Saturday, 29 November 2014

Fright Hike DONE!!

Almost a month ago, my mum, our friend Lyn and myself completed the Epping Forest Fright Hike. We were dressed in hospital scrubs (over our warm attire!) with bright pink/purple owl hats and wearing false beards.
At the start line in lovely November sunshine
The route itself was tough, particularly around mile 3 where there was a mightily steep and long hill that seemed to go on forever! I knew if I stopped at all I wouldn't get myself going so I plowed on, sounding a lot like a steam train and eventually got to the top of it, turned round to find I'd powered on quite a way ahead of mum & Lyn! Eventually (having got our breaths back and heart rates under control) we were able to carry on. By the time we reached the first checkpoint (around mile 5) we'd all shed our beards & hats due to being too hot (mum had lost her beard somewhere along the route & was devastated) The last mile of that all that was keeping them going was the thought of a cuppa... upon arrival we were told that the hot water urn wasn't up to temperature, but would be ready for us at the next checkpoint! They weren't happy about that, but I was content raiding their haribo tub and picking up an assortment of snack goodies which I stashed in my pockets for later on. (incidentally I brought most of it home again as I strangely didn't feel like eating!)

We carried on going for the next 8 miles (until checkpoint 2) as it got into full darkness and the long crocodile of people that started out ended up being very spread out, so at times we were walking just the 3 of us with the pitch black surrounding us. We were all on the lookout for anything slightly spooky or out of place, but it was a very strange thing, that one of the country's most haunted forests felt so calm and peaceful at this point, we were all a little disappointed (especially when Lyn tried to call something out to give us a scare!) The route was gradually getting muddier, wetter and harder to follow directly, so we were finding alternatives by climbing over and through all sorts of trees, logs and bushes. Around mile 11 I had to stop and take some painkillers as I was getting my old hip pain starting... knowing how far we still had to go I had the drugs to keep me going, which did help get me through to the 2nd checkpoint. About 5 minutes before reaching the checkpoint I looked down, and found.... Mum's wandering beard! She was a very happy bodysnatcher at that point! We arrived at checkpoint 2 approaching 9pm. I found a seat and promptly scoffed some savoury food and had a cuppa soup as I was starting to get the shakes from lack of food/sugar etc. We were told that the checkpoint closed at 9 and if we didn't leave before we wouldn't be allowed to continue. As I stood up, something in my foot went 'twang' and it hurt like hell. I tried to persevere in silence (shedding the odd tear along the way!) but mum & Lyn soon realised something was wrong and then as well as trying to navigate the route and the ever increasing mud swamps, they were on the look out for large sticks to help me along... when 2 failed attempts with different sticks, mum helped to support my weight for a while... but I ended up having to seek refuge on a very handily placed fallen tree trunk (almost shaped like it was intended to be a seat!) We waited for the team 'sweepers' (organisers who walked at the back to pick up stragglers and the route markers) to come to my rescue... I needed someone to look at my foot to see if it was something obvious- it wasn't!! Mum & Lyn continued on (and even overtook people who had long passed us!) and I was helped to the finish (with a slightly easier route so not as much pressure on my foot) by the lovely sweepers! We all crossed the finish line ... and I was determined to cross it unaided so very slowly hobbled/hopped over the line to claim my medal (and much welcomed cup of champagne!)

Our team with our medals on the finish line

By the end of it, I felt kind of a let out down as I didn't finish it all in full unaided.. I felt defeated! however I think this was the tiredness and general emotion of what had happened over those 6 1/2 hours. By the Sunday morning I was starting to accept the accomplishment achieved and realised that hurting/injuring a foot could have happened to anyone, even people who were professional runners/trekkers so not to feel bad that it was my foot that let me down. Ultimately, my chest, heart and general body fitness held up (and I think enjoyed the challenge!) my lovely shiney puffers did it! 
By Monday (not at work) I was still struggling to walk so headed to the walk-in centre for it to be looked at by a professional. I took my sock off in the car to show mum the swelling and it was rather colourful! The nurse took a look at it and questioned about it. She started to give me a lecture about using the correct footwear, wearing them in enough etc etc... at which point i told her my footwear, and how long I had been wearing them in and everything, explained that there was no moment of impact etc... all she could suggest was that it was a severe soft tissue injury, keep it raised, ice it for 20 mins a few times a day and keep weight off it as best as possible... which is what I'd been doing since Saturday night. Eventually (about 10 days later) I was able to walk completely normally again with it being back to the right colour!

All in all it was a fantastic experience and I'm so proud of not just myself, but mum and Lyn too. Our team were awesome and we've raised over £600 .. haven't got the final amount figured out as haven't received all 'by hand' donations. Now I can have fun creating activity and craft packs for Papworth CF Unit along with donating much needed money to Clarks Farm right as the weather gets colder, and Santa Paws is due to visit each of the doggies in their care. As soon as I have a final total it will be shouted form the roof tops!

Thank you to everyone who donated and showed their support to each of us... it really helped to know that so many people (some completely unexpectedly) were happy to part with their hard earned money and sshow their faith that we would complete this challenge. It means SO much to know people have believe in me when I set my mind to something!

Lastly, the biggest, most thought about thank you goes to my donor angel. Without my lovely shineys I probably wouldn't have got to the end of mile 1 in 6 1/2 hours!! It's approaching what is going to be a very hard time of year for her family, and I hope that she was looking down on me that night and was happy in the knowledge that her gift has led to this... and all the goodness we can share with our donation!

*You can still donate if you wish to by going to www.virginmoneygiving.com/team/beardedbodysnatchers 


Monday, 27 October 2014

Less than a week to my Fright Hike & I'm feeling not quite right

So for the first time since my transplant (just over 8 months) I had a proper coughing fit last night which ended with me coughing up several lumps of gunk. I know not the most pleasant thing to share... but I haven't had this for sooo long it wasn't very welcome!

I've been back to work 3 days a week for 2-3 weeks now and enjoy being back into a routine & having a use etc, but I do worry about the whole germ issue and how being in a large open plan office with so many people (most of whom don't really care about others and spreading their germs if they get a slight cold or anything). I've had a 'risk assessment' done for my part of the office, but other than being given lots of sani-wipes and hand gel/foam not a lot else came of it.

