100th blog post!

So I was about to blog when I realised that this would be my 100th blog post. It's not even going to be much of anything interesting but thought it should be noted that this is my 100th post according to my blogger stats.

So on with the post that I was going to write then!

I want to share with you my favourite page out of my new 2012 diary! The diary is an Edward Monkton one and this year it is the Chicken of Prosperity on the front (last year it was the dippy donkey). Every month you have a page of something edward monkton, the month to view on one page and then a week to a page in between. This year the picture below shows my favourite page:



I love Edward Monkton and have quite a large collection of his coasters (my aim is to eventually collect all of them), I also have a teapot now and an individual teapot with its own cup.

I have discovered that you either get Edward Monkton and his stuff or you don't. Some people just don't get it where as I love his stuff.

Christmas 2011

So I thought I would start this post off with some pictures of my christmas hat collection! I love the christmas hats and I normally end up getting a new one each year somewhere in the month of December. They have been gathered from all different places and they also bring great delight to my nephew and nieces every year when they rediscover them!!












Below is a picture that shows all of my presents that I got this year:
And this picture is a close up of my Edward Monkton teapot:
I love Edward Monkton stuff and was very happy to find this and The Chicken of Prosperity 2012 diary in amongst my presents!! I have a lot of the Edward Monkton Coasters and really need to make a list so I can try and complete my collection of those.

Christmas was good this year. Lots of fun was had. I got some very nice presents (as can be seen in the photo). My main present this year was a nintendo 3ds which was a complete surprise!! I didn't really know what to ask for and I did want a 3ds (mainly because I am abit of a geek and have all of the nintendo handheld gaming consoles ever since the original gameboy was released) but was more than happy to wait for it to come down in price abit before I purchased it! I also got 13 new ducks to go in my collection (I collect rubber ducks mainly but there are also some ducks in their that are made of other materials but are the same size as a rubber duck is generally!). I am now running out of room for them to fit on the shelves I have so need to purchase some more so I can display them all. I believe my total is now 95 but I think it might be higher. I have an album of them all on my facebook account but I think a photo is missing on there so it maybe over 100 ducks that I have.

Other notable presents of the year: A duck cake mould, a travel mug that says "Keep Calm and Drink Tea" which will come in very useful when I go to school every tuesday as the cups must have lids on in the classroom in case they get spilt and their travel mugs are all old and make the tea taste horrible!, my aerolatte moo (It's a frother thingy ma bob that means you can make thick milkshakes at home and also make really frothy thick hot chocolates and stuff like that) and my teddy bear warmer (it has a microwave heat pack in it, so that your teddy acts like a hot water bottle, hes amazingly soft and will be going with me on Beaver sleepovers etc!).

I don't think there are any presents I didn't like this year and feel very lucky and very grateful for all that I have received because it shows people have thought about me.

I woke up at about 6.15am christmas day morning (apparently my nephew had been awake since 5.30am so I feel lucky that I got an extra 45mins more than my mum, dad and sister did!). We opened stockings and went downstairs at about 7.30. My dad and nephew then came downstairs dressed as santa and rudolph (my nephews idea as his reindeer costume still fitted him from last year and he wanted to wear it but needed someone to lead him downstairs!). Me and my nephew then opened presents. I had all of mine open before breakfast and we decided to take a break for breakfast at about 8.30am as he still had loads to open! After breakfast he finished opening his presents and then my grandma and my sister opened theirs. For the rest of the morning we just chilled out abit, examined some of our presents. We had lunch at about 1pm. It was extremely yummy. I always love christmas dinner with the turkey and trimmings. In the afternoon my brother, his partner and my nieces came up for an hour or so after we had finished eating. After they had left my parents opened their christmas presents. By this time it was about 5pm and nobody was feeling hungry (unsurprisingly as we didn't finish our massive christmas dinner until about half 2), so we played some games instead! Once my nephew was in bed at about half seven, I did my treatments (as unfortunately you don't get a break from things like nebulisers, physio and tablets for CF even on christmas day) and then played a couple of games of Blokus duo with my mum, while my sister and dad played some games of Othello. At about half nine we all went to bed as it had been a long day after being up so early!!

So that was how I spent my christmas day!! Boxing day I spent at my parents house also mainly playing scrabble with my grandma (We played five games and I won 4 of them-she was not very happy about this at all. She is a very sore loser when it comes to scrabble as she normally plays twice a week so doesn't like the fact that I beat her and probably only really play a few times a year) and then my brother and nieces came up again for the afternoon for some tea. After another buffet style tea I came home and took the photos of all my presents and did not much else. I spent some time online having a look at some sales and brought a few things and updated my amazon wishlist to reflect what I had received for christmas (some items were given to me that were on it but not bought from the list so they needed removing). I also then got a few things off the list myself that had been reduced to some good prices.

Today I have sorted through all my presents and found places for them all somewhere within my house (They got split into 3 piles- study, bedroom or kitchen as the stuff that would stay in my living room was already there after I took the pictures last night) and have been moved to the appropriate places. I have a pile of dvds sat by my TV ready and waiting to be watched. They will take a while to get through though as there are 2 films and 5 boxsets of some tv series (The big bang theory S4, House MD S7, Chuck S1-3). I look forward to watching them all though. I have never seen Chuck but they were given to me by my friends and we have extremely similar TV likes (I would say 90% of our TV series dvd collections are identical) so I trust them that I will love it if they have given it to me.

This is a new decoration which I brought in September when I went away for the week. I got it from a christmas shop in Holt! I love my christmas penguins and have so far managed to not knock them off- which is quite impressive.

My tree!
The tree again from the other side

Artfully draped tinsel!! (Yes I know the sides are not even but I can't be bothered to fix it)

So.......

It's the 23rd December, christmas is nearly upon us and its certainly been an interesting lead up to it!!

I went away to my friends house at the weekend for a few days and we then went on to a cottage for a few days away there. Things were great while we were at her house but apparently a difference in opinion on the subject as to how friendly you should be with your ex-lecturers/teachers means she is no longer really happy with me. Since coming home on wednesday she has not been replying to any messages I've sent her and she left quite quickly after dropping me off- not even stopping for a drink before leaving again. Ah well I'm sure things will be fine and if not I guess we weren't as good friends as I thought we were. I'm not upset with her over her views and can respect that we have differences in how we see things but she doesn't seem to feel the same way.

