Booklet is online!!!
The 'CF and Relationships' booklet that myself and Emily have been working on for AGES is finally available for download at the CF Trust website (click here). It has also gone to print and I should have the actual booklets by next week to send out to the CF units. So much time and effort has gone into this project and I am delighted with the final outcome. We have had good initial feedback from people with CF and I hope it is a useful resource for many people - it certainly covers lots of topics not dealt with elsewhere.
I have also been doing lots of work on Team Jac - making up groups and an action plan for the day. If you are walking you should have got an email today - so if you didn't, let me know! I can't believe how much we have raised so far and we are not finished yet :-) I also had a call from my local MP's (Jo Swinson) office in London - she is keen to help with publicity and we are going to set up a 'training walk' together and they will invite local papers to attend. You know how much I love being in the paper....
I was facilitating again last week and still really enjoying it! I don't mind reading up all the information before the session because it's strangely enjoyable re-learning medical topics I used to know and probably still should. I am sure the novelty will soon wear off! After the session I had coffee with my friends, which was lovely. One of my friends is about to have her first baby and I am so excited for her - I plan to be like one of those pretend aunties who the child later discovers is not a real aunty haha :-)
I had a busy weekend catching up with some gardening things - we spent Saturday buying and planting seeds for various vegetables, so fingers crossed we don't get a hard frost now. Maybe nothing will grow but it's good fun trying! I might post some photos if anything starts growing :-) I am also currently growing some bean sprouts in my study - apparently you just sit the seeds on wet kitchen roll and they grow. We will probably end up with about three bean sprouts for our stir fry....
We took Seb for a long walk at the park on Sunday but I didn't cope too well. All my joints have flared up for some reason and instead of my knees this time it's my hips and elbows - weird combination! I am also still getting this stitch pain in my wound when walking, so have left a message for the surgeon in Newcastle to see if I can get a sooner appointment. Hopefully it's nothing to worry about and probably just some adhesions from the healing - very annoying though! At this rate I may need carried most of the way around the walk - but there are 174 people - so I'm sure they can cope ;-)
Andrew also took me shopping for my 30th birthday present - he is getting me an eternity ring :-) It was quite hard to find something that looked good with my wedding and engagement ring but we did find a lovely ring. Only downside is that because I am a non standard ring size it will take a month to come in!! It would have been nice to have it before my actual birthday but I think it's worth waiting to get the ring I want and I am rather excited.
Monday, March 30, 2009
Thursday, March 26, 2009
Prayers for Louise
I am posting this separate to my Berlin post for obvious reasons. I just wanted to ask people to keep my friend Louise in your thoughts and prayers at the moment. She had her lung transplant towards the end of last year and you may remember she had a very rocky time, with weeks spent in ITU on several occasions afterwards. She has not been very well lately and they finally did scans and biopsies and now realise she has "Post Transplant Lymphoproliferative Disorder (PTLD)" which is a serious condition which can occur in people post transplant. She is currently undergoing chemotherapy treatment for this in hospital, so please keep her in your thoughts and pray for a positive outcome of this treatment. She has been through so much already - with the new lung already severely damaged from post op complications so needs immense strength to overcome this latest hurdle - but I am sure she can do it.
I am posting this separate to my Berlin post for obvious reasons. I just wanted to ask people to keep my friend Louise in your thoughts and prayers at the moment. She had her lung transplant towards the end of last year and you may remember she had a very rocky time, with weeks spent in ITU on several occasions afterwards. She has not been very well lately and they finally did scans and biopsies and now realise she has "Post Transplant Lymphoproliferative Disorder (PTLD)" which is a serious condition which can occur in people post transplant. She is currently undergoing chemotherapy treatment for this in hospital, so please keep her in your thoughts and pray for a positive outcome of this treatment. She has been through so much already - with the new lung already severely damaged from post op complications so needs immense strength to overcome this latest hurdle - but I am sure she can do it.
Berlin
Well, we got back from Berlin last night and had a great time. Apart from the weather - it rained, it snowed, hailed, sleet, wind ....and then some more rain. At some points I have never felt so cold - and I was wearing a waterproof ski jacket, gloves, hat and 2 pairs of socks haha! Not that we let the weather stop us and we had a fully packed 3 1/2 days of being out all day seeing the sights and sheltering in various coffee houses :-)
We started off with the main attractions - below is picture of Brandenburg Gate (previously the gate to the city). Just around the corner is the Reichstag building, which is the German parliament. It was damaged during the war but has since been reconstructed - they added a glass dome at the top, which you can go up to and walk up the spiralling ramp which gives views across Berlin. We tried to visit three times in total - the first twice, despite it being early and pouring with rain, the expected wait was at least 1 1/2 hours to get in and we weren't daft enough to stand outside for that long! Eventually we turned up at 8.30am on the last day and walked straight in - hardcore tourists that we are ;-)
The first afternoon we did the tour bus so that we at least got to see the main sights of Berlin from the dry and warmth of a bus. It was a hop on hop off but we just sat for the whole tour. Afterwards we visited the holocaust memorial (see pic below). It is a construction of concrete blocks which represent the lives lost. Once you walk in between the blocks they get taller and taller until you feel like you are in a maze. It had a very eerie atmosphere. There is a small museum underneath the site, which was interesting and horrifying at the same time. I am embarrassed to admit that I don't remember covering the Holocaust at school and much of what I read was an eye opener to say the least.
