Why blog?

I have not written since August and it's probably because of several reasons.   I am not sure this private blog is working out, as I really have lost most of my readers.  Even people who I did send invites to seem to have problems logging in!  I have also been busy with life - which is surely a good thing :-)

However I think that it is nice to look back and remind myself what I have done over the year and to record some thoughts on the way, so I am going to try and get back to my blog again....

So maybe best start with a quick (!) summary of august to november!

August

Team Glasgow and friends took part in a zipslide across the Clyde at the end of August in aid of The Willow Foundation.  This is a charity who provide special treats and days out to adults with life threatening illness.  We had great fun and I am pleased to say I made the jump and zipped without any problems.  It was over so quickly though!  As a team we raised over £4000 for the charity so it was well worth it!

Me zipping!

September

In September we went on a lovely weekend break to Bruge with Claire and Giuseppe.  The weekend consisted of sampling beer, visiting the local brewery, sampling the traditional food, sampling some more beer...and then some more :-)  We had a lovely relaxing weekend and Bruge itself was very quaint, with its winding cobbled streets and beautiful canals.   We also ran our annual Live Life Then Give Life stall at Freshers Fayre over two days.   It was a great success again, although exhausting.   Team Glasgow have started early planning next years ball and we viewed a venue with a provisional booking for 25th October 2014 -so get that in your diaries!   It was of course also Frances Ann's birthday and 9th anniversary in September - it really doesn't get any easier.

Bruge

October

This month started with Andrew taking part in the Great Scottish Run - which is a half marathon.   He did really well on the day and completed it in 2 hrs 22 mins and 22 seconds.....spooky!!  He did this in aid of Breast Cancer Breakthrough.   We also attended a charity night for Quarriers, as my friend Victoria is volunteering for them at the moment.  It was 1920s theme so I managed to find a 20's style hat to go with a dress I already had.    The following weekend we were up in Elgin at a quiz in aid of LLTGL, which my good friend Sheila had organised.   It was a fab weekend and lovely to catch up.

At the end of the month I was down in London for the LLTGL advocate weekend.  It was a great weekend and we generated lots of new ideas and heard about some upcoming changes for the charity.  Watch this space :-)  I gave a little presentation on psychological issues post transplant at the meeting, as it has been found that depression and anxiety are more common in people post transplant. Although that might seem surprising to some people,  I think it makes sense.   Some of this is related to changes in role and expectations about life achievements, as well as dealing with the trauma of what has happened, and also the fear of what is still to come.   It's an interesting area and probably often overlooked.

October was busy for mum too - she had her first hip replacement - with hopefully the second one early next year.  After some initial problems with low blood pressure post op, she has made a great recovery.  She is able to move about with one stick now and has done really well with all her exercises.  She will be seeing the surgeon next month and hopefully will get an idea when the next one can be done - as this is painful so holding her back.

 After the run!

 20s charity night

Elgin - at the beach

Elgin  - quiz night

November

We were at a wedding this month - our friend Cameron, who we shared a flat with at uni.  It was a lovely weekend, although the weather wasn't too kind to them!  We did have some fun at dinner carving pumpkins - these were part of the table décor but someone suggested an impromptu pumpkin carving competition and Cameron ended up being presented with about 20 small pumpkins haha!  Andrew used his sgian-dubh (the wee knife you put in your kilt sock) to good effect :-)

I then started a postgraduate certificate course in Autism and Aspergers.   There was three days of lectures and I have now got a 6000 word essay to finish before end of February.   I have started researching and writing up parts of it, so feel reasonably under control just now.  I really don't want to be doing any of it over the Christmas holidays, so wanted to get a good start now.  I am planning to look at how Autism and Aspergers presents in acute psychiatry and related this to the theories (analysing the theories is the main learning objective).    It's definitely been keeping me busy....

So I think that is more or less up to date!  Let's see if I can actually update again before Christmas...

....which is getting very close!  Woooooooo!!

Seb Calendar

I know I have been quiet for ages, and I will come back soon and write a proper blog!!!

This is just to let people know about my Seb calendar for 2014.   I make this every year for myself but thought I could sell some extra copies in aid of Live Life Then Give Life.

