Monday Night’s thoughts.
“How are you?”
Me- “ I’m fine, thank you “ said with a beaming smile.
Look closer at that smile it didn’t reach my eyes, my eyes that have felt the prickling of tears that I refused to let out. My anxiety level is pretty high at the moment. Thankfully it’s still being managed, I can hear myself doing the deep breath and sighing thing. I want to run away and escape from my fears for even the briefest of moments. I’m on high alert, I’m prepared to fight and do whatever it takes to get through these next few days. What am I running from ? Reality or just the uncertain part of my reality Eloise’s heart transplant and her over due angiogram.
Am I over reacting ? What do you think ? Should I fret before these appointments or just think “what will be, will be” I’m not stupid I do realise anxiety or no anxiety the outcome of this appointment will be the same. The results will not change and what ever happens I will deal with it. I know I will as past experience has shown me that. Past experience has also taught me to take nothing for granted ! So I’m stuck between a rock and a hard place.
So it’s 10.40, I should be asleep but I fear trying to sleep as I know I will lie there having conversations and going through possible scenarios. My panic increases, my mind goes into overdrive . Then I count how much sleep I can potentially get, then I pop to the loo, then I’m thirsty, too hot, too cold , I’m just impossibly restless right now and nighttime is one of my enemies. Im too exhausted physically and mentally to stay awake but I’m too scared to sleep. It’s lonely at night when you’re in the dark. I’m my own inbuilt enemy and I cannot escape from myself, a gagging order for my over active brain please. Perhaps I should try and sleep, tomorrow needs me......
Tuesday’s musings.
Sleep, that’s better you came back to me ! Appetite you didn’t falter so I remain fat. I need appetite suppressing anxiety really. Let me now confess to making this trip to Gosh even more stressful. We met Rebecca, Eloise’s donor’s mum for an hour. We’d been emailing and she realised she was at Gosh chairing an organ donation meeting on picu. She asked how we would feel about meeting up, I checked with Eloise and she wanted to. I feel I have to be guided by both of them, this is more about their feelings than mine. I didn’t need to have been nervous, we chatted over coffee the most natural of conversations, it just worked and flowed. I’m so proud of Eloise you know that already but she truly is amazing. We walked away from the meeting and Eloise was happy , she just said I’m connected to that lady because of her daughter’s heart. Rebecca emailed me later, she agreed with how natural it all felt, our first born daughters are both at uni, they sound similar. She then said she liked meeting Eloise, “I see what you mean about her being chilled. How lovely is she?” I’m so glad this meeting went so well.
The rest of the afternoon comprised of the usual pre Anglo activity, clerking, obs, swabs, ecg, echo......transition chat, you know the kind of thing now. Sadly, this is sarcasm the Italian Wing transplant accommodation was full so we had to stay in a hotel. Poor, poor us, a triple room, Wi-fi, TV, tea and coffee and our own bathroom, whoop, whoop. Good soundproofed windows so we didn’t hear any outside noise, win, win . Those that know the Italian wing will appreciate how wonderful it was to have a good nights sleep in a bed without a covering of plastic. Sleep that wasn’t broken by the early recycling of glass bottles. Small pleasures !
We spent a lovely evening meandering around Piccadilly, and Oxford street, the weather was kind so we took our time. I visited Cath Kidstons flagship store, it’s a beauty, so I was happy. We have two more (un)necessary mugs ! Eloise has two pairs of jeans without holes in them. The “last supper” was spent in Ed’s Diner where we ate far too much but hey we had good reason!
Wednesday arrived......
So we arrived here on Walrus ward at 7.30 knowing Eloise was the second person going to the Cath lab this morning. Poor thing had to be cannulated on the ward, three attempts, a big bruise and a tearful Eloise later they got one in. She hates cannulas and they always struggle getting one in. The pregnancy test revealed that I’m not going to be a grandma, it always makes us smile. Eloise rocked the gown and stocking look, and looked a treat in her “ f**king ballerina tights”
Eloise eventually went to theatre at 10.40 she was introduced to her nurse who’d stay up the head end ! It was strange leaving her awake to walk into theatre. I’ve felt more emotional walking away previously it was nice to see her smile and get a hug before I left her. The wait for news was agonising, you can’t concentrate and constantly clock watch. I fixated on the fact they said an hour where was she it was now an hour and 45 minutes. Then Matt came in her consultant, he was smiling, the fear rushed out of me. Her heart is pristine, better than you’d expect after nearly 16 years. Absolutely no narrowing of the arteries, no swelling. It’s all looks amazing, they had a good look round, great pressures and no sign of the old pericardial effusion today. When you are told to carry on what you are doing as it’s working and you know you’ve not really done very much at all. Maybe that’s been our winning formula, a normal life, everything in moderation.....except cake and cookies maybe !
This my friends is winning the lottery , actually it’s better as health cannot be bought. I’m so proud of Eloise, she was scared but went through with having the Angio under local. She found it painful and got quite teary but she saw it through . She’s amazing and feels so much better post procedure and no grogginess or nausea. What a complete star she is ⭐️⭐️⭐️ We couldn’t fault the care she has received this day, such lovely nurses and doctors. It’s nearing the end of an era as Eloise will soon be transferring to Papworth so it’s great to end on such a high !
