The Dress Rehearsal - Part 3

It was not long before I was stable enough to be moved back to the surgical ward. Amusingly when they went to collect my bed from the ward, they found my mum fast asleep on it. She awoke to the voices of two nurses outside the door speaking in hushed tones "There's someone in the bed!" "What will we do?!" Fortunately roused from sleep by this point she was able to reassure them that she was a relative and not some delirious patient who had just wandered into the wrong room.

I had been given a PCA (patient controlled analgesia) in ITU, which is basically a morphine pump which delivers the drug when you press a button. This kept me fairly comfortable for the first 24 hours back on the ward and I was even able to be helped out of the bed and into a chair for a few minutes by a rather enthusiastic physiotherapist, who insisted I had to be mobilised as soon as possible. At this point in time I was more concerned with the issue of my bare bottom peeking out the back of the hospital gown than I was with the pain of sitting up and getting out of bed, so I duly complied. It was extremely uncomfortable to move and I pressed the PCA button a few times to ease the pain. More of a distraction however, was the physiotherapist himself, who clearly used to mobilising people with tubes in every orifice, casually hooked my catheter bag onto the belt of his trousers as it were some stylish accessory. After a few minutes in the chair he allowed me to climb back into the comfort of the bed.

Towards the end of that first day I appeared to become very drowsy, and thinking it was related to the morphine, the pain team decided to remove the PCA and replace it with oral medication, including oral morphine if needed. For the rest of the evening this seemed to be working well enough and I settled down to sleep. I then awoke at 3am and the pain was unbearable. I lay there thinking "if this is the pain from a superficial wound then I will never cope with the real thing."I buzzed for a nurse and was given some tablets - I looked at them helplessly and thought 'these are never going to work!" Over the next few hours I was given various tablets and finally some oral morphine. I expected it to hit the mark but it did little to ease the pain, so being allowed to have it every hour, every hour on the hour I buzzed and asked for more hoping this time it might work. By morning I was in floods of tears pleading with the nurse to please get the pain team to come back - but they were very helpfully on holiday for the Easter weekend! After the ward round however they called an anaesthetist, who came and set me back up with the PCA. By this point I had had enough oral morphine to floor a small horse and was not remotely drowsy, so the anaesthetist explained that my drowsiness the previous day was due to drugs I was given in theatre, and not related to morphine. Finally I had control of the pain again and this eased things greatly.

Despite the better pain relief, it was inevitably still painful to cough which made clearing my chest very difficult indeed. This was made worse again by the Easter holiday weekend, since the on call physios were not familiar with some of the chest clearance techniques I use - so I pretty much had to take care of my own physio. This was something that required a good bit of will power but I knew I had to keep my chest as clear as possible so worked hard on this. However despite my best efforts the infection markers in my blood had started to rise, and it was clear that I now had a chest infection to deal with. Thankfully the transplant team were quick to act and started IV antibiotics straight away in an attempt to keep things under control. Unfortunately this chest infection meant I was now unfit for further surgery had another pair of lungs become available. I was understandanly upset by this at first, as I had almost hoped that by some will of God another call would come before I had even left Newcastle. In retrospect however, it was the best decision that could have been made. I needed time to deal with what had just happened - both on a physical and emotional level.

The next few days passed in a haze of morphine, as I continued to press the PCA button on a regular basis. We were in unprecedented territory pain wise, as they had never encountered someone who had exactly the same wound as my self - it wasn't half as bad as a post transplant wound (although you have an epidural in this case), but pretty sore all the same. Over those few days I had little to say - I didn't really want to talk about what had just happened, all I wanted was for the pain to go away and to go home. I had company all the time, as my husband and parents stayed with me, yet at times I felt alone and so far from home. As those first few days passed and the reality of what had happened began to slowly sink in, thoughts fluttered aimlessly in my mind and I found it hard to concentrate. The doctors kept reassuring me "you will get your transplant - it will happen" and suddenly I was filled with fear. I wasn't even sure I wanted a transplant any more - if I was struggling to cope with a superficial wound and some post op chest infection, how would I ever cope with the real thing? I tried to imagine the phone ringing again, and the coordinator saying to me "we have some lungs". Those words which would have previously filled me with joy, were now associated with fear and pain. Transplant had always been such a distant thought - something that may never even come in time and was perhaps only a fairy tale to chase. Now it felt so real - yet in reality it remained only a hope. The dichotomy of this situation - the being so close, yet remaining so far, was hard to process.

As the days passed and the end of a week became near, I focused on the physical aspect of getting better. We finally swapped the PCA for some oral medications and I coped well with this. I went for a walk along the corridor to prove to physio's and doctors that I was now 'mobilised'. The wound was healing well and all the dressings were removed so I could now shower freely. All in all, I was making a remarkable recovery and astounded everyone with my progress. Although I lost around 1/2 stone in those first few days, due to my recent weight gain I was still at a satisfactory weight for transplant and everything looked good.

