Gold Star

I was at transplant clinic yesterday and got an all round great report. Blood pressure was fine, chest x-ray clear and lung function up to 104% (fev 2.94l) which is 1% higher than last time. They call it "stable" - I call it an improvement :-) Everything else was looking ok - kidney function has been stable and I am now down to the maintenance steroid dose and it doesn't seem to have rocked the boat at all. I need to phone on Wednesday to check this weeks blood tests and drug levels but I am sure they will be all as before. I completely confused the lung function lady by putting down my maiden name on the arrival sheet and then responding to that when called only to then looked confused when she couldn't find any case notes for me! We worked it out in the end but no idea why I did that - I do use it at work so perhaps being in a hospital I just thought I was at work ;-)

I have to go back in 3 months which is not bad. I was hoping for 6 months but it was a different consultant I saw this time so I didn't want to argue it - and to be honest I would rather be kept a closer eye on especially when they are still adjusting medications at this stage.

We has a busy weekend with a wedding reception on Saturday night in Hawick. We headed down on Friday to stay with Andrew's mum and dad so at least got a wee catch up. Saturday was quiet during the day and we took Seb a long walk in the autumn leaves which he loves. The wedding reception was nice although we didn't make it a late night as I was heading to Newcastle the next day. On Sunday morning we managed to catch up with Andrews good friend who has been away travelling for 18 months and just arrived home last week, so that was really nice.

At the wedding

Seb was pretty confused my everything - arriving in Hawick but not being left by us, then mum arriving on Sunday and taking me away and then Andrew taking him home again. He is getting a lot better though and starting to take all this moving about and swapping and handing over in his stride. I think as long as one of his 'pack' his around then he is ok! I did get a lovely welcome yesterday which I was not expecting so he is definitely growing up.....maybe ;-)

Seb loving all the leaves!

Me and my wee boy!

Autumn Wedding

The wedding last weekend was lovely and the weather could not have been better. It was a perfectly still sunny autumn day - perfect for photographs and guests mingling in the gardens of the hotel. The wedding took place in Alloway - the church was next door to the lovely Brigadoon hotel where the reception was held. The bride of course looked amazing and she had obviously paid a lot of attention to detail, with everything coordinating on a theme of gold and maroon. The first part of the evening was a celeidh and the second part was disco music, so everyone was catered for. It was great to catch up with all my flat mates again - some of whom were staying with us in the house in Ayr, which was even better as we managed to go for lunch on the Sunday as well. One of our other flatmates, Al, also announced that he is getting married next year - so that will be another wedding to look forward to. We are obviously at that age where all our friends are getting married. I guess it will be lots of christenings next..

Sunset in Ayr

The Happy Couple

Us...but you get a week peek at the room

Our old flatmates and their partners

Jenny looking lovely!

I wasn't feeling too bad during the wedding weekend and I have been feeling better this week - I am still taking the antibiotics although I suspect it was more viral. A lot of people at work have been unwell so I probably picked up something there. Coincidently I say the facial pain doctor this week - we have decided to stop the first drug I tried (dosulepin) as it wasn't really helping, and to increase the gabapentin. The idea is to slowly try and get it to maximum dose so we can know for sure whether this helps or not. I am not sure how quickly I will manage this as I was really knocked off when I first started it, and to be honest am still much clumsier than normal. I have increased it to the next stage and so far I am ok. He is also referring me to a more general pain specialist as he doesn't really think this is facial pain syndrome - and more a chronic pain issue that has developed on the background of acute sinus pain which went untreated for a long time. The doctor he is referring me to is apparently quite innovative so goodness knows what I might end up on ;-) I will try anything to be honest -it is not so much the severity of the pain, but the chronicity. Although I can work, and go out, and get on with life, it is always just there - sometimes in the background and sometimes much more to the fore -but I would love for it to play a much lesser role in my life. I know it probably cannot be cured but if it can managed then that is all I am asking for.

I am in Hawick at the moment as we are going to an evening wedding reception tonight! It is good because it means we are able to stay with Anne and John and get a good catch up. I am also going to Newcastle on monday for my review so my mum can just pick me up from here and we are only about an hour away. It is three months since my last review and in that time I have reduced my steroids from 10mg to 5mg so I am hoping there has been no negative impact on my lung function. I feel as if it is fine - not been breathless at all -so fingers crossed I excel myself :-) I am also hoping if all is well that he might suggest a 6 month gap but I am perhaps being optimistic!

I will have to report back soon with a Newcastle update and more wedding photos..

Feeling a bit sorry for myself..