Since mid last week I've noticed a slight drop in my sharp blows, but so small a drop each day that it's not really noticeable until you look at it over a few weeks. My overall capacity is still ok and remaining around the same point it's been for months, which is good, but the fact that my sharp blows are down would point to wards some kind of restriction in my airways- i.e. most likely, an infection.

My throat is also not liking this sudden bout of coughing, it's had so long without the pressure etc it is really quite sore, like I've been swallowing lots of sharp, dried crisps or something... it feels all scratched up :( It's hard to imagine that these new shineys of mine (one day I might stop referring to them as 'new') don't know how to cough properly... my old lungs, although pretty useless, knew how to deal with a good coughing fit, and if I knew where I was getting the issue (strange concept, but I could feel exactly where the issue was in my old lungs and almost be able to clear from that section) I could get a good huff and cough behind it and clear it... I can feel that it's my top right where whatever is sticking, but these lungs just haven't got the 'cough power' to fully get behind the gunk and get rid of it. I was really surprised when I did finally get a few chunks up last night, and I do feel a little clearer now... but the past few days have generally got worse and more uncomfortable as the day progresses.

Anyhoo, I've called Pappy like a good girl (under orders from Mum & Glen) and got a GP appointment later this afternoon to have a general check over. Pappy are happy (lol, that rhymes!) with GP checking me over & listening to my chest etc and if it sounds like infection then they can communicate to sort out some anti-biotics.

I may well be over-reacting as it's the first time post transplant I haven't felt quite right and the first proper coughing fit in relation to my old cough-fests was nothing really worrying... but combined with tiredness, a slight reduction in my interest in food (I'm still eating but not with quite so much vigor as we're all used to now) and the gradual drop in my sharp blows, we all thought best to ask for advice.

I can't afford to let myself get proper poorly... this week ends with my 30km Fright Hike and I need to be well enough, and have the energy to complete that. I didn't do much walking/training over the weekend as figured a rest was more what  I needed. We probably should have managed more than a 9 mile walk as our longest training session, but we're kind of out of days now! Ho-hum, we'll just have to force ourselves through it so that every lovely person who has faith in us and sponsored us isn't let down!

www.virginmoneygiving.com/team/beardedbodysnatchers - If you feel like checking out our team page, and even more so if you want to sponsor us :)

Below is my 5 minutes of fame in the local paper about our hike & my story etc

Friday, 26 September 2014

Seeing my CF team again & back to work

So this week has been quite a milestone (for me)... I had my CF annual review review.... and started back to work!

So I started the week with a trip up to Papworth for my CF Annual Review review- I had all the tests done about a month or so ago, and this was the session to go through all the tests and see what needed changing in my regime and make a plan of action for the following year. Now, due to my transplant and how good I've been feeling, I wasn't entirely certain what they could offer as a plan other than 'carry on'... So off I trouped back to my old Monday afternoon clinic spot. Generally in the past, the Monday clinics were busy and took forever... we generally found that we wasn't leaving till well after 6pm, so I wasn't being too optimistic about getting home sensibly- I was wrong!

The clinic waiting area was pretty empty and very quiet, there only seemed to be a couple of people waiting for the other clinic, but no CFers lurking around, and no sets of notes in the box behind the reception desk. I was shown into my room and after a few minutes the guy came in to do my lung function. He was a newbie and despite not having been to a CF clinic for about 8 months, I knew the routine of things, and how the computer programme worked better than he did. He hadn't grasped the timings of the system and kept telling me to wait, even though the onscreen prompt said to blow now... so I ignored him and read the screen and acted accordingly! I don't think he appreciated that, but the quicker I'm through my blows, the quicker the next member of the team can come in, and ultimately get me home quicker!

After he'd left we waited a few more minutes and the doctor (Nadia) and specialist nurse (Sam) came in. I was kind of expecting to have seen the physio or dietitian before Nadia came in, but it was deemed unnecessary. So we had a few minute catch up of all my goings-on post transplant (on a personal side, rather than medically) after this we got down to business. My lungs are now not dealt with by CF so we skimmed over that section (seems daft to make me do blows if they don't do anything with them now!) from a gastro point of view, everything is looking good- weight, vitamins, sugars etc etc all well within a normal range and nothing needs altering... same with pretty much everything else in my body! Ultimate conclusion, I'm doing well, to keep it up and to have a bone scan (Dexa) sometime after Oct 2015... and I'll see them again for my next annual review (unless I need them in the meantime!) Then we were out of there and back in the car before 5pm!

Thursday saw my return to work. I confused the dogs by getting up early and having a faster than normal morning routine... and really stirred them up when I headed out the door around 9am! So I got to work, had a bit of a chatty catch up with people on the team, then set about trying to get logged in. All in all, it took me about an hour and a half just to get logged in to all the systems I needed that day. Then the first spreadsheet hit my email and I needed to switch my brain into Patient Tracker mode again... a mode it hasn't had to run since February. It was always hard enough getting back into the routine after a few days off, let alone 7 months! I was pretty damn slow and had to keep asking questions- almost like I was completely new!- but bizarrely my hands knew the pattern of things for navigating the screens... so although my brain was thinking 'how do I get to that section?' my hands had already done it! Weird, but true! The PAS claw has returned.... I had to fight the urge of eating all my lunch pre midday, I got away with just the treat packet of sweeties I'd put in there... I did however find that my desk drawers had some Cadbury's Buttons so that made me happy... I know I have emergency choccie in there now, but I doubt it will last very long. I managed a total of 4 1/2 hours which I don't think is too bad for my first day back. Next week I'm going to attempt 2 full days of 6 1/2 hours... let's see how that goes!

So after work yesterday I took the dogs out for a stupidly long walk- I know I need to be walking longer distances in prep for the Fright Hike, but having been to work, I'd estimated doing about 45 minutes... practically double that we were out for. I decided to avoid the route that leads to Judy going paddling in yucky stream water, thinking that it'll just be a case of walking around those bits of tress, and coming out to another point... my thoughts were very wrong! It would have just been easier (and safer) to go the way I knew and clean the dog up when I got home... instead we walked an additional mile and a half, I fell down a hole and bashed Bella's head on the way down, making her not want to come near me for a while, The dog's thoroughly enjoyed exploring though, and we were all suitably knackered when we finally got home!

Today's agenda consists of housework, food shopping... and a nice meal out this evening with Glen's brother and his wife. We try to get together every now and then for a yummy meal - which only seems be of the Indian variety, 3 of 3 get together's have been in an Indian restaurant! Looking forward to it as we always have fun conversations and talk about lots of TV shows, swapping ones to watch/avoid as we seem to have a lot of the same tastes. A nice end to a big week.

