Hello!

As a follow on from my last blog, I have been quite busy helping to organise the Soccer Sevens tournament in memory of Anders.  He organised this football tournament every year for CF and transplant charities, raising thousands over the years.  Anders joined Team Glasgow last year and had enlisted our help with this years event.  Of course we are going to host this as planned.....and make it an event he would be proud of!

Thankfully Anders had already secured the venue - Firhill Sports Complex in Glasgow on 10th August.  We have sorted referees, getting teams details in now and thinking up other extras to make it more special.  We plan to run a tombola this year to raise a little extra money and so that people attending in support also can take part :-)  So if anyone has prizes they would like to donate please give me a shout! 
Anders always used to make up packs for any children attending, so also give me a shout if you have any ideas for these or can face paint on the day...or make balloon animals lol ;-)

We are having one fundraising page for all the football teams and to take donations in memory of Anders.  All proceeds are for the Butterfly Trust - the only Scottish charity supporting people with CF.
www.justgiving.com/soccersevens/

I have also been super busy trying to finish a first draft of my second Autism essay.  The topic was based around Policy and Practice, which I found more difficult to write about than the theory one.  Have more or less finished a first draft of 6,500 words and waiting on tutor to get back to me and let me know if I'm on the right track......!

This is also national transplant week.  NHSBT are running a campaign called Spell it Out - with reference to the need to to make your wishes explicitly known to your family.  If your family are not aware of your wishes around organ donation (and you haven't signed the register) then almost 70% will say NO when asked to donate your organs. Even if you are signed to the register families are still asked for consent and can overturn your decision - 125 families (UK) 2012 refused because the loved one had never spoken to them about it, even though they had signed the register! It's not just about signing the register - you need to talk about it!   NHSBT were inviting people to come up with their own "spell it out" slogans.   I made this one on my scrabble board ;-)

 

Anders Gibson

I haven't updated my blog this month because all my news seems insignificant compared to the loss of my dear friend Anders.  It has also brought back a lot of memories about Fran, so I have been in a fairly contemplative phase.  I have felt both sadness, and happiness at what I have had and for what I have lost.

 I have decided I should come and write a blog about Anders and share some of those feelings - he would have liked that as it would have made him feel important :-)

For those who follow my blog and facebook, you will have known that Anders received his call for transplant on the 6th April.  Sadly there were complications with his new lungs afterwards and although he battled hard for 6 weeks in ITU, he slipped away from us on the 19th may.   He was surrounded by his family, who tell me it was very peaceful.  He fought to the very end.  I was actually in Newcastle that day for transplant clinic and his brother Stefan arranged for me to visit Anders in ITU.   I was able to hold his hand and say I was there - I don't know if he knew but hopefully he did.  I had also thankfully managed to speak with him on Skype the week prior - he was in ITU, hooked up to ECMO which was doing the work of his lungs, but there was his little hairy smiling face on skype!  He had his voice valve in for a few days so I even heard his voice - and am so grateful for that.

I became friends with Anders over 10 years ago, first knowing him through the online CF forum at that time.  It was only after losing Frances Ann that my friendship with Anders really developed.  Before then I never felt the need to talk to other people with CF, as I had Fran, and that was enough.  After her loss I found myself adrift, with no one who really understood what it was like living with CF.   At that time my own health was failing fast and I was on the road to transplant myself.   I had selfishly always thought that Fran would be there to help me with that journey.   I had however found myself quite alone.   I remember at that time that there were three people from the CF community who stepped forwards and helped me to fill that aching void.  Anders, Fi and Emily.   Sadly, as you know, we lost Fi a few years ago now after she battled with liver problems due to her CF and dear Emily is of course still around giving me strength.

