Flying towards £15,000....
So the Team Jac offline sponsorship is starting to come in and we are nearly at the £14,000 mark! I know we will definitely reach £15,000 because I am aware of some of the money still to be added. It is truly amazing that we have managed that from one event. It was worth all the planning, the sore legs and battling the elements on the day. I think it will be a few weeks before we have the absolute final total and I can't wait to see what it is!
I have had another really busy week, namely because I had taken on another three PBL sessions at the university. I have taken all those offered to me because the university is now on holiday for the Summer so I will not get any over the next few months. This is probably a good thing because it will give me a bit more breathing space, but money wise I will miss it! Although I am working as hard as I can just now, I still don't earn more than when i was off sick - due to the loss of most of my benefits. It is a strange system indeed but I would much rather have working lungs than money.... although I quite like the latter. Of course now I am able to get out and about, I am also able to spend it more! The uni work has been good though as I have been squireling it away to fund a wee summer holiday. We both have a week off in June and are looking for somewhere warm but with interesting things to do and see, while still being relaxing. I am not really into beach holidays and post transplant am not really supposed to lie about sunbathing (meant to wear sun block even in this country!) Andrews mum and dad have suggested Nice, which we are looking at.....but any ideas please leave a comment!
Since I have increased my work sessions I will be out two full days during the week, so we have been looking at dog walkers. Seb really can't be left for that long as he gets so bored and is visibly depressed when I get home! He mopes around harassing me to take him out, which is quite stressful when you are just in from work and trying to get dinner ready. Anyway, a local company was recommended to us and we had a meeting with them this week. It is run by two young women who both seemed very nice and to genuinely be interested in dogs. We are going to try them out - starting from next week, so that will be interesting! I am hoping he will walk in a group (it is cheaper!) but they never have more than 4-5 dogs together which doesn't seem too bad. I have no idea how he will react to this - he likes most dogs he meets but was quite overwhelmed at dog training, but there were about 15 dogs at that time. Hopefully he will behave and not show me up!
Thanks for the comments on my fancy dress photos - it appears most of you think I should go blonde ;-) I think hi lights are about as radical as I will get though! My hair is a nightmare just now because it has been falling out at a rate of noughts. I used to get this pre -transplant when I had a bad infection. Basically when you are very unwell all your hair stops growing at the same time (conserve energy) so around 3 months later it will start falling out at the same time, so it appears if you are losing tons of hair. This has been happening recently and I think it is related to being so unwell after the surgery in January. All the new hair is growing in underneath which is creating a nice wee spiky frizzy effect. Lovely. It is visibly thinner at the moment, although this could also be due to long term steroids. Hopefully it will settle down and be back to normal in a few months time. The steroids are annoying me at the moment because they are also making my skin bruise easily. I have bruised all up the inside of my arms and also lots on my legs. A few people have commented thinking I have had lots of attempts at taking blood. I did ask about getting my steroids reduced but the transplant team want to keep them at this dose for quite a while longer. I guess they keep me alive. That is rather useful.
Lastly, I have been spending a bit of time this week preparing a presentation for teaching next week. It is just teaching at the community resource centre I work in (we also have big teaching at the main hospital) so there will only be a handful of people there - but I always end up putting in way too much effort anyway. My mum has always said 'if a thing's worth doing, it's worth doing properly!' and that has always stuck in my mind. I am more or less finished my slides but need to start working on the case I have to present at Journal Club the following week! It has been a while since I presented anything but I don't really mind - it's just another excuse for me to talk non stop :-)
It is not too busy a weekend thank goodness. Tonight we are going to a charity race night which should be good fun and maybe I will even win something! The last organised race night I went to was shortly before my transplant - I had a horse called 'Puff-a-Long'! Oh how times have changed. Actually I was just looking over my blog posts from last May and I now realise I was probably quite manic. It was around this time I decided that I could carry a 5 litre watering can around the garden (repeatedly) despite the fact my breast bone had just been sawn open 3 weeks earlier. I thought it was entirely reasonable at the time! Luckily I have settled down a bit now but I still get a total buzz from being on the go most of the time - it's just the constant feeling that life is too short and I am going to pack as much in as possible. As long as I am enjoying myself then I think that is ok..
