Let Love Live On!

LLTGL have launched their new campaign Let Love Live On to coincide with Valentines day.  You may be aware that ITV have been covering organ donation all week in their From the Heart campaign, which has been excellent awareness and seems to have provoked much discussion about organ donation.

The LLTGL campaign is aiming to create a positive message about organ donation and the fact it is not just the recipient who is affected.  They have created an amazing film advert portraying a young couple in love, with the twist at the end of showing the young man's transplant scar with the slogan 'Let Love Live On'.

I think its a lovely clip with a positive message.  I also have the song Falling In Love Again stuck in my head and keep singing the intro over and over!  Andrew said last night I had "the voice of an angel.....angel of death".   Charming husband I have ;-)

As part of this campaign, some VERY brave couples also posed naked (tastefully!) together, with their transplant scars showing.  I know some of the couples involved and it was a difficult thing for them to do but they knew this would get coverage in the media - showing normal loving couples who are still together through the gift of organ donation.  It was covered in the Daily Mail and I was appalled with some of the comments left by ignorant people online who have completely missed the point of the photo shoot.  Knowing the people involved made me even more enraged but I guess that is to be expected with anything in the media.  It also means the photo shoot has created a stir, has got people talking and in this way has once again got organ donation at the forefront of peoples minds (even if some of those minds are rather tiny ;-))

Article in Daily Mail

You Tube video interviews with couples


And of course, if you haven't already signed up....(and if read my blog and aren't on the register - shame on you!) then sign up via LLTGL website please.     You can also help by sharing the video above on your facebook, with your friends, on your blog.....spread a little love :-)

Talking....what's new for me?!

The body image presentation went really well.   I flew down to Southampton early on Friday morning, so I arrived in time for the meeting starting.  I listened to the morning presentations about liver disease in CF and other complications - it was actually quite interesting and I had to stop myself from asking questions on a few occasions, remembering I was there as a CF patient, not as a respiratory doctor ;-)

My slot was after lunch and I was sharing 1.5hr slot with a CF dietician from Leeds, who has previously spoken on the topic.  We had never met before but had a quick catch up at coffee to decide how to hang the presentations together - talk about last minute haha.  It worked really well as Alison did the introduction and presented studies and evidence base behind body image issues (mostly relating to weight and eating patterns) then I did the middle 40mins talking about the patient perspective, before Alison finished with clinical implications.  I based my slides on the booklet - trying to keep it quite light hearted and chatty but emphasising particular areas.   I did talk about weight and diet, but when we developed the booklet lots of patients brought up issues about posture, enlarged rib cage, looking young etc which were not related to weight.  I was able to speak about this spectrum of issues, which would be relevant to different members of the CF team, and also gave some of my personal experiences to make it even more real.   One of the topics was about CF people have very salty skin and how this can dry like crystals and white marks, which affects body image.  I told them about my friend Victoria, who has a tattoo down her arm saying "salty girls taste better" with a wee salt shaker.  They seemed amused at this, and can at least see that most CF people don't take life too seriously!  I am getting  picture of the tattoo if I ever present this topic again.   I felt overall it went well, and considering I haven't spoken on this subject, I don't think I seemed too nervous.   I got lots of lovely feedback at the coffee break and spoke to a few people, who commented on changes they might make to clinical practice as a results of this.  I felt it had therefore been worthwhile!

For those who didn't ever see the booklet, it is hosted on the CF Trust website (as well as the original relationships booklet) under external publications  HERE

I was pretty shattered yesterday due to the long day, but must admit to a long lazy morning!   We then went to visit Andrews Gran in the nursing home.  She is stable but very frail.  I gave her a manicure and painted her nails in a nice neutral pink - I am not very good at manicures but I think she enjoyed it anyway!  We then went to get Seb from mum and dads - he had been staying there for a couple of days because the dog walker was at a wedding, so he would have been on his own for 2 long days.  We can't have that for little Seb ;-)   He seemed pleased to see me, although its sometimes hard to tell haha!    

Next weekend we are going to visit some friends in Manchester, and on Sunday are catching up with my friend Sinead, who lives just outside Manchester.  She had her lung transplant about 8 years ago so is way ahead of me :-)

I plan to chill out for the rest of today, before it's back to the grind stone tomorrow...

Helloooooooo!

Hello and Welcome to Jac's secret blog ;-)  I hope I haven't made it too much hassle for people checking in, but at least I don't feel quite as exposed now!  The decision was largely fuelled by some boundary issues with one or two patients at work.   I use my maiden name at work to maintain my privacy and my blog was never set up with my full name.  However over the years I have added various links so that by googling my my maiden or married name it would only be a few steps to finding my blog.  In many ways I don't really care who reads it and have always hoped my journey would help other people with CF or awaiting transplant, even if I didn't know them personally, but at the same time I should perhaps be more aware about how open my blog really was.  