I've not been feeling too great this week - mostly sinus related I think. The pain has been getting worse and worse all week - I thought it was quite bad at work on Monday but by Wednesday it was the sorest it's been for ages :-( I exhausted all my painkiller options, stuck some cool gel pad things to my face and in desperate attempt starting raking my cupboards for some dihydrocodeine. Always a bad sign. I went to bed really early last night to see if that would help but still felt ropey this morning so gave the CF team a call to see if they thought some antibiotics might help. The consultant called me back and we agreed on Ciproxin (which I had earlier this year) as we do still need to cover the psuedomonas bug that I no doubt still grow in my sinuses. The down side is that it makes me feel sick and last time made my joints worse - but he has given me some anti sickness tablets to take with them so hopefully that will help. I am generally feeling quite off colour, have lost my appetite and feeling quite sorry for myself but at least I have done something about it so fingers crossed I will pick up asap.

It was weird feeling not well today and I didn't go into teaching because of it - so although I was up quite early I was just sitting about all morning which takes me right back to how I used to feel. It all comes flooding back and I hate it! After 30mins of morning TV I had to switch it off - it made me feel horrible inside as if in one fell swoop I had lost everything I have gained in the past year. Totally overdramatic I know - but memories can be very powerful and it also makes me realise how fragile we all are (even me). I ended up getting into bed for a couple of hours and reading my book - something I didn't do pre transplant no matter how bad I felt. I had this odd notion pre transplant that if I started doing things like taking to my bed during the day then I had already lost the fight. I was a stubborn wee thing. But today I decided I deserved a lie down and Seb came with me ;-) This is very naughty as he is not even supposed to be in the bedroom but he is so cute and fluffy and like a hot water bottle! My mum will go mad when she reads this ...

I am actually going to a wedding this weekend so hoping that after another early night I will feel a bit more like myself. It is Kenny and Jenny's wedding - Kenny having lived in the flat at uni. They both live in London now but the wedding is in Alloway so a bit closer to home for me. My mums friend has kindly loaned me her holiday home for the weekend so we are heading there tomorrow with some friends. The wedding is on Saturday and it is forecast to be very sunny so fingers crossed that it's a lovely day for them.

I think I am about done with the moaning now so will report back when I have something cheery to say :-)

Signing up the students


So last week I went with my friend Lucie to spend a few hours at the student union with our little organ donor desk. I must admit it was really hard work! I had hoped people would approach us but although we were highly visible and positioned right beside the main door people would just walk on past in a hurry to get on with their day. We had to work hard to just grab peoples attention as they walked past. At first I started with 'excuse me, are you interested......" and that was as far as I could get before people said 'No!' without even knowing what I was talking about. So we eventually went for the more direct "Are you on the organ donor register?" shouted at people as they walked past. This usually got attention and we managed to chat with a lot of the students. I was surprised how many were actually already on the register, mostly through the tick box which is now on the driving licence application. I was also surprised at how many said "I'm not sure...I think I am!" possibly showing that not much thought had been given to the process, or perhaps that they just don't have strong opinion either way.

For those who said 'no' the majority said they had either not got round to it or just not thought about it at all. A few people wouldn't comment and a few people gave answers such as 'I don't want cut up' and 'I need my organs'. I did kindly point out to that guy that he did not really need his organs when he was dead but by this time he had lost interest in the conversation ;-) I suppose some of the very flippant attitudes really got me mad probably because the issue is so close to me. I was able to be non judgemental though and tried to gently point out facts such as them being much more likely to need a transplant than to ever donate - so what would they do if they needed an organ? Would they hope someone else had signed the register? Also pointing out that if a relative needed a transplant then, again, would they expect that person to benefit from someone else signing the register? It gave some people food for thought and I would give them a leaflet explaining more about organ donation so they can make an informed choice. Another interesting point was the number of people who would donate everything apart from their eyes. I don't think this is explained clearly in the leaflet - but just to emphasise that they do not take out your eyeballs and then just stick them in someone else's head. The donor recipient would only be receiving the cornea, which is the small clear layer at the front of the eye - so they would not look like they had your eyes!

So on the topic of peoples misconceptions about organ donation and transplantation - if you have any questions, no matter how small, about this topic then please post in the comments section and I will try to answer in next blog!

All in all I think it was a successful day and we handed out more than 150 leaflets and these were only given to those people who were genuinely interested so hopefully a good number will actually sign up. One of the problems we did have was people thinking we were promoting blood donation - I think because the donor card symbol I used on the poster looks very like the blood donor card (the same charity UK transplant runs both.) This can be remedied by simply altering my poster and I also think the new leaflets on organ donation which have just become available are a completely different design. My next project is setting up a stall in Glasgow medical school. They have a massive new building where all the medical students go to during the day and I have already been given permission to hold a stall in the foyer. The first years will learn about transplant at the end of this month so we are hoping to tie it in with these dates and get the tutors to tell them in advance that we will be there. Should be interesting to see if the medical students have different perspectives!