Saturday, May 23, 2009
Sunday, May 17, 2009
Busy Week
I was hoping for some well earned rest after the walk, but it has been a very busy week! Monday was supposed to be recovery day but unfortunately I had a hospital appointment mid day which was a bit annoying. It was just a dermatology review - you have an increased risk of skin cancer due to the immunosuppression drugs so they have to be careful about this. Everything was fine and I don't need to go back unless there are any problems. After that I had an interesting afternoon - recording a podcast for the student BMJ (British Medical Journal) about transplant. Apparently the journal are running a big transplant issue, covering various learning topics on this area for the students. A podcast is basically a recording the students can download to listen to. The BMJ editor had heard about me via a doctors forum who were sponsoring my walk and thought it would great to interview someone who had a transplant but was also a doctor. I think they also interviewed a live kidney donor and a transplant surgeon. I was talking for about an hour on the phone (directed by their questions) and they ran out of studio time haha! It will have to be condensed down so not sure what will be covered but hopefully I will sound ok and not 'too' scottish :-) I am not sure when it will be finished but will post a link if it's possible at the time.
Tuesday and Wednesday were very busy because those were my first two full days at work...for a long time! I got on fine and wasn't too tired at all - however I did feel quite stressed when I got home on Wednesday. It was the feeling of walking in the door, straight into the kitchen to start dinner with Seb po-going round me because he wanted a walk. Then I looked around and the house seemed really messy because I would normally have just cleared up in the afternoon as I went along. So in the time it took for my dinner to cook, I had flown round sweeping floors, dusting and cleaning and sent Andrew out to bring washing in and hoover. I felt like I couldn't sit down and relax with all that still to be done. I think it was mostly because I was meant to be working at the uni thurs and friday so just felt it was piling up. What I need to learn is that these things can wait, and it doesn't really matter if I am on top of things all the time. It's not even that I am a clean freak or obsessively tidy, but I do just feel so much calmer and happier when my surroundings are clutter free and clean. It's probably some control thing - especially when in the past I have had very little control over my life, especially health wise, so I tend to use external factors to gain that feeling. I probably need to try and let go of this.
In the end my Thursday uni teaching was cancelled so I had CF clinic in the morning (got on fine) and mum came through in the afternoon. We popped out to Debenhams to spend our vouchers - there wasn't much I really liked but funnily enough I managed to spend the vouchers anyway ;-)
Friday I was doing two PBL sessions at the uni so was there most of the day. It was a little boring because it was two different groups but the same scenario so I had to listen to the feedback on the same information twice. I probably learnt quite a lot though! It was about iron metabolism, which actually does tie in with a case presentation I have to do at work in a few weeks, so probably useful. I actually volunteered to present a case at journal club - I must be nuts! It was really because the case is interesting and I also did quite a bit of work on it before I went of sick two years ago - so would be good to finally present my findings before I leave this job in the summer.
The really exciting news from this week is that we have found drug company sponsorship for our CF booklet (CF and Relationships). I had sent out copies to all the CF units and one of the consultants took it to a conference to show the drug company - they loved it and immediately agreed to funding a run of thousands to be distributed to all CF units who wanted copies for their patients!!! They will hopefully also be able to take it along to the big North American CF conference this year, so I can say we are going global. Their sales team will handle the distribution so I don't even have to do anything. This is the best news for me and Em and has made all the hard work seem so much more worthwhile. We are already planning our next booklet - but it is top secret just now ;-)
Lastly, I was at my friend Gillian's 30th birthday last night - it was fancy dress (famous characters throughout the years - real or fiction). Myself and Andrew went as 'Bonnie and Clyde'. We dressed up based on the movie and fortunately everyone seemed to know who we were meant to be. I had to go blonde for the night which was most bizarre but also good fun! We didn't really know anyone else at the party because my other school friends couldn't make it - but I just sat with some of Gillian's teacher friends and chatted to them. It didn't stop me dancing either and we had a lovely night. I will leave you with some photos....
Fay Dunaway eat your heart out...