Double A4 Wall calendar £10 
Small Desk calendar £5
Each month has different colour photo of Seb with caption :-)

If anyone is interested then drop me an email jdidsbury@gmail.com or leave a comment.  Let me know soon please because I need to order them :-)

Take me back to Pefkos....

We had a lovely week in Pefkos, Rhodes - and it's now back to reality!   Unfortunately they were having a mini heat wave and temperatures were over 40c during the day and in the 30s overnight.  Thank goodness for air conditioning!  It was however good at enforcing rest because we really couldn't do anything else!  Lots of lounging around the pool (7 books read on my kindle) and we became quite good at water ping pong hahaha.  Hours of fun playing that in the pool!    We went on an evening trip to Rhodes old town, which was beautiful.  Lots of winding streets, interesting shops and much cooler with the cover of buildings and vines tumbling over old walls.  After a meal there we went on a boat trip round the harbour.    We also took an evening trip to Lindos - a small white washed town which as an Acropolis at it's peak.  We walked up and got some lovely views over Lindos.   You can take a Donkey ride up but I couldn't quite decide if that was animal cruelty....!   I really enjoyed the Greek food, which surprised me.  I am not much of a 'food' person in general - if there was a wee tablet I could take instead of food I would be quite happy.  But I did love the feta cheese, Greek yoghurt, the dips and the lovely lamb recipes.  I have been eating Greek yoghurt with nuts for breakfast this week so I can at least pretend I am still on holiday...

We got back in the early hours of Sunday morning, so it was back to a bump with work on Monday.  It has somehow seemed a busy week and I feel quite drained.  I think its probably just having been so relaxed on holiday and then trying to wind myself back up again and appear enthusiastic haha. 

In the time I was away one of my fellow LLTGL advocates Kirstie Tancock had become very unwell with rapid onset chronic rejection.  She was in hospital when I left and at this time they had told her it would be palliative care and that she wasn't suitable for  2nd lung transplant.  Then there was a sudden turn around and they decided to re list Kirstie but also told her with 80% antibodies she was unlikely to get a match and only had a few weeks left.  24 hours later she had her 2nd double lung transplant, was out of ITU a couple of days later and is now making a remarkable recovery on the main ward and hoping to be going home next week! Wow!  My good friend Gerard however is in a similar situation, with severe chronic rejection, and is still waiting to hear if he can be re-listed for transplant.  Keep the thoughts and prayers going that he can be given this chance..

I will finish by going on about fundraising again - this Sunday is the zipslide!!   I am not feeling nervous just now but might change my mind when it's time to actually jump and fly across the Clyde!!  At least Andrew is doing it as well so no backing out.  We are doing great with the amount raised as a team and thank you to all those who donated.

Sponsor us here

Long time no see...

I have yet again neglected my poor blog!  I am finding it harder to write since I made it private, because I have lost so many readers - I am not sure if people didn't think they could ask to be added to the list - but regardless, I am not sure if I am really writing to anyone... (other than mum!)

I have made a great recovery from the shoulder surgery and was discharged from physio and clinic last week.  The only remaining symptom is some pain lying on that side, but apparently that can take up to 6 months to resolve, so I am not worried about that.   I am glad its over and done with anyway :-)

I have had a busy July but with lots of fun times!   I had my lovely friend Louise and her family staying for the weekend and we had a great time visiting Loch Lomond, playing with the kids and a trip to the Science Centre in Glasgow.  If you haven't been, its well worth a visit.  Andrew wants to go back because he didn't get to finish playing with all the displays....

Last weekend was the busiest so far.  We went down to Hawick on the Saturday for Andrews cousins 40th birthday celebration, which we enjoyed with a fab BBQ.  

Then back to my mum and dads for a weekend of celebration for Uncle Hugh's Golden Jubilee of Ordination.   There was a celebratory Mass, followed by a concert produced by the parish, on the Sunday.  The effort that had gone into this celebration was staggering!!  On the Monday we had a family and friends celebratory meal.  We had themed the night as 'theatre' given Uncle Hugh's love for all things theatrical.   I had great fun making a table plan based on a theatre stage, and matching table names.   We had a quiz, mum wrote a great Ode, I handed out mums home made tablet dressed as an usherette, and the lovely Trina Milne (a cousin of the mums) did an amazing cabaret act.  All in all, it was a great night.   

Parish Choir

My Table Plan

Trina Milne

Tablet anyone?!