Tomorrow Glen is off to a game's convention and so me and mum decided we should go out for the day too... so we're off to Madame Tussaud's and who knows what else we'll get up to?!!

Remember to pop along to my Fright Hike sponsorship page and donate/sponsor me to help spur me on through longer training walks. Thanks to Glen's fantastic work colleagues, our target is really close to being achieved already! Dig deep and help us to help Papworth & Clark's Farm :)
www.virginmoneygiving.com/teams/BeardedBodysnatchers

Thursday, 11 September 2014

Time for some reflecting

So today is 200 days since having my life saving double lung transplant... doesn't time fly when you're having fun (and breathing easy!) Over the past month or so (really since hitting the 6 month mark in August I guess) I've been doing quite a bit of thinking about how my life has changed... but also just how things were pre-transplant. I wouldn't say this was entirely off my own back, I've had quite a few serious (ish) chats with people about what I can do now and how this differs to my life before and it's got me thinking a little more about everything.

Pre-transplant. (The early years!)
I wasn't diagnosed until I was about 5 1/2 years old (by today's standards that's pretty late) so I had quite a bit of scarring damage already sat in my lungs when the doctors first got their hands on me! Through primary and secondary school, I was very active, doing almost any activity available to me, which helped massively with physio, and chest clearance. The eating side of things was never a good topic, and was a frequent cause of arguments and unhappiness. As I got into college, my exercise regime diminished, to pretty much just walking to/from college etc. I did do a bit of swimming from time to time, but nothing regular. Throw in a change from GOSH to an adult CF clinic at London Chest (LCH) and my whole CF life was kind of derailed. I never felt that I could trust the team there, so although they were altering my regime (supposedly for the better) they never really took into account of what I wanted/felt... all in all I became a lot less compliant with things, especially nebulisers and physio sessions. This fell in perfect timing with me going to Uni and being away from home. I no longer had mum breathing down my neck to do my treatments, or to eat at set meal times etc. I was suddenly free to do as I wished! Que a decline in my overall health.
I had my first ever CF related admission during the first year of Uni (age 19) which was quite a shock to the system. My lung function  had declined and my weight was pretty naff, although I think I did manage to pretty much maintain it despite having to cook for myself! During my admission, the consultant (in her ever lacking bedside manner) strolled into the room and basically said "if you don't buck your ideas up, we'll be putting a port in your chest and doing a gastrostomy" then turned on her heel and left me reeling with these new terms and thoughts of impending surgeries. Quite rightly, this freaked me out and I had quite an emotional conversation with my mum (who was probably in the middle of her office) I outright refused both of these suggestions and promised to myself that I wouldn't let them happen, I was going to do better and get myself well away from those possibilities.
In a nutshell, I couldn't prevent my lung function dropping due to catching Cepacia (a nasty bug that is very clever and resists most anti-biotics. Once caught you need extremely rigorous treatment quickly in a vague hope of getting rid of it.) and my weight never really did much - maybe fluctuating by a kilo. By the time I was a year out of uni, my lung function was gradually dropping into the 40-50% range, and I was needing more regular IV courses. Having had long lines through my arms for the past 4-5 years I was facing weeks of pain and discomfort with each course. It got to the point that I couldn't even last 2 days before needing the line changed due to it getting blocked and painful, so I finally gave in and accepted I needed to have a port-a-cath put in. 
In the summer of 2010  I had my port put in my chest. It was pretty much a pain from the start. It was in a ridiculous place (right in the centre of my boobs) so I had to butcher all my bras and remove the underwiring, it was also very stiff to administer anything, so a lot of force was required to push through bolus syringes of medication, and I couldn't ever have a drip running without a machine to pump it through, oh and it never bled back- which was one of the big selling points to me was that I'd no longer need to have blood taken through my arm, it could come out my port. Throw in the fact that it had to be flushed every 4-6 weeks and there was suddenly a lot more to take in than first thought... and now it was in me, there was no going back! In hindsight, it was the right thing to do, it did make doing IVs so much easier, and when it wasn't accessed it could be well hidden as I didn't (still don't) have the habit of revealing my boobs to all and sundry.