A week after the surgery it was decided that I was fit for transfer to my hospital back home, where they could look after my chest more effectively. I felt very unwell on the journey back home - my heart was racing, I felt nauseas, disorientated, and feeling very hot I insisted on all windows being open in the car. It was snowing outside and my family had to put coats and hats for the duration of the 3 1/2 hour journey. On arrival at my hospital I was met by one of my physios and CF nurse - I have never felt so relieved to be in that hospital and for the first time in a week I broke down in floods of tears. There was much hugging from hospital staff and I was ushered into a familiar room, treated by familiar nurses and felt so much better for it. I was however still very agitated at this time and it was assumed that all my symptoms (the palpitations, nausea etc) were related to anxiety. However it later transpired that they were side effects of my pain medication and I felt like a different person when I stopped them - so much calmer and with clarity of thought (It was useful to find this out as I can ask to avoid those tablets post real transplant). I was so relieved to find out that it was the medication, as at several points I did begin to wonder if I was losing my mind.

Back in familiar surroundings, I improved rapidly. With the expert help of CF physios I could work hard on getting my chest back into shape, and now removed from the situation, I could stand back and begin to process the whole episode. As time passed, my anxieties began to melt away and I could regain some objectivity. I did want a transplant. Of course I did. I could now think of the real call without fear - I could imagine taking this journey again but this time the ending would be so different. I began to feel ready for the next time.

More to follow.. (nearly finished I promise!)

The Dress Rehearsal - Part 2

The words filtered through the haze of anaesthetic drugs and in my confusion my first thought was 'are you joking, because that's not very funny'. As he carefully repeated the words "You have NOT had a transplant" the words slowly sunk in and I realised that this was no joke. My eyes opened wide in utter disbelief, and tears began to silently fall. I was still intubated so could not speak, and instead lay in the silence that followed. My mum was wiping my tears, and Andrew was holding my hand. At that moment in time it was little comfort.

Unable to think clearly, or to communicate, I then became fixated on having the tube removed from my throat and tried to desperately convey this. As I tried to point at the tube, the nurse kept thinking I was trying to pull it out and would push my hands back onto the bed. I became increasingly irritated as she said repeatedly "in a minute" and "when you are awake" - I felt pretty much awake and could watch the minutes ticking by on the clock. I think the most distressing thing about the situation was that I still had my old lungs, so was coughing every few minutes, which meant she had to use suction to clear my airways. At least after the real transplant I will be waking up with healthy lungs and this should not be a problem. With the realisation that the transplant had not taken place, understandably, the pain also seemed to get worse - probably because it now felt so pointless and unncessary. I couldn't tell anyone it was hurting so instead tried writing out letters on the bed covers. Seeing that I was tying to write something out, Andrew told me to draw the letters on his hand and I was able to spell S-O-R-E and he could tell the nurse I was in pain. It wasn't long after this that the nurse finally decided I was awake enough and asked my family to leave so she could extubate me. She seemed to spend forever collecting pieces of equipment and fiddling with my tubes, before she finally asked me to cough hard and pulled out the tube. It was a blessed relief.

My family were allowed back into the room, and although I could now speak I suddenly had nothing to say. I did however have one rather unhelpful remark for my mum. To understand I have to explain that the day I got the phone call my mum had been telling me about a lady called Margaret Sinclair (who is soon to be made a Saint) that she had started praying to that day. So when I got the call my mum had said 'Oh, Margaret Sinclair was listening'. On finally finding my voice in ITU I pulled mum in close before muttering "Your Mary Sinclair is rubbish!" to which she quickly responded "Her name is Margaret, and she is not rubbish!" It was not one of my most mature moments, although I think we can safely blame the drugs in this instance ;-)

Soon after the extubation the transplant coordinator returned to see me again and offer more explanation now that I was more awake. He explained that the initial inspection of the lungs had been unremarkable - they had looked good and nothing unusual had been reported. At the point they clamp the donor lungs, a call is made to the coordinator to tell them to start surgery on the recipient (me). Around 35 minutes into the surgery the coordinator received a second phone call, which he expected was to tell him the lungs were on their way but it was instead to say there was something wrong with the donor lungs. After clamping, they perfuse the donor lungs with a preservative solution, during which time the blood will drain from the lungs. On performing this procedure the lower lobes of the lungs unexpectedly took on a patchy appearance - something similar to what can be seem in the victim of a road traffic accident (but this donor was not in this category) or in someone with a blood clot in their lungs (but this was also not the case). There was no clear explanation for this appearance and the surgeon had never seen anything like it appear at this stage before, but there was clearly some problem with perfusion in the lungs. He took the very brave decision to report the lungs as being unsuitable at this late stage. Much discussion took place within my own team, who decided that it would be much safer to stop the surgery now and leave me with my own lungs for a while longer, than it would be to continue and risk the transplanted lungs failing - possibly even that same day. It was very fortunate at this stage that the surgeon had only made an incision involving skin, fat tissue and some muscle layers - but he had not touched the bones or entered the chest cavity. If the call had come much later in the proceeding they may have reached a point of no return. On hearing this explanation I felt absolutely no anger or regret that they did not continue, but only relief that a problem showed itself in time, and not after the surgery when it would have been too late. Maybe mum's Margaret Sinclair was watching after all

More to follow..