The next day we visited the DDR museum, which depicted life for Germans living under the DDR. Again very informative and one of those museums where you get to pick things up, open things and generally play. I think that part is for children but I am still a child at heart so I am allowed. We did of course visit the shops but didn't buy much -largely due to the exchange rate on the euro. I found the whole trip very expensive with entry to museums and my need for frequent coffee breaks ;-) The main shopping streets were home to lots of designer shops, which are not my scene. I like a bargain and there were none to be seen. We did stop for a coffee in KaDeWe, which is the Berlin equivalent of Harrods.
Berliner Dom is the Cathedral and was very impressive. You can climb the stairs to the top (all 298 of them!) and the view is impressive. It was a bit windy though...
No trip is complete without a visit to the Zoo and Berlin has a very large, and very old zoo. It is home to the famous Knut the polar bear, who was in the news over the controversy of hand rearing him after his mother rejected him.
Andrew and the penguins
On the last morning we had time to visit Checkpoint Charlie, the crossing point between East and West Berlin during the war. Finally the sun came out...
So all in all we had a lovely time - but to be honest I would never recommend going in March! We saw everything we wanted to see but we were rather cold and wet for a large proportion of the time - especially since Berlin is so massive that even using the brilliant public transport system, we still did a lot of walking! At least it is good training for me. It was just nice to get away for a few days and not think about work, the booklet, Team Jac or anything else for that matter. Sometimes you just need a change of scene and although we didn't relax in the physical sense, we were able to relax mentally which is more what I needed just now.
Now I am home it is back to reality. I was welcomed home to some dinner last night though, as mum and dad had brought Seb back and made us something to eat for arriving home. Seb was rather over excited by our return and surprisingly there was no cold shoulder treatment. He was more interested in the fluffy bunny toy I brought him back though :-)
I have a meeting about psychiatry training today, I am faciliating tomorrow at the university, I have finalised the booklet pdf and it is being sent to the printer asap and the CF Trust will be uploading the booklet immininently. It's all go, go, go....but I am ready to get back into the race.
Well, we got back from Berlin last night and had a great time. Apart from the weather - it rained, it snowed, hailed, sleet, wind ....and then some more rain. At some points I have never felt so cold - and I was wearing a waterproof ski jacket, gloves, hat and 2 pairs of socks haha! Not that we let the weather stop us and we had a fully packed 3 1/2 days of being out all day seeing the sights and sheltering in various coffee houses :-)
We started off with the main attractions - below is picture of Brandenburg Gate (previously the gate to the city). Just around the corner is the Reichstag building, which is the German parliament. It was damaged during the war but has since been reconstructed - they added a glass dome at the top, which you can go up to and walk up the spiralling ramp which gives views across Berlin. We tried to visit three times in total - the first twice, despite it being early and pouring with rain, the expected wait was at least 1 1/2 hours to get in and we weren't daft enough to stand outside for that long! Eventually we turned up at 8.30am on the last day and walked straight in - hardcore tourists that we are ;-)
Inside glass dome of Reighstag (it is open at the top, which is why I still have hat on!)
The first afternoon we did the tour bus so that we at least got to see the main sights of Berlin from the dry and warmth of a bus. It was a hop on hop off but we just sat for the whole tour. Afterwards we visited the holocaust memorial (see pic below). It is a construction of concrete blocks which represent the lives lost. Once you walk in between the blocks they get taller and taller until you feel like you are in a maze. It had a very eerie atmosphere. There is a small museum underneath the site, which was interesting and horrifying at the same time. I am embarrassed to admit that I don't remember covering the Holocaust at school and much of what I read was an eye opener to say the least.
The next day we visited the DDR museum, which depicted life for Germans living under the DDR. Again very informative and one of those museums where you get to pick things up, open things and generally play. I think that part is for children but I am still a child at heart so I am allowed. We did of course visit the shops but didn't buy much -largely due to the exchange rate on the euro. I found the whole trip very expensive with entry to museums and my need for frequent coffee breaks ;-) The main shopping streets were home to lots of designer shops, which are not my scene. I like a bargain and there were none to be seen. We did stop for a coffee in KaDeWe, which is the Berlin equivalent of Harrods.
