Monday, 27 June 2016



Tomorrow, after 6 and a half weeks I will be HOME! I'm ecstatic :D 

Let me backtrack slightly though...

I made it back down to the CF Unit last Tuesday; it was so nice to be back, in a different room this time, with my usual nurses, care assistants and cleaners. The windows here are a lot bigger so you get more natural light, which I find always improves your mood and the beds are much more comfy. I unpacked, had a much needed bath and felt settled. I made a conscious effort to unpack extra well- as it's usually sod's law that as soon you have fully unpacked and settled you have to pack again.... haha hoping to go home! 

Me leaving MADU for the CF Unit 

I also had phone signal again back on the CF Unit. It was actually pretty nice to be phoneless for almost 2 weeks. When I got back to the unit I had so many messages and voicemails to catch up on; definitely kept me busy for the evening. 

The rest of the week went smoothly and routinely: nebs, physio, meds, eating, baths, sleep, chats with nurses, care assistants and cleaners, bloods, lung functions, catching up on TV etc etc. I saw Chris on the Friday and asked if I could escape for a few hours on the weekend, which he said I could. Then he also said that he was thinking of letting me come home for a "holiday from the hospital". He explained that seeing as things are still quite static, I am probably only going to start declining as I sit here in bed for longer and longer, my muscles getting weaker and weaker from lack of exercise and not to mention the boredom starting to set in after all this time. He said he would think about it over the weekend and see what my blood results and lung function were like when he returned on Monday to make a final decision; but possibly come home on the Tuesday for a week or 2 to give me and my body a break from the constant IVs and sitting around and get back to some sort of normality. Then, come to a clinic appointment and we can reassess the situation and see whether I need to come back in to stay or start home IVs or maybe, just maybe, I might improve at home. After all, medicine isn't the be all and end all for getting the body better. 

That, along with being able to come home for a few hours on the Saturday and Sunday set me up on such a high. I was so happy and excited and felt so alive! Alex's mama ever so kindly picked me up on the Saturday with Al and my baby bear who was super cute and cuddly, which was lovely. 

We went back to hers and I got to see my in-laws. Al's little brother was so sweet, as he always is! I asked him if I looked any different (fatter due to the steroids), and he was trying to say "yes" but in a nice way haha bless him, he knows women well already! :P Then Alex's grandad Reg came over. Al and I usually see Reggie at least once a week and it's been over 6 weeks since we last saw him, obviously with me being in hosp but Alex also hasn't seen him in ages as he is still waiting for his licence back from he DVLA now that he is a year seizure free, so it was just so lovely to see him. We had a long old hug and I couldn't believe the length of his newly grown beard- always the height of fashion is old Reg ;) I think it meant a lot for him to see us again, and me and Al felt exactly the same. Bless his little heart, since Al's nan died he must feel lonely at times, so I'm glad when we can put a smile on his face. 

After that, me and Al went home for a bit to see the cats and then headed to my parent's for a delicious roast with my family. As always, many laughs and funny convos were had and I felt so happy to be back in my little bubble of my idea of "perfection". Thank you to all my family, which always includes Alex's family, for such a wonderful Saturday, I'll never forget it! 

On Sunday I came out again, for a more relaxed day where me and Al just stayed in and I did a face pack, had a bath, watched Orange Is The New Black and Ali made me the best bacon sarnie ever. It's the simple things in life haha. 

Oh, but how could I forget... in the morning of the Sunday, I did my lung function and it had actually gone up! Corr, can't believe that nearly slipped my mind haha. So the FEV1 had gone from 36% to 39%- that's nearly 40! And the FVC (which is the less important number, but a number all the same) had gone from 60% to.... wait for it..... 82%!!! That's a 20% increase :D 

So Monday- today. I have been super excited to see Chris, waiting to hear his verdict, trying not to put all my hopes on coming home tomorrow but failing miserably and practically packed before he even came around haha. He came in and said I could go home! I did try and push for coming home this evening sneakily, but he said he'd rather finish the course of the anti-fungal IV, which ends tomorrow and then I can leave. Fair enough. One more sleep. One more sleep. One more sleep. I can manage that. "The Plan", as there always is one, is to go home on some oral anti-fungal meds, continue with the steroids- goodbye summer bod- and come back in 2 and a half weeks to see how I'm getting on. YAY! The best part will be that I will be out for my wonderful husband's birthday, I couldn't let him wake up alone on his birthday after everything that man does for me. I have also completed my walking test and don't need to take oxygen around when I am walking. I am doing a sleeping oxygen test tonight to check to see if I need any at home for sleeping and then I'm all tested out. Woooooooooop :D Andddd I managed to conquer my fear of finger pricking today; probably seems like nothing to some people, but for me it is the icing on the cake for great news and I'm so glad I managed it before I leave. Ahhhh smiles all round today :D 

Thank you to all my family and friends, no matter how close we are, for your continued love, prayers, support and encouragement through this difficult time for me. It really has meant the absolute world and I couldn't have stayed half as cheerful without you all. You guys are all wonderful and I am so lucky to have you in my life. Until next time xo

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