The Dress Rehearsal – Part 1

It was Wednesday 19th March and I was watching TV, while mum was doing some ironing. She had stayed late that day because Andrew was away down south with work and wasn't due home until 9pm. It was around 8pm when the phone rang and I heard the voice of my transplant coordinator. He was asking if I was well and when I confirmed that yes, I was well, he told me that some lungs were potentially available and to start getting ready to leave. I felt a strange mixture of excitement and apprehension but managed to stay remarkably calm. I then of course realised that Andrew was unlikely to make it home before we had to leave and frantically started trying to reach him on his mobile, but his plane hadn't landed yet so I couldn't get through. In the meantime, we quickly got my case out (which was already packed) and added some last minute items, before packing a bag for Andrew and organising some things for Seb, who would be going to my inlaws for the duration. The coordinator phoned to tell me the ambulance had been called and would be with me shortly. I knew then that Andrew would not be home in time, so we decided that my dad would come and pick Andrew up and they could drive down together, dropping off Seb on route, and hopefully arriving in time.

I then had a call from ambulance control to say that they were very busy, so were going to fly me down instead from Glasgow Airport - which is where Andrew’s flight was coming in! On landing, Andrew realised there were about 20 missed calls from me and phoned straight away -we decided then that he would try and find out where the air ambulance would leave from and meet me there. An ambulance came and took mum and me to the airport, and when we got there Andrew was waiting with the crew – I felt so relieved. It was confirmed that both Andrew and mum could travel on the flight, so poor dad was left to travel down alone. The flight took about 35 minutes, compared with a potential 3-3.5 hr journey by road and it was pretty amazing flying into Newcastle and seeing it lit up at night. An ambulance was waiting on the runway to take us directly to the Freemans hospital.

On arrival at around 10.30 pm we were met by the transplant coordinator,who got us settled into a room and explained what would be happening. I had to get some blood tests, chest xray, temperature checked and a brief examination by the doctor to make sure I was well enough for the operation and that there was no evidence of acute infection. At this stage all we knew was the donor lungs were a good match but we did not know if they would be suitable for transplantation. The retrieval team were expected to arrive at the donor hospital around 11pm and procedures would commence to inspect the lungs. In the meantime we settled down and just waited.

At around 12am I was asked to have a shower and put on a surgical gown and at 1am the coordinator informed us that initial inspection of the lungs with bronchoscopy (camera) were very positive. We then had to await the final go ahead while further testing of the lungs took place. Excitement and anticipation would give way to waves of apprehension as the prospect of major surgery loomed but at the end of it the prospect of a new life glittered.

At around 2am the coordinator appeared with a trolley to say he had the go ahead, and I was going to theatre now. As I was wheeled down the ward I saw my dad walking towards us – I couldn’t believe he has made it with seconds to spare. Outside the doors to theatre I gave everyone a final hug, and in my thoughts asked Frances Ann to now watch over me.

I had some lines places and monitors attached before I was given the anaesthetic for what was expected to be a 6-8 hour operation. My anxieties melted as the drugs took hold, and I drifted into sleep.

Next thing I knew was waking up in ITU at 6am. I was intubated so couldn’t speak and my chest was throbbing. The transplant coordinator was standing by the beside repeatedly saying to me “Jacqueline, you have NOT had a transplant”

…More to follow

I'm still doing ok. Have been a bit more tired and breathless this last week, but that's to be expected when I've had a while off IV's. I've also been feeling quite sick off and on, which is starting to curtail my intake of food. I often feel sick when I have an infection, so will need to keep an eye on this and won't let things go on too long if it looks like something is brewing.

Otherwise life has been very quiet. It was Andrews birthday on Saturday so we went out for a meal and I allowed him to watch the rugby without interruption. I say allowed, because I normally do quite a lot of complaining when its on TV. I just don't really get it - a whole load of men rolling around on the grass, with some occasional grabbing of each others shorts (which is apparently part of the game). Although I must admit its much better than football, where they just kick the ball up the pitch and just when you think a goal might be scored, they kick it out! And so it goes on. An entire game can pass without anyone scoring a goal - what's that all about?! I think you can tell I'm not a big sports fan....

Seb was trying out something new yesterday. I popped upstairs for a few minutes and was coming back down on the stair lift. On my way down I could see into the living room, and there was Seb, lying stretched out in the middle of the glass coffee table. Obviously I squealed "Se-eeeeb! Get off!" However, as the stair lift moves at a snails pace, I had to just watch as he waited a few moments before casually standing up, doing a few large cat like stretches, and finally jumping off to come and see what all the fuss was about. I suspect he jumped up there to try and see out the window, but then thought he would test it out for napping whilst he was there. You really can't leave him alone for 2 minutes..

My cousin Bobby is running the Edinburgh marathon in aid of CF. There is a link to his justgiving page at the top of my blog for those of you who know him and would like to show some support :-) For those of you who don't know him, he is a strange (old) man who likes to think he is my favourite cousin (ideas of grandeur). I don't like to tell him otherwise. He is nice all the same, and would appreciate any spare pennies for his justgiving page...

Exercise....at last!