Berliner Dom is the Cathedral and was very impressive. You can climb the stairs to the top (all 298 of them!) and the view is impressive. It was a bit windy though...
No trip is complete without a visit to the Zoo and Berlin has a very large, and very old zoo. It is home to the famous Knut the polar bear, who was in the news over the controversy of hand rearing him after his mother rejected him.Knut
Andrew and the penguins
On the last morning we had time to visit Checkpoint Charlie, the crossing point between East and West Berlin during the war. Finally the sun came out...
Inside Checkpoint Charlie museum - a tiny car used to smuggle people across the border!
So all in all we had a lovely time - but to be honest I would never recommend going in March! We saw everything we wanted to see but we were rather cold and wet for a large proportion of the time - especially since Berlin is so massive that even using the brilliant public transport system, we still did a lot of walking! At least it is good training for me. It was just nice to get away for a few days and not think about work, the booklet, Team Jac or anything else for that matter. Sometimes you just need a change of scene and although we didn't relax in the physical sense, we were able to relax mentally which is more what I needed just now.
Now I am home it is back to reality. I was welcomed home to some dinner last night though, as mum and dad had brought Seb back and made us something to eat for arriving home. Seb was rather over excited by our return and surprisingly there was no cold shoulder treatment. He was more interested in the fluffy bunny toy I brought him back though :-)
I have a meeting about psychiatry training today, I am faciliating tomorrow at the university, I have finalised the booklet pdf and it is being sent to the printer asap and the CF Trust will be uploading the booklet immininently. It's all go, go, go....but I am ready to get back into the race.
Thursday, March 19, 2009
Annual Review
I had my annual review at CF clinic on Tuesday - kind of like a yearly MOT. In some ways I didn't see the point because of the shiny new lungs but then I still do have CF and all it's other problems! My lung function was 90% (it always reads lower on their machine) and chest sounded great. I did well on my exercise test and didn't get out of breath at all! The main issues we chatted about where the problems swallowing and stomach issues. I am eating solid food again but still finding food sticking at least a few times a day, which is irritating to say the least. I had lost a bit more weight (I was 48.4kg the day of surgery and am now 43kg). Facially I don't look as if I have lost anything but I had to go and buy some kids jeans the other day because even my size 6 ones were loose. Now that is just wrong! However despite the eating problems I have also started to get reflux symptoms again...so there is no way the surgeon will want to slacken the wrap off. So I have been restarted on my anti-reflux drugs but at a lower dose than before - that seems to be helping with the reflux and I just hope with time I can eat a bit more normally again. It has just become a chore again which is frustrating. In the meantime the dietician is restarting some of my other supplements - bleugh - but better to nip it in the bud before I become a tiny rake again ;-)
We also discussed the sinus pain which is still pretty bad - and although I started on that other tablet I am still taking a lot of heavy duty pain killers every day. I am seeing the pain specialist next month again, but the CF consultant wondered if my sinuses had got worse because one of my pre transplant antibiotics had been stopped (azithromycin). This drug also has anti inflammatory properties and anecdotally appears to help quite a few CF people with sinus problems. It can also help with Cf related joint pain - which has also got worse since my transplant. So it might all be related. He is writing to Newcastle to see if they have any objections to be restarting this - so fingers crossed I get the go ahead and it actually helps!
Seb is acting very oddly this week (well more so than usual!) I had to go to CF clinic straight from work and since it was the annual review I didn't get home until 4pm - so he was on his own all day. He refused to greet me when I got in and was rather huffy all night. Then the next morning when I was leaving he hid behind the unit in the living room and refused to come out! I had to move all the furniture and physically lift him. Then yesterday when I went out he hid under the bed - so far under than neither me or Andrew could reach him, so we had to eventually lure him out with a sausage. Clearly he really objects to being left for more than a morning! Amusingly though when I got home yesterday there was no Seb at the front door. I came into the hallway - no Seb. I went upstairs and a very sleepy little dog was bumbling out of my bedroom. I must have left the door open and he had clearly had a lovely morning in my bed. I do mean actually in it - he had pulled back the covers to make sure he was well and truly comfortable. I made up for leaving him alone all day by taking him to the country park for the first time this year - it was such lovely weather today and so warm. He had a great time running around and sniffing and I felt much calmer and less tired spending some time in the sunshine.
The other thing I have been thinking about is that it is one year to the day that I had my false call (or pretend transplant as I like to call it). Click here for last years blog post ( 19th March 2008. ) That was one of the worst times in my life but it now seems like a distant memory and sometimes I think it didn't actually happen. It is so hard to believe the difference between that date last year and today. It is a million miles apart. It is good to look back from time to time and see how far I have come but even more important to keep looking forwards....