The rest of the week was just the usual work but at the weekend we went to a masked 30th birthday party. We had managed to get these great masks while we were in Tuscany - they had lots of masks hand decorated in Venice and they were lovely. I had a green mask to go with my dress and mum bought Andrew this massive gold and cream mask which according to the shopkeeper is meant to be Casanova! It was good fun getting dressed up with the masks although we didn't last very long wearing them. I think it would be fun to have a charity masked ball - I will have to get mum to do this as her next fundraiser. She is having an auction next month which should be great fun - this is what I am making some cards and also the butterfly charms for. I think she will have sold all the charms before the auction so any relatives reading this who want one, you better catch her soon :-)

Drama Queen

It's Seb's 5th birthday today - he didn't get a cake but he did get a really long walk off lead and a whole cocktail sausage afterwards ;-) It's hard to believe the wee guy has been around for so long. He arrived just as I started to decline health wise and although some people might think I was daft getting a dog at that time, I really think it was the best decision I ever made. He has been a life saver at times - as my health declined he gave me motivation to still try and walk every day and he kept me company through the long days when I had to give up work. He has been a great source of amusement with his hilarious antics and naughty behaviour - and to be fair he really is the cutest wee thing!

Last week was a bit mixed for me. I have still been feeling a bit down at times and this does make work very difficult as I spend the day listening to other peoples problems. One of the major problems just now is my sinuses which for some reason flared up when I got back from Tuscany and I have been popping pills like sweeties but there is not much relief. This does make it really hard to concentrate at work and makes me rather irritable (not to patients though!) By the end of last week I was feeling a bit better about work so hopefully I will have a good week ahead. I also facilitated a couple of sessions at the university so perhaps I over did things a little (not like me at all ;)) I do really enjoy the university work though as it makes me read up on topics I have long forgotten and I also enjoy interacting with the students - it is a nice change from my normal working day.

On a lighter note I forgot to mention the coffee incident that happened while waiting at the airport for the flight to Tuscany. We were sitting having coffee and I was perched at one of those really high tables where you sit on bar stools. I have been even more clumsy than normal since I started the gabapentin for pain. I am not sure exactly how it happened but I basically knocked over by cup of boiling hot black coffee, covering both Andrew and myself. I leapt off the stool and stood in the middle of the coffee shop shouting "It's burning, it's burning" (although my uncle insists I actually said "it's burny!") very loudly while jumping up and down. I did realise that everyone in the coffee shop was now staring at me, open mouthed waiting to see what happened next. I darted off to the toilets to try and get some cold water as I had scalded by hand and the hot jeans were sticking to my leg which was really quite sore. I then realised there was no cold water in the toilets - just one tap with hot water! I got myself into a cubicle to strip the jeans off while mum went off to try and find some cold water. She managed to get the cleaner to let her into the storage room beside the toilets which had a cold water tap - so I dived out into the toilets in my pants and then stood in this wee room surrounded by mops and buckets running cold water on my hand. The cleaner (who was male) took my jeans and dried them under the blow drier for me. It wasn't until afterwards I realised how bizarre the whole situation was! Of course when I got back to the coffee shop I realised I had covered Andrew more than myself yet he was just sitting quietly with his soaking wet and now stained beige trousers. No fuss. No drama. But maybe I should have been on the stage...

I think this week will be interesting - I have arranged to set up a stall in one of the university unions to promote organ donation. I spent yesterday making up a board with facts and information and I have lots of leaflets to give out with all the FAQ and a form to join the organ donor register. My friend Lucie is helping me so I am not too nervous about it and I will have someone to talk to if it is quiet. I have no idea if this will be successful but I do think students are a good group to target so fingers crossed :-)

Special Day

Today is Frances Ann's birthday and she would have been 25. Hard to believe really. Yesterday we were coincidentally at a memorial day organised by the Butterfly Trust (a Scottish charity who support people with CF). My mum was very involved with the preparation and there was clearly a lot of work put into the day. Corey is also up for the weekend so he was able to come with us. The morning started with coffee giving people a chance to mingle before the service. It wasn't really a service as such as it was not meant to be religious - but a chance for people who had lost someone to CF to gather and remember their loved ones. We had some nice music, some poetry and readings and lit candles for each month of the year. Myself and Corey both read something (mum likes to volunteer us for things!) so it was nice to fully take part. We then had some lunch and had a chance to chat and also to sign a memory book the Butterfly trust has created. They did a similar service about 20 years ago so flicking through the book there was an entry for my older sister Claire and my signature was on the page - I would have been about 10 at the time. Very strange seeing that.

We have spent the weekend at mum and dads, especially since Corey is up this weekend. My mum is having a fundraiser next month for the butterfly trust so I had the idea of making some butterfly phone/bag charms. I had bought some tiny butterfly charms for mums birthday dinner so I managed to get hold of these again with lots of coloured phone charm strings. I had not quite realised how tricky it would be to get the butterflies onto the string!! The strings first had to have a hook attached and then the butterfly hooked on and it took me about 10 minutes to get one done - I had 80 to do!! So when my cousin Sarah (who makes jewellery) popped in I ended up having her working the whole night - along with Corey and Andrew - making the charms! We did get them all done though - just shows what can be achieved with team work.