I moved out of my exercise contemplation stage yesterday, and finally attended my physio for an appointment. We did a few minutes on the bike and some upper body weights, before attempting to join part of the cardiac rehab class, who were doing their warm up. I did manage to do some of the warm up, with a rest every few minutes, but overall I think I did quite well.

The one thing I did learn from this session is that I am terribly uncoordinated, and even the physio had to agree with me. I think my dream of taking up either salsa or ballroom dancing classes shall remain just that. A dream. I think I have mentioned my inability to do leg squats before - I just can't do it. Instead I do this kind of pelvic thrust motion, which is not very lady like and sends both myself and the physio into fits of giggles. I must practice in front of a mirror before my next session. The other great source of hilarity was the woman who fell off the treadmill. I thought she had collapsed at first, as she just fell suddenly prostrate, onto the moving treadmill. She then just lay motionless as the treadmill continued to move and slowly transport her onto the floor. Where she then lay motionless again. Needless to say my physio ran over to help the poor woman, who had to be given a glass of water and a chair, before she could overcome the shock. It turns out the treadmill has been pre-set to a programme which moved through different speeds - so when it suddenly changed pace, the woman wasn't expecting it and lost her balance. I know it wasn't very amusing for her, but I did have a sneaky chuckle to myself. Terrible sense of humour I know, but if you had been there...

I am now finished my distance learning course and am pleased to say I have passed it. I am still working on the CF relationship project, which is keeping me fairly busy, but will need to think of some more projects to keep myself occupied. I was looking at the OU again, and there is a digital photography course in May, which looks quite interesting. Although Andrew did kindly point out that I would need to expand my subject matter beyond birds and Seb. I don't see why. And just to be obstinate, I will leave you with some photos of birds and Seb...

Sleeping Beauty

Robin (yes, we had snow!)

Lesser Redpoll (quite pleased about this one, as they don't commonly visit gardens)

Irrational Thinking

So, I had a clinic appointment yesterday and got the best report I've had for a long time. I have managed to put on about 4kg since my admission in January, so am now about the heaviest I have ever been. I am on medication to help me gain weight, so am able to reduce the strength of this now, with a view to stopping it should I continue with this trend. My lung function was also up, which may be related to the weight gain, or just reflecting this period of stability. My oxygen levels were a little low, but they said as long as I wasn't symptomatic, I don't have to use the oxygen during the day if I don't feel I need it. So, overall an excellent report.

You would think I would be jumping for joy, but instead I reverted into anxious, panicky mode and declared that perhaps I didn't in fact need a transplant any more. I suggested that Newcastle may consider me too well if I continued to be stable, and would remove me from the list. This is nothing more than a figment of my imagination, but something that continues to haunt me whenever I have a period of stability. I think it largely stems from the difficulty I have always had in believing I am ill enough to require transplant, and my continual need to analyse the decision to be listed, based on however I currently feel. Don't get me wrong, it is not that I don't want to be called, because I desperately do. My life has changed beyond recognition in the past 2 years and I wholeheartedly want to be given that second chance to start living again. It's just that I always feel there is someone else who needs it more, someone else more deserving. Yet I also know that if I were to become that person who needs it most, then I have also started to move out of that window in which transplantation is most successful. You need to be strong to get a transplant, you need to be a good weight and you need to be as stable as possible; so technically now is the perfect time for me to be called.

My doctor managed to take my slightly hysterical comments seriously, and reassured me that yes, I definitely did need a transplant and that my decline in health over the past two years has confirmed this. He also told me that after my review with the Newcastle team in November, the consultant stated in his letter that I urgently needed a transplant. I guess maybe he knows more about it than I do...

I'm sure most of what I am saying will make little sense to people but I thought I would share it anyway. This road towards transplant is a difficult one; its not only about the physical health because the emotional journey is probably even more turbulent. Although I have a wonderful support network, it can still feel very lonely at times, especially when you have a tendency to think too much, and plenty time in which to do it.

So I guess the moral of that story is that I need to think less and do more...

For the Seb fans...

Are you coming up on the stair lift or not?

Ooh, my turn now! If you could just flick that switch for me please and I'll be off..

She made me walk up the stairs myself. It's so depressing....


And I can't even stick my head through the bannisters any more. I hate that stair lift.

Dog walking and Rug buying...

Did someone say 'walk' ?!

I am still feeling ok, and am due my port flush next week, which means I have been off IV's for nearly a month :-) We have had some brighter weather recently, which has spurred me on to take Seb out for a little walk on a few occasions. I can only manage about 10 minutes, and its hard going, but I feel at least I am getting some exercise and Seb is certainly enjoying himself. Before this, I probably last took him out in October, so you can imagine the surprised look on his face when I shouted 'walkies'. He looked confused for a second, then literally threw himself at me in a most exuberant manner. As we went out the door he kept looking back over his shoulder to make sure I really was coming with him.... at least I felt my efforts were being appreciated. I should really use my oxygen to exercise as my oxygen saturations tend to fall when I am walking, but the cylinders are really too heavy to carry so it simply negates any benefit. However I will hopefully be getting to trial liquid oxygen in the near future, which is much lighter and more compact to carry. Maybe this will even help me walk a little further, which would be good news all round.