Yesterday I also managed to have abit of a blazing row with my brother over text message which was interesting to say the least. It basically boiled down to the fact that ever since we've had our own money and the ability to go out into town and spend it however we like (so about 16 onwards when people start going into town now it seems and generally getting drunk- not me just my brother!) I have always helped him out when hes been short on money and needed help. This has happened in varying amounts and I have rarely ever said no. So he always thinks whenever he needs money he can just ask and it wont be a problem. Well this timeI said no as he still owes me money from August and he didnt like it and alot of things were said and I reminded him I'm not his personal bank. He also then tried to guilt me into changing my mind by saying he has two young girls and its christmas etc etc. In the end though I think it was all sorted and seemed he was having a bad morning and I got the brunt of it which wasn't really necessary.

Some more positive things though:

• all my presents are wrapped and delivered to the correct houses they need to be in for christmas day
• the presents I have received from people are also put away ready for christmas day and away from temptation
• I made gingerbread biscuits yesterday in christmassy shapes for over the festive weekend

I ran out of positive things for now.

Tomorrow it is my grandmas birthday so I will be going out for some lunch to celebrate her birthday with her. Then will be going to my parents ready to spend Christmas day there.

My camera is currently on charge so that I can take lots of pictures. I am looking forward to christmas day and spending it with family

Catch up

So I was going to do a photo blog to show what I had been upto since my last blog in October. However I have just realised that I have taken no photos during that time that I can post on my blog (not because they are rude but because they are all Beaver scout related and my permissions for the photos doesnt extend to personal blogs!).

So a brief summary then:

At the end of October I went away for the weekend to Lord Amory (Docklands Scout Project) with the scouts. It was a good weekend. They had loads of fun doing water activities on the river whilst I quite happily spent the majority of my time on the ship on the catering team. This meant between 5 of us we cooked meals for a group of 50 in total!! This is no mean feat when the ships galley isn't really that big and you also have to cater for 2 vegetarians!! The menu wasn't overly simple stuff either. On the saturday they had bolognese for lunch followed by pie and veg for their evening meal and on sunday we cooked a full roast dinner (with a choice of 2 meats, roast potato and 3 different veg) followed by apple crumble for dessert!!

November I went back onto IVs for 2 weeks, they went well! After my IVs had finished I went to my friends wedding which I unfortunately had to leave early from because of a sudden bout of haemoptysis. There was no warning for it and I had been feeling great all day so it was abit disappointing that I had to leave early on in the night (I didn't even get to see them dance their first dance!).

After speaking to my hospital team about it they don't know why its happened but seems to think it has something to do with residual infection from the end of IVs. It followed the same course as my bout of haemoptysis in September. They both happened 3-4days after finishing IVs and both happened despite me feeling great and being out and social just hours beforehand (or in the case of last month still being out and being sociable).

This brings me up to December. The start of December hasn't gone overly well. Just over a week ago I started with a cold and in the middle of the week I was diagnosed with a small amount of bronchitis as a result of my body trying to fight the cold and keep my usual bugs in control! So this has left me feeling alot breathless at times and quite worthless. When a walk to your bathroom is too much and leaves you breathless for 10mins you know things are not right- especially when you live in a bungalow and the 'walk' is only like 10 steps away from where you were sat!!

On a more positive note all of my christmas decorations are up, christmas presents wrapped and cards written!

10 things not to say

I am reblogging this post from someone else. Whilst I may not necessarily agree with all the descriptions underneath the 10 things the main principles stay the same!!

10 Things Not to Say

Someone posted 10 things not to say to someone with a long term illness on facebook, I thought it was quite good. Here they are:

10. You can't be in that much pain

There is always some problem I have with my body whether it be constipation, getting breathless, needing to cough, having a headache, my body aching etc. If I were to display to people every problem I had, I wouldn't be a very fun person to spend time with would I? I don't learn to 'ignore' my problems or 'get used to them', I learn to live with them because I have no other choice.

9. Stop being lazy and get a job

Trust me, I'd love to have a full time job and the wage that comes with it. Do people think I really enjoy sitting around all day, feeling useless? Getting a degree and not being able to put it to use? Seeing my friends have lots more money than me and talking about how great their jobs are? My illness is my job and trust me its not easy, I never get a day off. Remembering to charge things up, get IVs out, send off prescription requests, get my port flushed, waiting in for deliveries, picking up prescriptions, going to the hospital, planning physio and nebulisers in to my day, remembering all the tablets I need to take, trying to park close to where I need to be, holding in coughs, cleaning and sterilising nebulisers, remembering how many times i've been to the toilet!
Oh and I'm not lazy at all or at least I don't think I am, try doing everything on about the amount of energy you have the day after a long night out or when you have a cold.

8. You just want attention

Yes I have a life threatening illness and have known 20+ people die from this illness before their 30th birthday, just to get attention.... If anything I hide my CF from people and they have no idea how serious my illness is

7. Your illness is caused by stress

I'm not going to even address this, we all know CF is genetic

6. No pain... no gain!

Erm whats my gain? Will my CF improve or go away? Will I get a reward for having CF? If you go to the gym and work out you get fitter/more muscly, if you give birth you get a beautiful baby. Say this sentence to those type of situations please.

5. It's all in your head

Look at my medical records and tell me that, pretty certain my head didn't make me produce loads of mucus and give me lung damage or infections...

4. If you just got out of the house....

I take 2 meanings to this one
A) As in fresh air or speaking to people is going to cure me - I get out plenty thanks, in winter its not nice when I piss myself because I'm coughing so hard due to the cold!
B) As in because I can get out the house, I mustn't be that sick - I always have my illness, I have to learn to function with it. Its not a cold, I can't stay in bed for a few days and then get on with my life. Just because I can take the dog for a walk or drive to the shops, it doesn't mean I'm fit as a fiddle.

3. You're so lucky, you get to stay in bed all day!

Really? Would you really want to do that every single day? I know I wouldn't and p.s. I don't.

2. Just pray harder

If anyone said this to me I think I'd punch them

1. But you look so good!

People with illnesses do not have to look ill to be ill!! Why is there this belief that to be genuinely ill you must look it?!

Clinic day

So after saturday's episode I was expecting clinic to be alot worse:

However when the doctor you see is one who rarely ever does clinics and so hasn't seen you in a year, has no idea what has been going on generally things kind of get ignored. The hemoptysis was mostly ignored with no real answers as to why it happened. The topic of aspergillous wasn't even brought up this clinic (both of these things I will be chasing at my next clinic appt).