Pre-transplant (23 onwards)
I think my health did start the downturn when I went to LCH, but having had a few even worse experiences with some of the staff etc, I decided to change my care to Papworth. This decision was based on 2 key points- it made sense logically due to travelling, and if I ever got to the point of needing transplant (wasn't something I'd ever been talked to about, or even considered as being a route for me) my whole care could be managed by one hospital... and if it was good enough for Royals, then it must be good enough for me :)
Even on my first appointment with Papworth I realised how my care could be maintained and looked after in such a different way. Although within a few days of my first appointment, I was admitted for a couple of weeks, I had gone into my Papworth life with a more open way of thinking. They wouldn't admit me so urgently if they didn't see the need for it.  I had a heavy dose of new anti-biotics (they were actually trying new things with me, this was novel!) and had a strict regime of physio and saw the dieticians regularly who organised more food than I could shake a stick at. I saw more people before lunch here, than I did in an entire stay at LCH. I got out after that admission and did genuinely feel better. They were going on the basis of having semi regular 'MOT' admissions in the first year in order to try to kick my bugs into touch, with the hope that it will prolong the need for more intense admissions in the future.
Ultimately my lungs, although getting a fraction better initially, just couldn't carry on under such harsh abuse from the nasty bugs having fun and games in there. My lung function kept dropping to the point of now being around the 35-40% range. Now transplant was brought up quite seriously. This was a shock to me (and my family) as I'd always been so well, transplant was for sick people, so it didn't seem right for it to be considered for me. At this point I said it was something I'd consider in the future, but not even worth considering now. 
Next suggestion was the point of tube feeding as my BMI was never getting above 18 (into the normal range). I'd had a bad experience with a nasal tube at LCH and wasn't keen to try it again, but this was better than the alternative- a permanent stomach tube. So begrudgingly I tried the nasal tube on one admission. I got it down on the second or third attempt, but the tube itself only stayed down for a maximum of 5 minutes, but it was a good start. Next admission I tried again, got it down and even managed to tape it to my face and start watching TV... about 30 minutes later, a slight throat clear and hey presto! Tube back up. After numerous talks, demonstrations and my body's unwillingness to put on any weight we all decided it was time to have a PEG (stomach tube). The op went well, the post op phase started off OK, but soon took a turn for the worse when my oxygen levels refused to go above 80%, and one day I ended up as an emergency admission into Papworth as my oxygen levels (sats) weren't even above 60% - I'd turned a funny colour of grey/blue, and basically had no energy to even move, I was ready to curl up and just let what was going to happen, happen. Luckily, Mum & Glen got me to Papworth quick smart and within about 10 minutes of being put on a high level of oxygen I was my normal colour and back to being myself. This saw the start of my 24/7 oxygen needs. After this, I was permanently on oxygen- I had more portable cannisters delivered to home, along with a machine for when I was at home (and later got one for work too).
Although the oxygen obviously helped with my energy (and colour!) it was the start of me pulling back from doing everything that made me me. It was such a gradual decline, I don't think I ever really noticed (along with those that saw me daily) just how bad things were getting. It was only when people who only saw me rarely would make a comment (mostly to mum who then relayed them to me) that it would strike home how things had changed over that intervening period between visits. By the August of 2013 I was seen in the transplant clinic and it was felt that it was time for the assessment. My quality of life was majorly impeded by my oxygen and lack of lung function (now sitting mid 20%) despite still working and doing everything possible, I was permanently tired, and even only working 5 hours a day, I'd come home and normally be asleep on the sofa when Glen got home from work, I'd wake enough for dinner, then be dozing again until bed. Even after 12 hours sleep I still felt tired. My body was running on empty. My weight however was starting to increase thanks to the tube feeding, and I even had a form of a natural appetite, so I didn't have to tube feed as often as originally thought as I was actually eating like a normal person (some of the time!) I think just having it there as a back up took away a lot of the stress and pressure that had always accompanied meal times- we were now able to enjoy what I did eat, and if it wasn't a 'normal' adult amount, then I could feed overnight and not lose out on the calories/nutrients I needed. A weight had been lifted (no pun intended!)
September 2013 I had my 3 day assessment for transplant, and was followed up around November time. The doctors all felt it was time for me to be listed for double lung transplant. It was kind of what I was expecting them to say, but me being me, I refused to go on the list until the New Year- mostly because I had my holiday to Antigua booked, and I didn't want to go on the list before that and potentially miss out on the holiday if a call came in before! Silly I know, but you can't stop this girl having her holidays! As it turns out, the holiday was where Glen proposed so I would have missed out on having the holiday proposal and maybe wouldn't have even got the proposal yet depending on what happened!) So end of January I saw the team again and it was D-Day. I signed all the documents to put me on the active waiting list, was told it would be a few days before everything was 'official' but I was now waiting, and should be ready for a call anytime (although realistically it'll be months!) My lung function was now about 23%.
February I was started on a course of IVs (a week in Princess Ward, then finishing off at home) as I was feeling quite buggy and lethargic (more so than normal). Less than a week after finishing this course I got my call! Everything seemed to line up nicely for me- having just come off the back of an IV course, I was in a relatively stable position chest-wise. Obviously it was quite a shock (as told in previous posts) and everything seemed to go really slowly on one hand, but whizz by on the other!

How was I pre-transplant?? I was tired all the time, I had permanent back/rib ache from constant coughing, my hips were hurting (I was obviously holding myself all wrong due to the coughing), I was getting a lot of stress headaches from coughing, I was grumpy and fed up. I hated the fact that I was an imposition to my family, nothing could be done spur of the moment, it always took a LOT of planning to make sure I had enough oxygen, extra tablets, spit pots, places and provisions to rest if needed etc. Even a 'quick' trip into town seemed like a massive expedition that I needed accompanying on in case of emergencies. I was dependent on other people just for me to exist. Ultimately I was unhappy and fed up- not that I let on to others around me... well not consciously, but I'm pretty sure they all could tell.

It's only from sitting now, and looking back that I can admit just how unhappy I was. I wouldn't accept or admit it to myself back then. It was almost like if I ignored those unpleasant feelings then they didn't exist, and therefore couldn't do me any harm.... but in reality I think bottling them all up just made me feel even worse as I wasn't sharing my true feelings... I wasn't being true to myself, or those around me. Not a good thing!

200 days post transplant
I can honestly say that things are going great! I had a review appointment on Tuesday and they're really happy with how things are going *touch wood*. My x-ray is clear, my weight is good and most importantly my lung function was awesome- the total amount I can breathe out is ABOVE 100% and my FEV1 (how much I can blow out in 1 second) is at 96%. Compared to about 7 months ago when neither of those were above 25% I'd say that's bloody brilliant!! My exercise tolerance is amazing, the thing that holds me back is generally my limbs not being strong enough to do everything my mind and chest wants to do. I generally do feel so happy! Honestly, the only thing that I am a bit fed up with is that I'm sat at home doing boring housey things all the time, and not really having too much of a life purpose. I'm in the process of sorting out a staggered return to work (Drs gave me the OK to start back now I'm post 6 months) so hopefully I'll start to feel a bit more like a 'normal' adult again going to work. Although I'm sure once I'm back into the working life I'll miss all my free time!
I am now no longer dependent on anyone, if I want to go out for a wander, I just go. If I want to go swimming, or for a bike ride, I get my bits and go. Planning time away more than a week in advance is now possible as I can pretty much rely on the fact that I will be well enough, and have enough energy to cope with whatever is planned. Days out can be done spur of the moment, I don't have to worry about only having x amount of oxygen cannisters until my next delivery.
I can cook my own dinner without fear of blowing up the house, or having to come off oxygen for time in order to cook using gas. In our new house, I wouldn't have been able to be in the kitchen, dining or conservatory (all open plan) while Glen was cooking due to the fire risk so I would have been confined to the living room only.
I now have such an appetite and interest in food that I want to get into baking/cooking properly, whereas previously I had no interest at all in anything food related. I was tempted to make Glen a birthday cake, but after my first attempt fell a bit flat, I thought it would be more of an insult to serve him something pathetic... so I defrosted a bit of our wedding cake for us to munch through! Much nicer.
Obviously June saw us get married and go on our honeymoon. Although we'd planned it with the thought I'd be on oxygen and very tired, the fact that I got to that important milestone with nice new shiney's was beyond amazing. It probably was the best wedding gift (lovingly sent from my donor angel!) we could have received. I was able to be part of every second of the day without having to take time away to rest. I enjoyed walking down the aisle unassisted (by person or oxygen), I could have my first dance unimpeded by wires and I could generally float around the venue in the princess dress that was sooo me! None of that would have been possible if I hadn't got my op. Our honeymoon, we barely stopped! We walked sooo much, I could run, play, climb, dance etc... (yes I'm a big kid!) and generally just enjoy being with my husband in Disney, practically without a care in the world (I was missing my Judy obviously!)
Since then, I've been building up all the exercise I can do- starting off with support from the gym trainers, or family/friends, but now I'm off to fitness classes, going swimming, doing epic walks with the dogs, going for bike rides etc... none of this I really saw myself being able to do again... even the thought of having the transplant didn't really compute just how much my life has changed.

