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/