My lung function was down by 15% from my best and what I had been expecting after finishing IVs. I have been put on a 2week course of ciprofloxacin to try and help improve lung function and another appointment for a month!

Not the best of weekends

So not the best of weekends I ever had.....

It started off well. I finished IVs on wednesday morning and was feeling great. Then from about thursday evening I started to come down with a cold, most of friday I had a sore throat from a really dry irritating cough (not productive in the slightest) and so guessed it was related to the cold! Friday evening I went out with friends to pizza hut and then back to one of their houses to see their dogs! I got home at about 10.30pm and was feeling alright bar the cold.

I woke up at about 2.15am and started coughing and thought 'thats not right', so turned my bedroom light on to discover I was coughing up blood. This continued for a good 15minutes before I rang my mum and told her I needed her to come round. We then took a trip to a&e where it had died down abit to just a few streaks of blood rather than whole mouthfuls of it. However about 20minutes after being in A&E, just as the doctor came in it started again and continued for the whole time he was with me trying to ask me questions. This is quite difficult to answer as you are coughing up blood. After they discovered I had a pink card which gave me direct access to the hospital ward where I have my CF care they decided to just send me there instead of keep me in the local hospital for observation (I think they were abit scared on how to deal with me because I have CF!). So after 2 failed attempts at a cannula being inserted and finally successful on the 3rd I was put on fluids (because my heartrate was high and was for the whole time I was in hospital!), I was then put into an ambulance to go to my normal hospital. My mum was told she could not drive me over because I had a cannula in and I was being admitted through a&e so it had to be an ambulance. So I was put in the ambulance at about 5.15am and arrived at about 6am.

There I was asked the exact same questions as I was in a&e and so repeated my answers. Despite the fact bloods were taken in my local hospital, they had to be repeated at my normal one. As the first lot were taken in a different county so they could not access them. This meant another needle because they couldnt possibly use the cannula as this was being used for fluids. I was also sent for an xray as well.

After being reviewed by the CF registrar on call he decided I could go home with a short course of tranexamic acid to help the blood clot as none of my bloodwork showed any sign of infection and as I had just finished IVs on wednesday he was reluctant to start me on more because I already have multiresistant pseudo (only sensitive to 2antibiotics now so he didnt want to reduce it more!). Also there was the condition that I had to of had no more episodes during the day before I was allowed home at about 3 or 4pm ish.

My mum and brother turned up at about 2pm and I was allowed home at about 2.30pm after my prescription had arrived from pharmacy and my doctor had confirmed all my bloods were ok. I finally got home at about 3.15pm

It was a long day yesterday. I had at most an hours sleep since getting into bed at 11pm friday night until I went to bed at 8pm saturday night. I was so exhausted that just the efforting of eating made me sick. I had very little to eat on saturday as I had no insulin in the hospital (they kept asking me if I had brought my meds in with me and when I said no because I went to a&e at 2.30am and didnt really think about it they gave me weird looks. Also hospital pharmacy just dont act fast enough on any day of the week for them to even bother trying to get some from them knowing my mum would be there at 2pm with my bag of clothes and all my meds incase i did have to stay in!). I slept for 12 hours last night.

This morning I woke up with a very sore chest where I have obviously strained my chest muscles from everything that went on yesterday. It was so sore that it hurt to even tie my hair up!

Its quite scary to think that this can happen so fast. I went from being totally ok to being in a&e in less than 4hours time. I don't think some people have ever really believed me before that things can change so quickly in some with CF but now they do!

However this also means I have had to drop out of a show I was meant to be in this week as I'm just not fit enough which I was upset about earlier when I had to let them know, as the first show is Thursday-so really quite late to be pulling out! However as they said I shouldn't worry about it as my health is too important and if I even thought about turning up to anymore of the rehearsals (even if it was just to watch) they would send me straight home again to rest.

I have clinic on thursday where I will see what my lung function is doing and anything else as to whether I do need more ivs, orals or nothing.

The doctor came up with 3possible reasons for why this rather large bout of haemoptysis happened:

1. It was something residual from my last infection (as I had just finished IVs on wed)
2. It was a new infection brewing but did not yet show on my blood work
3. It was just one of those things that CF lungs can be prone to and has nothing to do with infection.

None of which offer particularly great feelings but there you go, that is life and I am home and feeling better than yesterday!

Turning 25...

....and still not necessarily grown up!!

On Friday I turned 25 (I can't wait until next year when I can say I turn 26 on the 26th!). I was stopping at my parents house as still on IVs.

I woke up to found a birthday banner had been put up in my bedroom. This shows just how deeply I sleep as I am aware when my mum comes into do my IVs at about 5.30am enough to get my line out, apart from that I have no idea when she leaves after connecting the eclipse device or when she comes back into remove it and flush the line! On Friday she also put a birthday banner up and I really did not know she had done it.

I then went downstairs to find a small pile of presents awaiting me:

Sat in my long awaited for camp chair:


I knew I had this chair for my birthday as I picked it out. Some of my fellow scout leaders have got similar chairs and it is amazing how much more comfier they are than the cheap folding chairs you can get (the ones that are normally like 2 for £10 or similar!). This is not a cheap chair but one of the leaders has had hers for 7years and you cant tell its that old based on its condition so they are well wearing and hardy. I look forward to my next beaver sleepover/ scout camp where I can take my chair with me!! After opening this present I then proceeded to sit in it whilst opening all my birthday cards and for most of the morning.This is a picture of all the presents that I had waiting for me when I woke up that morning! During the day I also received the zumba game on the Wii and a Sharky and George (Crimebusters of the sea!) hoody.

In the afternoon I had a buffet style party tea with some of my family and then some lovely cake:

I was pretty impressed when I saw it!!

All in all despite the IVs it was a good day!

IVs and some thoughts

Ok, so I am now a week into my IVs. I feel better in myself, my cough is reduced generally and its becoming more of a dry cough than a productive one. Yet if you look at the clinical numbers I am actually slightly worse off than when I started last week. I will be going with how I actually feel rather than the numbers though.

