victoriaglen.co.uk

Hilary Boardwalk

Perth at Night

The above is my favourite picture!

I’m going to be completely honest and tell you that the epically long journey to Australia from little Glasgow completely scared the bejesus out of me! Bad enough when you have a travel partner but when doing it on your own it’s scary stuff!!

Glasgow to London Heathrow – I got up pretty early because although I didn’t feel excited I think my body wanted me to be and 8am wake-up call it was! My dad said he was going to pick me up at 11am but showed up 1 whole hour early. Here is me in the car park with my bags -

We got the last minute stuff together and headed to Glasgow airport at 11am. When we got there I went straight to the BA check in but was told we I was half an hour early so dad and I went for a coffee while we waited. After half an hour we went to check in and I’m completely surprised but my suitcase to go in the hold was actually under 20kg!! Shocking stuff, so no need to off load anything. I left my dad to go through security with my little case and carry on bag. It was quite funny because my little case was put aside to be looked through and the man said to me ‘Do you have a knuckle duster in there’ I had to think what he was talking about and then I remembered it was my little clutch bag haha! So I was let through. After that was pretty uneventful.  I had a little trouble with my ears for some reason on the flight. Here is a picture just before we took off I think it’s rather pretty and to be honest Glasgow was brighter than London!

London to Hong Kong – I had been given strict instructions to follow flight connections from Terminal 5 to Terminal 3, this was rather simple and I got on a free bus to Terminal 3. On the bus I managed to sit next to an old lady who must have done the sign of the cross around 15 times, maybe she thought I was a sinner!! We arrived at terminal 3, I got my boarding pass and got me some lunch. The choice in Heathrow is superb and I opted for some Yo Sushi. I know I’m going to Hong Kong and I fully expect to get more sushi when I’m there (Veggie of course). Then it was onto the plane. I have an isle seat and I’m sitting next to an older couple from Wales. It’s funny I’ve been sitting watching Lady In Black (which by the way was utter crap, what’s with the ending?!!) We got given our dinner around 8pm which was Chicken, potatoes and veg – to be fair it was actually quite nice but I was hungry so would eat anything but my friends would say I can eat anything anytime!! Anyway after I had finished I needed to do my insulin as normal and I could hear the lady saying to her husband ‘Look she’s diabetic’ and then talking a bit about me, I don’t think she realised I could still hear her with my headphones on. It’s now 9pm with 8 and a half hours of flying left so I might try and have a wee nap. I shall fill you in if anything more eventful happens!! Well I’m now in Perth at my family’s house so this is me reflecting back before I forget. I had more of a chat with the Welsh couple and it turns out the lady is borderline diabetic so that’s why she was so interested!! I had a few hours sleep and watched a couple more movies – The new Muppet Movie, My Week with Marilyn and something else I can’t remember now. Walked of the plane in Hong Kong and I was hit with a wall of heat and it felt good!!

Hong Kong to Perth –

I’ve been to Hong Kong before (around 6 years ago) but I can’t really remember anything about customs etc. One thing I can tell you for definite is that they have it backwards!! On arrival you are greeted by a woman wearing a face mask like you have to wear post-transplant or if you’re worried about catching SARS. You walk through an area that takes your temperature, trying to weed out the sick and infectious!! Good job my temp is pretty stable or I might have been put in quarantine!!  You then go through security as normal but they don’t have the liquid restrictions at this stage, so you don’t have to clear plastic bag it. You do however have to remove laptops and mobile phones from your bags – it says you have to do this in UK airports but they don’t enforce it.  So I got through security and decided to eat me some lunch. I wanted proper sushi but couldn’t find a place so opted for some pork and noodles, it was nice! I then headed to the departure gate which to get there you have to use the train, it goes from terminal to terminal so you don’t need to go outside! When they started boarding passengers just before you go on the plane they take any bottles of juice or water off you (good job I never purchased any water) and then search your bags! To me this is backwards but I guess if it works for them then who am I to tell them any different!! The plane ride was pretty uneventful. It was a smaller plane and I spend most of the time sleeping and watching Perez Hilton Access All Areas – sad I know but hey ho!! I was sitting next to a guy I can only describe as the Chinese version of my friend Harminder haha I just got an H vibe off him!

