My Lungs are Three Today!

Three years today that I received that call 'Jacqueline, we think we have some lungs for you' and three years today that I was given my 2nd chance at life.   It's hard to believe that so much time has passed, but then looking back, I have managed to fit rather a lot into that time.  It has been an amazing three years and long may it continue.

I have several friends waiting on transplant at the moment (Victoria T, Kirstie, Julie and Chantelle to name a few) and reading their blogs and facebook posts reminds me of that long and difficult wait.  Sometimes it is hard to remember that I was that ill before - that life hung in the balance so precariously.  The oxygen, wheelchair, constant IV's, not being able to wash my hair, or tie my own shoe laces or speak in full sentences - that seems like it happened to someone else entirely.   I have moments of vividly remembering how this felt and to be honest am glad that, for the most part, it can be difficult to conjure up those feelings.  I am on a new path now, and although I am not quite sure where it is taking me, or where I might stop off on the way, I am certainly doing my best to enjoy the journey.   I love being allowed to be 'Jacqueline' again without the constraints of ill health.  I have also met so many new friends through this transplant journey and also been able to enjoy so much more with my old buddies.   My family of course have been there through it all and continue to be my most avid supporters :-)

Of course, I also remember today my donor and her family.  My azalea has survived yet another harsh winter and the little buds are ready to flower, keeping her memory very much alive.

I will leave you with the message on Anne and John's card, which sums up how we should all approach life!

Dance like no one is watching

Sing like no one is listening
Love like you'll never get hurt

Live like it's heaven on earth

I hope that all my friends waiting get their call and the opportunity to live life to the full once more.

The Sun is Shining!

What a lovely day it is - I am sitting just outside the patio doors having dragged a wee chair outside. We still need to build a new patio but am quite happy sitting here admiring the rest of the garden and enjoying the sun. I did of course have to rescue a shoe about 5 minutes ago when Seb ran off with it :-)

The rest of last week was fairly busy but I did have a nice birthday week (we operate in birthday weeks in this house). On Friday my cousin Sarah came through for a long overdue catch up and we had a lovely day - cake, then lunch, walking Seb then more cake. On Sunday I had mum and dad over for a birthday dinner for mum - it was her birthday last thursday but I was working all day so we didn't have much time to really celebrate. I did make a cake, although my decorating skills need some practice (!) and we had a very nice meal, if I do say so myself!

Tomorrow is however a sad day. My mum's aunty Agnes passed away on Sunday night, so her funeral is tomorrow. She was a character indeed - full of energy, laughter and stories that took on the White tendency to exaggeration and were hilariously funny (whether she meant them to be or not). I think we could say she was very much the matriarch of the family and will be missed by so many people. Lots of love to her close family at this time xxx

Birthday Girl had a fab day!

It was my birthday yesterday :-)   I had a lovely day and was thoroughly spoiled.  I started the morning with some present opening, while sipping my cappuccino and eating pan au chocolat.  Andrew had got me a new mobile phone which is so cute and tiny!  He also got me a Fossil purse which has little bird cages on it and matches a handbag I have  - I was very impressed that he has gone and picked this himself :-)  I got lots of really cute presents from friends and lovely gifts from Anne and John - my favourite of which was an owl cushion lol.   I then went into work for the morning but half my patients had cancelled so it was a quiet morning, which was nice.  My lovely secretary had a wee pressie for me and 2 big lion bars haha!  I then headed home at lunch time and mum, dad and uncle Hugh came through.  We grabbed a quick lunch and got the train into town for some birthday shopping,  I can be a very fast shopper (especially when someone else is buying!) so we flew round debenhams and I got some lovely things for my holiday next month and a cute dress for my friends wedding.   We then met Andrew after work and had some dinner in town.  I was shattered last night but so happy to celebrate another birthday.   They seem to take on more of a significance after transplant because you feel each one is another gift.

I am feeling a bit better now and my cough doesn't seem as bad.  I (sort of) rested at the weekend if you count doing nice things.  I had my friend over on Friday for coffee which was lovely and then me and Andrew Claire and Giueseppe in town on Saturday for lunch.  It was a nice lunch in November cafe, apart from the fire alarm going off during coffee and we had to pile down three flights of stairs to get out the building.  We got a free coffee when we went back up though - probably because they were so grateful we came back to pay the bill!