I have a public holiday tomorrow so looking forward to the extra day off! I am doing PBL on Tuesday though so have a bit of reading to do first. I was supposed to be doing one last week but it was cancelled at last minute - I was actually quite glad because it meant I could go and see my friend instead, which clearly is much more fun :-) I also met my friend Claire for dinner as she was working nearby last week - she has a new job which will hopefully mean her moving closer to the west (hint hint Claire!) which would be great for me!

I am hoping for a quiet week to allow me time to get clear my head and come to terms with all the thoughts running through my mind. It has definitely been a hard month and I feel a bit anxious and not in the best mood really so hoping to feel a bit lighter and easier in mind as the we reach a new month. I do like the Autumn months and people who know me well will realise that Christmas in the world of Jac starts around then....seriously!

Tuscany

Well we got back from Tuscany at the weekend and I can't believe we are nearing the end of another week - busy busy! Tuscany was lovely although I have to admit the weather was pretty bad. We had a lot of rain and thunder storms. When I say rain, I mean the torrential bouncing of the pavement kind of rain!

Hiding in a cafe

Stunning views when the rain stops

We were staying just outside a town called San Gimignano which is between Florence and Sienna. It's a very pretty medieval town and it was nice to wander about exploring the little streets. It was a small (!) hike up from our villa but it is amazing how much easier this is for me - I could never have coped with that before. The couple who own the villa just stay next door so they were very kind and gave us a run up in the car sometimes - especially for my uncle who has had 3 joints replaced in the last year and my cousin who is pregnant. It was odd not being the person who actually needed a lift this time!

We decided to hire a minibus one day and we went to a small town on a hillside called Montechino, which had beautiful views over Tuscany. We then managed to get into Sienna and sit in the main piazza having a coffee in the early evening sun.

Sienna

We also spent a day in Florence when it was sunnier and I really enjoyed this - it is a beautiful city. I would like to go back and stay in Florence for a few days so we can explore it properly.

Despite the weather I still really enjoyed it - it was just nice to spend some time with my family. We spent evenings playing various games my uncle had brought and it always ended in much hilarity :-) Amusingly one of the games he packed was the 'travel bomb' - can you imagine them finding that when searching a bag ;-)

Now it's back to reality and it has been a busy week so far. My consultant is on holiday this week so it has been a bit manic. I am coping well and managing the workload but I am still finding it quite emotionally draining. Sometime I think I become a little over involved (emotionally) with patients and I always feel exhausted at the end of the day. Although in all honesty this has been such a difficult month with Frances Ann's anniversary and her birthday, which is on Sunday. I seem to be more affected this year for some reason - perhaps because it has coincided with starting a new job and also the steroid reduction regime which can play havoc with mood and emotions. Hopefully everything will settle down soon and I will be back to my normal bouncing self :-)

Always a rainbow after the rain...

Holidays!!!

Well, it's been a busy week but tomorrow I jet off to Tuscany! The weather forecast is a bit dodgy with a lot of showers on and off all week but hopefully there will be plenty sunshine in between. It was about 29c last week and now dropped to 24c which is probably better for walking around. Although I am going to try and do slightly less of the walking around and more of the sitting around this holiday. We have a nice villa to share which has a pool so lots of opportunity for relaxation :-)

We had a nice meal on Wednesday to remember Frances Ann and Corey was able to stay up for that which was nice. After deciding I need to be more careful with high calorie food following my recent weight gain I then scoffed a large piece of chocolate fudge cake with cream. Not much will power.

I am still working away of our new CF booklet and at the moment am researching eating disorder behaviour in people with CF. One of the psychiatry consultants has an interest in CF and I went to see him this morning and collect some material. We had a chat about it and I have a pile of journal articles to look at....might leave that until after the holiday!

I will report back on my return....all rejuventated and refreshed ;-)

Memories

I had a busy but good weekend. I caught up with my good friend Lucie on Friday - coffee and cookies of course :-) On Saturday I bit the bullet and booked a badminton court for me and Andrew - we were complete novices but we enjoyed it all the same. I used to play badminton a bit at school but I have forgotten all the rules for a game so we kind of made it up as we went along but if we keep it up I should probably look them up! The one thing I did notice was that I was not breathless at all - so different to how I remember it being when I played at school (although this time I didn't do that much running as we spent more time picking up the shuttle cock!) Hopefully we can make it a regular weekend thing and spookily we bumped into my friend Lucie and her husband playing on another court so we have plans for some doubles at some point :-)

We then headed home to mum and dads for the night so we could catch up with Corey and then on Sunday we all went to the garden fete. Thankfully the rain held off for most of the time although it was quite chilly! I bought a soft toy for Seb but he got bored after 2 minutes and went back to his favourite bunny. He likes to lie motionless with the bunny in his mouth - I guess it's a comfort thing and it is rather cute. He has been so clingy all day, following me about and watching me constantly - I have a feeling he somehow knows I am going on holiday. I am not aware of doing anything to make him think that and in fact I am really quite disorganised but he seems to have a sixth sense about these things.