Last wednesday was a very long and emotional day. I still didn't get all the answers I need and still face more tests before anything can be truly determined. My x-ray showed radiological changes in comparison to my previous years on the left hand side. This by itsself isnt necessarily anything to worry about as it could just be a patch of infection. However when placed with somethings it could also be a sign of Aspergillus becoming a problem and having to treat. One of the blood tests that would also confirm Aspergillus hadn't come back. So depending on that result and another x-ray in September could be a start of some new treatment. However this treatment can only take place if they are 100% confident it will help as the side effects can be potentially quite damaging due to my diabetes. It's a tough balance to strike, but ultimately may improve my lung function.

My vitamin levels were low. They are always low when they are tested so I wasn't surprised to hear that. However to hear that my dietician possibly wanted to come in and talk to me about it after the doctor left I was not so impressed with. I had been sat in clinic for an hour with noone coming into see me and I had heard the dietician say she had seen everyone she needed to. So she had another thing coming if she thought I was going to stick around for her to talk me after the doctor left me!! As it was I got to the hospital at 10am wednesday morning and did not leave until 4.30pm. This meant I did not get home until gone 5.30pm!!

I also expressed what I thought is pure stupidity on the Ultrasound department for allowing diabetics to have scans in the afternoon. I had not been able to eat since 8am and then they were slightly delayed in doing my scan. I was starting to feel hypo and had a bad headache for the rest of the day. I feel there should be a question on their forms when the scans are booked asking if the patient is diabetic and therefore giving them an appointment as early as possible in the day.

Annual assessments are just stressful days and its possibly more irritating that it was a month after the tests were done supposedly so all the results will be in and then they arent so you still cant discuss everything you want or need to.

Havent blogged in awhile

Ok, so I haven't blogged in awhile. There is no reason for it, just not really had anything to say.

I've been on reward camp which was nice and chilled which is what I wanted it to be and so was good. The not so good part of the 2days is when I got stung by a wasp on my eyelid!! It flew into my face and got trapped behind my glasses and panicked resulting in the sting. That was very painful but luckily an anti-histamine tablet took down the slight swelling and my eyesight was not affected so I did not have to visit a&e (which I was threatened with if my eyesight went blurry!!). So glad I'm not allergic to wasp stings!

My parents have been away on holiday for the last 2weeks and its felt weird not seeing my mum. Normally I see her most days or every other day for a cup of tea, so to not see her for almost a fortnight was weird. It wasnt so weird not seeing my dad as I dont normally see him as he works and so unless I go round for my evening meal I dont see him except on sundays (when I always go for sunday dinner!). Its been abit of a stressful 2weeks with my mum away as well as I've had to deal with a couple of things that she would of sorted out normally (mainly a very early 6.20am wake up call because my niece woke up covered in chicken pox and her mum panicked slightly as she didnt have the car and had my other niece to get to holiday club and other things. Also my brother and partner had a major argument and I ended up with my brother for a day and night at my house basically just sat in my armchair refusing to budge from his stubbornness and she refused to budge from her stubbornness either! They are pretty much sorted again now though). Both of those things I did because I love my family but boy does it make me appreciate my mum lots! If my parents had been at home my brother would of stayed with them and his partner would of rung my mum for advice on the chicken pox and for lifts at such an early time in the morning.

I've got a busy week coming up, it should go to plan like this:
Monday- visit to see a niece and nephew I rarely see (they are my sister's husbands kids so they are adopted niece and nephew and they are staying with their grandparents which is why we can see them as they dont really live close by for us to see regularly. Only if my sister and husband are home from Cyprus (where he is posted in the RAF) or if they are with his parents).
In the evening I am going to see Smurfs 3d - very excited!

Tuesday- It is my grandmas birthday so she is coming round to my parents in the afternoon for a birthday tea which I am also invited to. My IVs are also being delivered sometime on tuesday. There is a leaders meeting at 7.30pm to discuss the programmes and other scout group stuff and I also have to squish in a visit from the best friend who comes back off holiday and wants to pick up her guinea pigs that I have been looking after.

Wednesday- Is a whole day at the hospital! I have to be there for 10.30am to start my IVs (which for those who know me may realise that means I will be on IVs for my birthday this year). Then I have clinic in the afternoon which is my Annual Assessment Review afternoon. So is the clinic where they discuss all of the results from the tests they did last month to see if any changes need to be made to my medication and plans for the year ahead to keep me as well as possible. I'm expecting upto 5 new medications based on what was discussed at the first part of the review. I am also not allowed anything to eat from 8am on wednesday until after my ultrasound scan at 2pm in the afternoon. I am also only allowed water to drink until after my scan, this is going to make for a very long day and means I have to be up early to have breakfast and a cup of tea to get me through the day. As I wont really be able to eat straight after the scan as I will be straight into clinic with the doctors!!

Thursday- is a pretty quiet daytime and in the evening I will be going to pizza hut with the same friend I am going to the cinema with on monday. I put a status on facebook last week wondering if I could convince anyone to go to pizza hut with me as I love the BBQ pizza they do. She replied saying I was thinking the exact same thing and she loves the same pizza I do as well so we organised to go. We will probably end up ordering a large cheesy bites BBQ pizza between us.

Friday- Is food shopping with my grandma and that takes all morning by the time we have had to have a cup of tea with her afterwards. As much as I love my grandma I always find friday mornings a long time! When I food shop by myself depending on when I go I can have done my shopping and be home again within an hour, sometimes within half an hour. On a friday I leave my house at about 8.15am and usually don't enter it again until 11.30am! Thats a long time for food shopping.

My weekend is currently empty of plans which is probably a good thing seeing as I will be on IVs and should really rest abit. The week after is also empty of plans apart from my birthday.

New Arrival

I no longer live completely alone again! Introducing Harry hamster:






Harry was chosen and named by my nephew. I promised him he could pick my new hamster after I told him I wasnt having a dog!! I also let him name him. Harry is about 7 weeks old and so is still very much a baby. He isn't used to being handled yet as you can't touch them until they are 6 weeks old otherwise the mother attacks them. However he has let me handle him a few times with no problems. He is slightly skittish and tries to jump out your hands, so I need to stay at low level with him until he is more confident but does let me pick him up.

He seems to have settled well into his new cage and was quite active this afternoon playing in his wheel. He is now snoozing but not in his house. I'm not sure if he has found his house or just isn't sure of it as he didn't have one in the pet shop.

National Transplant Week

Another busy weekend

So I had another busy weekend again this weekend (but a fun one!).

