Tuesday, 22 July 2014

Quick update

I haven't finished my busy few months posts as yet.. still got what everything has been working up towards- my wedding and honeymoon...

However just a few quick updates:

My health is still going well- some of my medications have been stopped or doses lowered following on from a clear biopsy (FINALLY happened mid June!) the bronch still showed a bit of stubborn infection, but not enough to prevent the biopsy actually happening. From that, the doctors are happy to start reducing things down to hopefully get to a less disturbing level of doses and number of tablets... as a CFer, the number of tablets didn't bother me, it's more the side effects of some of them!

So for now I've had 2 of the 3 nebs stopped, 2 tablets stopped completely and another couple reduced doses. Hopefully having tolerated (and not seen any drop in lung function) this reduction, with a bit of luck at least one other tablet will get stopped next clinic, and maybe even have my steroid dropped a bit more (fingers crossed because then my button can come out... and maybe even be allowed to start swimming again!)

I've been busy around the house building furniture and trying to get the decorating done as best I can... but keep being thwarted by damaged items of furniture turning up, or colours not being right for paint... throw in the mix stupidly hot weather and storms... and a woosy dog who likes to get in the way (or hide in the cupboard!) and it's been a bit difficult to get things done. Hopefully this weekend (weather dependent) the shed roof should get fixed so that won't leak any more and then we can get rid of the nasty furry mould that's appearing in the far corner. Also it would be nice to get the downstairs toilet fixed so we can actually use it, and the bridging units in the bedroom on the wall so we can finally get some clothes into cupboards! I do enjoy making flat pack furniture... but more so when I can actually complete things all in one go so they're done!

I am also writing to say that I have decided to sign up to do a 30km 'Fright Hike' to raise money for Papworth CF Unit, and a local animal charity (haven't decided which just yet!) I'm trying to get a little team together so that I have company and support... but I will also be starting to come round looking for sponsorship so fingers crossed enough of you lovely people will want to encourage me to get round the 30km through a haunted forest in November (in the dark!) Once I have signed up and got a sponsor page set up I will be posting the link so anyone (and everyone) can donate online!!

My activity log is under review atm... just trying to make it a bit easier on the eye... and hopefully be better to follow... although I'm not sure whether to put the newer stuff first or last....? It has had a change of layout... I wanted it as a proper table, but I can't seem to get that working, so it's in a table format, just has no lines!

Anyhoo speaking of activity... I'm off to do my last Ball Blast class- the leisure centre have decided to stop running it despite it ALWAYS being fully booked... :( Let's hope swimming becomes do-able for me from next clinic or I'm likely to have to cancel my membership as won't be getting my money's worth... and as I haven't been at work for almost 6 months (and the DWP have stopped my DLA) money is a tad tight and can't be frittered away :(

Tuesday, 15 July 2014

Busy few months... pt2

So my busy couple of months continued through April and May...

I went to visit my Aunt up in Cambridgeshire (March) for their St George's Day fair. Was nice to have a wander through the village and may have accidentally bought myself (and our new house to be) some presents, including some very yummy flavoured fudge- Mint choc and a refreshing and different mango. After a pleasant wander round that, we hopped into my cousins rocket (well it felt like it the way we tore through the country lanes!) and went to an incredible pub for their Sunday Carvery. Now, being a veggie, I generally avoid going to places that offer carvery lunches as they often don't bother to think of offering a veggie alternative, but my aunt had specifically told (warned?) them that there were 3 in our party and we were assured there would be options for us. We got there to find a superbly stocked carvery- 4 or 5 different meats, 3 different types of potato, yorkie puds, stuffing, cauliflower cheese, 2 different gravies, 5 or so different sauces and about 8 different veggies! This was buffet style eat as much as you want, then followed by the choice of about 8 different desserts! Boy did I eat well!! We enjoyed it so much, we vowed to make the trip back up there to go again.... and we did coincidentally yesterday and it was just as yummy the 2nd time around!
My dinner- Very yummy welllington with all the side trimmings :)

Having visited my Aunt (and seeing my cousin too) within a couple of weeks, I also got to see my uncle and other aunt as they were visiting from Cyprus. Seemed odd to not see any family for such a long time, then do both of my mums siblings in a matter of weeks! We had a nice couple of days though (despite my Unc coming down with a rotten cold while here!) We had a trip up to Maldon, walked round the town, the church (pics of mum playing, and being brave and going up the staircase to quite a height!) and along the waterfront, with a nice lunch on the water's edge. On the way home (our walk got cut short by dodgy weather) we stopped at the Tiptree Jam Factory museum. Had a look around and then stopped for tea & cake (although I had afternoon tea and got a HUGE scone with jam & cream!) While they were in the area we also went to Frinton. We took the dog and had a nice stroll along the beach- Judy even enjoyed playing in the surf, then walked up to get some traditional sea front (although it was about 15 minute walk from the front) fish & chips!