I arrived in Perth with no problems at customs and now I’m in Ross and Brigidas house contemplating sleep but I’ll probably watch some stuff on the laptop! I am quite knackered but have possibly went beyond tired and now I’m wide awake!! Oh and I have lovely old lady cankles again! Fingers crossed they are gone by the morning!!

This may sound strange to you all or you might think I’m slightly weird but my little cat Misty was a hero of mine in her own special way! Today my parents had to put her to sleep because she had liver failure! After over 15 years with us she’s gone and is already missed!!

I’ll get to why she’s a hero after I give you some back story on her.

We had a cat called Fluff who was mainly my sisters cat, he died after over 20 years with us and although he wasn’t really mine I was still pretty upset. I’m not sure how long it was after Fluff passed but we went over to my cousin Paul’s house and his cat had had a big litter of kittens. I remember going in and my mum saying we are not getting another cat so don’t get any ideas, I was maybe around 12 or 13! We went in and visited, I played with the kittens and just fell in love with one that was so strong willed but stupid and had climbed up to the highest shelf and couldn’t get back down. She was grey with little white paws like mittens, with the most beautiful face I had and have ever seen on a cat. My mum must have fell in love too (although she’ll deny this) and told me I could have her! We brought her home and she definetly lived up to her reputation!! My dad played fought with her using a glove and she was as rough as rough could get, she would chase the neighbours old dog and she would let you know if she wanted anything!! I remember one time I had a sleepover for my birthday and we were getting the loft converted at the time, there was no floor down and Misty decided to climb along all the rafters way out of all our reach, she was still only a tiny little kitten. Then when she was just over one she became a mum to five gorgeous little kittens some of which she out lived! She was a good mum protective but able to let go when she needed to!

When my health started to go downhill (actually whenever I wasn’t well) Misty knew it and would go to sleep on my legs or near me, her way of showing me she was there. When I moved out of the house and into my own flat I couldn’t take her with me, firstly I wasn’t allowed pets and secondly she had never been a house cat and it would have been unfair to make her one then! I missed her a lot so much so that Gregg bought me a little mechanical cat to try and fill a little bit of the void but it never could!! As Misty got older the feistier she became, she loved getting stroked but only on her terms! She was like a grumpy old lady, fat but still with that beautiful face.

Today she started showing signs of really being in pain and my parents took her to the vet who said that under her mass of fur there was nothing to her, she had lost all her fat and was wasting away. I feel bad that I didn’t see this, when she knew every time I was ill. She must have been in major pain for quite a while and we never noticed until she showed us outward signs. I guess looking back there was signs we missed, at my sisters birthday Stephanie lifted her and held her for quite some time. Normally Misty wouldn’t allow this but that day she did. I’m sad I wasn’t there with her when she passed but my dad had told me he held her little paw so she wasn’t alone. The last time I seen her I didn’t even give her a proper cuddle just a little stroke goodbye, I think that’ll be a regret I’ll hold onto!!

So why is my cat an unsung hero? She was a major comfort to me when I wasn’t well, she grew up by my side, she handled the last stages of her life with as much grace and dignity as she could and she struggled through eventhough she must have been in pain. Mainly she was my hero because I loved her. Some people might read this and not fully understand it! Maybe you need to have a pet to get that love but trust me when I say a little piece of my heart went with her when she passed!!

Sleep peacefully Misty pain free and finally with your babies. You will be missed by all the family and please know that although I wasn’t always there I missed you a lot!!

I’m sure that you are all aware that I am one of 5 Scottish Advocates for the organ donation awareness charity Live Life Then Give Life, I have been one for nearly two years now!!