I am still amusing myself with a little studying and was pleased to have passed by 2nd assignment. I have already completed the third one and after that there is only one more to do. The course hasn't taken as long as I thought it would, but it has been a good introduction to studying and getting my brain more active again. Hopefully I will manage to keep up the efforts once the novelty has worn off!

I am also keeping busy by helping out my friend Emily with a project she is doing. We are looking at the issue of CF and relationships and are hoping to produce a booklet on the topic, as there is a distinct lack of literature in this area. Emily has been working hard getting lots of input from people with CF and their partners, and we are now starting to collate this. The idea is to put together peoples experiences on various topics, so that essentially the booklet will be a collaborative effort by people with CF, for people with CF. That's the idea anyway, although I'm sure things will evolve as we start to put it all together.

Other than that, life has been pretty quiet. Andrew has been busy painting the windows in the living room and replacing skirting boards, while I have contributed by doing some online rug shopping. I'm just waiting for it to arrive now, and hoping it looks remotely like it did in the picture....

Keeping busy

That's a couple of weeks since I finished my IVs and I am still feeling pretty good, so, long may it continue. I've not been needing my oxygen during the day at the moment, which makes moving about the house so much easier - no tugging the tubing behind me and getting it caught under doors. Plus, Seb has a tendency to sit on the tubing whenever possible, and refuses to move despite me tugging at it vigorously. Since I have been feeling a bit better, I have also managed to get out a bit more. This has resulted in the purchase of 2 new leather sofas. My life is so much more expensive when I am well - I dread to think what will happen after my transplant. Today was spent getting several new cushions for the new sofas, and I really do think the rug needs replacing...

Other than spending Andrews hard earned cash, I have been busying myself with some study. I got my first assignment back, and thankfully had passed. You don't get a grade, but I did get some very good comments which made the hard work (almost) seem worthwhile. I have now sent off my 2nd assignment, so fingers crossed for a similar response. Since I am now in study mode, I am also trying to do some background reading in Psychiatry, so that I am not altogether rusty by the time I go back to work. I am concerned that this sudden rush of intellectual stimulation may prove too much, and will therefore punctuate my learning with some daytime TV. I think its the only safe option.

I have also been doing some painting and have just finished some canvases of snowdrops, that my friend asked me to do. My next plan is something for the living room......you know, to go with the new sofas, and cushions...and rug. I would maintain that by painting something myself, I will overall be saving Andrew money.


So, I can say that life is not too bad just now, and I am at least able to keep myself amused. The odd thing however, is that during these periods of feeling more well, I actually become more anxious about the transplant. When I am unwell, I want to be called immediately and am filled with dread that the call will not come soon enough. When I start to recover, I almost forget how unwell I have been, and start to feel overwhelmed by the very idea of being called for transplant. Its only at these times that the enormity of what I am facing hits me. This anxiety leaks out in the most bizzare ways - for example, I can become all consumed by the fact the study bookshelves needs tidied or because I'm struggling to answer a question in my assignment, or because I start to think about going back to work post transplant and can't imagine ever being strong enough to face that. I worry about the most pointless things, and then I get annoyed at myself for wasting such precious time on trivial concerns. I know that underlying the trivial worries, are much greater ones, that I would rather not dwell on and that there is little benefit in exploring. It's so much safer to worry about whether these cushions really match the curtains.

I think what I need to do is learn to enjoy these times when I am feeling better and to simply believe that the call will come at the right time for me, and when it does, that I will be strong enough to face that challenge and embrace the opportunities that lie ahead.

Some birds...

Robin on birdbath

Siskin in the rain

Bluetit

Look! I can do this with one leg!

Stair lifts and Lycra..

I finished my IV antibiotics today so was at the hospital for a quick check up. All the news was good - my lung function has come back up, my oxygen levels were much better and overall the doc was very pleased with my response to the antibiotics. Fingers crossed it lasts for a wee while!

I finally got my stair lift installed last week, so have been buzzing up and down on that. Seb was a little unsure at first and threw some tentative barks at it, but now he doesn't even bat an eye as I trundle up and down (i say trundle because it is painstakingly slow). He has had a couple of shots sitting on my knee and seemed to enjoy the ride - he certainly wasn't at all nervous. I'm sure it will be no time at all before he is operating it himself..

My other news is that I've started a distance learning course, to try and give me something to focus on and to help structure my day better. Its on the topic of 'conflict management' which I feel will be useful at work in the future. I have now completed my first assignment and am waiting on feed back to see if I passed it before I move onto the next section. I think I really need something to focus on as I am feeling quite fed up at the moment and a large part of that is down to sheer boredom. I miss working, especially the challenges and social aspect that it brings with it. Being at home all the time is fairly isolating and I do feel very much in limbo at the moment - just waiting on that call, but not quite believing it will ever come. I am hoping that spending some time 'working', albeit at home, will make me feel that I have achieved something in my day, which in itself is a great tonic for self esteem. The other great tonic would be to start concentrating on exercise again, which has somewhat fallen by the wayside. I am in the contemplation stage at the moment - a lot of thinking about exercise, but none actually being done! Hopefully by the time I write my next blog I will have moved to the action stage and will be possibly sporting some sweat bands and wearing lycra.....the mind boggles.