I was hoping for some well earned rest after the walk, but it has been a very busy week! Monday was supposed to be recovery day but unfortunately I had a hospital appointment mid day which was a bit annoying. It was just a dermatology review - you have an increased risk of skin cancer due to the immunosuppression drugs so they have to be careful about this. Everything was fine and I don't need to go back unless there are any problems. After that I had an interesting afternoon - recording a podcast for the student BMJ (British Medical Journal) about transplant. Apparently the journal are running a big transplant issue, covering various learning topics on this area for the students. A podcast is basically a recording the students can download to listen to. The BMJ editor had heard about me via a doctors forum who were sponsoring my walk and thought it would great to interview someone who had a transplant but was also a doctor. I think they also interviewed a live kidney donor and a transplant surgeon. I was talking for about an hour on the phone (directed by their questions) and they ran out of studio time haha! It will have to be condensed down so not sure what will be covered but hopefully I will sound ok and not 'too' scottish :-) I am not sure when it will be finished but will post a link if it's possible at the time.
Tuesday and Wednesday were very busy because those were my first two full days at work...for a long time! I got on fine and wasn't too tired at all - however I did feel quite stressed when I got home on Wednesday. It was the feeling of walking in the door, straight into the kitchen to start dinner with Seb po-going round me because he wanted a walk. Then I looked around and the house seemed really messy because I would normally have just cleared up in the afternoon as I went along. So in the time it took for my dinner to cook, I had flown round sweeping floors, dusting and cleaning and sent Andrew out to bring washing in and hoover. I felt like I couldn't sit down and relax with all that still to be done. I think it was mostly because I was meant to be working at the uni thurs and friday so just felt it was piling up. What I need to learn is that these things can wait, and it doesn't really matter if I am on top of things all the time. It's not even that I am a clean freak or obsessively tidy, but I do just feel so much calmer and happier when my surroundings are clutter free and clean. It's probably some control thing - especially when in the past I have had very little control over my life, especially health wise, so I tend to use external factors to gain that feeling. I probably need to try and let go of this.
In the end my Thursday uni teaching was cancelled so I had CF clinic in the morning (got on fine) and mum came through in the afternoon. We popped out to Debenhams to spend our vouchers - there wasn't much I really liked but funnily enough I managed to spend the vouchers anyway ;-)
Friday I was doing two PBL sessions at the uni so was there most of the day. It was a little boring because it was two different groups but the same scenario so I had to listen to the feedback on the same information twice. I probably learnt quite a lot though! It was about iron metabolism, which actually does tie in with a case presentation I have to do at work in a few weeks, so probably useful. I actually volunteered to present a case at journal club - I must be nuts! It was really because the case is interesting and I also did quite a bit of work on it before I went of sick two years ago - so would be good to finally present my findings before I leave this job in the summer.
The really exciting news from this week is that we have found drug company sponsorship for our CF booklet (CF and Relationships). I had sent out copies to all the CF units and one of the consultants took it to a conference to show the drug company - they loved it and immediately agreed to funding a run of thousands to be distributed to all CF units who wanted copies for their patients!!! They will hopefully also be able to take it along to the big North American CF conference this year, so I can say we are going global. Their sales team will handle the distribution so I don't even have to do anything. This is the best news for me and Em and has made all the hard work seem so much more worthwhile. We are already planning our next booklet - but it is top secret just now ;-)
Lastly, I was at my friend Gillian's 30th birthday last night - it was fancy dress (famous characters throughout the years - real or fiction). Myself and Andrew went as 'Bonnie and Clyde'. We dressed up based on the movie and fortunately everyone seemed to know who we were meant to be. I had to go blonde for the night which was most bizarre but also good fun! We didn't really know anyone else at the party because my other school friends couldn't make it - but I just sat with some of Gillian's teacher friends and chatted to them. It didn't stop me dancing either and we had a lovely night. I will leave you with some photos....
Me and the Birthday Girl (Marie Antoinette)
Andrew and Gillian
Looking strangely gleeful about holding a gun
Fay Dunaway eat your heart out...
Tuesday, May 12, 2009
News Just In...