The weekend just past I travelled down to Ealing to meet up with my fellow advocates and trustees for a weekend of organ donation madness!! I always learn a lot from these weekend and am inspired a lot by the drive and talents of the other advocates. We discussed lots of different topics the perfusion machine that LLTGL is funding, Robyn’s Rainbows, the Speaker Project, organ donation education in schools etc. There was a vast number of subjects covered over the weekend, far too many to mention but it’s safe to say that between us all we make a very strong team.

I just want to make you aware of a few projects my fellow advocates are working on and any way you could support them would be lovely! Firstly we have Amelia’s Campaign – Amelia had a heart transplant 10 years ago and to mark the occasion she has been heavily fundraising. See the link above for more information on Amelia’s Campaign.

Next we have the lovely Kirstie Tancock who like Team Glasgow is organising a Ball. It will take place in Exeter so anyone who lives near it would be lovely if you could attend and support Live Life Then Give Life.

Then again don’t forget about us!! We need your help too. Prize donations are needed and also would love if more people out there would buy a ticket to attend it’s going to be an amazing night!!

They took pictures of us at the weekend for the website and I just want to warn you now that in the individual shots I look like I eat babies, awful but hey ho what can you do!!

It’s funny how you get this romanticised view on love when you’re little from watching Disney movies and the like. I remember watching my favourite Disney movie when I was wee – The Little Mermaid and thinking one day I’m going to get my Eric and he’s going to be as amazing!! I did at one point think I got my Eric even if it was only for a short short time. I remember at the time looking back on those old days and thinking wow he even looks a bit like him, funny but like all things it was not destined to be anything more than it was!! One thing I don’t think that this Eric realised at the time or even realises now is that he came into my life at a time when I needed him. I was young and very very insecure with myself. This amazing man who was so handsome took an interest in me and for the first time in my life I felt attractive! He doesn’t know how much he changed me but he did, such a brief passing in time made an enormous impact on me as a person!! I will always be thankful to him for that and hold a special place in my heart for him

Sorry about the love post but it’s coming up for a year of me being single this sunday and it has got me thinking.

I’ve only experienced love once and it was with Gregg, he was my first and so far only love. In fact he was my first and only relationship. Why? Well I’m not really sure! I’ve had opportunities and chances at it with other people but it never felt right and I always found some way out of it. I’m not sure if CF was a barrier! I had heard lots of horror stories about boyfriends not being able to cope with the reality of CF and I never wanted to burden anyone with it. When I met G it was the start of my downward health spiral and I think maybe I just needed someone at that point in my life to love me and to fight for me. You don’t notice at the time that you are falling apart but when you look back it’s pretty obvious. I think I let my guard down which is probably a good thing and I need to do it again.

So I’m a year single on sunday with no prospects for a new relationship or love and it doesn’t really bother me! For the first time in a long while I feel happy being on my own. In this year I’ve dated and I’ve seen people but nothing serious. I’ve gained two pretty good friends from my dating – James and Rory who I hope to be friends with for many years to come!!

I’m looking forward to my trip to Australia to relax, unwind and maybe discover a little more about myself away from all the people I see everyday!! I’ll leave you with a love song from my real life Eric (for a brief brief moment)

Ellis stopped all her treatment friday and passed away peacefully today.

She was 20!!

You can shed tears that she is gone,
Or you can smile because she lived,
You can close your eyes and pray that she will come back,
Or you can open your eyes and see all that she has left.

Your heart can be empty because you can’t see her
Or you can be full of the love that you shared,
You can turn your back on tomorrow and live yesterday,
Or you can be happy for tomorrow because of yesterday.

You can remember her and only that she is gone
Or you can cherish her memory and let it live on,
You can cry and close your mind be empty and turn your back,
Or you can do what she would want: smile, open your eyes, love and go on.

Sleep peacefully Ellis and once you’ve had a rest get the party started!!