 I had however 100% believed that Anders would get his transplant and would do well - because he was so determined and was someone who always put his words into action.  Even when he was on 24 hr oxygen, he tried to go to the gym to keep his health as stable as possible, he played in goal for his football team, and when he couldn't do that he managed the team.  He was an avid fundraiser and had a keen interest in politics, so was campaigning at every opportunity.  Recently he took up stand up comedy and took great joy at making fun of CF and it's awful impact on his life.   Anders always saw the funny side to everything and he was actually pretty hilarious (although we could never tell him that or he would just get carried away ;))  I went with Andrew to see his first stand up comedy act  - it was great and I didn't need to heckle!

There was a more serious side to Anders though - and it was that side he was able to share with me when I most needed it.   We chatted for hours on end using MSN and a webcam (not being able to meet due to cross infection) and he told me about his life, his CF and he allowed me to share mine.  After a time the conversation was less about CF and more about life in general and the ups and downs we all experience.   He could use the right amount of humour when needed, but was also very gentle, understanding and incredibly kind and generous.

Back in 2006 Anders nominated me for a Breathing Life Award, for which I was short listed.  These are run by the CF trust and he had nominated me for the Academia one.  He was also nominated for a fundraising one and was delighted to be at the awards wearing his kilt!  I still have the nomination letter he sent and it's rather lovely :-)  One of the things he said was:
"I have great admiration for Jac and everything she has achieved, especially considering the difficulties she has had to face. I feel like I can’t do her justice on this page. Sadly Jac and I can’t meet, my hope is that one day we can sit down post transplant and have a drink."

Anders loved music and had the habit of sending people his famous 'mix CD's' in the post to cheer them up.  I have a stack of them in my car - dating back to 2005, where his choices were somewhat interesting.  He would give the albums names - two I always laughed at were "slightly strange" and "a little bit odd." When I asked him why he had chosen these names, he said it was to describe me ;-)   I introduced him to using those little mint tins to keep tablets in, so earlier this year he sent me one of those in the post.  It was a Edward Monkton one about the penguin of death.  He did have a rather morbid sense of humour ;-)

We were often on the CF ward at gartnavel at the same time, before my transplant.  I wasn't allowed to visit him but mum would go along and sometimes take him down for a coffee.   Andrew tells me that I also sent him along to keep Anders company when he was up starting IV antibiotics, so had to hang around for an hour after the first dose.  Andrew had never even met him before but they got on famously that day.   After my transplant I have never been an inpatient again.  Anders however was frequently on the ward with infection after infection.  Although I couldn't visit, I would hand in goodie bags to the ward for him - had to have Irn -Bru and jaffa cakes!  I liked to send him sarcastic cards - a recent one was the postcard of a road sign that read "this sign is squint, just like your head".  That appealed to him because he wanted support, not pity!    He used to also take gifts to the ward, especially  at Christmas, for patients who were in the CF unit.  Last year he had helium balloons delivered to cheer up the CF patients and was always handing in sweets for them too! 

He became a member of Team Glasgow last year, as it seemed daft for him to be fundraising on his own - plus he quite liked the idea of being in a team with four girls :-)  In all his facebook messages he made sure to always sign off "with a kiss for each of you - in case you get jealous!"  He ran an annual Soccer Sevens tournament for charity and we were in the process of organising this with him.   It will still be going ahead of course - 10th August in Glasgow  - all invited!  Team Glasgow will take on the organising with his family, and make it a day he would be proud of!  It is in aid of the Butterfly Trust, as had been chosen by Anders.

His journey on the list was a roller coaster.  He had kidney problems so was worried he wouldn't qualify - but in the end he did, and he was delighted to be finally listed for transplant.  He wasn't expecting to wait as long as he did, but in the months before his final call, he had four false alarms.  Travelling to Newcastle to be told either he wasn't well enough, the lungs weren't good enough, or there was someone else in more need.  Transplant is a difficult journey - there are not enough organs and how do you really decide who gets them?  How do you know when it's the right time? No one has the answers. He was philosophical about this though and always delighted in hearing that someone else had got their call, but emotionally it was taking its toll and I think he really needed the final call to come.

