IV Change & Something To Look Forward To…

The last week seems to have flown by after my day of great news. Stefan worked his last night shift at Morrison’s on Monday, and it’s been so nice having him home with me in the evenings. He is absolutely buzzing about starting his new job next week and I already think it will benefit us greatly.

I changed my iv’s to Mereopenom yesterday, a day later then intended due to a mix up but they have really hit me hard again. Although I think this is the iv that helps my chest the most, it really knocks me for six with all the sickness and tiredness. As soon as I got home after hospital yesterday I just passed out on the sofa, I feel like a zombie. Really hoping after a few days it’ll pass and I’ll start feeling the benefits. I have arranged with my cf nurse hospital transport for my future appointments now Stefan is going back onto working in the days. Although I have my driving license and love to drive, I have worked out that I haven’t driven in about four months due to how poorly I am. Also lugging my portable oxygen about, driving and getting into the hospital on my own would be such a problem this should help things all round.

I have also had an appointment come through for a hysteroscopy in about a fortnights time. As mentioned in a previous blog when I had an ultrasound a while back, the radiologists found something unusual, basically, the lining of my womb is very abnormal, and I get tremendous pain and problems from it. This local anaesthetic surgery should tell us what the problem is and how it can be resolved. I am extremely worried about it I must say, not about the results but the actual procedure as the pain I endure is just indescribable and I will be awake during the process. My CF nurse said she would come in with me (Stefan will be with me too but not sure if he can come into the room) and she said it might be best if I have some entinox as well as the local so I feel a bit more relaxed. I always have to have entinox for my mickey change as it so painful because my stomach muscles are so tight and although you are still aware of what’s going on, I’m hoping I won’t be focusing on what they are doing…

Just before I tell you about my amazing trip next weekend I have a little favour to ask you all… In the last blog I mentioned that my sister was doing a skydive in aid of CF, well now her date has been set and she is jumping from 15,000 ft out of a plane on June 15^th!!!
Instead of putting the link on here again for her Just Giving page, I wanted to ask if you all could text the code CFKK73 and the donation you would like to make to 70070. (For eg. CFKK73 £1) If I can get all my wonderful blog readers to donate 50p to a £1 each we could raise £200 in just minutes!!! You should get a confirmation text saying thank you! Please no matter how small the donation is, it will really make a difference!!

Now, Stefan and I literally have a week to go before we have our wonderful treat from The Willow Foundation.
I had all my paperwork through in the post yesterday confirming our itinerary and I am soooo excited, even though Mereopenom is making me feel rough as a badgers ass I still feel like I am about to explode with pure happiness!!!
Stefan and I will be leaving Totnes on the train in the first class section on Saturday morning, we have a car picking us up from the station and taking us to our hotel, The Park Plaza at Westminster Bridge, right by the river & Big Ben!! We have the afternoon to do as we please, and £100 to spend on our evening meal and drinks… We are then being collected by car again just after 6 to be driven to the O2 Academy to see our idol Professor Green in concert!!
Car back again, lovely relaxing night in a beautiful hotel room and breakfast in the morning before our return train journey home.

Stefan and I never get to do things like this, and if you google the hotel you will see that it is absolutely stunning! To have a meal provided for us and then to get to see one of our favourite music artists is just the icing on the cake. I really didn’t expect to have such a treat and am so so grateful. Now I have my oxygen in place, (my oxygen company are delivering on the Friday so it is all there in plenty of time before our arrival) it feels all the more real. I will obviously be on iv’s, in my wheelchair and my O2 constantly but nothing is going to stop me from enjoying the trip. I will be sure to take plenty of pictures and give you a full write up when we are back!!!
I want to thank my cf nurse for putting me forward for this amazing treat and the staff at the Willow Foundation for bending over backwards to make it become a reality….
　
Thank you for reading… xxx