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...