I can’t believe I week has gone by since my last blog. It is all a blur but I have finally plucked up the courage to write this.
Thursday was pretty good when a Healthcare Assistant came over with homemade cake and posh ice cream that is donated to the ward every Thursday from a local supermarket! Unfortunately the cake wasn’t gluten free and the ice cream was too cold for me (who would have thought it…….cold ice cream!) but Mumma L and Chris were more than happy to clear the lot. They do say one man’s rubbish is another man’s treasure! But what a wonderful surprise and it certainly lifted my spirits!
Friday is where things started to go a little wobbly. Whilst I was getting used to the seemingly endless poking and prodding and my oh so faithful veins giving up at every opportunity, I was feeling excited to receive my iron infusion! Turns out that I have not been absorbing some of my medication so the only option was straight into the vein! So my juicy iron was hooked up and the infusion cautiously begun. I had no idea that it can be so dangerous as it causes anaphylaxis in some people!!! So after the infusion had tediously dripped for 15 minutes my observations were taken again and I felt great so the doctors gave the green light to send the rest through over the next couple of hours. They watched me closely and everything was great. Grace thought it was magic orange juice!
As it was Friday evening Mumma L needed to get home having stayed in the hospital accommodation all week she needed clean clothes and a break! Mumma L leaving sparked a flow of emotion. All of a sudden I felt so alone and so far away from everyone. I couldn’t tell whether my heart felt fit to burst out of my chest at 100mph due to being blessed with Agro Anxiety’s presence or the fact the doctors were trialling me off of my beta blockers! I cried and cried and shook with fear. Why? I was in the safest hands. The staff were like angels from heaven. They weren’t planning anything other than blood tests over the weekend! As I held onto Grace she reminded me of oranges. With oranges in my mind I decided to occupy my mind . . . . . what else could be more appropriate to make me look forward to than writing my Christmas cards! So that’s what me and Grace did! As we did this, I began to feel an itch……. of course!!! I was having a reaction to the iron. All be it nothing life threatening it meant I would itch for the next 5 days and it would jeopardise me having the regular infusions I will need! Thankfully the doctors agreed I could continue to have it as it didn’t effect my breathing.
Saturday bought much excitement as Ash and my friend Katy came to visit!!!! We had a great time chatting and giggling and I felt great listening to their stories of how these 2 country people had a great adventure travelling on the train and trying to navigate their way to me through the giant maze called London. Me and Grace showed them round the ward and to the day room where relatives were free to make hot drinks and munch on biscuits!
When Katy had to leave later in the afternoon Ash took me out for a little fresh air…… the first time going outside since Monday. I say fresh air but I really mean different air as the busy congested streets of London are worlds away from the quiet green fields I call home. Nevertheless it was good to get out and show Grace what the capital was like! After crossing 2 roads and travelling a total distance of less than 0.2miles to a local coffee shop, only 2 country bumpkins, a unicorn and a wheelchair could get lost finding their way back. It was great fun!
Sunday came and I was excited to see Ash again. However whilst I was patiently waiting I felt very hot. I went to look for something next to my bed and it all went black…..
Next thing I know I’m on the floor with multiple doctors surrounding me. To add to the humiliation they had to lift me back into bed using a full body hoist due to me feeling the full force of Parasitic Pain! My blood pressure was very low despite having eaten and drunk that morning. Ash came and his big smile quickly turned to a frown as he was informed of the recent events. Parasitic Pain was in my head….. literally! Even morphine couldn’t get rid of him and the lights only came him more power. After 3 litres of Hartman’s solution (a drip containing sugars and electrolytes) my blood pressure didn’t stabilise. So the decision was made to call the resuscitation team and to take me for a CT scan. We were down the lift, in and out the scanner and back on the ward in 20 minutes! The doctor even pushed the bed! (The staff here really were amazing!) Thankfully the CT scan didn’t show up anything other than my perfectly normal brain (yep I have pictures as proof!) so all the lights were turned off and I was topped up with more pain relief and fluids. I dozed off and when I woke I was upset to find poor Ash had spent the whole afternoon and evening watching me sleep……. apparently Grace wasn’t too chatty either!
He left me to get a good nights sleep. Well……… after 6 litres of fluid in 18 hours my kidneys were working overtime! Under doctor’s strict orders to the nurses I was not allowed out of bed which meant one thing . . . . . . the bed pan! The poor nurses were in and out all night. Now, if any of you have ever had the pleasure of trying to balance yourself precariously on a bed pan you will understand it is not the easiest of tasks. Couple this with my morphine induced mind resembling a tipsy teenager on a Saturday night and this could only mean one thing. A change of bedsheets and clothes. Again and again! In the end the poor nurses just dressed me in a practical hospital gown….. Grace found this highly amusing! Thankfully when Monday morning arrived the doctors allowed me to get out of bed and my angelic healthcare assistant washed my hair, helped me shower and cream to make me feel more human again!
As my observations had improved and I was due a review with a team of people including the stomach surgeon the following day, it was all hands on deck to get me home. They did a fantastic job and gave me everything I needed, including a lovely injection! It was very painful and although me and Grace thought of oranges, I needed to lay down after When I felt I was back in the room I felt for my nurse as she told me that she knew it was going to be nasty when drawing it up was like syrup!
This feels like a natural place to finish this blog. I cannot fault the world class care I received at Bart’s and we are one step closer to hopefully having better control over PAS. The staff were amazing and amongst the tears there were giggles and I know if anyone can help us battle PAS it’s them!