I started back at the gym (with permission from the Doctors, I was a good girl and asked first!) I started with the intention of building up the strength in mostly my leg muscles, but to start giving my shineys a reason to properly work. Things started off with a bit on the treadmill and bike, but then got some arm and stomach exercises thrown in too. I had to be careful to not do too much with my upper body too soon as obviously, still healing! After a couple of weeks back at the gym, I started at the Ball Blast class. I used to go to this several years ago, but it got to the point that the 5 minute start warm-up was too tiring and left me feeling too puffed to do that actual class, so I had to stop. I really enjoy this class as it works the core muscles, but also helps to tone pretty much all the other muscle groups too as the teacher does different muscle groups each week. The first week I ached for a full 3 days after, and was walking worse than an arthritic 100 year old, I could barely get up the stairs into the flat!! Now several months on, my gym workout has increased to include more cardio stuff and the upper body exercises are also being widened as I generally become stronger. My next request in terms of exercise is swimming.. but as I'm badgering to get my button out, I can only pester them about 1 thing at a time!!

From reading friend's statuses on Facebook, I found out (well, re-found out) that We Will Rock You (the musical) was finishing in the West End at the end of May for good. Both Glen and I love this musical (I had intended on getting tickets when I first read this at the start of the year, but with everything else that was going on, it slipped my mind) with only a couple of weeks left of it showing I asked Glen his thoughts on getting tickets... several minutes later I'd booked up for that weekend. We had a lovely day up there. We did our now traditional lunch in Leicester Square TGIs before heading up to the Dominion Theatre (via the Rainforest Cafe shop and Oxford Street) It was a good show (obviously) AND I was given a free glow stick by a member of staff! I'm easily pleased, but I waved it with might at all the good songs!! It was absolutely brilliant to have this day out and be able to enjoy it so much. The last time Glen and I went to see a show (January) I was on o2, so we had to have several canisters with us, and moving around was such a hassle, and I was incredibly tired pretty much by the time we'd got to the train station on the way up there... this time around I was full in 'London Mode' for walking and several times Glen had to grab hold of me as I was weaving in and out of the pedestrian traffic!

The following week we finally got confirmation that our house move was going ahead. We exchanged contracts with 7 days notice of completion, so all the packing panic could commence! I covered most of it during the week while Glen was at work (with help from Mama) but for the bulkier and heavier items he was in charge of that. We had his brother help us actually move on the day... this started bright and early with the living room window being removed (remember I was in a 1st floor flat!) so that our sofa could go out of it, and down a ladder to the truck! The window came out, and went back in successfully and all other furniture got sorted. We got told about 11ish that the money transfers were starting, and around midday (I'd just made a cuppa tea and heated a bit of pizza to eat) I got the call to say everything had gone through and I could come and get our new keys! I gave mum my tea (she'd just arrived so was quite happy to be presented with a mug of hot tea) wolfed down my pizza slice n jumped in the car to go to the estate agents. Glen and his brother were leaving a few minutes later and went direct to the new house. I met them there having got the keys, I unloaded my car and nipped back to home (a) to help mum with the clean up of the rooms that were clear. By the time the boys were back from home (b) pretty much everything was boxed and ready to be loaded again. The new owners turned up just as we were putting the last bits (including the dog) into the cars. We had a nice chat, introduced them to the neighbours (who coincidentally just so happened to all come out about then!) and then headed off on convoy to our new home. Overall, despite my stressing, it went pretty damn smoothly and we got things live-able pretty quickly. Although, most rooms seemed pretty sparse for the first week or two until we were able to start getting new furniture and unpacking the stuff we did have. Now, almost 2 months on, we're pretty much settled and are now mid bedroom decorating/furniture building. It will be nice to actually have bedroom cabinets when it's done!!