I remember vividly getting his text at 3am on 6th April saying he had got that call.  I remember being convinced this would be the one, and I just couldn't sleep for the rest of the night until I heard whether it was going ahead.  I sat in a work meeting with my phone on the table, telling everyone about Anders and waiting on the text to say he was in surgery.  It did go ahead and the initial stages were successful and I breathed a sigh of relief.   Sadly it was complication after complication to follow.  Throughout this Anders continued to say that he was happy to have been given a 'chance' as this was more than many people get - even if it didn't work out.  He made the nurses laugh, he flirted in Anders style, wound up the doctors....and he never gave up hope.   It was something the ITU staff had never seen before, and are unlikely to see again.

Shortly before his call I had a conversation with Anders about life in general.  We spoke about the fact that when we were born, children with CF were not expected to live beyond early childhood.  He gave some words of wisdom that will always stay with me now:

 "You know that you and me are lucky, we have exceeded expectations - we shouldn't even be here....in many ways we have won."   He did also say, rather unhelpfully (!) "You are my role model, and that means you can't get ill and die." Quite an unreasonable request I thought, but will do my best to honour it!!!

But my point here is that he was right - he did win!  Anders was expected to live to around 5 years old - but he was here for 35 years, and lived life to the full, touched so many lives and supported his friends at every opportunity and asked for nothing in return.

That is indeed a life well lived.

"It's not how long a star shines, what is remembered is the brightness of the light."

April Fun

It's been a busy month :-)   My birthday, mums birthday, Easter, my dads birthday and my transplant anniversary!!

It was my birthday first and I had a lovely day with my friend Lucie and Lauren, and their lovely children.  We went to Calderglen park for the day as I had been desperate to see the meerkats haha.  We pretended it was for the children.....!   We then had lunch and cake at Lauren's, before I headed home and went out for dinner with Andrew, Mum and Dad.  A lovely day all round :-)

Snowy owl cake ;-)

Then it was mums 65th birthday!  As it's not long since her hip surgery I decided to cook dinner instead of us going out, as she could then relax more.  I went all fancy and for the first time cooked duck breast!  It was rather successful if I do say so myself, although very time consuming with all this "rendering the fat" carry on before cooking it.  Will just stick to steak and chips next time ;-)  I did make a cake and a shrink plastic butterfly to decorate it (this is my new favourite craft item!)  We had got her some nice Citrine jewellery to match the Citrine ring dad got her for their 40th wedding anniversary.

The following weekend was Easter and I was so glad to have a Monday holiday.  We had Easter dinner with mum and Uncle Hugh - as dad had flown off to Ireland for a week with his brother, golfing!  Mum cooked a lovely roast lamb dish and a new poached pear with chocolate sauce recipe.  I stayed until the Monday as we were having a 'cousins' get together on the Monday.  Mums cousins son, Ben, was over from Australia visiting so all the first and second cousins gathered on Monday to catch up and say hello.  It was a good turn out and a lovely night.  Nice to have a family who make so much effort to keep up with one another :-)

Last weekend was Dads 70th birthday and my 6th transplant anniversary!   Dad was in Ireland on his actual birthday, although apparently the pub brought out a cake for him haha - this is probably a sign of how much they spent there over the week ;-)   We had a gathering for his friends on the Sunday once he was home.  Myself and Corey (who was up visiting) were in charge of food shopping and cleaning haha - we made a good team although not sure it was quite to mums standards!  Corey got told off for slacking on a number of occasions and I was reprimanded for the way I stuffed a pillow into it's case haphazerdly :P

I think dad really enjoyed the gathering, although we couldn't stay too late as had work the next day.  Mum had made a cake and I was creating with the shrink plastic again, so made a wee golfer dad and a flag with 70 on it.  Was quite pleased with myself ;-)

My transplant anniversary was very quiet to be honest.  My dear friend Anders is in hospital just now, fighting to recover from his transplant.  He got the call on 6th April but has had several complications.  The lungs started to fail last week and he had to be placed on ECMO (machine which takes bloods out and oxygenates it) and has remained in ITU.  He is fighting harder than anyone I have known and is so determined.  They are keeping him on ECMO just now to give the lungs a chance to recover, so please keep him in your thoughts and prayers.  It has made me realise just how lucky I was to be given that second chance 6 years ago and it puts life in perspective.  It is far too short and we really do just have to make the most of it while we can.