I had my annual review at CF clinic on Tuesday - kind of like a yearly MOT. In some ways I didn't see the point because of the shiny new lungs but then I still do have CF and all it's other problems! My lung function was 90% (it always reads lower on their machine) and chest sounded great. I did well on my exercise test and didn't get out of breath at all! The main issues we chatted about where the problems swallowing and stomach issues. I am eating solid food again but still finding food sticking at least a few times a day, which is irritating to say the least. I had lost a bit more weight (I was 48.4kg the day of surgery and am now 43kg). Facially I don't look as if I have lost anything but I had to go and buy some kids jeans the other day because even my size 6 ones were loose. Now that is just wrong! However despite the eating problems I have also started to get reflux symptoms again...so there is no way the surgeon will want to slacken the wrap off. So I have been restarted on my anti-reflux drugs but at a lower dose than before - that seems to be helping with the reflux and I just hope with time I can eat a bit more normally again. It has just become a chore again which is frustrating. In the meantime the dietician is restarting some of my other supplements - bleugh - but better to nip it in the bud before I become a tiny rake again ;-)
We also discussed the sinus pain which is still pretty bad - and although I started on that other tablet I am still taking a lot of heavy duty pain killers every day. I am seeing the pain specialist next month again, but the CF consultant wondered if my sinuses had got worse because one of my pre transplant antibiotics had been stopped (azithromycin). This drug also has anti inflammatory properties and anecdotally appears to help quite a few CF people with sinus problems. It can also help with Cf related joint pain - which has also got worse since my transplant. So it might all be related. He is writing to Newcastle to see if they have any objections to be restarting this - so fingers crossed I get the go ahead and it actually helps!
Seb is acting very oddly this week (well more so than usual!) I had to go to CF clinic straight from work and since it was the annual review I didn't get home until 4pm - so he was on his own all day. He refused to greet me when I got in and was rather huffy all night. Then the next morning when I was leaving he hid behind the unit in the living room and refused to come out! I had to move all the furniture and physically lift him. Then yesterday when I went out he hid under the bed - so far under than neither me or Andrew could reach him, so we had to eventually lure him out with a sausage. Clearly he really objects to being left for more than a morning! Amusingly though when I got home yesterday there was no Seb at the front door. I came into the hallway - no Seb. I went upstairs and a very sleepy little dog was bumbling out of my bedroom. I must have left the door open and he had clearly had a lovely morning in my bed. I do mean actually in it - he had pulled back the covers to make sure he was well and truly comfortable. I made up for leaving him alone all day by taking him to the country park for the first time this year - it was such lovely weather today and so warm. He had a great time running around and sniffing and I felt much calmer and less tired spending some time in the sunshine.
The other thing I have been thinking about is that it is one year to the day that I had my false call (or pretend transplant as I like to call it). Click here for last years blog post ( 19th March 2008. ) That was one of the worst times in my life but it now seems like a distant memory and sometimes I think it didn't actually happen. It is so hard to believe the difference between that date last year and today. It is a million miles apart. It is good to look back from time to time and see how far I have come but even more important to keep looking forwards....
Sunday, March 15, 2009
Here I Am
Thought I would do an update before the next week starts! It's been quite non stop for a few weeks and I am feeling really tired - although I think I am superwoman I have to remember I am not...and probably still need a bit more rest than the average person. I have possibly been doing just a bit too much of late but my mum likes to say 'a busy mind is a healthy mind'. Apparently.
I mentioned that last weekend I was speaking at Mass (the vigil and morning mass) in South Queensferry and the donations were so generous, totalling £700 for Team Jac. I was overwhelmed with the reaction and so delighted. After Mass on Sunday we headed up to Leven to have a look around at car parking, where the bus could park etc. There does seem to be quite a lot of car parking so fingers crossed that works out ok for people. I also spoke to someone in Leven bus station who gave me a contact to discuss using the bus station for parking our own buses. They didn't think it would be a problem so hopefully we will get that sorted out soon and I can give everyone some more information about the exact meeting point. I will be sending out teams imminently and hope to be quite organised by the end of this month. Caps are ordered and after a last minute run on grey (although this was rigged I think) I just decided to get half of each. Keep everyone happy I hope!! We were also going to walk up the only hill during the walk (Kincraig point, which is near the beginning) but when we got to Elie it was so windy we could hardly get out the car! So we just went to visit my friend in Fife instead :-) I hope we get nicer weather on the day...
I enjoyed work again this week and kept myself busy as usual. We did also have a team lunch on Tuesday which was nice as I got to know some of the nurses a bit better. I was also facilitating at the university on Friday, which again I enjoyed. The last time the scenario the students were looking at was acute confusion/dementia so I was familiar with the material but this week was digestion and absorption which I can hardly remember anything about, so had to do a lot more reading before the session. I only got the notes on Thursdsay night, because I had an appointment in Edinburgh for most of the day, so that was nice bedtime reading!