When a 'normal' person has to take the dog for a walk, or force themselves to the gym after a particularly 'foody' weekend they see it as a chore 'I suppose I'd better take the dogs out for a walk'... or even a trip to the supermarket to do the weekly food shop. For me, although sometimes the timing isn't great, or I have to juggle things around in my day, the actual act of going out and doing whatever is a happy thing... because I CAN do these things for myself now! I'm sure over time the novelty will probably wear off and dog walking, exercising and food shopping will be seen as a pain in the bum, but for now I'm grateful for them. I appreciate just what living is, and I'm doing just that... I'm LIVING my life now, not just existing.

200 days on for me being able to live, means it's been 200 days that my donor's family have been without her.Thank you to my wonderful donor angel. She was a brilliant and kind lady who even in death was able to give the most wonderous of gifts... she gave me back my life! 

Wednesday, 10 September 2014

Surprise 30th birthday trip

So I had a busy few days...

Last Thursday I took the doggies to the kennels (for Judy the first time in about 8 years she has been left in a kennels- I was a very worried mummy!) I went for an assessment at the local adult education centre for possible enrolment onto an accountancy course (passed with flying colours, and even scored better than the tutor on the maths section!) and then went to pick up Mr Glen from work ready to start his mystery 30th Birthday trip.

We stopped the night in a Holiday Inn in Corby, about an hour and a half from Glen's work. We had a lovely meal- albeit my curry was far too hot, even with the extra yogurt they brought to cool it down! The room was nice and comfy but we had to be up and out relatively early to get on with our day. Breakfast was nice (even got fresh eggs and pancakes cooked and brought to me personally due to the whole buffet/germ issue with my transplant). We then got on our way. Glen drove and about 45 minutes before arriving at our destination, Glen guessed where we were headed... and only because he saw the giant brown attraction sign. We were heading to Alton Towers!

Glen on the cable cars
When we arrived we parked up and headed into the park. I couldn't believe the cost of tickets now... luckily we got bogof otherwise it would have been practically 100 quid just to enter! Anyhoo, we had a lovely day round the park- experienced all the rides we wanted to with very little queue times. The longest we had was about 35 minutes for Smiler. As this was a new one for us, we figured it was ok to wait that long, although with the number of spins and twists my head did feel a little delicate afterwards. I know it's a world record holder for highest number of inversions-14- I do think it was one or two too many for me! Glen and I decided to bite the bullet and upgrade our day ticket to an annual pass for Merlin attractions in a bid to encourage more day trips to places.. we only need to do 2 more trips to theme parks in the next years to get our money back!

After our day we headed to our hotel for the night (about an hour away) We had a lovely trip through teeny tiny country lanes and eventually ended up just outside of Stafford. After we'd checked in and had a brief rest we headed into Stafford town centre for dinner... only to find that it is little more than a ghost town! Considering it was a Friday evening we probably saw a maximum of about 10 people walking around, and very little by way of eateries on the high street... weird! We eventually found our way to Frankie & Benny's... were served by a newbie on only her second shift. Provided us with some light entertainment, and a slight worry that we wouldn't get what we'd ordered... but all in all the food and evening was pleasant. Back to the hotel for some much needed sleep!

Saturday morning we had breakfast (not as nice or plentiful as the Holiday Inn the previous morning), checked out and headed back to Alton Towers for a day in Splash Landings water park. We had a blast (even though it was mostly blurry due to not being able to wear my glasses!) We did the flumes and water coaster, rode the lazy river numerous times and generally just acted like big kids for a few hours, I had no chest or tiredness issues etc. The only thing I did manage to do, was injure my foot by landing strangely coming off one of the slides. It felt fine after a couple of minutes... until later in the afternoon in th car home when I took my shoes off, then found I couldn't get it back on as it had practically doubled in size! I ended up having to strap it up for the following 2 days and try to keep it elevated and rest. Easier said than done when you have jobs to do and places to go... but it's pretty much sorted now, an odd twinge if I put weight on it in a strange way. After finishing in the water park, we went into their buffet restaurant for yet more pizza based foodage. We filled our boots then made our way home. Having made a brief stop in Ipswich for Glen to pick up his car, we eventually got home Saturday evening. I sat with my foot elevated and we vegged in front of the tv and had an early night. All in all Glen had a fab birthday surprise trip, and I enjoyed it too! Duh!

Tuesday, 2 September 2014

The past few weeks

So recently things have settled down a bit and I am actually taking things a bit slower- much to the appreciation to those around me! I can't stand sitting about doing nothing (as I'm sure you're well aware by now!) so have still been trying to fill my days with things a little less hectic...

The dogs and I have been doing a lot of exploring of the local area, on lots of long walks... Judy loves this and looks like she just wants to keep going, whereas Bella often seems like she's about to drop on the spot... but within a few minutes of being home, she's up for more antics! We've explored all around the local barracks' grounds, and woods/parklands. Found some really lovely walks and even got Glen out a few times of a weekend which has been nice. These extending walks have been good practice for my sponsored event I've now signed up for (details below) and look to keep getting longer.

