Transplant Nose Dive & Our Mini Break @ Deerpark

 

Been a while since I last wrote - Might find this one a bit hard as my heads all over the place but I need to do something today else I'll go out my mind....

A few weeks ago I had clinic at my local CF centre, I had noticed a slow but gradual decline in my lung function but as it wasn't much I wasn't too concerned about it. I felt really well in myself, I wasn't coughing more or producing any gross stuff.

My consultant however, thought there was cause for concern & wanted me to contact Harefield, which I did straight away after throwing a massive hissy fit at him - because sods law, in just a few day's time I was meant to be going away for our log cabin trip. Stefan & I booked it last November as a 'Christmas Present' our first break away down to Cornwall, only for the weekend to spend some quality time with each other. Nick knows me too well, he knows I don't mean my strops directly at him & explained that we all knew this wasn't a cure & that I've just swapped one shitty rountine with another. I have to be even more careful these days which he knows I fully understand, proberly more than anyone as I appear to have a 'straight head ' on my shoulders... ;)

After speaking to Harefield, I found my tacro levels (immuneo suppressants) were also low, so they wanted me to repeat blood tests & let them know the following day my lung function result. I was desperate for it to come back up so as soon as I got back from Exeter I went on a brisk walk / jog around my block before dinner to see if it would make a difference... The following day my lung function had improved, not vastly but enough for them to be satisfied. My tacro levels were also back up to what they should be so I said I'd keep a close eye, continue with the exercise & then packed for our weekend!!!

Deerpark was amazing, we arrived about 3pm on the Friday afternoon & waited in the Forest Retreat with a beverage for our log cabin to be ready.... There was absolutley no phone signal at all & only WiFi in the retreat so it really was going to be a peaceful weekend!

 Deerpark Cabins, Cornwall

Soon as we got the key, I was like a little kid running into every room, opening all the doors, jumping on the beds.... It was stunning. We had a Silver Birch cabin, number 5 (which proved to be lucky!) Downstairs was your living area / kitchen & diner, a bedroom with 2 single beds & seperate shower room & toilet. Along with your balcony / decking & bubbley hot tub ready whenever you wanted to jump right in!!

 My Amazing Husband, Soul Mate & Best Friend

Up the stairs was a double room with unsuite bathroom. The views were amazing & we were chuffed to bits with our choice.

We had been 'treat shopping' brought some drink from home & had breakfast & dinner stuff in the fridge for the following two days. We spent our evening having a lovely meal, snuggling up with a drink or two & about 9.30ish having a quick dip in the Hot Tub.

I was very careful over the weekend with the tub as after transplant the rules state you shouldn't really use them as they are a high risk of infection. I understand of course jacuzzi's / saunas in public swimming places are likely to be far more risky, but the staff at Deerpark came in everyday to service & treat the tubs so I wasn't too worried, I went in it about twice for 20 minutes or so the whole weekend, just so I didn't put myself at too much risk.

 

In The Hot Tub!

 

Ready For A Dip!

On the first morning we were up quite early & the park hold a duck race & raffle at 10am. As prices were slashed for certain hire purchases & events being the time of year, Stefan said he would hire out a bike each for the day so we could ride around the woodlands (I was slightly worried!) Frank, the duty manager at the park told us to wait until after the race & raffle just in case we were lucky enough to win something... So we held off, chose our ducks & set off down the river to see if either of them came in 1st, 2nd or 3rd... They didn't !! I was abit gutted until I saw I could have won a pencil or pencil sharperner & then I wasn't partiularly bothered! LOL

Then came the raffle, which was free also, you are given a little piece of paper with a duck on it & your cabin number to enter.... The first prize a bottle of cider... Nope, not our cabin. Oh well, didn't really mind as we had a lot of drink in the cabin anyway that I was pretty sure we wouldn't drink! Second prize, an activity (ie pond dipping or night vision session) or bike hire free of charge. Now that would have been a good prize to win.... The little lad picked out the paper, shouted out the number which I didn't hear so Frank said to shout again, "Number 5" What are the bloody chances of that ?! Lucky number 5, we ended up winning bike hire for 2 for the whole mini break, let alone a day, so it worked our perfectly!

 

We Won!!

With that, we were off to get our bikes & I then suffered for the next 45 minutes, trying to drive the bloody thing. Can't remember the last time I was on a bike, anyone would have thought I was pissed at 11am in the morning, the thing had a mind of it's own.... But by the afternoon on my second go I had mastered it ;) Had a little trouble changing gears & going up hills but it did me the world of good & we had lots of giggles, mainly at my expense!