Apologies for the break in blogging, but I have just escaped from hospital. The oral antibiotics unfortunately didn't work, so I had to go in to start some IVs again and get myself back on track. I am only half way through the course but have been allowed home to finish them here - much better food and more rest in my own bed. I am definitely feeling better than I was last week so everything is moving in the right direction.

While I was in hospital I understand there has been a lot of media attention surrounding Gordon Brown announcing his support for an opt out system for organ donation. Although an opt out system is not the the lone answer to organ shortages, it does seem to have helped improve the rates in other countries. However, even if we do not move to this system, the controversy surrounding the topic has at least highlighted the issue of shortages once more, and gets people talking about donation which in itself is so vital. Although polls suggest over 90% of the population support organ donation, less than a quarter get round to signing the register, which is a permanent way of making your wishes clear. Relatives will refuse consent for donation in around 40% cases; the main reason being given is that they did not know what their relatives wishes were. Even if we move to an 'opt out' system where consent is presumed, the relatives would still be consulted and retain the power to override the decision to donate, if they felt this was what their relative would want. I can see argument both for an against an opt out system, and I can also understand why people may not wish to donate, and whole heartedly agree that they should reserve the right to make this decision. What I do feel very strongly about however is the need for people to talk about the topic of organ donation with their nearest and dearest. Although it is a difficult and emotive subject to broach, that one conversation where your wishes are made clear, could be the difference between life and death for someone waiting on that vital transplant.

click here to sign register

Happy New Year!

Well, that's all the festivities over for another year. I had a lovely Christmas at home with my family. Present opening, as normal, took hours to complete before we all settled down to a lovely home cooked Christmas dinner in the afternoon, and then played some games and watched TV in the evening. Unfortunately since Christmas I haven't been feeling very well, so New Year was a bit of a struggle really. It was clear that the last lot of IVs had been fairly ineffective, so I started some oral antibiotics on Boxing day. I was not making any progress over the past week, so finally headed up to the hospital yesterday. I have to try adding in another oral antibiotic first, in a bid to space my IV's out more, so I will see how things go over the weekend. I am just feeling very tired and breathless at the moment, but hopefully I will start to see an improvement soon.

You will all be pleased to hear that Seb has enjoyed his holidays. He has for the most part been well behaved, but with the usual moments of sheer naughtiness. The covert food scavenging continues this year, with him demolishing 2 pieces of madeira cake left on the coffee table, whilst we were busy eating dinner. There was another incident of him being found on the dining room table, licking a left over desert bowl (embarrassingly this incident occurred in someone else's house). There was the usual stealing of objects not belonging to him, and the climbing onto things he shouldn't be climbing onto. A new one for this year, was finding him sitting inside the writing bureau (obviously the lid was open). I'm not sure if he wanted to write a letter or if he was looking for something in particular. What never fails to amaze me is the indignant look he gives you when he is found in these strange places - its a 'hello? Can I help you?' look, as if it's perfectly normal to be sitting in the writing bureau. Although in Seb's world it probably is.

Now, I'm off to play the new nintendo DS I got from Andrew for Christmas. Oh wait...yes, that's right, I can't get on it, because Andrew has hardly put it down in days......funny that....

ONLY 2 MORE SLEEPS...

I am now back home at my parents for Christmas, so it feels like the festive season has now begun. Even wee Seb had a bath today in preparation for Santa coming. I am nearly finished the IVs and feel ok-ish - not a whole lot better than I did when I started them, but not any worse. Hopefully it will tide me over the festive period though and as long as I pace myself I should be ok.

It feels strange coming to the end of another year on the transplant list, and now looking forward, wondering where I will be this time next year. It is also strange looking back over the past year, which has seen some important changes in my life. At the beginning of the year I started to use overnight oxygen, then shortly after, oxygen for exercising and now laterally, require it much more during the day. Mid way through the year, I finally realised that work was beginning to take its toll, and what started as a months leave has now become almost 7 months away from work. In that time I expected to stabilise in health, but instead had a summer of frequent infections, spiralling weight loss and for the first time since I was placed on the list, began to wonder if that call would come in time. Thankfully the winter months, so far, have brought me stability, weight gain and the feeling that I have pulled back some control over my health. I am ever hopeful that this can continue into the new year and that stability can be the key word for 2008.

I have also had some interesting experiences over the past year. I was short listed for the Breathing Life Awards and travelled to London for the star studded ceremony, and thereafter, appeared in the Daily Mail to raise awareness to the issues of Organ donation. I gave a speech at Scottish Parliament in the Summer as part of the Live Life then Give Life campaign, and more recently had a further foray into public speaking at a palliative care conference. So, despite the downs of health related issues, there I have also had my fair share of positive experiences this year, which I can take forward as the highs of 2007.

As I now prepare to spend the festive season with my family, I remain positive and hopeful for the coming year. I have made it successfully through this past year, and am still here and still standing. I have plenty of fight left to see me through this coming year, and whenever that call comes I am ready to take that step. A step which will see me moving forward to a new and exciting life, filled with endless opportunities and new beginnings.

