I'll start with the boring frustrating bits first! Last Monday I was up at Harefield again, I haven't got any worse (thank my lucky stars) but I am still no better. I saw the lovely Dr Carby in clinic & as I thought not too much could be said, we all know I am just waiting for the fundo op to hopefully improve things or at least keep me stablised. The high dose pred is thankfully keeping me stable at the moment, I am able to do my stairs & hardly have any productive cough so I am realy grateful for that, but the more days pass the more I feel reflux bubbling away & I know my lung function just isn't getting any better. I had another echo for my heart too which is showing one of my valve's is leaking, I am not 100% what this means or what can be done, but my dr said he would be in touch with the cardio specialist & get back to me should I require further treatment. With regards to the fundo, St Mary's had been in touch & asked me to attend an outpatients appointment on Wednesday of last week (so I had Harefield Monday, Paddington, Wednesday) I got myself all stressed out as couldn't get hospital transport for that day & I didn't want Stef to take a day off unpaid for what I thought would be a waste of time (which I was right...) After arranging to get there & back in one piece I was absolutely gutted to only be in the room for ten minutes & to be told that I would also need to come back once again for a pre op appointment before my actual operation... I don't blame the doctors at all, but I just wish that sometimes the communication would be better. I don't think they understand sometimes just how far people have to travel, the toll the long journeys take on our body & mind & the finanical implications.
Monday I was up at 3.30am & got in about 10pm, Wednesday I was up at 4.15am & finally got in at 7pm.... For a ten minute slot in the hospital. I could have cried. I am still none the wiser as to when the operation will be, I have emailed my consultant at Harefield to see if the pre op can be done else where but I have not yet heard anything back so will chase later on this week. Another trip for possibly an hours pre op quite frankly scares the crap out of me, I can't afford to keep going up & down willy nilly & the stress of the journey over all completely takes it out of you....
Other than getting vexed over hospital & medical issues I haven't been up to a great deal, simply because I feel like I am stuck in limbo & actually can't do as much as I would like.
We did however, take a very spontaneous trip to Longleat on the last bank holiday of the year with Stefan's brother, fiancee & our gorgeous nephew Jack. It really tired me out but I must say it was soooo worth it & we really need to try & do things like that more often. I was able to get in with my disabled & carers ticket which really helped with the overall cost of the day & we all had the best time. The sun was shining, the animals were out & it was nice to spend some time with family.
Lettuce Leaf Anyone?
Jack Helping Uncle Stefan
Drive Around The Safari
Jack loved the train & the water adventure park, Stef, Kelly & I enjoyed holding a spider in the petting zoo & I think Dame's favourite bit was stuffing his face with pizza at tea time ;)
Over My Fear :D
We were completely buggered by the time we left & Stef drove us home but I can honestly say it was the best day out we had had in a long time... We are trying to plan (not so far in advance as you know what sods law is like with me!) our the next trip, Chessington next year maybe around March time, with a night or 2's stay in the actual resort, so cross fingers we can make it at some point without any hitches.
Our Gorgeous Nephew Jack
The weekend just gone was really nice spending quiet, chilled out time at the house with Stef. I cooked (& ate far too much) some delicious food, sweet chilli duck legs for dinner on Saturday & a slow roast brisket of beef on the Sunday, we watched a few horror movies & had lots of time sorting out & feeding the snake babies. Very relaxed & well needed after the week we both had.
I think the whole lack of sleep business at night is where I am unable to swtich off because I am constantly thinking about what's going on, or what isn't more to the point... If you know me well enough, you know I like a plan. Hopefully, things will move forward soon, I will keep you as updated as I can. Sweetdreams for now...
Me @ Snake Rock, LongLeat
Thank you as always for taking the time to read. xxx
Smiles happiness and good thoughts going out to you both! This will sort out soon I am sure :)
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