 

On Yer Bike!

In the afternoon, we drove into Liskeard, didn't think much of that! (Sorry people from Liskeard!) Stef treated me to lunch at the Italian, The Hayloft & then we drove to Looe & had a walk around the shops & to the beach. It was so lovely spending time together, & me walking around & not having him push me obviously - was a fantastic feeling, for us both!! He would tell me how proud he was of me & I felt like I wanted to burst. We returned to the cabin for another lovely meal in the evening & then relaxed.

Sunday was much the same, a fry up followed by a bike ride, (should have been the other way round as I wanted to vom soon after!) then we played abit of scrabble & took a drive to Polperro then Bodmin. By Sunday afternoon we were feeling a bit lost. We are usually so busy with our day to day life, my medical regimes & sorting out all our snake babies having time to ourselves to do absolutely anything we wanted is very alien to us. We felt quite out of place!

 

Us At Looe Beach

 

'Blue' My Deerpark Ducky & 'Zach' The Bat,

Momentos Of Our Trip From Stef xxx

 

It was amazing to get away for the weekend just Stef & I, but we were ready to return home, we had missed our snakes very much. I know for a fact that a few days is 'just perfect' because of our commitments & the people we now have become a holiday abroad I just couldn't face. Not for a long time anyway, I used to live for going abroad, getting some sun, cocktails & lying around but transplant & my family have competely changed me, & I think most definately for the better... We even brought back all the alcohol we took minus 3 bottles of wine (we took Jack Daniels, Salior Jerry's, Vodka, lagers etc) we just weren't interested with drinking - We both talked about how we could take it or leave it, we never go out pubbing anymore anyway, I find it such a waste of money, but since transplant I've also found it really doesn't do much for me. I can't remember the last time I was tipsy let alone drunk. Another bonus in my eyes I think! We will be returning to Deerpark, in the Summer would be lovely, with the change of weather & walks in the light evenings.... I would recommend it to anyone providing you want fresh air, peace & a countryside experience!

 

Our Lucky Log Cabin, Number 5!

Now we're home & things are back to reality, I've kind of hit a bump. Over the weekend in Cornwall despite by-cycling & hot footing it everywhere, my lung function was starting to decline again... This coming Saturday is Stefan's cousin's wedding & on Tuesday of next week I have tickets to see Plan B. I have even spoken to the arena manager who has very kindly said Stef & I can wait indoors as soon as we arrive & not outside queing, (so I don't get an infection) he's also finding us seats as we had standing tickets but he's moving heaven & earth to make the evening special for us. I got the tickets before Christmas as a surprise treat for Stefan to say thank you for being my rock, I believe he went through more hell then me last year, watching his wife dying in front of him, waiting for hours to hear if my operation had been successful (as I would have been none the wiser) & if he would hear my voice again. We both love Plan B - but I wanted to do something special, & he's never been to a concert so I thought this would be brilliant. But now I feel like I'm ruining things again, my lung function is pretty pitiful & Harefield want to see me tomorrow in clinic, (Thursday) I feel fine, temps are good, not coughing etc but it's just the number's arent adding up & I am expecting to be kept in to have a bronch. If this is the case, that won't be until Friday or at the very least, next week....

It's hard to explain how I feel, I don't want anyone thinking I'm ungrateful for being here, I feel like the luckiest person alive to have had my life saved by my beautiful donor & to be experencing what others have not had the chance to. I just feel like, the month I actually had a few things planned, that's when things go wrong, & despite doing everything right, exercise, following tx rules & beyond - it just hasn't worked. I know that I can make more memories, weddings & concerts, they come & go, but I just feel sad, angry, scared.... I don't know what they'll say or do & I guess that's why I'm feeling so crushed. If it was this time next week I wound't bat an eye lid as I have nothing planned! It's just sod's law, I feel dissappointed with myself & gutted that Stef gets to miss out on good things because of me.

I will of course try to keep you posted with things as they happen. I vow to try to remain positive too, I know this is a blip, I'm sure I can come out of it again. I would just like Thursday afternoon to hurry up & get here, see what the team has to say, at the time when you have nothing else to think of it starts to drive you insane....

 

Stef & I xxx

Thank you as always for taking the time to read xxx