So, on that positive note, I would like to wish everyone a Happy Christmas and wonderful New year!

Only 15 sleeps until Christmas...

I spent the weekend putting up the Christmas decorations and making a Christmas CD, which I have been playing continuously since its completion ( I may or may not be listening to it at the moment). Seb has shown very little interest in the Christmas tree this year, and in fact, he took a wee huff while we were decorating it and went off to the kitchen to sulk. I think he is annoyed because it is blocking his view from the living room window. He has however taken some interest in the nativity scene, and I doubt very much it is due to religious reasons. I left him sleeping peacefully in his basket this morning when I went to get dressed, and when I returned he was still in the basket sound asleep. I was sitting in the living room for a few minutes when I first noticed a candle on the coffee table had moved slightly. On surveying the room for further evidence, I find that the nativity scene (which was sitting on a side table) had been raided. The hay from the stable was all over the sofa and all the figures scattered around the table. At first I couldn't locate baby Jesus and feared the worst, but fortunately he had just rolled under the sofa. I am just so relieved that he hadn't eaten or chewed any of the figures, as my mum got them as a child (this makes them really quite old, but I won't say how old) so it would have been a disaster. I will now have to make sure he is not left unattended in the living room again, even if he does appear to be sound asleep.

I forgot to mention in my last blog about the talk I gave at a conference recently. I was asked to help out by one of the CF trust's expert patient advisers, as she was unable to meet the commitment and was looking for a replacement speaker. The conference was about Palliative care, where this is taken to mean any care that is non-curative. Traditionally palliative care has been concerned with end of life care specifically and commonly in relation to cancer. However, it has become clear in recent years that palliative care is required at many stages of an illness, and that as well as cancer, it also applies to most chronic illnesses. I had to talk about my experiences as a patient, and based on this, what I would need and want from services. The CF team can be used as an example of a team who often deliver palliative care, as most of the treatments in CF (especially in the later stages) are to relieve symptoms and are not curative in nature. I was able to use the CF team, as well as all the other services involved in my care, as a basis to my talk. I had to speak for around 15-20minutes, and I feel that I did manage to get a few important messages across in that time. The attendees found it helpful to hear things from a patients perspective also, and the feedback after the event was apparently very positive. It's all good experience in the art of public speaking and presentation skills, which will be useful for my work in future.

I am starting some IV antibiotics tomorrow. I am not feeling too bad, but my chest was definitely on the downward slope and I was anxious about leaving things any nearer to Christmas and ending up unwell over the festive season. Hopefully this will give me a wee boost, and I can relax and enjoy all the festivities. I have had a reasonable break from IV's so I am not too upset about going back on them, although I'm not looking forward to having to get up early to make up the morning dose. I'm sure the 2 weeks will fly in though, and I finish the course on Christmas eve, which leaves me free for all the present opening on Christmas morning! Only 15 more sleeps...

I'm pleased to say that I am still feeling ok, and chest wise have been more stable over the past month than I have been all year. The last few days I have been a little more out of breath, but even if this is due to infection brewing, I am still delighted to have come this far without IV's. I will just see how things are over the next few days, as it may just settle down again, and if not, I'm sure I will have caught things early and in time for the festive season.

Speaking of the festive season, its nearly time to put up my Christmas tree and I can't wait. I have already bought and wrapped all my presents, which is clearly a sign that I have way too much time on my hands. To be fair, I am trying to be very organised just in case I happen to get 'that call'. You just never know. (Although to be honest, January would be more convenient when I have nothing else planned on my social calender ;-) )

My other good news is that I am getting a stair lift installed at home. I have been struggling with the stairs for most of this year and after a rather lengthy wait to be assessed, I finally got the go ahead to have one installed. It will take about a month to build, so hopefully by the new year I will be buzzing up and down the stairs to my hearts content. It will make such a difference to my quality of life, especially when I have a chest infection. The last couple of bad infections I've had were spent in hospital and I know if I had been at home there is no way I could manage the stairs, so hopefully this will make things easier in future. The only concern I have is keeping Seb from playing on it. I have no doubt he could learn to operate the system and would be away up the stairs before I know it. Unfortunately I think the rail will also obscure the bannister, where, when attention seeking, he likes to lie with his head poking through. I will leave you with some photos to illustrate...

Seb looks dejected and forlorn because no one is paying him any attention

Seb looks rather surprised when he is informed that his peep hole will shortly be obscured by a Stannah stair lift

The Great Escape

So, dinner was just about ready and Andrew called Seb in from the garden so we could settle down. He shouts "Seb, come here!" and Seb barks in response. The bark was distant and small, and carried on the wind - it was not coming from our garden, that's for sure. Yes, he had escaped. Again. The garden has been repeatedly "Seb proofed" over the few years we have lived here, and I really thought we had it sorted, but clearly not.