I also caught up with some other bits and pieces including making invites for Andrews Gran's 90th birthday - I made quite a mess and got glue all over the glass desk in the study. Mum and dad came on Friday and mum spent ages cleaning the desk for me, as well as helping me catch up with other chores as I was starting to feel a bit stressed with everything catching up. The CF booklet was meant to be uploaded to the CF Trust website last week but on proof reading they noticed quite a lot of errors - nothing major, just things like the wrong length of hyphen for different uses, which I didn't even know made a difference! So I have spent a lot of time fixing these problems but am now waiting to get some more information on the medical contributors and then it will be uploaded - yay! We can then go ahead with publishing 100 copies to distribute to CF teams in the UK. The printing costs are being covered by the Gary Torrance Memorial Fund. Gary was a very close friend of Emily's (who I am working on the booklet with) and he sadly lost his battle with CF a few years ago. It is very kind of the charity to support this venture but I am sure it will be worthwhile and prove helpful to many people with CF.
It is Andrews 30th birthday today so we had friends over last night for a race night (one of those DVDs you can buy with horse racing game). Some of them came to watch rugby during the day but I am not a rugby fan so I just pottered about getting dinner ready etc. We had a nice dinner and then played the racing game - I lost all my money so just as well it was fake! Quite a few people stayed over because his friends are all spread out now - coming from all parts of the country. It's nice that everyone makes the effort :-) Seb was getting a bit fed up because we had to use his tiny leather chair and his foot stool for sitting on - so he spent quite a bit of time padding up and down staring at people in the hope they would move. Not sure if I mentioned the tiny leather chair - dad sent it through for him! It was mum's chair when she was young and is basically a miniature leather arm chair. I must get a picture of him sitting in it. In his usual attention seeking behaviour he managed to get himself shut into the spare room twice during the evening (where he is not allowed) and had to be rescued.
Anyway my most exciting news is that we are going to Berlin on Saturday!! It is my present to Andrew for his 30th and it was a secret so I couldn't mention it until now. It will be our first holiday out with the UK since the transplant - we last went abroad in 2005 before I became more unwell. We are going for 4 nights so should have plenty time to take in the sights (we have never been before) and hopefully we will get some nice dry weather. Surprisingly I did manage to get travel insurance to cover my CF and transplant (and everything else) but it was really quite expensive and there was only one company who would even look at me! Costs should come down the further down the road I get and once I have been free of hospital admissions for a year. At least I got it though and we can go without worrying :-)
I will leave you with a picture of Andrew's home made birthday cake. I would never be good at cake decorating but the cake tasted nice which is the important part!!
Thought I would do an update before the next week starts! It's been quite non stop for a few weeks and I am feeling really tired - although I think I am superwoman I have to remember I am not...and probably still need a bit more rest than the average person. I have possibly been doing just a bit too much of late but my mum likes to say 'a busy mind is a healthy mind'. Apparently.
I mentioned that last weekend I was speaking at Mass (the vigil and morning mass) in South Queensferry and the donations were so generous, totalling £700 for Team Jac. I was overwhelmed with the reaction and so delighted. After Mass on Sunday we headed up to Leven to have a look around at car parking, where the bus could park etc. There does seem to be quite a lot of car parking so fingers crossed that works out ok for people. I also spoke to someone in Leven bus station who gave me a contact to discuss using the bus station for parking our own buses. They didn't think it would be a problem so hopefully we will get that sorted out soon and I can give everyone some more information about the exact meeting point. I will be sending out teams imminently and hope to be quite organised by the end of this month. Caps are ordered and after a last minute run on grey (although this was rigged I think) I just decided to get half of each. Keep everyone happy I hope!! We were also going to walk up the only hill during the walk (Kincraig point, which is near the beginning) but when we got to Elie it was so windy we could hardly get out the car! So we just went to visit my friend in Fife instead :-) I hope we get nicer weather on the day...
I enjoyed work again this week and kept myself busy as usual. We did also have a team lunch on Tuesday which was nice as I got to know some of the nurses a bit better. I was also facilitating at the university on Friday, which again I enjoyed. The last time the scenario the students were looking at was acute confusion/dementia so I was familiar with the material but this week was digestion and absorption which I can hardly remember anything about, so had to do a lot more reading before the session. I only got the notes on Thursdsay night, because I had an appointment in Edinburgh for most of the day, so that was nice bedtime reading!