Sunday was a lovely day - it was so warm!  I spent half the day in the garden, weeding and tidying the rockery, and the other half making a clock for the kitchen.  I have been looking for a clock for ages and had this idea in my head about it being a duck egg blue to match the tiles and maybe having some little birds on it.  I then had the idea I would try and make one using a round canvas and attaching a clock mechanism I bought.
I am quite pleased with the final thing - so far it has also kept time which is quite important :-)

Seb has been his usual self and there have been a couple of 'incidents' over the past week.   When we go out I had started leaving the study door open as he has a little bed in there, so I thought it would be nice for him to have more space.  The other day we went out and could hear Seb barking.  Andrew then went back in to get a jacket and as soon as he opened the door, there was silence.  Seb was to be found on the window sill in the study, completely still and trying not to be seen.  The only way he could have got up there would be to jump on the piano stool, climb onto the piano, then onto the desk, walk all the way round and then get onto the window sill.  The speed with which he had completed this would suggest it might me a regular activity...   Andrew took him back to the hall and we went out.  We came back and Seb was at the door, looking all innocent, until I went into the bathroom and saw all these muddy paw prints IN the shower and then a trail back out the door.  He clearly was bored while we were away and had gone exploring in the only room where the door wasn't closed!  His final nonsense was at the weekend when I had left a plastic hanging basket lying on the grass, having just emptied it.  I then turned round and Seb was sitting with the basket attached to his side, with one leg through one loop and his entire body through another.  You really can't leave him alone for two minutes.

Mother's Day

I have had my mum here today for Mother's Day (and my dad of course as he obviously likes to be involved). We went out for dinner and took Andrew's gran out too, as Anne and John are on holiday just now. Mum was more excited about the macaroon I made her than anything else. She was getting wired into it despite the fact I was heating soup for lunch when she arrived. I don't think it will last long :-) I only ever make macaroon for mum as it's rather fiddly - in fact I broke the wooden spoon trying to mix the fondant for the middle this time as you have to make it very stiff. My mum is worth the effort though :-)

I have been feeling a bit up and down over the week. I still have this crackly cough which is really annoying me, but the doctor is still pretty sure it's just remnants of viral infection. Hopefully it will clear up over the next week - my throat and sniffles are better though :-)  It's been a tiring week at work because I was a bit under the weather and this week I also have an extra half day training session on Tuesday. I have taken the following monday afternoon off though as it's my birthday! There have also been applicants for the staff grade job I am helping to cover at the moment, so hopefully by the summer the pressure of doing the extra cover will be eased. I will probably complain of being bored then ;-)

I bought Seb a new toy during the week - it's called Crazy Squirrel. It looked like road kill so I knew he would like it.  He likes to squeak it and drag it around the floor and then once he has conquered the beast, it looks rather fetching as a trophy fur...

Sniffle

Having a quiet weekend as I am full of the cold at the moment.  Started with a tickly cough last week and now sore throat, sniffles and it's sore to cough.  I hate how being immunosuppressed makes everything last twice as long!   Ah well, still nothing compared to pre transplant chest infections!

To cheer me up I have booked a holiday for the end of May.  We had a week off but I hadn't got round to sorting anything, so yesterday I just bit the bullet.  We are going to Sorrento, Italy for 7 days - I can't wait!!  People say it's beautiful and it's also a great location for visiting nearby places such as Capri and Pompei.  I need to look for travel insurance next but it should be easier this year since it's Europe :-)

It has been lovely sunshine the past few days and it does make you feel so much brighter.  Seb is solar powered so he has been full of beans and nonsense.  I took him for a walk by the river yesterday and he nearly knocked a cyclist off his bike.  The guy was cycling up behind us when Seb turned round, thought he recognised the guy, and ran straight at him!  I was very embarrassed but thankfully the guy was amused and even stopped to give Seb a wee pat.   He has also been spending a lot more time in the garden and has now discovered a small hole in one of the fence panels.  It happened during the build and he hadn't really noticed it until now.  Today I spotted him with one eye at the hole peering into the neighbours garden.  Then the paw came out and he stuck this in the hole, pulling some more wood of the edges.  He then tried to mash his head through but the hole was too small, so he started again with the paw.  I have brought him into the house now but will need to do something about the hole before he digs himself out...

Dad finally got the Butterfly Kisses painting through to the Butterfly Trust - on the roof rack!  It was too wide to fit in anyone's car, which will teach me not to paint such giant pictures.   I think I need to work on some smaller ones.  I have been making quite a few cards recently as well - some based on print outs of my paintings, which worked quite well.  I will make some for mums auction later in the year, which will also be for the Butterfly Trust.