Finally, the yellow duck project I mentioned has now launched and is doing well!  I have left ducks in various places and a few have been reported back to the website as being found.  I still have some to leave but it's an ongoing project so will probably make some more with time - might ask friends and family to start leaving them in different places for me!  I made the mistake of naming them after people I have lost to CF and transplant, so then I didn't want to leave them anywhere!  However I did leave Fran during one of my dog walks on a nice bench near the start of the west highland way.  My friend left Gerard duck on the commonwealth game bench in Glasgow Green, which was so apt given Gerard competed in all the the transplant games.   It's a fun project, so any crafters who could get involved please get in touch.  Check out the website here:  http://thelittleyellowduckproject.org/

USA

Week 1 - South Carolina

Not sure if folks remember, but ages ago I was invited to go and present the CF and Body Image booklet at a CF conference in South Carolina.   Of course I jumped at the opportunity, and there being no show without Punch, Andrew came along too :-)    We jetted over on the Saturday morning, and 3 flights later we arrived in Charleston at 9pm.  We stayed at a B+B the first night and getting there in a hire car was all a bit of a blur but impressive navigation on Andrews part.  The following day we moved over to a beach house in Folley Beach, near Charleston.  This was kindly loaned to us by a lady known to the conference organiser.   It was fab!

The first 2 days we had lovely weather and enjoyed exploring Charleston - walking all over the city and seeing as much as we could.   Unfortunately the weather took a strange turn - dropping to 3c with torrential rain - for the rest of our stay!   It didn't really matter for the conference days but would have been nice to see a bit more sunshine never the less.

Charleston

View from back of beach house

Weather turns chilly

I was orginally meant to be speaking on the Wednesday but the schedule had to be changed and I was speaking at 7.30am on the Thursday.  I don't think I have ever been to a conference in the UK that started before 9.30 at a push!  We were still on UK time so it was easy to get up anyway!  The talk went really well :-)  I had an hour to speak about the topic and felt I was able to cover everything, without rushing or going on too long.  I got some great feedback and the attendees found it really helpful.  There was a panel discussion later in the day where I was asked some questions.   We met some lovely people and got to chat to lots of people I had only spoken to via email.

In the evening I attended a parents group to talk about my experiences of CF and Transplant, organised by Mary, who is a CF physio and did most of the organising for me.   I really just spoke from the heart for that one and it was much less formal - I think they found it helpful and hopefully was a positive for them to see me doing so well.

Talking to parents

With Mary - organiser and CF physio

We also had dinner with the CEO of the company who sponsored me to attend the event.  The company make one of the physio vests in the USA (basically a machine that causes vibrations in chest to help clear mucus).   He was lovely and was pleased to chat about CF and my experiences, as well as my career in psychiatry.  In fact it went so well that I might get the opportunity to go to Minnesota (where the company is based) to speak!!  Exciting :)

Week 2 - San Diego

This was the holiday portion  - and although it involved flying to the west coast it was worth doing something I really wanted to while I had the travel insurance.   I LOVED it!  I will definitely go back to California to explore further afield.

San Diego itself was lovely - quite laid back and chilled.  Weather was low 20s and lovely!  We had rented an apartment in the Gas Lamp District, which was ideal - loads of places to eat right on the doorstep.

View from Apartment

We were on the go all the time trying to see everything we could!  My top trip was to go to San Diego Zoo and it didn't disappoint!  We saw the Pandas, although I also loved the Polar Bears and giraffes ;-)   It was a massive zoo and you could easily spend more than a day exploring.