We also managed to squeeze in a trip to Mill Farm with Kelly, Andrew and the wee ones...Alana and Jake.  I think I might have enjoyed patting the animals more than they did haha - it was more the allure of the bouncy castle for them.   The great weather definitely helped to make it a fantastic weekend all round.

It was National Transplant week recently, so I gave a talk to medical staff in Edinburgh about my experiences.  It was part of a conference called 'Demystifying organ donation'.  I also took part in the Anatomy for Art charity auction.  People had to contribute post card size art works about organ donation, and the funds raised were donated to LLTGL.  My wee work sold for over £20 and then got voted as favourite art work!!   Nothing to do with the fact I kept telling people to vote for me hahahahaha! 

We are now in need of a break ourselves, somehow managing not to have taken any annual leave since last November...!  We are off on a last minute trip to Rhodes and then at the end of next month, going to Bruges for a weekend with Claire and Giuseppe.  I can't wait!!

Also coming up is the Zip slide on 18th August, which both myself and Andrew are doing.  I have also roped in some friends and my cousins Jenny and Fiona.  The team are doing well with sponsorship but I wouldn't be my mothers daughter if I didn't post the link...again!!

SPONSOR THE TEAM 

Recovery

This week has been better for the shoulder pain, and the physio was really pleased with me last Friday -she said it was the best range of movement she had seen in someone 1 week post surgery :-)  At least I felt there was a benefit from doing those exercises when it was really sore!   She said it does take 6 weeks for initial healing, then another 6 weeks before fully recovery.  I still need painkillers during day (but not really strong ones) and it's a long way off being able to put pressure on that side.  I can't quite get arms high enough for hair washing yet - Andrew having to relearn hair washing he had to do when I was ill pre transplant.  I don't think it will be too long before I can drive again though.

Unfortunately, although the shoulder is getting better, my chest started to get a bit dodgy.  I had transplant clinic last week and overall had good results.  Chest xray was fine, oxygen saturations perfect but lung function was marginally down.  It is normally about 2.99L (107%) and was 2.88 L (98%).  They thought it was probably the pain from shoulder stopping me doing the tests properly, so just advised CF clinic to recheck in a month.    After I came back however, I developed a really annoying cough!  It felt like a cold virus to me but has persisted over the last week and I am feeling a bit off colour.  Just that general 'not quite right' feeling.   I went to CF clinic yesterday and my lung function was 2.88L again (good that no drop!!) and they decided to put me on 2 weeks of oral antibiotics just to make sure any possible infection clears up.  It might just be related to having had a general anaesthetic, or bad luck picking up a viral bug.   I don't feel too bad really and I think after a few days of antibiotics I will probably be feeling much better :-)  Hopefully good enough to head back to work on Monday as planned!

Mum has been looking after me since the surgery -she has become very adept at making cappucino with my coffee maker haha and toasting my crumpet to a precise level of crispiness.  Seriously though, it's so fab having someone around to help me and for company - otherwise I would go stir crazy being off work but not able to get out and about.   She has gone home now, so it's rather quiet in the house ;-)  Mum doesn't realise that when she is busying about the house, she sings constantly.  No particular song - more of a "la-dee-da-de-da" to various tunes.  See what I mean by it being quiet now...?!

It was Andrews Grans 94th birthday at the weekend! Wow!  I wasn't able to visit as was unwell, but Andrew went with Anne and John to visit her in the home - and take a cake for a wee celebration.   I had blogged before about how unwell she had become, being in her bed and very frail.  Well she made a bit of a remarkable recovery and is now up and about again in the home!! 

Last week I went to the design show for the student, Mike, who was doing the design project around organ donation.  The final results were really interesting.  Part of the design was around the paperwork that the donor family have to complete before donation - he had created a booklet format, with carbon copies, so that the family could take this booklet home, as record of the donation - with a front cover where hand prints could also be added.  It is common after donation (especially from children) for the family to want a memento, such as a hand print or lock of hair.  It was a nice concept to tie this in with an actual record of donation which could be held by the family.  Another part of the concept was around the idea of a donor writing a 'good will' message when they sign up to the organ donor register - to be given to any recipients.  Interesting idea!    The thesis itself was thought provoking and was based around the rituals of donation and the connections between donors, donor families and recipients.   It was really interesting to have been part of the development of these ideas.