Hopefully this will be a quiet week at work and I will be back to full speed soon!  For now I am just going to lie here in the extension and enjoy the sun coming through the patio doors :-)

Kirsty singing My Hero ....

As mentioned in my last post, Kirsty has recorded the song My Hero - which she sang at the ball, dedicated to her donor.  This is the link to her singing the song :-)   Anyone who would like a copy (£3.49) let me know - all money for LLTGL and The CF Trust.

End of a hard week..

Thank goodness it's Friday - this week has felt particularly long!   It was busy at work and I had a few very stressful days.  It's mostly due to lack of resources, long waiting lists, people's misconception that I can somehow control these lists and also thinking I have a magic tablet I have not been giving them!  Psychiatry is such an inexact science and we have a limited armoury with which to treat people.  I understand the frustration, and I understand the relatives frustrations...but I am doing my best!  The latter part of the week was a bit better though, which helped to redress the balance.  I think it was also because I have been feeling really headachey this week - more like migraine type headaches with that sicky feeling.  It's hard to concentrate when you feel like that.  However it looks like a lovely day today and I can have a chilled weekend so will be back to normal for next week :-)

I want to tell you about two charity things that you might be interested in:

1.  My best friend Claire, her sister Jennifer and their mum Margaret are taking part in a 5k for the charity Bosom Buds.  This is a local charity, founded by breast cancer sufferers.  They support the local cancer unit but one of their main roles is providing real hair wigs for those undergoing chemo therapy for breast cancer.  I think this is such an important aspect to care and a great wee charity!  You can sponsor their walk HERE.

2. My friend, and fellow Team Glasgow member, Kirsty Geddes has had the opportunity to record the single My Hero.  Kirsty sang this at our Masquerade Ball in memory of her donor - the lyrics 'there goes my hero...he's ordinary' are so fitting for all those people who have donated.  Ordinary people doing an extraordinary thing.  The single costs £3.49 (inc postage) and is well worth it - she is an amazing girl, with an amazing voice.  All proceeds will be given to Live Life Then Give Life and The CF Trust.   If you would like a copy, let me know and I will pass on the orders :-)   You can hear the single on facebook but I will check if there is another way of listening to the song.

Catch Up!

With the 30 day challenge I didn't really post anything about what I have been up to!

The CF and Body Image booklets are about to undergo a 1500 copy print run, with copies then being distributed to CF units in the UK.  I think there has been some early interest from the units so it looks very encouraging.  I will still like to do some formal research around the eating disorder and CF topic but have very little time at work to fit in research.  Hopefully once I no longer have to cover the other resource centre, I will be able to free up a little time and look into this more.

I have also been asked to speak to 4th years at George Eliot private school in Edinburgh about organ donation.  Apparently the government has been encouraging schools over the past few years to include this in the curriculum.  I don't think it has been widely taken on, but there are specific resources designed for this purpose and George Eliot have been running it for a few years now.  I am really just going to talk about my experiences to give organ donation a human face - should be interesting!

We have still been working away on house things, slowly but surely.   We have finished painting the living room and finally that room is complete.  We are still hardly sitting in it though because using the extension all the time!  It does save tidying the rest of the house though...

I will leave you with some amusing Seb photos, to demonstrate that he has been up to his usual carry on:

Dragged Andrew's bag from the hallway in bid for attention.  When he was ignored, just lay down on rug as if just home from a hard day at the office

He was in that basket and I told him to go to his bed in the hall - where he stays when I am at work.  I thought he had gone and then realised he had just climbed into the DVD unit instead!

Ordered a new dining table - that's it in the box ready to be built.  Seb thinks it's a platform for him to view the garden from.

Next, Seb inspects the new chairs.  He doesn't look too sure though...

I was trying to take all the pieces out the box - Seb sees this as an invite to get in the box

Andrew trying to screw the table top in place - Seb getting in the way and licking his nose!

Seb looks pleased with himself.  Andrew - not so much!

This was really weird story.  Seb had eaten most of his dinner when he lifted one piece of dry dog food and brought it into the middle of the room, where he carefully placed it down.  He then turned round and saw Andrew's bag propped against that chair.  So with one deft paw swipe, he pushed the bag over and then carefully placed the small piece of dry dog food on top (tiny dot on left front corner).   He then returned to his bowl and ate the rest of his dinner and just left that one piece sitting on the bag all night.  Now, tell me that's not really weird??!