Life has been fairly quiet in recent weeks, January always seeming a rather long month.   Today was sadly my great Aunt Nancy's funeral.  I couldn't get away from work but was able to attend the service last night receiving the body into the Church.   Aunty Nancy was quite a character and led a busy and varied life!  When I think of her, the word Bingo! springs to mind - one of her favourite past times hehe.  I am thinking of Faye and Catherine at this time and hoping the happy memories are keeping them strong xx

Andrews gran has also been quite unwell over the last week and is spending most of her time in bed (in the nursing home) now.  She is comfortable and settled though, so that is all we can ask for.

Andrew has been really busy with work and was down in Salsbury for a few days last week, leaving me and little Seb to fend for ourselves.  We managed quite well (and the house stayed very tidy!) but we are glad to have him back.  

I am going down to Southampton on Friday for the day - to speak at an area CF meeting.   They have invited me to come and speak about CF and Body Image as they have found the booklets really helpful!  I have prepared slides based on the booklet but having never actually spoken on the topic, I am quite nervous!  It will be an exhausting day as I am getting a 6.45am flight and flying back that evening.  Better doing that and being in my own bed though :-)  The rest of the weekend should be quiet though so I can catch up on my snoozing.

I will leave you with some cute pics for Seb on a recent walk...

Seb sees an Alsation he knows and bombs off to see her!  

Seb away out on front - doesn't really like to walk 'with' me!

I was thinking Seb could maybe be their mascot?

Testing Log in!

Thank you to those who have sent me their email addresses for the new blog log in - I am collecting these and will send people details on how to log in once I make the change.  I know it's a bit of a pain all round having to log in, but I think better in the long run it will allow me to keep blogging safely!

I hope none of my readers feel they can't contact me to get added - I am happy for anyone to continue reading who has found it helpful so please do get in touch :-)  weejacblog@gmail.com.

While I am here, I will just post a link to my friends lovely little girl Georgia - she is getting her long hair cut and donating this to a charity who makes wigs for children with cancer.

Georgia's Page

Changing to sign in...

I am thinking of setting my blog to private where you need to sign in to view - so that family, friends, work friends, CF/transplant people can read it but it's not just open on public internet. 

Just been wondering recently that if a patient comes across the blog would I really want them to read my life story so openly and I think it being open makes me feel restricted in what I can say.

So if you would like to keep access then just send me your email and I will add this to the allowed list :-)   It doesn't matter if I don't know you well (mum and dads friends, Uncle Hugh's parishioners, friends of friends etc) - just drop me a line and I can add you no problem.  I'm not trying to make it very selective but just trying to be sensible about what I broadcast to the world!    You can contact me at weejacblog@gmail.com with your email to add.

I am leaving it open for a little while so people can get this message before I change it!

2012

January

To beat the winter blues, Team Glasgow kicked off the new year with a Swap Shop in aid of the CF Trust Holiday fund.  Although not as busy as we hoped, combined with a raffle and donations we still raised £760 which we were delighted with!

February

I don't have any pictures from February but I was clearly too busy relaxing at my spa break with mum.  We had a lovely 2 nights at Stobo Castle.  Team Glasgow were also on top form, booking a venue and creating a ticket site for the Hollywood Ball.    We then hounded people from February to August to buy tickets ;-)

March

 

Had a fab trip down to my cousin Kelly Ann's for Alana's Christening and completely fell in love with both Alana and wee Jake, who was super cute with his little doctors set!    I started Pilates classes with my friend Lucie, did some transplant awareness talks at George Heriot school and we had a mad weekend of gardening where I painted everything in site and Andrew built a wall.  Little did we know that the sunshine that weekend was it for the Summer!


April



My 33rd birthday and 4th transplant anniversary all in the same month!  Mum excelled herself with the 'owl cake' so I have high hopes for this year....  Also had my annual review at CF clinic with great results, spoke at an NHSBT conference for medical staff and went to see Derren Brown, which was amazing.   Also squeezed in was a quick trip to London and back for the 2nd day of the LLTGL advocate weekend.  Wow, it was a tiring month but amazing that I could do all this and still be smiling and healthy!


May

We had a fantastic holiday in Paris, with beautiful weather and lots of wandering around the pretty streets.  We decorated and signed a padlock with our names and date and hung it on the bridge, throwing the key into the water.  We also had the Butterfly Trust Memory day this month, which mum worked really hard to help organise.  I made butterfly keyrings for each family who had lost someone as a small token.

June

My lovely cousin (more like a sister) Sarah's wedding!  It was a lovely day and Sarah looked amazing!!  I made butterfly magnets as favours and we named the tables after British Butterflies.  I gave Sarah a locket with a picture of Frances Ann which she wore on the day, so we could both feel she was close to us on such a special occasion.