This weekend we are having Andrews friends over to stay, so hopefully I will be feeling much better.  I have pre warned them all that I am not making up beds or running around though - they know where the beer is kept and that is all that's required :-)

Quick Update

Surgery went well, and I managed to get myself released on the wed night!  It has been very painful but getting lots of painkillers and both mum and Andrew running around after me.  Chest appears to have been absolutely fine with the anaesthetic.

Off to transplant clinic tomorrow for check up anyway, so that's quite handy to make sure everything is still A-ok.

Not going to write much just now as its hard to type one handed, but will update soon!

Poor neglected blog....

I can only apologise for the lack of posting.  I do post on facebook regularly,then forget that all my blog readers can't see those posts!!

I am going in for my shoulder surgery tomorrow so thought I better update before I am reduced to one hand typing for a while :-)  I am a bit nervous about it - not so much the surgery or anaesthetic, but more the rehab afterwards and how long that might take.  I am not known for my patience!  Mum is coming to help me out, dad has scheduled shifts and Andrew will be off on Thursday to make sure I am ok once I am home :-)  Seb of course will not be interested at all and will just do various things to wind me up...:-)

Now, to summarise the last month:

We celebrated Irene's 60th birthday with a 1950s rock and roll party.  Of course we all entered into the spirit of dressing up, with amusing results.

I finally managed to paint the wedding picture promised to Claire and Giuseppe  - in my defence we were waiting to see the colour scheme once the house was decorated :-)   I am pleased with the final picture!  My brief was to have little birds in it, some duck egg blue/beige to match decor and some yellow/lemon to match a feature piece. 

At the start of May I had an interesting meeting with Mike (design student), Erin (mother of young boy who donated organs) and Deborah (organ donor co-ordinator).   We were giving Mike feedback on his design project based on organ donation.  I am looking forward to seeing the final work at his design show!   On a similar note,  both myself and the lovely Erin have been asked to speak at a conference in July.  This is for staff involved in the organ donor retrieval process and in ITU, so is a chance to give a real life perspective to their work.



Work has been busy and we have not introduce and additional 'on call' rota for during the day.  I am not quire sure how this will work but it has made me much busier so far.  This might all settle down though, so only time will tell!   I did have a nice surprise at work though, when a patient left me a lovely goodbye gift!  She has moved out of sector, so transferred to another resource centre.  It is always nice to be appreciated though :-)

In the (very few) sunny days, we have been out in the garden getting it all ready for Summer.  We went on a mad painting spree, doing the fences and painting the hut green.  The when Andrew was at work I painted the bench, wishing well, bird table, flower beds and anything else I could tackle with a brush haha.  It's looking a lot fresher now!  I was unable to paint however without getting COVERED in paint myself!

 Seb has enjoyed a few trips to Mugdock park, which he loves.  He has however developed a really annoying habit of hanging miles behind us (just sitting at the verge) to see if I will call him - because he knows that means a treat!!!  Seb is the small white dot circled in red...

And finally, Team Glasgow have been organising some sponsored events this year (the ball is only every 2 years). Myself and Andrew are zipping across the Clyde from 140ft on the famous zipwire on august 18th! This is part of Team Glasgows sponsored events for The Willow Foundation. This is a charity who provide special treats /days out for adults with serious illness. Lots of my friends have had fantastic days out when in the darkest days of their illness. My dear friend Fi (who is no longer with us) had an amazing day out with her sister and family and I am glad she got that opportunity. Dig deep - remember you are sponsoring Me AND Andrew ;-) :P 

All donations are going through a group Team Glasgow page as this is a team effort :-)

 http://www.justgiving.com/sponsorteamglasgow

5 Wonderful Years!
 

Yesterday was my 5th transplant anniversary - what a fantastic milestone if I do say so myself ;-)  These are the lovely flowers Andrew got me.   I was at work in the morning, running around telling everyone how important the day was haha!  In the afternoon I was giving a talk at the Regional Collaborative Meeting - this is 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 was really there to give them the recipient perspective as they never actually hear what happens to the organs afterwards or meet anyone who has been saved by their good work.  It was great being able to give this insight, while also being able to emphasise how grateful transplant recipients are to their donor and families.  It put a face to a process that many of the doctors find difficult.   I tried to keep things fairly light hearted as well - I noticed they had made an organ donor card cake (to celebrate the increase in donors over past year) so my opening quip was to thank them for baking me an anniversary cake  :P

It just seems like yesterday that I had that call.....but looking back now, I have also done so much since then! 