It’s funny I think I’v drafted 3 blog posts in the last few weeks but none have ever ended up sounding sincere! I started by writing a blog about my favourite holidays of the past in honour of the fact that I’m going on my first holiday in nearly 4 years!! I’m off to Australia to visit my lovely family in Perth for 3 weeks and I’m very excited about it!!

Then I started writing one about life events putting things into perspective. I was at clinic last week and it turns out that my last cough swab showed that I was growing pseudomonas on my lungs. This is something I grew before transplant and never wanted to contract again. It got me down a little because it means that until it’s gone I can’t hang around with Jac and Kirsty! I had another swab done and I’m hoping it will be clear because I had a cold when the last one was taken! If it’s clear I can go to the Live Life Then Give Life advocates weekend but if not I’m stuck in Glasgow with zero money! Like I said this got me down but then I got home and found out one of my online CF friends Ellis who has been fighting chronic rejection decided to stop all her treatment and be at peace. I realise that if Ellis can be so amazingly strong and make such a hard decision I can put up with a little bug on my lungs for the time being. Have a little read of this blog post by Ellis’s mum.

Later I found out that another online friend Alan lost his battle with Cystic Fibrosis and I kid you not it was one heck of a battle!! Alan needed a transplant, infact he needed on as long back as I did! We used to chat about him being assessed when I was on the list but for various reason he wasn’t eligible. Another friend of mine Kate and Alan started a campaign to get him assessed in America At Duke Hospital who are known for taking more risks – here it’s Newcastle but I think even they thought it would be too risky. Sometime Transplant is just too risky and although some money was raised Alan just became too unwell!! The raised money was donated to CF Charities in the UK and USA. Alan passed away on friday. He’s now up there with all the CF angels pain free and breathing easy and as a CFer all we wish for is to breath easy. Rock on Alan and keep an eye on us all!!

This happening had prompted me to write a blog on all the CF friendships I have had and how being part of the CF community means you have to be able to cope with numerous losses throughout your life. I spoke of my childhood friends Peter and Amanda who I lost before cross infection rules were inforced, I spoke about how all the friends I had from these days are no longer with us and that after cross infection I opted to shut myself off from the CF community but when transplant was mentioned I needed to rejoin because I needed the support from people who understood what I was going through. In re-joining the community I had to open myself up to heartache and I can tell you I have been heartbroken a good few times. I do feel that with every person who passes my heart hardens a little and it almost become a little more clinical but maybe that’s just me!

*Added* I just found out one of the Gartnavel people passed away at the end of last month! I’m sad that I never knew about it and didn’t get the chance to pay my respects but I know he’s up there partying hard making us on earth proud!! That makes only 7 of the Glasgow crew left that I speak to! There used to be a good few more, no one else is allowed to pass away – not this month anyway!!

I’ve had to cut off my lovely long hair which has been slightly heart breaking and I’ve been thinking hard about whether or not I want a brand new look. New me and all that! I feel like things inside me have started to change a little the past couple weeks and I feel like that can only be a good thing, I’m curious how things will turn out. Here’s a picture of my new hair

I’ll fully admit I don’t have a clue how to live my life right now. How to move forward and be where I want to be!

I could blame a lot of people or things for why I seem to be stuck – I could blame my friends for being all happily married or coupled up and forgetting about their only single friend, I could blame younger me for doing a degree straight out of high school and not thinking things through properly, I could blame CF for stopping me from living but ultimately it all comes down to me! I am preventing myself from moving forward from being the person I want to be. How do I stop myself doing this? I don’t know really! Maybe what I need to do is make a big drastic change but that scares me a lot and I don’t know if I’m strong enough to do it alone! My main problem is that I haven’t progressed any since I got my transplant same job, same life, same lonely feeling. It seems no matter what I try to do just now nothing ever works or comes out of it. How do I change that, how do I get my confidence back? Any advise would be appreciated.

I feel like all the fun has been sucked out of me and who wants to be around that!! I’m sorry for the negative posts right now but figuring out your life is tough!