I also caught up with some other bits and pieces including making invites for Andrews Gran's 90th birthday - I made quite a mess and got glue all over the glass desk in the study. Mum and dad came on Friday and mum spent ages cleaning the desk for me, as well as helping me catch up with other chores as I was starting to feel a bit stressed with everything catching up. The CF booklet was meant to be uploaded to the CF Trust website last week but on proof reading they noticed quite a lot of errors - nothing major, just things like the wrong length of hyphen for different uses, which I didn't even know made a difference! So I have spent a lot of time fixing these problems but am now waiting to get some more information on the medical contributors and then it will be uploaded - yay! We can then go ahead with publishing 100 copies to distribute to CF teams in the UK. The printing costs are being covered by the Gary Torrance Memorial Fund. Gary was a very close friend of Emily's (who I am working on the booklet with) and he sadly lost his battle with CF a few years ago. It is very kind of the charity to support this venture but I am sure it will be worthwhile and prove helpful to many people with CF.
It is Andrews 30th birthday today so we had friends over last night for a race night (one of those DVDs you can buy with horse racing game). Some of them came to watch rugby during the day but I am not a rugby fan so I just pottered about getting dinner ready etc. We had a nice dinner and then played the racing game - I lost all my money so just as well it was fake! Quite a few people stayed over because his friends are all spread out now - coming from all parts of the country. It's nice that everyone makes the effort :-) Seb was getting a bit fed up because we had to use his tiny leather chair and his foot stool for sitting on - so he spent quite a bit of time padding up and down staring at people in the hope they would move. Not sure if I mentioned the tiny leather chair - dad sent it through for him! It was mum's chair when she was young and is basically a miniature leather arm chair. I must get a picture of him sitting in it. In his usual attention seeking behaviour he managed to get himself shut into the spare room twice during the evening (where he is not allowed) and had to be rescued.
Anyway my most exciting news is that we are going to Berlin on Saturday!! It is my present to Andrew for his 30th and it was a secret so I couldn't mention it until now. It will be our first holiday out with the UK since the transplant - we last went abroad in 2005 before I became more unwell. We are going for 4 nights so should have plenty time to take in the sights (we have never been before) and hopefully we will get some nice dry weather. Surprisingly I did manage to get travel insurance to cover my CF and transplant (and everything else) but it was really quite expensive and there was only one company who would even look at me! Costs should come down the further down the road I get and once I have been free of hospital admissions for a year. At least I got it though and we can go without worrying :-)
I will leave you with a picture of Andrew's home made birthday cake. I would never be good at cake decorating but the cake tasted nice which is the important part!!
Thursday, March 12, 2009
Manic
This is to say I am still alive but having a manic week. It's Andrews 30th at the weekend so organising things for that, finalising the booklet for the CF Trust to upload and working tomorrow facilitating. The jump in the Team Jac fundraising total is largely due to the £700 from the appeal I did at church last week :-) I will update more fully when I get the chance!!
This is to say I am still alive but having a manic week. It's Andrews 30th at the weekend so organising things for that, finalising the booklet for the CF Trust to upload and working tomorrow facilitating. The jump in the Team Jac fundraising total is largely due to the £700 from the appeal I did at church last week :-) I will update more fully when I get the chance!!
Friday, March 06, 2009
Another good week..
I have enjoyed another week (or 2 mornings rather!) at work and it is really nice to get back into some sort of routine. Makes me feel more normal (if I could ever be described as normal). Only thing is that I feel frustrated by is not having more hours at work because it is hard to get all I need done in the time I have. On a Tuesday morning there is the team meeting and then I usually do a home visit and anything that needs doing in the day hospital and on Wednesday morning I have clinic. So it doesn't leave much time for dictation and tying up loose ends etc. Who ever thought I would complain about not having enough time at work?!
I have been trying to take Seb for longer walks this week in preparation for the walk but must admit to being a bit worried about managing the 10 miles. I would like to have started walking more at an earlier stage but couldn't because of my foot.....but I am sure the adrenaline on the day will see me through :-) The foot has been better with these insoles but does still get quite achy at times. It has now started aching when I am driving when in that start stop traffic. Perhaps I need a chauffeur...
I have been feeling very busy of late so have made a conscious effort to include some relaxation time, which has largely been spent making cards. I used to make hand made cards quite often but while I was waiting for transplant, although having the time, I just couldn't be bothered. I have got back into it lately and find it a good distraction. I am pretty messy though and end up with glue everywhere. I also never measure anything - just stick and hope for the best. I get that from my dad - he is very good at DIY but I can't say a lot of measuring or preparation work goes on. Just hit it with a hammer and see what happens.... ;-)
This weekend I am going to St. Margaret's church in South Queensferry to speak about Team Jac. The priest there is a good friend of my friends mum, so at the time of my transplant his parish were praying for me. He has now very generously invited me to speak at the vigil and morning Mass this weekend and his parish will offer donations towards the walk. I think I better write down what I am going to say or I could end up going on and on and on! After the Mass on Sunday we are hoping to drive up to Leven to further investigate car parking etc for the walk, and also to attempt part of the walk called Kincraig Point. I am led to believe this is the only hill during the walk, so we are going to check it out and make sure it's suitable for everyone. Basically if I don't think it's that bad, then anyone will be able to do it. I hate hills!!