On a final more serious note, tomorrow is Frances Ann's anniversary - 5 years. I find that so hard to believe. Although time is a great healer I still miss her just as much. Always around this time I find that memories start popping into my head even though I don't think I am consciously thinking about her. Most often these are amusing stories though and I always end up smiling. I do feel a little vulnerable at these times and I just wonder why I did get my transplant and why she didn't. I like to believe that life is bigger and more complex than we can begin to imagine and that somehow this is just how it is meant to be. I will always try to make the most of the chance I have been given and know that Frances Ann is proud of me for doing so. The funny stories and the vivid memories help me along this journey - if I could approach life with even half her sense of fun and mischief then I think I will be doing just fine :-)

Podcasts and holidays

I've not had a bad week at work although the room situation is as bad as ever. I wont go into it again as I am even boring myself now! I enjoyed my clinics and am getting to grips with general adult psychiatry again. I can't really tell you much more about work due to confidentiality etc but I am meeting lots of interesting people and slowly growing in confidence.

I had a pretty bad day on Tuesday for some reason - woke up with really achy joints and cancelled my 9am physio appointment so I could get back into bed. That is really not like me. I didn't even sleep - I just felt like I needed to be lying down. The joints were a bit better by the end of the day and have been not too bad since. I have no idea why it was worse on that day. It could be related to steroid reduction again - either as a side effect of steroid withdrawal or because the steroids were actually suppressing the joint pain. My foot has been quite sore again but I definitely think this is due to the start stop traffic in the morning!! However I am fine today so no panic :-) The nurse phoned to tell me my bloods were all normal other than a slightly low cortisol. This is the body's natural steroid so it just indicates that as I reduce the steroid tablets my body is being a bit slow to start making it's own steroids again. This is totally normal and backs up the theory that the lack of steroids is causing the tiredness. I am better on this new regime and have not fallen asleep in any more clinics ;-)

Anyway I will be getting a break really soon as we are off to Tuscany next weekend! This is a family holiday with my parents, 2 uncles and an aunt and my cousin and her husband. It has been booked for at least a year and I really can't believe it has come round so fast. I am largely disorganised but it's really just a case of throwing summer things into a case and sorting my medication. I have ordered all my drugs recently so should have plenty - it's hard to keep ahead of this all the time although my GP surgery now does an order online thing which is pretty cool!

The other piece of news is that the podcast I recorded for the student BMJ has now been released. It's quite long but I speak mostly at the start and then a little bit more towards the end - overall I am quite pleased with the result although it was so long ago that I don't remember saying most of it! The medical information on transplants is really good though so it's a good resource for students. You can listen to it here

Well I am off for a wee dinner tonight with some people from my old work which will be lovely, and I will attempt not to whinge too much about the room thing at my new work ;-) This weekend is quite busy as Corey is up visiting and it is my uncles garden fete on Sunday so we are heading through for that. I will try not to spend too many pennies but do tend to get carried away on the bottle stall...

I think I will live..

I will kick of with CF clinic - had all bloods checked and since no one has phoned to say otherwise I am assuming they were all fine. The doctor felt the tiredness was related to my steroid reduction regime - I was on 10mg/5mg on alternate days (and was due to drop to 5mg today) which is an easy programme to follow but can cause problems for some people as there probably is not a steady state of steroid release. So I am now on a regime where I take the same dose daily and drop by 1mg every 2 weeks. I start on 8mg tomorrow and take it from there - by the time I am back at transplant clinic I will be down to 5mg as they expected :-) Otherwise chest sounded fine and I have put on 5kg since I saw them 3 months ago!! This is the heaviest I have been in my entire life (49kg) and gives me a normal BMI of 20. The weight seems to have gone on since I started the gabapentin so I better watch it doesn't run away with me! Also I heard that the MRI of my hip showed mild degeneration but no avascular necrosis (which is what they were worried about). The orthopaedic doc is going to discuss with hip surgeon to see if I need appointment or if it can be left alone and assume this was largely an overuse injury.

Work was so so on wednesday - I had a temporary room to sit in so at least I knew where I was for the day. Quite a few patients didn't turn up and I had forgotten how common (and annoying) this is in general adult psychiatry. Most have to be chased up because I can't just discharge someone who is potentially very ill. I am sure when my clinics fill up (which they are doing fast) I will be praying people don't turn up! I felt better about everything on Thursday once I had gone over a couple of queries with my supervisor. I think I just have that natural anxiety about a new job, but also about the patients I see - most of them are a lot more worrying than I found in old age and I tend to bring that home with me and go over things in my mind about whether I have made the right decisions. I am sure this will settle down with time and I will be able to chill out more.

My friend Lee came over for coffee yesterday so had a good catch up and we took Seb a wee walk. He was hilarious -he refused to walk unless Lee was holding the lead!!! He gets really excited when she comes over but this really was on another level. I mean what other dog actually notices, never mind cares, who is holding the lead?! Weird little thing.