Back to work in a permanent post for past 4 years (only few days sick leave and that was 3 yrs ago!) and becoming much more involved with projects at work, knowing that I am going to have the energy to see them through.  

Lots of holidays with Andrew - Paris, Berlin, Sorrento, Cyprus, Cape Verde, Nice....to Florida with family and big family holiday to Tuscany, to Copenhagen with my best friend, to London with Victoria and lots of sneaky weekends between.   13 weddings ( and being Maid of Honour for Sarah), several Christenings and becoming a Godmother to Caoimhe.

Countless organ donor desks, talking to schools, to NHS Staff, pulmonary rehab teams, CF teams..and goodness knows who else :P  Lots of fundraising - the big Team Jac walk raising over £26,000 for LLTGL and then as Team Glasgow, our posh balls, halloween parties, swap shop - together raising £26, 240 to date for LLTGL, Butterfly Trust, CF trust and Gartnavel CF unit :-)

We somehow managed to build an extension in the middle of it all and redecorate the whole house - madness ;-)   Have also met so many lovely people over the past 5 years!

So, yes where did 5 years go?  I know exactly where they went!  It's great that I have been well enough to do all this and I hold onto how lucky I am every day.  Yesterday we were thinking of my donor and her family - and celebrating the gift they gave us all.

It's been an emotionally taxing week - I also gave two talks at George Heriot school earlier in the week.  So to be honest, I plan to not talk about organ donation for a little while!  I think we will just chill out and enjoy ourselves this weekend  :-)

Birthdays and Organ Donation Talks

Seems to have been a busy few weeks for organ donation work - and people will no doubt have read the great news this week that donations have increased by 50% in the last 5 years.  This is largely due to the amazing work of donor coordinators working in hospitals.  These nurses are independent of the transplant team and are able to speak with families in a sensitive manner about the idea of donation.  Allowing families this opportunity has led to a marked increase in those agreeing to donation.  To increase this even further, we do still need people to sign up and make the decision even easier for their loves ones.  I am actually not pro opt-out (being introduced in Wales) because I do think that removing this choice could paradoxically increase the number of relatives refusing.   There are many changes to infrastructure and management of organ donation that can make a huge difference, all of these issues currently being tackled by the organ donor task force.  Finally though, from the recipient perspective, it is important for me to know that my donor gifted these lungs to me and that her family agreed.  I would not like to think that they had been just taken, as it is not my right to receive them.  It is an honour!

I helped out some media students last week, who were creating a short film about organ donation as part of their module.  Victoria was planning to meet them for a video interview but unfortunately became unwell with the 'flu virus, so I stepped in at the last minute.  They filmed me answering various questions on the topic and will be editing this within the next couple of weeks.  I will get to see the final project but whether I share it will be dependant on how cringe worthy I am!!  I also met with another student doing a masters in Design who is completing a project and dissertation around organ donation - with more emphasis on the link between recipient and donor/donor family.  It sounds a fascinating topic and I look forward to seeing the final work when it will be on show at the art school.   I have two upcoming talks  - one with George Heriot School and another with at the Regional Collaborative Meeting (main people involved with organ donation in Scotland).  It is all rather fitting given my 5th transplant anniversary will be on the 25th of this month.....although after that I think I might not want to talk about it for a wee while!!

On a lighter note it was my birthday last week and I was 34 years young!   I had a lovely day :-)  I did have to go to work in the morning but I left at lunch time and went into town to meet Andrew for a wee lunch.  Then mum and dad came in the afternoon and brought dinner and cake!  I got lots of lovely gifts with a dominant theme of animals, mainly owls haha!  There are so many owl themed gifts in the shops just now that I now have a wide selection of owl products ;-)   

Panda card from andrew!!

New shoes!

Hotty Hooty (for microwave ;-))

Owl things

Cake!

Seb eating my nose!

The last few weeks have also been nice and dry, so Seb has been on lots of long walks at the park or river.   Seeing him running around like a fluffy mad thing does make it very worth while!

After his bath!