On Saturday I spent the day at the local campsite helping out with a groups camp. The plan was for me to drop one of their leaders off there and some bags of wood for their campfire and then leave again. However I ended up staying for the whole day and helping them run their activities!! I should of realised by now that when you go down to a scout event you always stay longer than you initially planned, especially when they know you aren't going to be doing much else otherwise!! I was meant to be visiting the scout shop after being at the campsite (which is only open saturdays 9.30-12pm) to collect my new beaver leader hoody. They were like 'its ok we'll text D and get him to bring it out with him as hes coming out when the shop closes anyway). So I ended up staying. It was good as I got to see the beavers who I have been helping to run have some fun in the settings of the campsite.

My first job was in charge of a lawn beanbags game. They had all 3 sections out there for a large group camp and had split them into 4 mixed section teams. So the teams were rotating around four different activities in the morning and assessed on their scouting behaviours (so teamwork, kindness etc) for three of the activities. Mine was the easiest activity to score as I just added up their beanbag score and thats what got put down. However they still had to act as a team so I would take points of them if they started to gloat over getting a higher individual score than someone on their team instead of saying well done. One scout nearly lost all of his points as he kept being really patronising to the younger cubs and beavers instead of being encouraging and he knew he was doing it. So lawn beanbags was basically a target was laid on the ground and from a certain distance back they had to throw the beanbags and try and get the highest possible score (50 was the bullseye and they had 6beanbags so the highest they could get was 300). They were also playing parachute games, snakes and ladders and making tincan pancakes.

Tincan pancakes are basically what they sound like! You take an empty tincan clean it all out, at the end with the lid already removed cut a square out the side so you can slide a tealight candle in and out easily. At the other end of the can make some holes just under the lid all the way round the sides so the heat has somewhere to escape from. You then put the tiniest of drops of oil on the top of the can (where you still have a lid), light a tealight candle and put it under the tincan. Once the oil has heated up you put on a tiny amount of batter and wait for it to cook (takes about 10mins to cook each tincan pancake). The kids love doing it as its something different but it is quite a long process for a mouthful of pancake (as thats basically the amount of pancake you have once its cooked!).

It was then time for lunch which was sandwiches, veg (raw carrot, raw pepper and cucumber), fruit and a packet of crisps. At mealtimes as a leader you get to stand there and try and get them to queue orderly and patiently and generally contain the chaos and make sure all kids and any invited guests to your camp (so important people in the district or those who teaching the kids a skill you dont possess) have got food and then you can have some. As I wasnt expecting to stay and they hadn't catered for me I waited until right of the very end and had what was left over (still got a ham sandwich, pepper,a banana and a packet of salt and vinegar crisps). You always cater for 2 or 3 people over who you are expecting for any unexpected drop ins and they had some people not turn up so they had tons of food!

In the afternoon they did a scavenger hunt and I made sure none of the other teams were stealing others items. They also made camp donuts which I helped them run. Camp donuts are amazing and can be done at home on the stove as well! You need to make some pancake batter up. You then take a slice of bread, butter it, then put a filling of your choice on (jam, lemon curd, choc buttons and marshmallows all work well!), fold the bread in half like a sandwich and cut into two. You then dip the two bits of bread into the batter and place into a hot frying pan and fry them like a pancake until the batter is cooked (this only takes a couple of minutes). As soon as they are out of the pan you roll them in sugar and voila camp donuts made!! This is the way this group made them, but my scout group make them a slightly different way. Instead of using pancake batter we butter both sides of the bread and make up like previously stated. once they are cut into two you roll them in sugar first (the sugar sticks to the butter), wrap them in tinfoil and place them on the edges of the fire in the embers, then leave them for about 5minutes (depending on how hot the fire is) and then take them out and camp donuts are made. Both ways are good!

Thats pretty much all I did on saturday.

Yesterday I went to Fantasy Island at Skegness with my friends for the day. It was kind of a stag do for one of them as he gets married on saturday but didnt want a traditional stag do! It was a good day with lots of laughs and plenty of rides. A few photos were taken but not on my camera so I'm still waiting for those to be put on facebook.

A busy little beaver

I have been pretty busy this weekend doing all kinds of letters for scouts and beavers.

I still can't believe I was ever fooled into thinking that scouting was just one night a week for a couple of hours! Maybe it is for those occasional helpers who dont do anything except turn up and go home again right at the end without getting involved in any of the planning or preparing.

At the moment I am juggling preparing, organising and running a beaver programme by myself with preparing, organising and running a scout programme pretty much by myself (I have an ASL but there not necessarily so great at the being organised thing!).

This is a whole lot of things to organise to sure every child gets the full experience of scouting and doesnt miss out on any badges they have earnt because of my lack of record keeping skills!

This weekend I have done the following relating to scouting:

• Written a letter to give to Beaver parents regarding an invite to join another colony to see Persil the Owl.
• Written a letter to send to the scout parents regarding a weekend away which our troop has been invited to by another troop in the district.
• Addressed the envelopes and posted the above said letters!
• Updated group records
• Printed health forms for the patrol leader reward camp I will be running to give to the scouts who need them on thursday.
• Printed the provisional programme for the patrol leader reward camp to give to the other leaders so they can see what will be happening and throw in any ideas they have (a camp programme is never set in stone, it is only ever a rough guide so you have things they can do but things always change when you are on camp depending on enjoyment factors of current activities!).
• Started organising the beaver programme for the term starting in September with regards to outside guests coming in.

That is a whole lot of stuff to squish in when I also spent most of saturday daytime out of the house with family and sunday afternoon at my parents house.

I absolutely love being in scouting and this post might seem like I am complaining but it is meant that way. I love the time I spend at weekly meetings actually running them and I admit I like things to be organised and so that aspect of scouting I relish! I always try to keep my records upto date every week with regards to work they have completed in case it completes a badge (that can so easily sneak you by without realising) and letters and forms and all things like that!

Tonight I will be joining another troop in the district for their weekly meeting. They are holding a Carnival/ Fair games night and I was asked to go along and help man a stall. I think the way the night will run is all the leaders will be at a 'stall' and the scouts will be free to roam and go on any activity they like. I know they have got a candy floss machine!! and there will be a hook a duck as well. I'm not sure what else they will have going on but I am aware that the group own a set of stocks and I'm a little worried there maybe a throw wet sponges at the leader in the stocks. Hopefully if that is there I wont be on that one!!!! This is the same group who the weekend away is with at the end of July so it will be good to get to know a few of their scouts a bit better.