Andrews choice was the USS Midway Aircraft Carrier - which was surprisingly interesting ;-)  Although after I had seen below deck and looked at a couple of planes, I was done haha.   We also explored the harbour and there is a cute tourist area down by the water called Seaport Village with really nice shops.   We also explored the old town (quite wild west feel) and went on a ghost tour at night, which was great fun!


At the harbour

USS Midway Museum

Old Town

We hired a car for the last few days and drove up the coast to La Jolla Beach and to Oceanside pier.  We went inland up to a village called Julien, which used to be a gold rush town but is now famous for apple pie, as they grow lots of fruit.   We went to Torrey Pines national park and walked one of the trails, as well as just driving around looking at the amazing scenery and visiting Point Loma.


La Jolla

Torrey Pines

Driving about in the hills...

Julian

On Pier at Oceanside

Point Loma

All in all it was a great experience!   It was fab being able to meet all these lovely people in Charleston and get the opportunity to speak.  I also loved California and am already planning what I could do next when we visit....!!

I'm Back!!!

I more or less gave up writing my blog because so many people had trouble logging in etc that it seemed more hassle than it's worth, especially when most people catch update on facebook.   However I came up with the idea today to create a google account that everyone can use for log in if they are having trouble with their original one.   So going to give blogging a try again....!

Given that we are now in April I have 3 months of blogging to catch up on.   Looking back January and February were fairly quiet.  March was very busy with a trip to USA so may need a blog entry of its own :-)

January
I finished off my Autism essay for part 1 of the module and just got the results this week telling me I had passed :-)  There is no grading but it was marked as excellent in all the areas so can't ask for more!  I need to enrol for part 2 now (another 6000 word essay) and hopefully by end of the year I will have my Post Graduate Certificate!  I am finding it really interesting and learning that Autism is so much more complex than I ever imagined. 

February
Health wise I have been really good and had CF clinic in February, with got a good report.  My shoulder is still bothering me so I was back at orthopaedics and I am now waiting on more physio to try and help stabilise it.  Joints in general have been bad actually and recently been getting these weird sharp pains in sternum and ribs, which doctor thinks is inflammation in the tiny joints connecting to ribs.  All part of my CF joint stuff.  However, in the bigger picture - it's nothing compared to the sick lungs, so not complaining!

We had my lovely friend Louise and her family for the weekend which was fab.  We went to the science centre, which I think I enjoy more than the kids.

Mum had her 2nd hip replacement and is making a good recovery - after getting in trouble a lot on the ward for doing too much ;-)   At least that's both surgeries behind her now and she can start to recuperate properly.   I think she is hoping that dad has got used to doing some of the heavy housework.  I doubt it ;-)

March
USA for 2 weeks - will blog separately!  We had big group of friends staying last weekend - 11 of us for dinner and 7 to stay.  Busy!  It was fab night though and worth the many duvets I am still washing now...

I was also speaking again at George Heriot school about organ donation, and this year, my good pal Kirsty also did two sessions with them - which went down really well! 


Last Sunday was of course Mothers Day.  Since mum is not able to sit for long periods she wasn't keen to go out for dinner - so I took dinner there and cooked it instead, which worked out well :-)  Fillet steak  - can't beat it!    

A CF lady, Emma, is currently organising a campaign called The Little Yellow Duck Project in memory of a friend, Clare, who died waiting on transplant.  The idea was inspired by  Clares mum, who is marking her anniversary by carrying out random acts of kindness.  Emma has got all the crafty type people on board to make little yellow ducks (by any medium - knit, sew, clay, bookmarks etc) and they are going to be left in random places for people to find.  There will be a tag saying to take the duck home and a link to a website which will explain the story and urge people to join the organ donor register - as a act of kindness.  Ducks have become the symbol simply because Clare loved them!   I have so far made some from fimo modelling clay and discovered 'shrink plastic' for making keyrings so trying that too!  I will post when the website is ready!