I'm raising money for Clarks Farm Greyhound Rescue and Papworth Hospital NHS Foundation Trust Charity by doing the Fright Hike through Epping Forest. Please sponsor me at www.virginmoneygiving.com/team/BeardedBodysnatchers

My mum, our friend and myself have signed up and want to raise money for the two charities mentioned- Papworth due to all the fab work they've done, not just for me, but for all the CFers under their care... I wouldn't be where I am now without them! I'd like to raise money to buy them some kind of fitness/gym equipment for the patients that can't go into the unit gym due to cross infection issues. I know when I've been an inpatient and felt up for doing some kind of exercise I've been really restricted as the equipment they have is in the unit- if you grow particular bugs, you can''t go in there :( We're also trying to raise money for a local retired racers rehoming kennel... it's where we got Bella from and think they could do with a little helping hand with winter fast approaching- maybe get them some new blankets or bedding etc. If you could spare, even a pound or two it will all be a help to get these 2 charities a little extra help :) *smiles sweetly*

I mentioned this a while ago, but am looking at doing a form of education course, I've pretty much decided on starting up a level one accounting course. Yes, it's going to cost me money, especially if I progress to the higher levels without it being part of a job, but it will get my brain (yes I do have one hiding somewhere in my head!) working again, will give me new skills and hopefully will give me motivation and the tools to look for a new kind of job which will stretch me and give me a bit of job satisfaction again. I go for an interview/assessment later this week to see if I can sign up to the local course, so fingers crossed!

A few clinics ago I asked for information on my donor... the first time of asking I got put off (is what it felt like anyway!) so the next time I went up there I made sure that whoever in the team I saw, I mentioned that I wanted to know at least a basic amount about my donor. By the end of that clinic I was taken aside by the nurse who had found out some information for me, but wanted to know what it was I wanted to find out (she only had restricted basic knowledge, and if I wanted more then she'd have to go and request it etc) It turned out she knew what I wanted to know so we could have our talk about it... mum obviously wanted to be a part of this conversation so she came in too. In a nutshell, my new shineys came from a lady in her 60s who died from something head related, and had no other concerning medical issues listed. We also (mum and I discussed this at great length after) kind of sussed that she was from the North... but as they tx team can't give details as to whereabouts donor organs have come from she couldn't say.... I'm glad I know that they came from a lady, as now we can think about getting a fitting tribute for the garden that is appropriate- I didn't want to get something really feminie if the lungs had come from a bloke for instance! Ultimately, I want to write a letter to her family (assuming she had a family of course!) and show them a picture of the tribute and let them know just what her gift has given to me.. but I don't feel quite there in terms of knowing what to say!

I've now finally been able to start swimming again as my steroid dose is below the level that the doctor said it should be... literally the days where I was reducing the dose I was paying close attention, and as soon as I had done my 7 days at the lower dose I was straight away asking Glen if he wanted to go swimming with me! We've been 3 times now to or local leisure pool to play in the wave area, been on the slides and in the rapids area... it is SO amazingly awesome to be able to swim, and play about... dive under water, do handstands and roly -polys etc all without a worry. I feel so FREE!! I can tell that Glen is worried about me most of the time, and any slight throat clear or splutter (I've never been any good at keeping water out my nose!) and he's there questioning if I'm ok... and surprisingly I'm fine :D my chest is feeling worked, but in a good way, there's no stupid choking or struggling to get air in... I don't have to take 10 minute rests on the side after swimming 1 measly width.... and most importantly I can swim wherever I feel like in the pool as I don't have to keep within 2 foot of the wall attached to someone carrying my oxygen along the side. Ultimate freedom and happiness :D

Monday, 18 August 2014

What to do with my time now?! --> New look blog!

Firstly, I hope you like the new look to my blog.. in a bid to do something more interesting with it, I gave it a bit of a revamp, new background and colour scheme etc. I'd love to be able to design it all myself from scratch and not use the standard templates etc, but I know my limits!! Also, I get distracted (and bored) very quickly so I stuck to just these changes for now so something actually got done!

So since the wedding and honeymoon, I've felt a little like I have no purpose... I had so much going on in the run up to the wedding.. with post op recovery, wedding planning, honeymoon planning and moving house.. now everything just feels kind of flat! I'm feeling SOOO much better health-wise that when I'm just sitting around the house 'taking it easy' I'm bored very quickly and feel I should be doing something more worthwhile.

Mid June I had a clinic which was also a bronch/biopsy day. Clinic went well and I was taken over to the ward to be prepped for the bronch. As normal it wasn't a guarantee thatit would proceed to biopsy, but I just kind of felt that this time, I was going to be staying over night. I had a selection of sweeties and tv/films on the hudl and was ready for a night in Pappy. I went down to the 'bronch room' and had to wait a little while for the previous person to finish up. There was an upset girl talking on the phone just to my side, and without trying to listen in, I found out she was a fellow CFer who had had a bad clinic and was facing the prospect of having an admission, which was obviously a surprise to her... once she was finished on the phone I just felt I had to try to console her, and we got talking. By the time I was called through for my bronch she'd stopped crying/swearing and I hope I reassured her a little. She at least took my mind off the upcoming bronch (I didn't feel nearly so anxious as I had done previously, but this distraction really helped!) All went well, and once I'd recovered back in my room I found out they had done the biopsy so I was staying for the next 24 hours for monitoring until the results came back. The following afternoon I got the news that the biopsy was all good, with no signs at present of rejection, and the infection that has been lingering in my right lung, is still present, but looking far better than the last time they went in. All in all, very encouraging and it led to them stopping 2 lots of nebs and then making a plan for reducing other meds bit by bit. Woop! During this time with the team, I asked about getting information about my donor... I kind of felt like I got put off somewhat on this occasion, so I thought I'd leave it and try again at the next clinic!!

The end of June I took mum out for an early  birthday treat... we went to Chantry Park in Ipswich for a 'boyband' fest. Mostly for Backstreet Boys, but there was also 5ive, Scouting For Girls, McBusted, Diversity and some young American group who were pretty shite and very forgettable! We had a super fantastic day. It started off a little on the damp side and we spent the first few hours trying to huddle under the umbrella and cover up with the blanket as much as possible... by mid afternoon (around the time that 5ive were finishing up their set) the sun started to break through... and by the time that Backstreet came on to do their 45 minutes or so all clouds had departed, the sun was out, and raincoats, jackets, brollies etc were all discarded and we could have fun in the sun with our boys! It was awesome to see them performing so close (we were in the gold circle, only a few rows of people back from the stage) and as a lot of people were there for McBusted, we had a lot more space to sing and dance during BSB as they took that time to go get food or drink etc. All in all a fabulous day... just made us want to go on the BSB Cruise even more :(