Cyprus

The lack of blogging for the last week or so is for a good reason this time and not because I forgot about it- I was on holiday in Cyprus!! Last year my sister moved out to Cyprus in October with her husband who is in the RAF. Well this month I made it over to Cyprus to see her. It was a good week and whilst I have seen her a couple of times since she has been in Cyprus as she has come back to the UK it was good to see her in her new environment.

While I was in Cyprus the temperature never dropped below 25degrees, even when I woke up in the morning it was that temp! The highest it went to was 35degrees. The highest temp was a tad too warm for me but I survived quite well at temps of 27-29degrees, which did surprise me. I was on salt tablets the whole week and always took the full dosage (2 tablets three times a day) which I think definitely helped with my energy levels.

Even though her husband is in the RAF his posting is on the army base in Cyprus which is based in Episkopi (everyone I told that I was going on holiday to see my sister asked if I was going to Akrotiri which is the RAF base), I don't understand it myself and do find it very confusing. He is an RAF policeman and in Cyprus it is a joint unit between the 2 forces and he works at both bases but his posting is at Episkopi. They are only about 20minutes apart though.

Whilst there we visited a number of places-Limissol, Paphos, Troodos Mountains and some other bits and bobs closer to the base. Everywhere we went you had to go by car as none of the places were in walking distance or had paths you could walk to them but by car they only took 5 or 10mins in some cases.

On the friday night she took us to see a musical show at an ancient roman ampitheatre whose backdrop was the sea. That was pretty awesome to go to! To be sat in an outdoor ampitheatre which has been so well preserved that they can still hold shows in it today. I am slightly jealous of my sister as tonight she is going to the same place to see Romeo and Juliet! How amazing would that be to see Romeo and Juliet and behind the show you can see the sea.

I will leave this post with a few photos from my week away (I say a few as I managed to take about 300 and my parents who also visited at the same time took about 200!).

Me with my sister in the ancient roman ampitheatre
With a frog! There were lots of signs saying 'Follow The Frog' advertising a waterpark. Whilst in Pathos the frog mascot from the mascot was walking around advertising the waterpark and I got my picture taken with him (like you do!).
Paddling in the sea with my sister and her hubby.
Standing at the top of Troodos Mountain (Which we drove up and definitely did not walk up!!)

With my sister and dad on our first proper day of the holiday (I'm not counting the day we arrived as we got there mid to late afternoon!).

You know when you just feel like blogging but you don't really know if you have anything to say or not. Well to warn you now-this is one of those times!!!

I know I last blogged on wednesday. So I am going to start with what I have been doing for the last few days and go from there!

Thursday I was at CF clinic. My lung function was about the same as last time I visited (71%). This proves that my theory worked from last clinic. I had IVs even though I didnt really need them to try and boost me past my best (71% is about my best now!) so that after Centenary camp I would still be at "my best" ready for my holiday this month rather than being poorly for my holiday. This seems to have worked so I am now on track to go on holiday and have a fantastic time-yay!

Thursday teatime I had a phone call from my friend J who is also my GSL for my scout group. She was ringing to inform that I had 2 beavers who were eager to start and was wondering if it was on tonight as cubs and scouts were cancelled. Unfortunately it wasn't because I had the District AGM to go to! However I was ecstatically happy that in 2 weeks time I will have beavers turn up! This is excellent news and hopefully they will bring friends with them as these 2 are brothers. It means the groups beaver colony is now not only open but active. I am so excited about officially being the Beaver Scout Leader. This is the section I am so much happier working with however I will still be very sad when it comes to saying goodbye to the Scout section (As proved when I spent the day in tears when I was making sure all the records upto date for the leader taking over a few weeks ago!).

So Thursday was the District AGM. Never underestimate how boring an AGM can be, especially when you have no real interest in finances. I am quite happy to know that the accounts balance and where we are in comparison to last year (ie do we have more money as a district or less!). I do not enjoy having to sit for 20 minutes as they go through every single column of the ingoings and outgoings and assets of the district!! Luckily it was a relatively short AGM and after an hour it was over (Last year it was nearly 2hours long just to compare). I did some excellent scouting relations before and after the AGM by organising a joint scout sleepover with another group before the AGM and afterwards a lot of leaders went to the pub! Where I sat with a pint of water but it was a good social time none the less and was there for about 3hrs. We also shared a Wetherspoon platter from the starter menu between the 4 of us- was quite yummy!!

Friday I went on my usual food shopping trip in the morning with my mum and grandma, My grandma can't manage the bus anymore with her food shopping and hasnt for quite some time so we always take her. I must admit sometimes it can be frustrating when I can get into town, round the supermarket and home again in under an hour (sometimes under half an hour depending on traffic!) by myself and yet friday mornings I leave my house at about 8.15am and usually dont enter it again until about half 11!! I didn't do much friday afternoon or evening.

Yesterday I spent the afternoon at Belton House with my mum and nephew having some fun in the adventure playground and Discovery Centre.

Thats about me caught up and now I have to go as my brother needs a lift to go fetch his car from a house where he left it last night after having a few drinks!

Yet again...........

..........a spell of no blogging.

No particular reason i just don't have a lot to say anymore that doesn't feel like its repeating itsself!

It's been half term so there was a break from scouts and all my usual activities as they are all based in school term times.

I am still hoping that beavers will turn upto our newly opened beaver colony so that I actually have a section to lead come september when i will have officially given up the post of scout leader and of moved to beaver scout leader. I have loads of great ideas for beaver meetings and can't wait to implement them!

I am busy planning a patrol leader reward camp for 6 of the scouts. This is basically a camp for the 3 kids who are patrol leaders and the 3 assistant patrol leaders to show that they get something for this position apart from getting to stand at the end of the lines at flag break and close of night!! It's to encourage the others that earning their leader stripes is something to go for and that they will get extra opportunities to earn other badges either well in advance of the other scouts or only if they are a pl or apl. They will all get 3 camp blanket badges that none of the scouts will ever get and hopefully an activity badge as well.

Centenary Camp

This weekend was the Districts Centenary Camp to officially celebrate 100years of scouting in my hometown.

It was lots of fun with a full day of activities on the saturday and activities all of sunday morning before they went home in the middle of sunday afternoon after a scouts own.