Oh, and it looks like purple is winning for the Team Jac hats....if you haven't voted yet just click on the poll on the top right corner!
I have enjoyed another week (or 2 mornings rather!) at work and it is really nice to get back into some sort of routine. Makes me feel more normal (if I could ever be described as normal). Only thing is that I feel frustrated by is not having more hours at work because it is hard to get all I need done in the time I have. On a Tuesday morning there is the team meeting and then I usually do a home visit and anything that needs doing in the day hospital and on Wednesday morning I have clinic. So it doesn't leave much time for dictation and tying up loose ends etc. Who ever thought I would complain about not having enough time at work?!
I have been trying to take Seb for longer walks this week in preparation for the walk but must admit to being a bit worried about managing the 10 miles. I would like to have started walking more at an earlier stage but couldn't because of my foot.....but I am sure the adrenaline on the day will see me through :-) The foot has been better with these insoles but does still get quite achy at times. It has now started aching when I am driving when in that start stop traffic. Perhaps I need a chauffeur...
I have been feeling very busy of late so have made a conscious effort to include some relaxation time, which has largely been spent making cards. I used to make hand made cards quite often but while I was waiting for transplant, although having the time, I just couldn't be bothered. I have got back into it lately and find it a good distraction. I am pretty messy though and end up with glue everywhere. I also never measure anything - just stick and hope for the best. I get that from my dad - he is very good at DIY but I can't say a lot of measuring or preparation work goes on. Just hit it with a hammer and see what happens.... ;-)
This weekend I am going to St. Margaret's church in South Queensferry to speak about Team Jac. The priest there is a good friend of my friends mum, so at the time of my transplant his parish were praying for me. He has now very generously invited me to speak at the vigil and morning Mass this weekend and his parish will offer donations towards the walk. I think I better write down what I am going to say or I could end up going on and on and on! After the Mass on Sunday we are hoping to drive up to Leven to further investigate car parking etc for the walk, and also to attempt part of the walk called Kincraig Point. I am led to believe this is the only hill during the walk, so we are going to check it out and make sure it's suitable for everyone. Basically if I don't think it's that bad, then anyone will be able to do it. I hate hills!!
Oh, and it looks like purple is winning for the Team Jac hats....if you haven't voted yet just click on the poll on the top right corner!
Monday, March 02, 2009
It is Venice 1947 and there is a gathering at the house of Romeo Bechini and his widowed sister Alessandra Macaroni....
Confused? We hosted a murder mystery at the weekend and although it took me a while to work out how to actually play the game, we soon got into the swing of things and had a great night! I insisted on trying to speak with an Italian accent all night and be as dramatic as possible at all times...I did not sound Italian but it was foreign enough. Andrew spent most of the evening saying 'I know nothing' (said with accent). I would post some photos but my friends may actually kill me (check facebook though haha). Seb wore his bowtie since we were having guests and embarrassingly was later found lying in the dark on the bathroom mat (this is his attention seeking behaviour) - it was rather disconcerting for the person trying to use the bathroom at the time.
I am still recovering from the late night - I was in bed around midnight but then had a hypo (low blood sugars) at 2am so was up bumbling about in a confused manner trying to find a packet of dextrose. I have bought 3 packets today - to leave in every room! Today is not a working day but I was up early because I was doing some PBL facilitating at the university. Some of you will remember me doing the course before Christmas, so this was the first time I had done it for real. I am signed up as a 'casual facilitator' so they can ask me at short notice to fill in for people, so I only agreed to this on Friday. I don't have to accept but I wanted to get some experience in this so was glad to take the opportunity. It was really strange being on the other side - I have done so much PBL as a student but never from this side. For those who have know idea what I am talking about...PBL (problem based learning) is the way most medical schools run now. Students meet in small groups, discuss scenarios presented to them and decide what learning objectives they need to meet to understand the scenario. It's all about self directed learning. My job is to make sure they don't go off track and that they assimilate the correct information. I really enjoyed it so would be happy to take on more sessions in the future.
I also have some feedback regarding staff grade jobs. There may be some flexibility in the experience needed part, if I am able to show I have the same competencies as someone who has worked full time. The job I was looking at has not been advertised yet but I have also heard of some other posts available, so things are hopefully looking up. I must admit it is rather stressful just being back and already thinking about my next move....I would rather have had time to just settle in and enjoy being back without feeling this pressure of uncertainty. However, at least I am back, I am coping well and I am enjoying it - I think these are the most important things at the moment.