Today I had an appointment with the advisor at the gym who runs the programme my physio referred me to. I explained that I had given up on the gym - initially because of the foot and surgery but then just because I realised I didn't miss it and didn't particularly enjoy it. There are a couple of classes I might try out as I think I would be more motivated if other people are there and also Andrew said he would play badminton with me so I am going to try and book a court for that. I have not played badminton since I left school over 10 years ago so it could be rather interesting!! I do have a racket in the cupboard though, which is a good start and I will try not to pick up any other joint/bone injuries ;-)

With regards to mentioning tiredness below - after an unexpected 2 hr nap this afternoon I have arranged to go to CF clinic on thurs morning and get bloods checked. Just to be on safe side :-)

This and that..

We had lovely meal on Saturday and the food was excellent! We were both a bit tired though having spent the entire day in the garden. It was the first dry day in weeks so we really had to take advantage and get caught up with the boring tasks of grass cutting and hedge trimming. I did the front grass but did not touch the hedge trimmer - I am way too clumsy for pieces of equipment I need to wave over my head :-) The side part of the garden is finished - chips down, bench moved and flower bed finished, planted and painted. Seb has spent some time in it but has not yet kicked out the bark chips. Wonders will never cease.

I had to go out on my lunch hour to get an MRI scan of my hip yesterday so it was a bit stressful trying to get back in time for the next patient. At least the scan has been done though and we can get an answer on whether there is actually anything to worry about. I think it's been a bit better lately - seeing the physio again next week and she has given me even more exercises to do in the meantime.

Work was a bit better yesterday room wise but I already know there are issues about where my clinic is tomorrow - I am sure it will all settle down in the coming weeks. I am also feeling really quite anxious and stressed just now, examples being; worrying about decisions I make at work, how good my clinical knowledge is and how this new job will work out. This is making everything else seem like a huge hassle just now and I can't really be bothered with all the mundane tasks in life e.g cooking, cleaning, ironing (although I have still done them!) I don't think this is being helped by the fact I feel so tired. Today is a day off and I hardly have any energy to do anything - I have just taken Seb out and all my joints and muscles were aching. I really think this has a lot to do with the reduction in steroids........and next week is another reduction (from 10 mg/5 mg alterate days to 5 mg daily) so I am not looking foward to that! I really want to get down to the lowest dose possible though so have to just get past this stage and eventually will be on an even keel again.

On a more uplifting note, here are some garden photos:

My margiolds just keep growing!

View down the garden standing in corner of patio

New flower bed

Bench next to flower bed (and a banana palm!)

From study window upstairs!

Survived!

I have come to the end of my first week in the new job and I am still alive. Always a good start. I am however exhausted. Obviously the stress of starting something new, more commuting and an earlier start will make me feel a bit more tired, but I think I might be warding off a virus or something because I am so so sleepy. I nearly fell asleep twice sitting in on a clinic yesterday - I kid you not. I was really interested in what the patient was saying and I was trying so hard to concentrate but it was overwhelming. I have been in bed at 10pm all this week and had a good nights sleep but I still feel tired. I will see how it goes over the weekend and if still the same I might get my bloods checked just to make sure everything is ok. Probably just a combination of reducing steroids and starting work - not really good timing!

It was too short notice to get patients booked in for clinic this week but I did do some work for the crisis team which I enjoyed. Things are starting to feel more familiar and I am sure in a few weeks I will be much more settled. The lack of rooms is an ongoing saga - I don't expect it to fully resolve but all I want is somewhere to sit! Not really a major ask ;-)

There was a mix up with the dog walker this week and Seb didn't get his walk when I was at work yesterday. I knew as soon as I came in because he was really really pleased to see me! I asked if they could walk him today instead so that I could try and rest up this afternoon (I only work Thursday morning) so at least I have chilled out a little. I spent some time making cards - mum is going to sell some at a fundraising event she is planning so I am just doing a few every now and then when I get time. I find it relaxing though so it's probably good that I have that to distract me.

Today is my 5th wedding anniversary! I can't believe it has been 5 years but looking back so much has happened in those 5 years that it feels like a lot more. I don't mean that in a bad way - I just think that we have been through more in that short time than many couples go through in a life time. It certainly makes you stronger though and it never fails to amaze me what Andrew can (and has) coped with. We are going out for dinner on Saturday to a lovely restaurant in town to celebrate so that should be a good night. Tonight we are just having some nice food from M+S so that neither of us has to stand cooking all night :-)

I think I have been better at updating my blog but the posts don't seem to be getting any shorter....

First day over!

I was too tired to blog last night - all the excitement of changing jobs, the build up etc - I was totally shattered! I did survive though - always a good start.