On the saturday I was in charge of the giant bouncy slide activity. This mainly involved letting no more than 8 kids on the slide at a time and restricting them to 3slides at a time and telling them if they wanted more they then had to go to the back of the queue!

There was lots of activities on offer all weekend. They had the following to chose from (that I know of/saw evidence of): Bouncy slide, bouncy castle, bouncy obstacle course, pyography, juggle ball making, kite making, dream catchers, making tincan pancakes, camp donuts, climbing wall, badge making, face painting, airplane making and many other things such as large wooden logic type puzzles, sumo wrestling, handpowered cars things (you basically sat in a seat and used are power to turn the wheels so you could move about).

I arrived at the campsite at about 4pm friday afternoon. By 6.30pm when all the kids arrived we had all of the tents up (8 of them). This was quite an accomplishment on my half seeing as I have never really put any tents up and it was windy and there were no instructions with the tents. This was aided by the help of 1 explorer scout for the majority of the time. Friday evening was just supper and getting settled in for the scouts.

Saturday morning I was woken up at 6.30am (after getting at most 3hours sleep!) by some very noisy girl scouts who I was less than impressed with as they were on the opposite side of our pitch. Which means they were far too noisy for that time of the morning for my liking and I may have got up and shouted at them to be quiet especially when they were the tent who caused the problems the night before with noise and going to sleep! At 8.30am all of the cubs and beavers started turning up ready for activities to start at 10am. What ensued was basically organised chaos with the kids free to go to any activity they wish with the instructions 'they be safe, have fun and if there is a long queue at one activity then go to another and come back to the other one later as they would be there all day'.

Saturday night was the campfire which our group rocks at! We provided the best songs and entertainment at the campfire and got everybody joining in our songs where as the other groups didnt! We are very proud of our campfire abilities. Although I may have got abit too strenous during the song I led 'the chicken song' and did end up hurting my chest and generally tiring myself out for the rest of the weekend over a 5minute song (but so totally worth it). Apparently I was extremely close to another leader coming upto the front and telling me to go sit down! oops!! At least they care enough to know that I am probably overdoing it and making me stop.

Sunday morning was again more activities and then in the afternoon a scouts own was held. A scouts own is usually held at the end of a camp and is a time for them all to reflect on things they have done over the camp and what kind of messages they can send to others about scouting (it can be quite religious in its reflections or can be kept more general but it is kind of like an extremely mini church service-usually no longer than 20-30mins). Then it was time to send the kids home!

I also went home last night because I had overdone it, I did however have the option to stay on one more night and enjoy a leaders night at camp. Basically leaders night is a chance for all the leaders to socialise without having to worry about looking after anyone under the age of 18 whilst also drinking copious amounts of alcohol! If there are any children on site then it is a dry camp in terms of no alcohol is allowed to be drunk.

Overall a very good weekend even if on occasion it was very windy!!!

Back to doing what I do best........

..... making biscuits!!

That is all :o)

IVs

So below are some pictures of IV time during the last couple of weeks:

Looking pretty rough in this picture! This is day one and I had just got home after having my port needled and first dose administered.


Giving the meropenum! This was one big syringe to give by bolus!
Mid-way through IVs and giving my skin a breather from tegaderm.

End of IVs with needle removed, If you look at the picture carefully you can see where the needle has been sat and also where the padding was over the needle between the tegaderm.

Quick catch up

So not posted for a couple of weeks. Going to do a brief catch-up and in the next post I will upload some photos once they are on my computer.

On the 4th May I started on IVs. three times a day- meropenum and colistin. The colistin has provided its usual side effects of numb-tingly lips/gums/tongue and occasionally also in the tips of my fingers. Unfortunately nothing can be done about this and it isnt an allergic reaction and whilst it remains tolerable they will continue to give me the antibiotic. Just have to be careful I dont drink a cup of tea too fast as the receptors can be abit distorted and I dont realise things are as hot as they actually are. There have been no side effects from the meropenum but it is just a pain having to draw it up and give as its a massive 60ml syringe!! I find it hard giving a bolus syringe that is so big.

Yesterday I took part in Jamboree On The Trail (JOTT) with my scout group and another group in the district, for the day we were 71st grancaster which was a merger of our two group names!! It was an 8 mile walk. Luckily the weather stayed good for most of the day. It was 20minutes to picking up where we got caught in a brief but heavy downpour of rain. Luckily we had finished the walk and was back at the park where we started so the kids were just having a play whilst waiting for parents. We had also just got our icecreams so we were eating icecream in the rain- an unusual experience but probably not the first time its happened and highly doubt it will be the last. Here is me during picnic time halfway through the walk:



Otherwise I havent really been upto alot apart from the usual scouts on a thursday evening. I will leave this post with a picture of Buddy. one of the other leaders brought her 2 dogs along for JOTT and I had Buddy all day. We gave both the dogs hi vis neckers wear to be part of scouting!!

My A-Z!

Just For Fun ... My A-Z

Shamelessly stolen from my friend Becky's blog!!

A - Age: 24

B - Bed size: Single

C - Chore you hate: Ironing

D - Dog's name: I don't have a dog but the dog we had when I was a child was called Cindy

E - Essential start your day item: erm at the moment that would be a cup of tea and party rings!

F - Favorite color: I don't know if I really had a favourite but I have a purple bedroom and I picked that so I guess purple!

G - Gold or Silver: Silver

H - Height: 5 foot 2

I - Instruments you play(ed): I played the recorder in primary school and that's it

J - Job title: Volunteer

K - Kid(s): none

L - Living arrangements: Live in a semidetached bungalow by myself

M - Mom's name: Janet

N - Nicknames: Floss

O - Overnight hospital stay other than birth: Lots and lots!! For courses of IVs, three portacath ops and other CF related stays.

P - Pet Peeve: People who are late

Q - Quote from a movie: " I carried a watermelon" Dirty Dancing!

R - Right or left handed: Right

S - Siblings: 2 older sisters and a twin brother

T - Time you wake up: depends on whether the alarm is set and how well I am. Usually somewhere between 7am and 8.30am on natural rising if I am well, anything as late as 9.30am when not feeling so good.

U- Underwear: Girl boxers

V - Vegetable you dislike: Parsnip

W - Ways you run late: Other people! Mainly other people I have to pick up and take to scout meetings so have no choice but to wait for them when they are late (I have been known to leave people behind if they are late and I know they aren't needed for say adult/child ratio numbers!!)