 
 

2013 in Pictures

January

We had a lovely family gathering to celebrate new year 2013. 

The rest of the month was quiet, and sadly we lost mums Aunty Nancy but there were many happy memories to share.

February

I presented my Body Image booklet at the CF conference in Southhampton, which was a great experience.  We visited friends in Manchester and had a lovely weekend, and LLTGL launched their fab "Let Love Live On" campaign for valentines day :-)   I finally met an online friend Kelly and Seb met her lovely poodle Barney - and made his first good friend haha.

March

I presented to the physio team at my hospital about pulmonary rehab in Cystic Fibrosis.    We had a lovely family celebration for Easter.

  

April

This was a busy month for organ donation awareness!!  It was my 5th transplant anniversary so was rather apt to be spreading the word!   I  did two talks at George Heriot school to 4th year pupils,  I helped out some media students , who were creating a short film about organ donation as part of their module and met with another student, Mike, doing a masters in Design who was completing a project and dissertation around organ donation.  Finally on the day of my anniversary I spoke at the  Regional Collaborative Meeting - this was essentially key players in organ donation, ITU and A+E consultants - all the people involved with identification of donors and dealing with donor families in Scotland.  I did also manage some 34th birthday celebrations in April too and we went to a 1950s party for Irene's 60th ;-)

May

We had some amazing weather this month, so spent lots of time in the garden - I went on a spree of painting everything in sight :-)   At the end of May I went in for my shoulder surgery.....ouch! 

June

I spent most of June recovering from my surgery - I had some problems with my chest post surgery but otherwise recovered well!   We went to Mike's design show to see his final work on organ donation, which was really interesting.  At the end of the month we had our friends over for the weekend to stay, and Seb learned to tolerate his arch enemy 'Alfie' for the evening ;-)

July

Busy month!  Had my lovely friends Barry and Louise, and their 3 kiddies for the weekend - we had great fun!  

Then we had Uncle Hughs Golden Anniversary celebrations, a trip to Hawick for Andrews cousins 40th and it was also great catching up with my cousin Kelly Ann and her family :-)  

August

We went to Pefkos in Rhodes for a lovely relaxing week.  

Mum and me went to Stobo Castle for some pampering and at the end of the month me and Andrew zipped across the Clyde in aid of the Willow Foundation.  Team Glasgow riased over £4000 together! 

September

We had a fab trip to Brugge with Claire and Giuseppe -mostly spent drinking beer! 

Myself and Victoria ran the organ donor desk at Freshers Fayre.

 

October

Andrew completed his first half marathon in aid of Breast Cancer.  

We attended a charity 1920s night, so got dressed up which was fun. 

We then went to Elgin for the weekend as my friend Sheila was organising a  quiz in aid of LLTGL. 

At the end of the month I was in London for the LLTGL advocate weekend :-)  Mum got her hip replacement this month and continues to make a good recovery.

November

We celebrated our friend Cameron's wedding!  Then I started a post graduate course in Autism and spent most of the month frantically researching and writing a first draft of my essay.  

December

We started the month with a trip to visit Louise and Barry and start the Christmas fun!  

I enjoyed the run up to Christmas - making crackers, wrapping presents and baking mince pies :-)  I had my work night out which was great fun and met up with my friends for a Christmas lunch.  

Sadly we lost Andrews Gran this month - we did however know that she was finally at peace and no longer suffering.  

Christmas itself was lovely (as always) and we have both enjoyed spending time with all our family :-)

 

I don't know what next year will hold, and I am not one for making new year resolutions.  I hope for more adventures, dreams coming true, fun and laughter and health and happiness for all my family and friends.  I thank my donor once again for giving me this chance to celebrate life.  And regardless of what happens in my life this year;  I am content, and I am happy.

“When you are discontent, you always want more, more, more. Your desire can never be satisfied. But when you practice contentment, you can say to yourself, 'Oh yes -- I already have everything that I really need.”   

Dalai Lama