July

It's Where's Wally and Where's Wenda  ;-)  Andrew still hasn't quite forgiven me for this fancy dress outfit haha.  Team Glasgow started the big run up to the ball, collecting prizes, starting the big hamper raffle and organising details with the venue.    We made some money prior to the ball - I painted and sold miniature hollywood star paintings and mum made 300 bars of her famous tablet making us £300 to add to the total!

 August







A very busy month!!  Myself and Victoria ran an organ donor desk at Anders football tournament and made ourselves useful by serving fruit to all the boys!  Of course we had the amazing ball - hard work indeed but so worth it when we topped the £9,000 in aid of the CF patient fund at our local CF unit.  We were so pleased and the evening went just as planned, if not better :-)  It was also mum and dads Ruby wedding anniversary and our 8th wedding anniversary.   A busy but happy month!

September



I always find September a difficult month because of both Frances Ann's anniversary and birthday.  It was very apt therefore that on her birthday I was running an organ donor desk with Team Glasgow at the Freshers Fayre.  I felt as if this was a great way to remember Fran and hopefully make a difference to others in this situation.  There were also lots of fun times this month - the hen weekend with Nicola in London and Grant and Victoria's wedding in the borders.   I was also really pleased to have a letter published in the BMJ :-)

October

This was another lovely month!  We celebrated Nicola and Simon's wedding - a lovely day in Millport and Largs!  We also had a weekend away with Claire and Giuseppe in Copenhagen and had a fab time and a great laugh.  I especially enjoyed drawing a picture of us with crayons and putting it with the kids pictures in a cafe ;-)  It was Anne and Johns Ruby wedding in October so we celebrated with a champagne lunch.

November

Cape Verde - amazing!  We relaxed and relaxed some more.....what else can I say?!


December

Well as usual, we had a lovely Christmas and enjoyed lots of buzz in the lead up to the big day.  I had my annual review at work and was delighted with the colleague and patient feedback I had received....at least I feel as if I am doing something right at work!  We had a great time visiting some friends last week and look forward to our new year celebrations.

So here we are at the end of another year and when I look back over the past 12 months, I am reminded of what a fantastic family I have and what an amazing group of friends, and of course the best husband ever.  I realise how lucky I am to be able to live my life to the full and will always strive to make the best of life.  I will of course be thinking of my donor and her family tonight as we end another year and welcome a new one, full of promise and hope.

Wishing all my friends and family a very happy new year and a 2013 full of laughter and joy!

 Christmas!

We have had a lovely (and very busy) festive week!   We arrived at mum and dads last weekend so I had the whole of Christmas eve to run around getting excited ;-)  I met up with my friends on Christmas eve morning then got increasingly excited as the day went on!  We went to the vigil Mass then watched Muppet Christmas Carol (still by far my favourite Christmas film) then off to bed ready for Santa.

I have to admit to waking Andrew at 6.20am to open our stockings, then after waking mum and dad with 'morning has broken' on the keyboard, I had them up at 6.40am.  Oops!!   As usual I was utterly and completely spoilt, with mum choosing lots of lovely clothes for me...and a lovely little red riding hood duffle coat :-)   Myself and Andrew had decided to get ourselves an SLR camera as a joint present but we kept it until Christmas day so it was like the paparazzi when we were opening presents and Andrew kept clicking away..!  He had also chosen me other surprise presents including a really lovely leather bag with an owl and butterfly design...two of my favourite things ;-)    Mum and dad were really pleased with their presents and especially liked the 2013 Seb calendar.  Uncle Hugh then arrived and we had a lovely meal, opened my handmade crackers with selected jokes for each person,  and then ate my favourite pudding!  

 On Boxing day we went down to Anne and Johns as usual, for our Christmas dinner no 2!  Great to see everyone and just had a nice chilled time.  Anne always puts extra little presents on the table so I got some fab mavala nail polishes!  We all got into our jammies to watch TV...apart from John who refused to put on his superman pj's hahahahaha!

We were then visiting some friends in Manchester friday and saturday and had a lovely time before heading back to mum and dads!  We now have three days of new year celebrations ahead with Anne and John coming tomorrow for Hogmanay and New Year and a big family get together on the 2nd.  Then back to work on Thursday.  Work?  What's that?!!

3 sleeps!!!