X - X-rays you've had: At least 25 chest x-rays but probably alot more as I'm sure some years I have had more than 1 x-ray but usually it is one x-ray a year. I've also had my neck and spine x-rayed when I was in a car accident.

Y - Yummy food you make: Biscuits and cake

Z - Zoo favorite: Penguins

Scout blanket

Below are some photos of my camp blanket :o) You sew badges onto your camp blanket that are from events or camps that you can't wear on your shirt. So for the kids thats mainly camp badges or events like JOTI or JOTT or if you are given a special badge to celebrate a camp. These are known as an occasional badge. Then as you move through the sections you can also sew your old badges on. so when you move from beavers to cubs you can put your beaver badges onto your camp blanket instead of leaving them on your uniform. Leaders can only wear the membership badges really on their shirt and until your 25 you can still earn the stage activity badges. So below is my blanket with the badges I have earnt in my 2years of being a leader!

This picture shows my 1year and 2year participation badges, a jamboree badge, a patch from my visit to newark air museum, all 5 of the first aid staged activity badges and one for the local campsite that normally would go on the back of a necker.

This one shows the badge from a leaders training course when I stayed at shacklewell hollow, my PGL badge from last year and a 'fun' badge which just says scouting is fun and for all!

This one again shows another 'fun' badge of my cub leaders name. The fact I've done 1 hike with the scouts and had 5 nights away with them (I've actually had 11 but I haven't got the 10na badge yet!).

This corner shows the badge I got for going on my first beaver sleepover, that I took part in the 2010 big adventure (this is where you get parents to join in activities with their kids in the hope they will want to join as occasional helpers or even uniformed leaders and bring new skills to the kids and the group!), my dukes covert camp badge, my JOTA/ JOTI occasional badge which was held in november. JOTA/ JOTI stands for Jamboree On The Air / Jamboree On The Internet. It was basically a weekend spent on the internet and radio waves trying to communicate with scout groups from all over the world :o)

A picture of my all of my badges in one shot.
This is the last close up of my badges. It shows the Survival camp badge I went on in october (very cold and rainy weekend!!), the gangshow badge and all 5 Information Technology staged activity badges.


I just felt like sharing!

Strength and Courage

It takes strength to be firm,
It takes courage to be gentle.
It takes strength to stand guard,
It takes courage to let down your guard.
It takes strength to conquer,
It takes courage to surrender.
It takes strength to be certain,
It takes courage to have doubt.
It takes strength to fit in,
It takes courage to stand out.
It takes strength to feel a friend's pain,
It takes courage to feel your own pain.
It takes strength to hide your own pains,
It takes courage to show them.
It takes strength to endure abuse,
It takes courage to stop it.
It takes strength to stand alone,
It takes courage to lean on another.
It takes strength to love,
It takes courage to be loved.
It takes strength to survive,
It takes courage to live.

Hugs

Catch up

With my ever useful diary I am working out what I have done since my last blog!

We had some family friends visiting on wednesday, it was abit weird seeing them! It's been about 4/5years since we last saw them and boy have those kids grown!!!! It made me feel old when one of them turns 10 next month and I remember her being born.

Thursday I was at clinic and that didnt go well. I've lost 2kgs since being at clinic a month ago and my lung function is also down about 15%. However because I feel alright despite these numbers I've got orals and 2weeks to get it back up otherwise I will be back on IVs again, which would be a 6week break! Thursday evening I went to a charity fashion show. It was good fun and I even got a new pair of trousers and a jumper!!!

Friday I met a friend for some lunch and got some more lovely cuddles with her baby boy.

Saturday my daytime was spent doing a charity bag pack with the scouts. It was a good day and £660 was raised but boy are bag packs boring!! I really dont like doing them but they are a good fundraiser and the kids dont mind doing it. Saturday evening I went with a few friends to see Boston Gangshow (after our own gangshow which was held in February). It was an interesting experience and I think I will leave it at that!!

Yesterday I didn't really do alot. I went round to my parents and we sat out in the garden enjoying the sunshine :o)

Mothers Day Cake!

This is the cake I made for Mothers Day! It was very yummy and my mum was very pleased with it. She also got a balloon arrangement which she also loved.


Thats about all I have to say but just thought I would share the cake.

Randomness

Following on from my previous post, this is the sentiment on my mums bag of blessings:

This is a Bag of Blessings and Gratitude, A magical gift that's given with love to say, Thanks for being so wonderful, And "Happy Mother's day!" The Aventurine is to bring you luck, The Rose Quartz to surround you with love, There's a guardian angel to watch over you, And to bring you peace, there's a tiny dove. I hope this gift will bring you joy, Because it's clear for all to see, You're the best Mum in the Universe, And you mean the world to me. Copyright © 2001-2009 Karen Bourner. All rights reserved.

I still think it's very sweet!

Apparently it's only been 2 days since my last blog and I still can't remember what I've really been upto!!

Hmmmmmmm..............

Yesterday was busy spent updating all my scout admin, sorting out their challenge record cards which lets me see how many of them are close to or have earnt the Chief Gold Scout Award. Which is the top award they can earn in the scout section (cubs earn chief silver scout award, beavers earn chief scouts bronze award). They earn this by completing 'challenge' badges which typically involve more work or doing certain things for longer than an activity badge. I was pleased to see that out of 15 scouts in the troop, one has now earnt their gold scout award and 4 others are very very very very nearly completed!! The rest of the scouts are either just starting on their scout journey or about halfway there. Then in the evening I was at scouts and they had fun building models out of straws. It was a relatively easy meeting for me in terms of leadering as when they do activities like the one they do last night they all sort of control each other and I only have to step in if it looks like a big argument is brewing or I see some 'inappropriate' behaviour (We don't allow physical contact unless it is part of game rules-so no shoving or poking etc).

Today I have been food shopping and looking for somethings for my friends birthday which is in a few weeks time. I've also got all my stuff ready for cake baking tomorrow. I'm a little bit nervous about it as I know my grandma will also be eating it and she is big baker!! Shes always baked and I used to bake with her and my mum when I was little. She is also quite critical when it comes to baked goods and will give her honest opinion on things no matter who made it!! Also I just want it to be nice as it's for my mum. I will take pictures of my progress and blog them another day.