A wee article in Edinburgh Evening News today about the walk - click here
I only spoke to the journalist yesterday (who covered the story before walk) so I didn't expect it to appear so soon! Apparently there is a photo in the paper but not online - I haven't even seen the paper yet.
I have 2 extra sessions at work starting from this week (so 16hrs/week now) plus I somehow signed myself up to facilitate 3 PBL sessions...and have CF clinic somewhere in the middle of all that. That was sensible planning for the week after the walk ;-) Seriously though, I feel absolutely fine now and also wasn't too tired after my first full day at work in a long long time!
Might not be saying that by the end of the week though haha...
A wee article in Edinburgh Evening News today about the walk - click here
I only spoke to the journalist yesterday (who covered the story before walk) so I didn't expect it to appear so soon! Apparently there is a photo in the paper but not online - I haven't even seen the paper yet.
I have 2 extra sessions at work starting from this week (so 16hrs/week now) plus I somehow signed myself up to facilitate 3 PBL sessions...and have CF clinic somewhere in the middle of all that. That was sensible planning for the week after the walk ;-) Seriously though, I feel absolutely fine now and also wasn't too tired after my first full day at work in a long long time!
Might not be saying that by the end of the week though haha...
Monday, May 11, 2009
We did it!!
Saturday was the big Team Jac walk and I am pleased to say that myself and Seb made the whole 10 miles :-) There was an excellent turn out with around 160 team members and all plans went really smoothly - everyone being on time and the buses (thanks to McKechnies of Bathgate and Jack Simpsons mini buses) leaving promptly, which was great as we had to do a couple of runs to get everyone to the start point in Elie. The weather at that point was cold but dry and we got off to a good start - however the predicted showers turned into a continuous downpour! Spirits remained high though and I just saw it as an extra challenge to be overcome. The Crusoe hotel in Lower Largo had kindly set up a room for us to use while catching a coffee/pint and a chance to dry off a little before the last few miles. I have been assured by those wearing pedometers that it was probably closer to 11-12 miles in total, so that's even better! I managed the whole route without too much difficulty - I didn't feel too tired, my lungs were top notch and gave me no trouble but my back was a bit of a hindrance. We were walking on sand for a good part of the route and this played havoc with my back, which resulted in a very sore hip the next day. Even by today though I am much better and walking (almost)in a normal fashion again.
Seb was a total star and trotted the whole way, closing his eyes against the rain and wind, but never stopping. He was still hyper when we got home and appears to have had no ill effects at all....clearly fitter than I gave him credit for!
Another high light of the weekend was finally meeting my friend Emily. As Emily was staying with us we got plenty time to catch up, and 10 miles of talking non stop was surprisingly easy. Emily astounded herself by also completing the walk, so we were a very happy pair. Amusingly Seb took a real like to her and followed her around for the entire weekend. During the walk he insisted on walking at her heel, even though I had the lead, and he wouldn't go on if she was behind. I like to think he knew it was hard work for her and was just making sure she was ok :-)
On the money front we have now smashed the £10,000 mark and money is still coming in from offline collections. I will be adding this all to the Just Giving site as we get it, so keep an eye on the page for the latest total. I cannot believe the generosity shown and I hope this money will go a long way to helping others in my situation.
I have been looking back at some old blogs to see what I was doing at this time last year. I was a couple of weeks post transplant at this stage and a one of the quotes from this time seemed rather apt;
"I also had my lung function repeated today and it was 50%. I must admit to feeling quite disappointed as I am desperate to see a big improvement and just dream of having near perfect lung function. I just wish I could see into the future and beyond this immediate recovery period because at the moment I am still finding it hard to imagine myself doing 'normal things' like taking Seb out for a walk. I think the difference will be when I get back home into my own environment and start to discover all the new things I can now achieve".
If only I had known quite how far I would come! It's almost too easy to forget what it was like last year. Even after I got home from the transplant I could still only walk a few minutes down the road. It has been a great year - some ups and some downs, but more of the ups - so maybe this time next year I can look back and see how far I have moved on again. 20 miles next year anyone? ;-)
I will leave you with some pictures of the walk - I have all my pics uploaded to a website, so if you want the link please email me (weejaqAThotmailDOTcom) as I don't want to put the link in the public domain, as other people are in the pictures.