I can't believe it's nearly Christmas - how did that happen?!  I am however all organised now - decorated, presents wrapped, work finished and ready to start my holidays at home tomorrow :-)

It's been a busy few weeks with some festive events.  First weekend I had a Christmas party with the old age psychiatry team (where I am covering one day a week at the moment).  The least said about that night out the better.....it was a late one, I had sore legs from dancing but it was good fun.  The following weekend was my current work places night out.  It was a Hollywood Glamour theme so I at least had a chance to wear my ball dress again.  A great night although I left a bit earlier, since I was still recovering from the weekend before haha.   I also managed a wee dinner with friends and mince pie and mulled wine with an other friend.  Not bad going really :) 

In the middle of all the festivities I had my enhanced appraisal at work, which is an annual review which is required for revalidation.   This year I had to get patient and colleague feedback as part of the assessment.  I was delighted with the feedback from both sides and it has reassured me that I must at least be doing something right!  

As always, Christmas brings back a lot of memories, especially when we are decorating the tree.  I had some lovely new additions to my tree with decorations from Paris and Copenhagen....and Andrew got me a glittery owl.  You can't go wrong with a glittery owl ;-)

I do always think about both Frances Ann and Claire, as well as my grandparents, at this time.  I noticed it is the 20th anniversary of the film The Muppet Christmas Carol this year.   Fran bought me this video (not dvd!) 20 years ago from her own pocket money - so she would have been 7 at the time.  She was so pleased with herself :-)  We watched it every Christmas Eve thereafter.  We actually haven't watched it since we lost Fran but I think it might have to come out of the cupboard at some point over these holidays as I think she would think it was about time! 

After an excellent review at transplant clinic this month, it just reminds me again how lucky I am to be here and be so healthy.   I think at Christmas this always seems more poignant and it certainly is the time to rejoice in my 2nd chance and to spend time with all the people who matter the most to me - my family and friends.

A Merry Christmas to us all.  And God bless us, every one!   :-) 

Mammoth Catch Up!

We have been on holiday for 2 weeks - back last weekend, so my blog has been sorely neglected.  I think it might make more sense to work backwards with my news :-)

Newcastle

I had my 6 month review at transplant clinic today and had some top marks again!  My lung function was exactly the same as the last review - 2.9L (109%) - and I can't ask for any better :-)  My BP, weight, oxygen levels etc were all stable....boring is what we want!   I have to go back in another 6 months and it is so nice to have a clean bill of health in the run up to Christmas!   On the way down to Newcastle we stopped at the Metro centre for a couple of hours as I am rather behind with my Christmas shopping which is not like me - I will have caught up in no time though!

9-5 - The Musical

We went to see 9-5 the musical in Edinburgh at the weekend!  It was a great show and I really enjoyed it.  Apart from the song working 9-5, I didn't really know the soundtrack but it was quite catchy and the show itself was very funny.   I have such good associations with that song because of it being the ring tone when I got my transplant call.

Cape Verde

So for 2 weeks of November we were sunning ourselves in Cape Verde, sipping pina colada and relaxing.  The Cape Verde islands are off the coast of central Africa, south of canary islands, and are just becoming quite a popular tourist destination - especially if you are seeking some winter sun.   We were on Boa Vista, where Thomsons fly to direct from Glasgow.   The island is volcanic, very barren and there is nothing really on the island, other than some small villages and the two large resorts.  The whole coast of the island is set for development so it was nice to get to see the island before it becomes much more developed.   We stayed in a nice resort, which was all inclusive -although you wouldn't really be leaving the resort anyway as there is nowhere to go exploring.   We did go on an organised tour with Giggling Gecko  - a tour company set up by a Scottish couple who moved out there this year.   This was an excellent day - they took about 12 of us out in four wheel drives to explore the island.   There are not really any proper roads on the island so it's pretty rough terrain!  We went to see a couple of beautiful unspoilt beaches, where we were the only people on them.  We also saw the sand dunes on the island, with sand blown in from the Sahara.  We had lunch at an eco lodge in the middle of no where with the most stunning view, and then finished off having a drink in a lovely beach bar as the sun went down.   It was a great day and the best way to see some of the island.

We really did do nothing but relax - I read about 13 books (had to swap kindles with Andrew because I ran out haha), we ate lots and relaxed in the shade.  The temp was high 20's-30c, with a nice breeze - so you could lie in the shade and just feel comfortable.  The pool was a bit cold for me but Andrew had a swim and we both paddled in the sea but it was very rough.   There were 3 people in the hotel with broken arms/dislocated shoulders from being in the sea!  It's a shame because the water was warm but the waves were just too strong.   The beach was lovely to wander along though and I was happy just to get my feet wet!


Some pics from cape verde:

Big waves!

One of the lovely unspoilt beaches on the tour:

The eco lodge where we had lunch

The view from beach bar

 Sunrise at hotel beach

There were 2 dogs in the hotel who I made friends with!

It was then back to reality with a bump when we went from 30c to 0c when we landed at Glasgow!  Back to hats and scarves but at least we are now in the Christmas season so I can start getting excited about that instead :-)

am still working the extra day at work and I have a few Christmas parties coming up over the next few weeks so the busy period continues ....but all good fun :)