We try shouting him repeatedly, hoping that he will come back through whatever escape route he used. Seb clearly didn't want to alert us to the escape route, and just helpfully barked every time we called him. This was at least useful is allowing us to work out which garden he was in - unfortunately this garden was in a house backing on to ours, which has no rear access. Andrew therefore had to run to the end of our street, along the road, and then back up the parallel street behind, before ringing a complete strangers door to ask if he could go into their back garden. (Meanwhile I remain in our garden, shouting Seb's name with the aim of at least keeping him in one place so Andrew can locate him.) Andrew goes round to the back of the lady's house to find her husband standing in the middle of the lawn, with a small fluffy dog haring round him in large circles. Seb runs over to greet Andrew before haring off again, and diving in and out the bushes like some crazed beast. No one could catch him, and he was completely ignoring every command (and bribe) on offer.

Eventually I managed to climb on some stones in the rockery and peer over the back fence, where I saw Seb scurrying around in the undergrowth. Shining my torch on him (it was pitch black) he looked rather surprised to see me but rather helpfully ran straight to the spot where he has escaped from in an effort to come and see me (and to retrieve the cheese I was promising). Unfortunately he could not get back through (it was a tiny gap under the fence) but it at least made him stay still long enough for Andrew to get his lead on.

Andrew returned 5 minutes later with a rather exited, yet exhausted little dog. Seb collapsed by the fire for the rest of the evening, clearly worn out with the entire escapade. Just another day in the life of the worlds naughtiest little dog.

p.s I am still feeling ok, and chest is good just now. I am being low key about this good news, as I always seem to jinx things. Suffice to say, I am doing ok.

Squirrels vs Jac
2-0

Some of you may remember me blogging earlier in the year about the squirrels eating all my bird food. I tried many methods, including the RSPB recommended chilli powder, to try and deter them. Eventually I moved the feeder into the middle of my washing line, and this seemed to solve the problem. Not for long though...

A few months ago I witnessed the remarkable flying squirrel..

Psyching up for the flight

The Flight

The Landing (of sorts)

Mmmm....tasty bird seed

I was impressed by the squirrels flying skills but rather annoyed that they had outsmarted me. I decided to move the bird table further back, and again, the problem appeared to be solved.

Until....



Not only have the squirrels mastered the tight rope walk, but they appear to have a well orchestrated system of 'taking turns'! I think a squirrel who goes to that much effort almost deserves to get some bird seed...

n.b. the voice at the start of the clip saying "it looks like it is going to attack" is my mum somewhat over dramatically describing a third squirrel sitting on the hedge. The loud "Shhhhh" is me trying to stop her from commentating for the entire clip.

Stability

Things are fairly stable at the moment, which is just the way I need it to be. I had transplant clinic last week, where the team came to my local hospital and I got the chance to catch up with them. They were overall pleased with my current state of health, and felt that should the call come any time soon, I would be fit enough for the surgery. It's nearly 18months since I was assessed for transplant and they did seem a little surprised that I hadn't even had a false alarm in that time. For those not familiar with transplant lists, it is common for at least 2 people to be called for one set of lungs - this ensures that if the first person is not well enough to undergo the surgery, the lungs do not go to waste and they have a second person ready and waiting. I guess false alarms are good in that you know you have not been forgotten and you also get a trial run, so to speak. However, to be honest I can do without the trial run and I'm just keeping my fingers crossed that when the call comes, it's the real one.

I went to the shops with Andrew at the weekend. We were actually just going to look at the bookshop and have a nice coffee, but I spotted a new art and craft shop, so wanted to check it out. We decided to take the wheelchair, as it was quite far from the bookshop, so inside the shop had to use the lift to get to the second floor. I picked up some paint supplies and we were ready to head downstairs to the checkout. Slight problem - in the 10minutes we had been upstairs, the lift had broken and there was now a gathering of wheelchair bound customers and mums with prams all hanging around the lift looking helpless. The shop assistant kindly informed me that the only option now was to carry us all downstairs! I politely informed her that I could in fact walk, so would not be requiring anyone to carry me anywhere. She agreed to this plan, but only on the basis that she would assist me. By assist she meant hanging onto my arm so tight it nearly lost circulation, and holding me back slightly so that I could only descend the stairs at a snails pace. Every time I tried to speed up, she held me back saying "now take your time dear, slow down". It was rather humiliating really, although I'm guessing it was all to do with health and safety rules. Andrew had carried the chair downstairs ahead of us and stood waiting patiently as we made the painfully slow journey. He later asked if I really needed to walk that slowly, or I was just 'putting it on for effect'. As if I would do such a thing! I was relieved when we finally left the shop, but did have to wonder how they planning to get the old lady on the huge motorised scooter down those stairs. Maybe we should have hung around to watch..

I have been doing a little painting again. I finished a canvas that dad asked me to paint months ago, so I think he was quite pleased with that. It was a picture of Glenshedy Rock, in Donegal, which he can see from the golf course on holiday. I have also started some canvases for the dining room, since my pictures no longer go with the new decor. I am trying to pace myself, as I do find it really quite tiring now. I'm not very good at pacing myself though, and end up painting until I suddenly feel quite unwell and need to lie down. It's a learning process and one of these days I'm sure to get the hang of it. Maybe.

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.