So we moved on the Friday, the Saturday was my Hen Day organised by my best mate (and bridesmaid). All I knew was the time and place of meeting everyone... I'd wanted it to be a surprise or I'd have wanted to plan that as well! So I knew we were heading into London, doing 'something' which would include some form of food, then heading back to Colchester (somewhere) for a proper dinner... weather dependent there were other plans for between the 2 things. As it happened, the weather was pretty shoddy, so the extra thing (hiring a boat in Hyde park and doing party games in the park) was put off. So Mum, Glen's Mum and I headed off by train from Colchester to meet Zoe, her mum and sister in Liverpool Street station. She'd warned me not to be worried by the amount of 'stuff' she would have with her... but turning up and seeing all three of them with cases and bags did make me wonder just what she'd got planned!! So we headed off to a quirky little cafe place that offered afternoon tea and a craft session. We made 'hen sashes' to wear for the rest of the day- but other groups made fascinaters or flower headbands... we so got the best option as we could all wear the sashes all day and them not get in the way! As you can see, we were all also wearing Mickey (or Minnie) Mouse ears that Zoe had got as a way of dressing up and incorporating Disney! She'd also made a little cardboard cut-out Glen so he was also with us... and might of been abused a bit with rude straws and made to 'drink' the cocktails etc! After making the sashes, we had a cocktail, followed by afternoon tea. It was all very sophisticated in a relaxed kind of way with proper teapots and cups/saucers and little sandwiches and cakes on a tea stand... Lovely!
After the time spent there, we had to decide whether to go to Hyde Park to play on the boats etc... but as we walked back to Kings Cross Station, it was windy and the sky was full of thick black, moody clouds. So it was decided we'd head back to Mum's house and play the games Zoe had prepared, then we'd already be in Colchester ready for dinner.  On the train home Zoe has prepared a game which should have kept us entertained for a lot of the journey, but we were all too impatient and had pretty much done it all before the train had even left the station! It whiled away some time, and Lee was happy as she won it! (She won a big bar of Cadburys Choc- yes, Zoe provided prizes too!) Once back at mums out rolled the hen do games... T.P bridal dresses and cocktail making. We split into old vs young... The young team won the dress competition, we didn't just have a dress, we had a ring, a bouquet AND a headpiece... to match my much more practical and sturdier dress...  However we sucked at the cocktail making and only managed to make some very disgusting concoctions... it just goes to show that many combined years of drinking alcohol has benefited the mums as they won hands down!
After our games, we lost Siobhan due to prior arrangements, but gained Anne for the meal. We went to a very lovely restaurant I'd never heard of in town where they had Medieval inspired dishes, and the building itself had a lot of the very old building works and archaeological 'stuff' on display. The food was lovely and overall couldn't complain about any of it! I had a fantastic send off to being a single girl with my very best peoples there (shame that a couple of other's couldn't make it but I had a super time anyway!)

Thursday, 3 July 2014

Busy, busy few of months! (pt 1)

So April & May have been pretty manic in all respects.... June started off pretty busy but from the middle of the month we calmed down somewhat and now we're into July I can actually relax a little more and take time to do things a bit more leisurely!

April started with going to the Backstreet Boys concert, and VIP sound check/meeting them. This was an absolutely awesome day (see previous post for all the info) and I was so surprised I managed to do as well as I did considering it was only 5 weeks post transplant.

I had an assortment of transplant drug related issues the first half of April... mostly in the form of migraine type things (mostly affecting my eyes) but they were gradually increasing in intensity so they were making my head hurt, and wasn't even clearing after sleep. It culminated in having about 3-4 days solid of a horrid migraine type head. During this 4 day spell I went up to clinic and they wanted to do a bronch and biopsy, but I told them I felt like crap as it was, without putting myself through the stress and sedative etc. They weren't best pleased, but I didn't care, I wanted to get home and curl up on the sofa!! A week or so later, I had issues with my long line. By this point it had been the same access for well over a month, probably getting on for 6 weeks (I'd previously always had my port access changed weekly-fortnightly tops) It got to one day (day after the BSB concert) and it started to tingle a bit as I was putting through the drug... it had started to really slow down the rate of going in over the prior couple of days, but it was going through so I left it. After a dose of a slight tingle, it increased to an actual sharp pain even when putting the sodium flush through. The surrounding area on the wrist was also starting to feel majorly bruised and tender... so Glen and I took an afternoon trip to my local A&E for them to remove the long line and put in a small cannula so I could continue my IVs until my next clinic (3 days later). Having explained to them in A&E exactly what I had, needed and what was happening after etc I got the line out and cannula in. That evening the first dose through the cannula went in ok, just a bit slowly. The following morning I attempted to do a dose, I got less than 2ml of sodium flush through and it hurt... and I mean, make me cry out in pain and drop the syringe it hurt so much. Glen ran in to check what was wrong to find me almost in tears cradling my arm. At this point I told him to go get some bits from my IV pack, we were taking this cannula out and I was just not going to do any more IVs... I'd had enough! I gave him the option of whether he wanted to pull the line out, or be ready with the gauze to cover the hole once the line was out.... he opted for the 2nd option, so I had to get my hands sorted out right so I could logistically support and pull the cannula out safely. Fortunately it was only an inch or 2 inside the skin so was actually pretty easy to do, and Nurse Glen did a fantastic job with the gauze and dressing it after (as I was about 3 minutes away from going out for lunch! I went to clinic a few days later and told them the drama, and fortunately they agreed that I'd done the right thing as it sounded like there was some kind of infection brewing in the line somewhere. I was also kept off IVs after that, and just changed to nebulisers.