How do you thank the one person in your life who has been by your side through everything? I have no idea and it’s probably why I have waited so long to write this.

My mum may not know this but she’s my hero. For as long back as I can remember my mum has been by my side during every single hospital clinic and stay. My mother and Father team brought me up in such a way that I was able to be more than just that girl with Cystic Fibrosis but they never made it a secret either. They managed to find a way to make me confident in myself even though my body sometimes failed me. With facebook now a days you have easier access to see how parents with CF children cope and how much freedom etc that they are given, now I’m not saying this is all CF parents but sometimes attitudes shock me and the children are wrapped up in cotton wool. My parents let me do everything my siblings did and maybe just a little bit more but that wasn’t because I had CF that’s because I was the youngest!

I remember when I used to stay in Yorkhill my mum would stay too in the beds provided for parents. If we got a room it was brilliant for her but if the rooms were all taken she would have to sleep on one of those reclining chairs. My dad worked and looked after my brother and sister but my mum stayed with me most of the time. Hospital stays were no different to everyday life I did my school work , I played with the other kids (this was back before cross infection was truly seen as bad) and I had my usual bedtime. I would lie in my bed and hear the other kids running around jealous at the time that they got to do what they wanted but now looking back I know that structure she put in place was important and shaped me into who I am today.

When I started to get really sick and transplant was mentioned she didn’t try to force my hand she let me decide what was best for me. I don’t really know how that period of time made her feel, she has always put on such a strong face when it comes to my CF and the possibility of me dying. I guess only my dad really knows how it effects her. Did she used to go home after seeing me in the hospital and cry?

During my time on the transplant list again she was always there cleaning for me and helping me dress on my really bad days. Nearly every false alarm call she was in the ambulance or plane with me. When my call finally came I am ashamed to say I can’t really remember how she took it but I assume she put on that brave face again to assure me everything was going to be ok. It was and she got her healthier daughter back but with that came the realisation that she would have to let go somewhat and I really think this was the hardest thing for her. She was so used to being there for me all the time, for me needing her and then all of a sudden I was much healthier and I had a boyfriend to lean on. So she and my dad went on a holiday and left me to get on with things.

I honestly don’t know how to thank her and this blog doesn’t cover half of what she has done for me but I think she know how grateful I am!! I may not say it all the time and I might be a bit of a pain but I love her with all my heart and am eternally thankful to her for all she has done for me.

So mum this is my card to you! To let you know that I love you and I appreciate every single thing you have given up for me, every tear you have shed for me and every laugh and supportive smile you have thrown my way. Words really can’t do it justice!! Happy Mother Day Annie McGlone!!

I don’t even know how to follow my last entry on here it was pretty epic haha that word makes me laugh ever since I heard a 4 year old girl say it at the musical theatre class!! To be honest I hate the word but I’m using it in this case, so there you go!!

We’re having another Ball!!

Indulge yourself in a night of Hollywood Glamour with Team Glasgow and raise money for the Cystic Fibrosis Patient Fund at Gartnavel General Hospital.  This CF unit caters for the West of Scotland CF populations and all funds raised go towards improving facilities for inpatients.

The ball is being held at the Radisson Blu hotel, an award winning hotel in the centre of Glasgow.  The night includes a glass of bubbly on arrival, a three course meal with wine, our amazing tombola, raffle, silent auction and entertainment to knock your socks off!!

Dress code is evening wear.  Not fancy dress – just glamour and indulgence!

Tickets
Tickets are priced at £50 per person.  Tables seat 10 or 12 guests – please contact us if you wish to reserve a complete table.

Deposit
If you do not wish to pay the full amount at the moment, you can reserve a place with a £15 deposit.  Please contact teamglasgow3@gmail.com to arrange this.   Full payment will be required a minimum of 8 weeks before the event.

You can purchase tickets at the following link - http://www.etickets.to/buy/?e=8067