but definite "mwah haw haw") So in summary, I will NG feed for 10 days and then review. If peg improves I shall keep it for time being but it will be strictly placed on a good behaviour order.

My other news involves Seb and his hardships. This week I had to take him to the vet with a sticky eye. I really did not want to be charged £30 for a 3 minute consultation to be informed he had conjunctivitis, so had been bathing his eye with saline for a few days and hoping he has just poked it with a twig or something, and it would spontaneously improve. After 5 days, I thought I was perhaps being neglectful and suddenly panicked at the thought of Seb going blind (queue sad music and camera shot panning in to small dog with one eye and single tear drop). Spurred on by by melodramatic thought process, I hastily made an appointment with the vet for that afternoon. After checking in at reception I sat down in the waiting area, and Seb jumped up and sat in the chair next to me. We sat like this, side by side, for a few moments before I noticed the receptionist looking at us with a somewhat bewildered, yet amused expression. I slowly realised that it was perhaps not normal for the animal to also sit on a chair while waiting to be seen. However at £30 a pop, I figured Seb was entitled to lie down across 3 chairs should he feel like it. After all he is the patient. The outcome was that I left after 5 mins with bottle of eye drops and a dog with one eye dyed bright orange.

I have since been experimenting with ways of getting these drops into the dogs eye (i.e not on his head, eyelashes, nose or living room rug). My first approach was stealth like, and while he lay asleep I swooped down opened one of his eyes and fired in the drops. Needless to say he did not stay asleep for long and has now taken to sleeping with one eye open. Just to be sure. The next approach involved me holding a treat in front of him as distraction, while Andrew came in from the side and unexpectedly squirted some drops in his eye. I tried this one by myself earlier but he has cottoned on, and managed to somehow watch the treat with one eye, whilst never losing sight of the eyedrops with the other. I am currently still planning my third ambush. It may involved me dressing up as a giant dog treat, but I have yet to determine the final details.