Team Jac is coming along well and I am organising everyone into smaller teams - we cannot walk en masse so smaller groups will need to leave 10 mins apart to spread out the walkers!! I am also about to order my team jac caps but am having problems deciding on colour. I am avoiding all football colours haha and I'm trying to suit men and woman. I ordered samples of purple and charcoal but I get mixed opinions on them both. Purple is brighter and more fun....but would anyone use the cap again(they are good quality so don't want to waste money) and would men wear the purple (it is quite bright)? The grey was more mid grey than charcoal - better for men and more wearable but is it too dull or just more classy? The caps will say Team Jac on the front (white on the purple, or black on the grey). Another option is to get half of each colour and let people choose but maybe it is better to have all one colour. Anyway I have added a poll on the side bar - please choose and answer and help me decide!!
I have been a busy bee again over the past week or so and am really in need of a wee rest. Last week there was a lot of preparation for the murder mystery, meetings about jobs and I also went out for dinner with friends from my old place of work. That was lovely and great to catch up! I managed to buy another pair of shoes when I was in Tesco doing food shopping. I don't know how it happened. I don't think supermarkets should be allowed to sell clothing and shoes. It's just reckless really...
Anyway, it is now dinner time and I am attempting some roast ham so better go check on it. I have been managing some solid food now - things like chicken if I chew well. Sometimes things are still sticking but it is getting better so hopefully I will be back to normal (or near normal) soon. I do see large juicy steaks when I close my eyes....is this normal?!
Confused? We hosted a murder mystery at the weekend and although it took me a while to work out how to actually play the game, we soon got into the swing of things and had a great night! I insisted on trying to speak with an Italian accent all night and be as dramatic as possible at all times...I did not sound Italian but it was foreign enough. Andrew spent most of the evening saying 'I know nothing' (said with accent). I would post some photos but my friends may actually kill me (check facebook though haha). Seb wore his bowtie since we were having guests and embarrassingly was later found lying in the dark on the bathroom mat (this is his attention seeking behaviour) - it was rather disconcerting for the person trying to use the bathroom at the time.
I am still recovering from the late night - I was in bed around midnight but then had a hypo (low blood sugars) at 2am so was up bumbling about in a confused manner trying to find a packet of dextrose. I have bought 3 packets today - to leave in every room! Today is not a working day but I was up early because I was doing some PBL facilitating at the university. Some of you will remember me doing the course before Christmas, so this was the first time I had done it for real. I am signed up as a 'casual facilitator' so they can ask me at short notice to fill in for people, so I only agreed to this on Friday. I don't have to accept but I wanted to get some experience in this so was glad to take the opportunity. It was really strange being on the other side - I have done so much PBL as a student but never from this side. For those who have know idea what I am talking about...PBL (problem based learning) is the way most medical schools run now. Students meet in small groups, discuss scenarios presented to them and decide what learning objectives they need to meet to understand the scenario. It's all about self directed learning. My job is to make sure they don't go off track and that they assimilate the correct information. I really enjoyed it so would be happy to take on more sessions in the future.
I also have some feedback regarding staff grade jobs. There may be some flexibility in the experience needed part, if I am able to show I have the same competencies as someone who has worked full time. The job I was looking at has not been advertised yet but I have also heard of some other posts available, so things are hopefully looking up. I must admit it is rather stressful just being back and already thinking about my next move....I would rather have had time to just settle in and enjoy being back without feeling this pressure of uncertainty. However, at least I am back, I am coping well and I am enjoying it - I think these are the most important things at the moment.
Team Jac is coming along well and I am organising everyone into smaller teams - we cannot walk en masse so smaller groups will need to leave 10 mins apart to spread out the walkers!! I am also about to order my team jac caps but am having problems deciding on colour. I am avoiding all football colours haha and I'm trying to suit men and woman. I ordered samples of purple and charcoal but I get mixed opinions on them both. Purple is brighter and more fun....but would anyone use the cap again(they are good quality so don't want to waste money) and would men wear the purple (it is quite bright)? The grey was more mid grey than charcoal - better for men and more wearable but is it too dull or just more classy? The caps will say Team Jac on the front (white on the purple, or black on the grey). Another option is to get half of each colour and let people choose but maybe it is better to have all one colour. Anyway I have added a poll on the side bar - please choose and answer and help me decide!!
I have been a busy bee again over the past week or so and am really in need of a wee rest. Last week there was a lot of preparation for the murder mystery, meetings about jobs and I also went out for dinner with friends from my old place of work. That was lovely and great to catch up! I managed to buy another pair of shoes when I was in Tesco doing food shopping. I don't know how it happened. I don't think supermarkets should be allowed to sell clothing and shoes. It's just reckless really...
Anyway, it is now dinner time and I am attempting some roast ham so better go check on it. I have been managing some solid food now - things like chicken if I chew well. Sometimes things are still sticking but it is getting better so hopefully I will be back to normal (or near normal) soon. I do see large juicy steaks when I close my eyes....is this normal?!
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