I arrived nice and prompt, although the journey is rather horrible. It should take 20mins by car but actually takes 40 mins in the morning due to rush hour traffic. It's that start stop traffic that I really hate. Anyway, my consultants secretary (Debbie) was there and was very welcoming. I also knew one of other secretaries as she worked in my old work place before. Debbie showed me round and gave me all the codes for doors etc - I am hopeless with these so have them all written on the back of my name badge! It was a bit chaotic and nothing had really been arranged for me and there was no plan for the coming week. Kind of what I expected. I sat in on my consultants clinics all day and in between I was sorting out a timetable of clinics with Debbie and liaising with the other staff grade (Jamie) about use of rooms. There is basically a distinct lack of rooms so I am sharing with Jamie - but the problem is we both need the room for clinics and crisis team work at the same time! I was running around sorting out when other rooms were free and I think we have it more or less sorted now. I can at least leave my books and some bits and pieces in the shared room which makes by bag a bit lighter. He seems really nice so I am sure we will get on well. I also knew most of the crisis team nurses as I have worked in that area before, so it was so good to see some friendly faces. I am sure I will get to know everyone soon enough and it's my goal to actually remember all the names.

I am back in for a full day tomorrow so Debbie is going to book a clinic for the morning (might as well just get started) and I have some crisis team work in the afternoon. The crisis team basically see people who are heading for hospital admission but this might be prevented by some intervention and support, and they also help people who have recently been discharged from the ward. They don't have a doctor on the team, so the staff grades are going to have sessions they can book for medical review. This is just a new thing starting now so we have to see how it works out.

I am glad I have the first day over and have a better idea of what I am supposed to be doing - and more importantly I know where the kettle is and already have my secret stash of sugar ;-)

I am of course nervous about my first clinic - it is very very different from what I have been doing. I am sure all will be fine!

I will leave you with some amusing photos of Seb - since we moved all the soil he has decided this bench (just moved to that part of garden where soil bag was) is now his...

End of one phase..

So this was my last week at work and I start my new job on Monday.....arghh! I had the last few days as holiday so I could get myself into general adult psychiatry mode. This involved reading guidelines on schizophrenia and bipolar disorder while getting the train into town for shopping. Seemed a fair compromise to me :-) I am really quite nervous and although I know a few people, there are also so many people I don't know and so many new things to learn. It's just that feeling of not quite knowing what's about to happen - I don't even have a timetable set out yet so not sure when clinics are and when I do emergency work etc but I am sure it will all become clear on Monday. I hope.

I had a good time last weekend meeting up with friends from London who were up in Glasgow sorting out some wedding preparation (same friends we met when we went to London). I thought we were heading for a nice meal and maybe a couple of drinks and had duly purchased my return train ticket (last train at 11.30pm). It didn't quite work out like that and we ended up at The Garage which is a big nightclub in Glasgow - not renowned for being a high class establishment. It's where we went almost every Thursday at uni where we danced to cheesy pop whilst dodging broken glass bottles littering the floor and people waving their cigarettes on the dance floor, knowing never to put your arm down on a table or it would be soaked in some unknown drink, and best of all, being literally stuck to the floor at times. We loved the sticky floor! It would seem that health and safety might have caught up with them eventually - the drinks were served in plastic cups, so no more broken glass and staff were going about with mops actually cleaning the not so sticky floor. We all nearly fell off our seats when someone came and actually wiped the table. It was all so wrong. Otherwise however it was all the same...except we are all 10 years older - scary. Myself and Andrew escaped before 2am when games of 'chink and drink' were well under way. I heard they stayed until 3am before sampling the Glasgow chips and cheese. Not sure I want to know much more than that.



Despite the late night Andrew made good progress with the garden and he made the new flower bed from sleepers, shifted the ton of topsoil into it and also moved the whole ton of chips to cover that area. Good work. We now just need to pot some plants into the flower bed and finish repairing the bench before moving it. Nearly finished this years garden phase then.

Seb is sad at the loss of his topsoil bag lookout! He has of course been padding about the new flower bed and kicking up the soil, barking and generally making sure we know it now belongs to him. We are putting weed fabric down so bought some bark to cover it - I am sure this is going to be a mistake and can just see Seb with a tail full of bark! He has been a bit clingy this week (think because I have been away a few times recently). He is still often hiding when it's time for me to leave but I know all his hidey holes now so have to go and find him and put him in the hall. I guess he knows it makes me leave 5 mins later. I was in when the dog walker came the other day and he wouldn't go with her because I was in the house -I think he thought I might leave when he was out. I made him go though and she said he was fine as soon as he got on his walk - wee chancer!

This weekend is my friend Claire's 30th birthday celebration so I am really looking forward to that. It's in Edinburgh so we will go and stay with mum and dad and get the train in. Should be a good night :-)

I keep meaning to try and do shorter but more frequent blog entries - so going by that rule I should update shortly on the new job...

TEAM JAC TOTAL

We have raised a total of £23, 080 through donations, but with gift aid added that takes us to......

£26, 295!!!!


Go Team Jac!