My dress, but the catalogue pic... not on me!
The week after the cannula incident I could start focusing on some wedding things... starting with going for my first wedding dress fitting. I was really excited about seeing and wearing it again, but I was also a little concerned about how I would be putting something so restrictive on given my operation scars/scabs were still tender and only partially healed. We decided to go along, explain the situation to the dress shop and get their opinion. So, mum and I went along and entered the shop... queue major incident! As I walked in the door, I was confronted with simply the most amazing looking dress hung up right before my eyes. Although I knew I shouldn't I went to investigate it a little closer. It just got prettier the closer I got 'Mum, I like this'.... (turned the dress round to look at the back) ... 'I really like this! Would it be wrong to try it on?' After a minute or so of umming and ahh-ing we approached the desk and told them we were there for a dress fitting... but would it be possible to try on that dress as well? They were more than happy for me to do that, so got both my dress out, and the one off the rack. It was decided that a proper fitting would be daft given the fact I couldn't do the dress up fully due to the scarring, but I tried both dresses on. I put my dress on first and felt happy in it... I then put on the new dress and before I even came out the dressing room it felt good... I walked out and mum was speechless! Eventually I got a 'wow' from her (and the ladies in the shop)and I just knew this HAD to be my dress. I didn't want to take it off and walked up and down the shop, twisting to see it from every possible angle. Then I saw my original dress and felt guilty. I know it was only a dress, but I felt guilty for wanting a different one! Eventually the lady in the shop laid it straight 'forget you'd been in here before today is your first time trying on dresses... which do you prefer?' and that was it... decision made. I had a new wedding dress! A new fitting date was set up and we walked out- mum several more hundred pounds lighter (thanks mum!) and me with a new 'wow' dress! As soon as I was home I txd my best friend and gave her only part of the information... to see how quickly I would get a desperate request for more information! In less than an hour (considering she was at work) I had a manic reply begging for more info... but to see the pictures she had to wait until I got them off of mums phone. The wait must have been awful for her!

The picture we gave our cake-maker to replicate

Next up on the wedding check list was fun... CAKE TASTING!! We had originally asked a friend to do our cake, but given the logistics of it all, this ended up changing. I spent a while googling cake makers in the area close to our venue, rather than our home as we figured that made more sense on the day. I found someone who made all sorts of different cakes and contacted her to see if she would be up to the challenge of what we'd seen and wanted. After much discussion we decided to go for a cake tasting session and talk directly. We arrived and made a fuss of her lovely doggies. Then we got down to business :) We had 3 or 4 different flavour sponges, 3 different butter creams and then she remembered she had 2 different ganaches too for us to try and decide what combinations we wanted. This was only part of her repertoire, we could have tried a whole bunch more had we of asked! After lots of backwards and forwards between different combinations we agreed on our 3 tiers, then we discussed the actual design. We left quite sugar high and very pleased that we would get the cake we wanted! Soo glad we chose Kelly, check out her website : http://www.kellyscakeboutique.co.uk/

I then had my make-up and hair trial. My hair was still a little short for what I'd thought of. Although I was a little vague on what I wanted, my hairdresser Heather did a super job to create something that should work with an extra couple of months of growth. She was apparently very worried that I didn't like what she'd done, but it actually gave me ideas of what I could do with my hair on a day to day basis with a few simple kirby grips. I had my make up trial with Cat of Lipstick Kisses (http://www.lipstick-kisses.net/), again giving her very little to go on as I'm not a make-up wearer normally. considering how little I gave her to work with, the end result was good... I didn't feel like I was wearing make-up, but from looking at me I looked 'pretty' (dare I say it?!) certainly made an improvement! All in all, a good couple of trials and I was pleased with how I would look on the big day!