Arriving at the end...rather wet!
Saturday was the big Team Jac walk and I am pleased to say that myself and Seb made the whole 10 miles :-) There was an excellent turn out with around 160 team members and all plans went really smoothly - everyone being on time and the buses (thanks to McKechnies of Bathgate and Jack Simpsons mini buses) leaving promptly, which was great as we had to do a couple of runs to get everyone to the start point in Elie. The weather at that point was cold but dry and we got off to a good start - however the predicted showers turned into a continuous downpour! Spirits remained high though and I just saw it as an extra challenge to be overcome. The Crusoe hotel in Lower Largo had kindly set up a room for us to use while catching a coffee/pint and a chance to dry off a little before the last few miles. I have been assured by those wearing pedometers that it was probably closer to 11-12 miles in total, so that's even better! I managed the whole route without too much difficulty - I didn't feel too tired, my lungs were top notch and gave me no trouble but my back was a bit of a hindrance. We were walking on sand for a good part of the route and this played havoc with my back, which resulted in a very sore hip the next day. Even by today though I am much better and walking (almost)in a normal fashion again.
Seb was a total star and trotted the whole way, closing his eyes against the rain and wind, but never stopping. He was still hyper when we got home and appears to have had no ill effects at all....clearly fitter than I gave him credit for!
Another high light of the weekend was finally meeting my friend Emily. As Emily was staying with us we got plenty time to catch up, and 10 miles of talking non stop was surprisingly easy. Emily astounded herself by also completing the walk, so we were a very happy pair. Amusingly Seb took a real like to her and followed her around for the entire weekend. During the walk he insisted on walking at her heel, even though I had the lead, and he wouldn't go on if she was behind. I like to think he knew it was hard work for her and was just making sure she was ok :-)
On the money front we have now smashed the £10,000 mark and money is still coming in from offline collections. I will be adding this all to the Just Giving site as we get it, so keep an eye on the page for the latest total. I cannot believe the generosity shown and I hope this money will go a long way to helping others in my situation.
I have been looking back at some old blogs to see what I was doing at this time last year. I was a couple of weeks post transplant at this stage and a one of the quotes from this time seemed rather apt;
"I also had my lung function repeated today and it was 50%. I must admit to feeling quite disappointed as I am desperate to see a big improvement and just dream of having near perfect lung function. I just wish I could see into the future and beyond this immediate recovery period because at the moment I am still finding it hard to imagine myself doing 'normal things' like taking Seb out for a walk. I think the difference will be when I get back home into my own environment and start to discover all the new things I can now achieve".
If only I had known quite how far I would come! It's almost too easy to forget what it was like last year. Even after I got home from the transplant I could still only walk a few minutes down the road. It has been a great year - some ups and some downs, but more of the ups - so maybe this time next year I can look back and see how far I have moved on again. 20 miles next year anyone? ;-)
I will leave you with some pictures of the walk - I have all my pics uploaded to a website, so if you want the link please email me (weejaqAThotmailDOTcom) as I don't want to put the link in the public domain, as other people are in the pictures.
Before the walk - waiting on everyone to arrive
My group ready to start the walk in Elie
Arriving at the end...rather wet!
Tuesday, May 05, 2009
4 days until big walk.....what have I done???