The following weekend Glen and I went to Northampton for his birthday flight simulator experience... his birthday is September, and this was LAST year's present because he was rubbish and hadn't got round to booking it, then it got cancelled and ended up being in July. The drive there was simple and pain free.. We arrived super early though so sat in the car eating our sandwiches and generally killing time. When it eventually got to a suitable time to turn up, we went in. The reception area was decked out like an airline lounge with the desk made to look like cabin furniture etc, cool if you're a sad plane geek like me! Glen got talked through his introduction about what was to happen, and they decided what 'routes' he would be flying. Then we were taken through to the simulator. It was really cool and made to look like an actual cockpit. I sat behind the 'captains' seat and was able to watch everything throughout. Although I was obviously interested in how Glen did with taking off, navigating and then landing, I couldn't help but be nosy and spent a lot of time looking out the 'windows' at the scenery and everything around... Yes I'm a sad plane geek! I admit it :)

Having got our new house finally ours, the next job came furnishing. So having ordered stuff we eventually got it delivered... Only to find that 2 of 3 units were either damaged or wrong (and this was just the bedroom, not counting the stuff for dining room!) Long story short, we are due to get the last item for our bedroom next Tuesday then hopefully we can finally have a proper bedroom! I have enjoyed the flat pack building... I find it like a more physical jigsaw which is cool! Although I do get annoyed when packs don't include something pivotal... If this wasn't the case we would have had our over-bed unit sorted at least!

Glen and Bella having cuddles
So, back to the not knowing what to do with my time/being bored... Since we move we've been debating whether we should get a new furry baby... After honeymoon I started frequenting doggy rescue websites (and even physically went to a couple) After visiting to get one dog called Stella (a mongrel) with Judy, we realised that going to a general rescue kennel wasn't the best way of dealing Judy with the prospect of a new friend... so we re-planned. I went with mum to pick up her greyhound from the kennels after her holiday and asked if I could look at their ones needing homes that matched our thoughts on what Judy might like. I met 2, a boy and a girl, but fell for this lovely little girl called Keeley. I took a picture and sent it to Glen, then we went home to think on it. The following weekend we took Judy (and Glen) to meet Keeley and hey presto, we decided to get her. I waited until the end of the following week to bring her home as I knew I'd be out a couple days that week and it wouldn't be fair to expect a new dog in a new place to behave all day being left. The following Friday, mum came with me and we picked up our new furry baby. We renamed her Bella as neither of us liked Keeley, and she didn't respond to it. She seems to be used to Bella now, but the recall is quite difficult to drum into her. We had a few teething problems, mostly her crying through the night, and Judy not liking having to share her house and humans! We're getting there slowly, and most importantly, we haven't had any fights between the girls and we're generally getting to sleep through the night now! I'm getting to take lots of lovely long walks with 2 beautiful girlies now... although Bella isn't used to such long ones and she struggles sometimes to keep up with Judy and I!


Friday, 8 August 2014

Busy Few months... pt 3

First off... I've surpassed 2000 blog views now... thank you to everyone who has read my ramblings! I didn't honestly think that all my crud would be interesting to ... well anyone! :D


So, obviously I'm now a married lady! 9th June was the magical day that I thought would never happen... both through the groom's reluctance to actually propose, and also through ill health! When we set the date back in January, I was on oxygen 24/7 and wasn't even on the transplant list so I assumed my day would be ruled by my medication and rest periods. Little did any of us know that the plans being made for a small/light dress, factoring in rest time for me between key things and trying to source/make something pretty to 'hide' my oxygen canister and tubing weren't going to be needed.

After my transplant, (as already explained) I changed my dress due to being able to wear a different style (and also heavier, fuller dress), but I was also able to actually plan a full day, including a proper first dance and not needing the consider rest periods. The day before my wedding, Mum and I went to stay in a B&B a few minutes away from my venue. We had my make-up/nails lady come meet us there for a bit of a girly afternoon sat in the pub lounge. We both had our nails done and discussed the plan for the following day with regard to make-up. After Cat had done our nails, mum and I went for a walk around Burnham-on-Crouch. It's a lovely little coastal town and the sun was shining so we had a really nice wander pre dinner to chill out. We returned to the B&B for a very leisurely and pleasant dinner. We were both fairly tired having had quite a full on weekend (the Saturday for me was about getting everything together- picking up the dresses, sorting out bags for taking away, including medications for both the wedding and the honeymoon, and generally trying not to freak out too much that something had been missed... and a trip to the local Medieval Oyster Fair- which mum was helping a friend out on a stall) By Sunday evening, we were both ready for sleep... luckily the beds were lovely and comfy and despite imagining being awake to all hours, I fell asleep pretty easily. 

Wedding day had arrived! We woke up and had a fabulous continental breakfast in the pub downstairs, then got our stuff ready to head to the venue. My best friend (and bridesmaid) arrived closely followed by the taxi to take us all down to the venue. We had a fun mini tetris like game trying to get everything and all of us into the taxi but we did it! When we arrived at the gates, they were locked, and my hairdresser was already sat there waiting. So I had to call into the venue 'hi it's Karen, the gates are locked'... 'sorry, who?' at this point inside I wailed... my wedding day, and the venue didn't know who I was!! Arrgg! So I repeated who it was, slowly and carefully reminded them 'I'm getting married here TODAY'... a few seconds of silence, then recognition dawned and she apologised and come flying down the driveway to open the gates!


The morning then passed in a bit of a flurry... mum, myself and Zoe were all down to have hair and make-up (of sorts) done so we had a nice rotation going on. My aunt also wanted her hair to be done by Heather after we'd all been sorted out. My cousin turned up as photographer, and accompanied by his wife they set off round the grounds taking lots of piccies before everything was set up. They also took photos of the getting ready process (as did Zoe between getting herself ready). The weather was a bit of a worry, as when we woke up, it was grey and murky... being coastal it was a strange 'almost' mist which was being forecast to turn into big storms and heavy rain by the evening... brilliant!! After about an hour of being at Creeksea, Zoe said she thought the sky was brightening and the clouds breaking up... so she then spent the rest of the time int he cottage running between the door on one side, and the windows on the other with a running commentary about what was happening in the sky!! By the time it got to ceremony time, it was brilliant blue sky, with an occasional fluffy white cloud, lovely warm (but not hot) sunshine... a perfect early summer day! About an hour before the ceremony it was time to get dressed, firstly I helped Zoe get herself sorted into her dress while mum got into her posh frock. Now both my key helpers were sorted they both helped me get into my dress. Somehow, between it coming out the dress carrier and getting onto me, it ended up with numerous soot like marks all over the skirt... this sent me into a proper bridezilla swear-off... my dress was ruined!!! Mum and Zoe zoomed into a frenzy of brushing at each individual mark and got 99% of them off, and my cousins wife said she couldn't notice anything... but I knew where each bit was. I took a bit of calming down from that!! I came out the room to see my dad, and the the registrar turned up for the official pre-ceremony chat. She chucked everyone out to talk with me privately to check I still wanted to go through with it (duh!) and to get all the official questions done for the certificate. Everything and everyone was ready to go! As we came out the cottage and got ourselves prepped to head to the orchard, a spied a few last minute stragglers running from their car, still tucking in shirts and tying ties... Once I found out later who this was it didn't surprise me in the slightest!! Zoe had a minor panic about the speed of walking in, and when she should go etc, but a quick talking to by my co-ordinator and we had things sussed. Numerous photos later, and we were good to go... cue the music!!