Just Giving Page closes tomorrow - last chance today!!

Tired

I have been really tired the last couple of days and my limbs feel heavy and achy. I am more or less convinced this is due to the reduction regime for my steroids. Your body gets used to a certain level of steroid and when you reduce that you can feel 'not so good' for a little while. I have experienced this so many times in the past so I know it will eventually pass.

Despite feeling tired I have had a busy week. Last weekend was go go go! We had a friends 30th BBQ on Saturday - unfortunately the weather wasn't great but we did manage to sit outside (me with my North Face jacket on haha). My new drink at the moment is Malibu and fruit juice - I am not allowed fizzy juice after my operation in January so have been trying to find alternatives. We spent the afternoon experimenting with various combination of Malibu, pineapple juice and cranberry juice - all very nice :-) A few friends then stayed over on Saturday and it was great to catch up. On Sunday I headed into town to meet my friend Claire and we had some lunch, some coffee and some shopping. She is entirely responsible for everything I bought.

I had my physio appointment first thing on Monday. She had a look at my hip and found the muscles on that side are much weaker than the other side, so I have some exercises to do which should strengthen that side. The x-ray had not been reported yet so no clear diagnosis yet. She is hopeful it is just an overuse injury (from the walk) and I should be able to work on this. I then had to dash straight to the meeting with occupational health at a different hospital. The meeting lasted all of 2 minutes where she said that since I had been working since February with no issues I was clearly fit for work. So now I am just waiting for official news about the new job and confirmation of start date (which should be 17th August). Would be nice to see a contract also...

Tuesday and Wednesday were really busy at work because I am trying to fit in as many patients as I can before leaving so I can tie up loose ends and leave clear notes about my management plans etc. We also had a team lunch out for me leaving which was really nice - it's definitely one of the best teams I have worked in :-) I will be really sad to leave this job and really hope I enjoy the new one as much as I have enjoyed this one!

So today I am trying to rest up a bit. So far I have made some soup and a card for a friend. I am now trying to work up the energy to take Seb out for a walk. Might need some coffee first....

N.B Just Giving page closes this Sunday so only a few days left to donate!

Official Live Life Then Give Life Advocate

I have unofficially been doing some work for LLTGL but I am now officially the advocate for Scotland. Essentially my role is just that - to advocate the charity as much as possible. I am not keen on media work involving newspapers - although we did get a fair bit of local coverage regarding the walk. I also recently did the radio interview, and of course, the Team Jac walk has been my main project for a while! I have however been quite proactive this week and contacted two of the big universities in Glasgow about setting up a stall during Freshers week - to raise awareness of organ donor issues and hopefully get some people to sign the register. Unfortunately we would have to pay (£250!) for a stall during Freshers week at one university - however their charity group has very helpfully suggested they can set one up at another time in the union foyer for free and would even help me man the stall. I am just waiting to hear from Glasgow university.

Myself and Emily have also started work on our next booklet which will look at CF and Body Image. At the moment we are brainstorming and collecting ideas from other people with CF and then we will move onto creating an online questionnaire to collect more statistics and information. I have quite a few health professionals from various areas to help with this project so hopefully we can also offer some tips and advice in the booklet. You would be surprised how large a topic this is and how many people are affected. We are looking at issues such as - problems with weight, with perception of weight/size, changes in posture, being small/young looking, having ports/pegs tubes, side effects of medication...and many more topics. If anyone with CF is reading this and would like more information please contact us at cfbodyimageATgooglemailDOTcom.

I have also had some relaxation time in between all that :-) I caught up with a couple of friends which was nice. Yesterday I visited my friend Lucie who has a new baby called Reuben. I made the mistake of taking Seb with me, thinking I had tired him out with a walk. Between Seb padding about poking his nose into everything, jumping on furniture and pawing frantically at the patio doors and poor Reuben being fractious because there was too much going on for him to sleep - we hardly completed a conversation! I think I will leave Seb at home next time! I had a lovely afternoon anyway - I hope I am going to be like one of those pretend aunties to Rueben (although he doesn't have to call me aunty -that would make me sound too old!)

I am going to a friends 30th birthday BBQ today so hoping the weather will hold out - forecast for rain but you can never tell in Scotland. Three of our friends are staying over as they live some distance away so just getting organised for that. Then tomorrow I am meeting two friends for lunch, shopping, coffee then cinema (to see My Sister's Keeper) - so a bit of a mega day out! This will allow Andrew plenty time to clear up ;-)

Finally I will leave you a link to my friend Louise's Just Giving Page. I have mentioned Louise in my blog before - she had a lung transplant last year but had many complications afterwards, so did not really gain much lung function and still has to use her wheelchair to get around. She has also developed a type of cancer that can occur after transplant and has significant heart failure. Despite this she continues to try and fundraise for both Live Life Then Give Life and another charity who supported her when she also battled a childhood cancer. She is planning a 'tree hugging' event where she has to hug a tree for an hour - don't think I could do it!