I cannot believe the Team Jac walk is on Saturday - it seems to have suddenly come around and I don't really feel ready! In fact, I have very helpfully just put my back out moving plant pots on the patio at the weekend. I was fine at the time but woke up yesterday and was largely unable to move. I have been walking bent over all day and looked a complete state at work - fortunately I just had a meeting, one home visit and journal club - but tomorrow I have a full clinic so will be hobbling back and forth to waiting room like an old lady. From past experience it does usually improve over a few days so I am hopeful that I will be recovered by Saturday. Otherwise the walk might take me a bit longer than planned ;-) I am really looking forward to the big day though and am just tidying up last minute plans now - printing of team list, maps etc. I popped into my chemist today and he had got me a big supply of blister plasters for first aid kits I want to make up so that was really good - it's definately who you know. I am also looking forward to Emily coming up for the walk - we were never allowed to meet pre transplant due to cross infection risks but now we can meet properly, in person, for the first time :-)
I have also been shopping already with my birthday vouchers and I am impressed with how much I managed to spend in a 2 hr period. I then had to return to the shops the following day after deciding the jeans I bought were too tight. I came home with 2 pairs of shoes. Not sure how that happened really. I still have Debenhams vouchers, as does my mum from her birthday, so we will plan a joint shopping spree soon - I do love vouchers, as it really is guilt free shopping :-)
Apart from putting my back out, I did have a really productive bank holiday weekend with lots of things done in the garden. I am really pleased with how it is looking - most of the plants have grown back in the rockery and all the ones in pots are doing really well. I think we are going to try and sort the side part of the garden, which is a bit redundant. I want to move the bench over there and put some slate down - but first we have to get rid of the ton of top soil sitting in a bag (came from leveling ground for hut last year). So if anyone needs some top soil, feel free to come and help yourself. I am being serious!
Tomorrow mum is coming through for a catch up after my work - I seem to have hardly got a chance to see her properly in last few weeks due to all the buzz. She was in Amsterdam at the weekend but what she hadn't know was that I had organised for 5 other couples to go with her and dad! She met 3 couples at the airport here, then her sister and her husband in Amsterdam airport, then Andrews parents were at the hotel. I don't think she could have taken any more surprises!! It was well worth all the organising though because I think they had a fantastic weekend.
I will leave you with some pics of the garden...
I have forgotten what this is called - it's very nice though!
I cannot believe the Team Jac walk is on Saturday - it seems to have suddenly come around and I don't really feel ready! In fact, I have very helpfully just put my back out moving plant pots on the patio at the weekend. I was fine at the time but woke up yesterday and was largely unable to move. I have been walking bent over all day and looked a complete state at work - fortunately I just had a meeting, one home visit and journal club - but tomorrow I have a full clinic so will be hobbling back and forth to waiting room like an old lady. From past experience it does usually improve over a few days so I am hopeful that I will be recovered by Saturday. Otherwise the walk might take me a bit longer than planned ;-) I am really looking forward to the big day though and am just tidying up last minute plans now - printing of team list, maps etc. I popped into my chemist today and he had got me a big supply of blister plasters for first aid kits I want to make up so that was really good - it's definately who you know. I am also looking forward to Emily coming up for the walk - we were never allowed to meet pre transplant due to cross infection risks but now we can meet properly, in person, for the first time :-)
I have also been shopping already with my birthday vouchers and I am impressed with how much I managed to spend in a 2 hr period. I then had to return to the shops the following day after deciding the jeans I bought were too tight. I came home with 2 pairs of shoes. Not sure how that happened really. I still have Debenhams vouchers, as does my mum from her birthday, so we will plan a joint shopping spree soon - I do love vouchers, as it really is guilt free shopping :-)
Apart from putting my back out, I did have a really productive bank holiday weekend with lots of things done in the garden. I am really pleased with how it is looking - most of the plants have grown back in the rockery and all the ones in pots are doing really well. I think we are going to try and sort the side part of the garden, which is a bit redundant. I want to move the bench over there and put some slate down - but first we have to get rid of the ton of top soil sitting in a bag (came from leveling ground for hut last year). So if anyone needs some top soil, feel free to come and help yourself. I am being serious!
Tomorrow mum is coming through for a catch up after my work - I seem to have hardly got a chance to see her properly in last few weeks due to all the buzz. She was in Amsterdam at the weekend but what she hadn't know was that I had organised for 5 other couples to go with her and dad! She met 3 couples at the airport here, then her sister and her husband in Amsterdam airport, then Andrews parents were at the hotel. I don't think she could have taken any more surprises!! It was well worth all the organising though because I think they had a fantastic weekend.
I will leave you with some pics of the garden...
Violas in greenhouse
I think I was only meant to put one seed per pot. I blame my tremor for the fact there are clearly about 2o plants in each pot ;-)
I think I was only meant to put one seed per pot. I blame my tremor for the fact there are clearly about 2o plants in each pot ;-)
Marigolds
I have forgotten what this is called - it's very nice though!
One half of the rockery
Other half!
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