 Butterfly Kisses

Bidding has now ended on the Butterfly Kisses painting with the winning bid at £110. The winner is donating the painting to the Butterfly Trust for displaying in their Edinburgh premises - in memory of my sister Frances Ann. Rather fitting, especially as painting is based on the trust's ethos :-)

Painting Auction

Just to remind everyone that bidding closes at 12noon this Sunday (13th) for the Butterfly Kisses painting

Current highest bid is £110 Please let me know if you want to bid before the closing time - email me at weejac.art@gmail.com with bid.  If I get two bids the same, I will email both people to offer them a chance to outbid.  I will allow 24hrs from closing on Sunday for a response from both people since I don't expect people sitting at their email in anticipation!


If anyone missed this post first time round - I am auctioning this painting (by me) in aid of the Butterfly Trust, a charity which supports people with CF in Scotland.

Day 30: Picture of Me

Well this is the last day of the photo challenge and today was simply just a picture of me. I was going to use one where I was all dolled up, maybe even from the recent photo shoot, but then decided that this one probably reflects my personality more than others. That in itself is a worry! This was taken on Christmas morning last year, and yes, that is my pyjamas I am wearing with the panda hat. My father in law still doesn't believe I wear this hat to work and patients have seen me with it on. I think that is totally acceptable?

So, a picture of me - what does this tell you? If I were to describe myself I would use the following words: rather daft, easily amused, kind, enthusiastic, impatient, sometimes quick to anger but equally as quick to get over it, calm in a crisis but can look flustered, especially if drinking double espressos, known to laugh inappropriately during meetings and distract other people, always give 100% to everything I do, can be a drama queen when I feel like it but when things really are bad, tend to keep it to myself. I know my own mind but try to see things from other people's view point - although tend to still believe I am, of course, correct :-) I am very small. I like to feel special (but not in a 'just been let out for the day' way). I like to just be myself :-)

Day 29: A picture that can always make you smile

This is Seb at 5 weeks old. We went to visit the breeder to choose a puppy - the rest of the litter were all brown, there was one parti colour female... and then Seb. He was sitting in the middle of the litter allowing another puppy to chew on his ear. He had the grumpiest little face but once I had a wee hug it was puppy love!

Day 28: A picture of you last year and today with a description of how you've changed

The first picture was taken in April last year when I was in Florida and the picture on the right was at the beginning of this year. Physically I haven't changed much - if this was a just after transplant vs 1 year later photo there would be a noticeable reduction in steroid induced hamster chops! I think there has still been some cheek bone return in the past year. My hair is longer and almost back to pre transplant length. About a year after my transplant my hair started falling out - it was so thin and fragile and all I could do was keep getting it cut until it started growing in thicker again. I would say it's now back to normal :-)

At work I think I have become more confident. Last year I had only been in the staff grade post for 6 months and it was a steep learning curve, having been out of general adult psychiatry for a while. I think my knowledge has increased significantly, as well as developing the way I undertake consultations, react to situations and create a rapport with patients.

Emotionally, the further you get from transplant, the stronger you feel. It starts to seem as if being ill was something in the far and distant past - sometimes feeling like it didn't really happen to me at all. I feel more and more like the 'old Jacqueline' who was happy, carefree and full of nonsense.

In a practical sense I am more settled. The house is really coming together and we have been able to carry out most of our long term plans within the last year. Plans that were always waiting for 'when I am well'. I had my own PBL groups a few times last year, which I really enjoyed. I also became part of Team Glasgow - pouring energy into our ball and this year a Halloween party is on the agenda :-) Through this I have also made two fantastic friends in Victoria and Kirsty.

Overall throughout the past year, I have had that feeling that 'Life is Good!' Can't ask for more than that.

Day 27: A picture of something you are afraid of

The big transplant 'R' - Rejection! It looks rather pretty in this slide but not so pretty in real life. Acute rejection I can deal with - I have had that and a few days of IV steroids soon sorted that. Chronic rejection however is one of my biggest fears. It usually has a slower onset, scarring the lungs and reducing their function - and there are no cures. When I got my transplant I said 'oh if I just get even a year it would be great' then I want 3 years, and 5 years and so on! I don't spend a lot of time thinking about the future and usually work on the most positive and optimistic outcomes. However when I sometimes get a niggle, or a feeling of being breathless or a cough, then my heart sinks and thoughts of rejection (and other complications) rush to the fore. Having been given a taste of this new life, I am not in any rush to return to the restrictions of the past, although I know I would still cope if I did. No one knows what the future holds - post transplant or not - so it does give me that nudge every so often to re-evaluate the important things in life and to remember that, for everyone, it should be about enjoying the here and now, the small moments that make you smile and accepting and moving on from the ones that make you cry. Life is here to be lived and I am doing my hardest to make each moment count.