So I hadn't felt nervous at all in the build up... even when the music started I felt fine... until about halfway down the aisle it hit me 'omg mum, now I'm scared!' It was a lovely ceremony in the orchard, birds tweeting, sun shining, everyone either smiling or crying... and despite the fact that I was happy, there doesn't seem to be a photo of me not looking grumpy or terrified! At one point Glen had a spider crawling up his chest, it was quite distracting, and so i had to bat it away... but it could have easily looked like I was about to slap him round the face! Fortunately it would appear that no-one but Glen noticed this! And then we were married!! Woop!
Mr & Mrs Mills

Our Disney themed Cake

I won't bore you with all the ins and outs of the rest of the day. If you were there, you know how lovely it was, and if you weren't there... then you missed out! lol. Anyhoo... there was much dancing, much merriment, the food was glorious, music and company great. Had I of taken 18 months-2 years (the standard for wedding planning) I don't think it could have turned out any more perfect! The reception marquee looked understated, but awesome with my Disney balloons and simple homemade place settings, the wish tree table looked cool once people started adding their tags on, and the cake... OMG! It looked fabulous and tasted divine!!

The Wish Tree
The Reception Marquee

Table Decorations
 At the end of the evening we said our goodbyes to everyone, packed off the last few people into their taxis and then we retired to the bridal cottage where we very quickly both flaked after such a full on day! 'The morning after the day before' we were greeted to a fantastic breakfast spread laid on by magical silent fairies while we slept. We had tea, coffee, juice, toast, croissants, cereal, yogurts and all sorts of locally produced condiments etc... Glen not being much of a breakfast person had a little, but I tried my best to make it look like we'd had a fair bash at devouring the food! Once breakfast was done, we had to load up the car and safely get everything home again via a stop off at first the travel lodge to collect dads suit to return, and then the cake lady's house to return her cake stand. We eventually arrived home as man and wife (I didn't make Glen carry me over the threshold seeing as we've lived together for so long it felt a bit daft!) No rest for the wicked as we had to drop the dog and Glen's mum over to hers, finish getting the bags/car ready for our honeymoon adventure, do some food shopping AND go and be nosy at a house fire (and fire engine/ firemen) across the green!

Early Wednesday morning, we were up... Glen making sandwiches and me doing last minute nebs and medical packing. By 7.15am we were on our way to France! We got to the EuroTunnel port on time, to find that our train had been delayed by half hour, so had some time to kill in the terminal. After a while it was time to board the train and Glen had completed his part of the journey. Mid train journey we swapped places and it dawned on me that I would a) have to drive off the train, and then b) drive in FRANCE!! Needless to say, I managed both without incident... although every time we passed a lorry it made me shudder for some reason! We got a little lost at one point, but it only added about 10-15 minutes onto the total journey as Glen quickly jumped onto his phone with GPS to get us back on track... it could have gone horribly wrong if we hadn't done that so soon. 
Disneyland hotel
We arrived at the Disneyland Hotel, unpacked the stuff out the car and rocked up in reception travel worn and sprouting bags from all places to find a huge grand room, with giant staircase... I felt SOO out of place at that point in time! We checked in, found our room (very impressive) I did a quick neb and we were out into the parks! Our first point of call was to figure out where we could eat, as we figured we should eat and get an early(ish) night. This plan didn't work out as we couldn't find any of the restaurants we could use our meal plan in that had spaces. We eventually laid ourselves on the mercy of a lady in the Blue Lagoon restaurant (attached to Pirates of the Caribbean ride) and she got us a table booked for 9pm. So we had a couple of hours to kill so hit some rides. We returned about 8.30pm hoping to get in a bit earlier as we were both pretty knackered. We were seated a short while later, and had probably the best meal of our entire trip. Every thing we ate got a noise of enjoyment which surpassed the last... neither of us could pick a favourite part of that evening... the food, environment and staff were all stunning! We returned to our room and collapsed.
My Flaming Creme Brulee in Blue Lagoon
We spent most of our time doing LOTS of walking, lots of ride riding... and it would appear from the number of photos, lots of eating!! I ended up coming home the heaviest I had ever been  (since then I have surpassed that weight briefly before I realised I had to control my eating somewhat!) We tried different types of food, and enjoyed a variety of different experiences to what is available in America. Overall, the 'Magic Kingdom' park could have been mistaken for Florida (we had very Orlando-esque weather for the first few days) but the 'MGM/Hollywood Studios' park was seriously lacking in atmosphere. So much was lost by it being in French (I know it was in France, but the staff made little effort to play their roles or inject any enthusiasm into their jobs) We thoroughly enjoyed our time there, would probably return in the future, but not for so many days, and certainly NOT be there over a weekend! Although, our next Disney foray is definitely going to be a 'proper' honeymoon to Walt Disney World in Florida... We treated this as a mini-moon as it was planned pre transplant and several things would have been done differently if we hadn't thought we'd be travelling with oxygen and a very poorly Karen!!

Glen enjoying a doughnut
Me with the Spring Flowers display
Our journey home was pretty uneventful, although we were getting a bit squeaky with timings for reaching the terminal in time for our planned train... made ten times worse by the fact it took us over an hour to get from the first point of the terminal through both of the check-in booths... but which time we'd obviously missed not just our train, but the one after! Luckily we were allowed on the next one and only ended up back in England about 45 minutes later than planned! The rest of the journey was fine (although I was incredibly tired!) and we arrived home safe and sound!


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!