Day 26: A picture of something that means a lot to you This is 'wee red man' and 'donkey'. You can see how original I am with naming things - it's actually a surprise Seb isn't called 'dog'. Wee red man belonged to my older sister Claire, and my mum gave it to me as a keepsake when I was a child. It developed into a lucky charm of sorts for me - gave me the feeling I had someone to watch over me. I had it with me during every hospital admission, every school exam, university exams, interviews and in my bag at my wedding!    When Frances Ann was really ill during my final year of uni, I gave her the wee red man when she was in hospital - I didn't really know what else to do. She did somehow recover from that horrendous episode and when she got out of hospital she returned the wee red man, with a note saying 'I am returning the wee red man so he can help get you through your final exams, thank you for the loan. This wee donkey wants to help you too. I hope he can!" Donkey of course, was duly added to the lucky charm collection!    Both donkey and wee red man were packed in my 'transplant case' along with more obvious essentials to take when the call came. Underwear - check, toothbrush - check, pyjamas - check, wee red man and donkey - check! I am not really a superstitious person and would walk under a ladder or open an umbrella in the house. These two things mean a lot to me, not because I think they are somehow magical but because they remind me that I'm never alone.

Day 25: A picture of your happiest memory

Our wedding, August 20th 2004.  The beginning of a journey with twists and turns, highs and lows but always side by side.

Day 24: A picture of you with a family member

This is me and my Uncle Hugh. I can't really say much about how mental he really is because I think some of his parishioners read my blog. Oops too late ;-) I am very close to my Uncle Hugh and very much respect his thoughts and opinion. He is also great fun and is often at the centre of family gatherings and has worked hard to create a lively community within his three Parishes. I do worry he might become even more eccentric as he gets older and he likes to tell me that I will have to look after him at this stage. I have of course assured him there is no chance of this happening but that I will visit him in the nursing home on high days and holidays :-) We used to have that 'how much do you love me' conversation when me and Fran were young. It was the 'no, i love you more than the world' 'no, i love you more than the universe'. Frances Ann finally stunned Uncle Hugh into silence (the one and only time I believe) when she said 'well, I love you more than God does!' He knows I love him very much.

Day 23: A picture of something you crave

Lion bars are amazing! I bought 15 of them on Sunday and have eaten 5 so far, which isn't bad :-) Mum used to always buy me a sweet of my choice to eat in the car coming home from clinic appointments. I always chose a lion bar. It's a classic! I also like the fact there is a lion on the packaging. I like animals.

I also crave home made truffles and flap jack but these involve more effort on my part. It has put me in the mood for baking though...

Day 22: A picture of something that confuses you

It was too difficult to pick one thing - I get very easily confused with all manner of things. I will give you some prime examples:

Accents: I have a major issue understanding accents and I don't necessarily mean foreign accents - I mean anything not from the central belt! I find it hard to guess where people are from and even harder to understand them at times. My best faux pas was saying to a doctor once "well that would be a bit Irish" in reference to something I can't remember and when she left the room, Andrew saying 'You do realise she is Irish?!"

Sports: Football and Rugby are the worst. In football they seem to just kick the ball down the field, the crowd crescendos, the commentator sounds like they are about to have a heart attack and then the player kicks the ball out or falls over. Total anti climax. In rugby they appear to just gather in wee groups and grab at each others shorts inappropriately. I find it disturbing.

Sensory Overload: I get easily confused if in a really busy shop, where it's noisy and there are lots of bright lights and people e.g department store. I just get all disorientated and confused about what direction I am going and what I want to look at. I think it's like a small child in a sweety shop - the choices are overwhelming

Films: I really annoy Andrew because I get easily confused by film plots, especially if there are a lot of characters - and more so if the characters look similar or have accents! He has to pause the DVD to explain what is happening on a regular basis.

Day 21: A picture of something that makes you happy

Sitting in my wee house, looking at my wee dog, looking at his big garden...on a sunny day. This makes me happy!