It's started the knotted stomach, the painful cramps, the insomnia, the need to be alone and the deep breathing. The countdown anxiety started on Saturday evening, completely out of the blue as I'd just had a wonderful night away watching a very sparkly Strictly Come Dancing Tour . Then bang the worries arrived. Sunday was pretty busy so not too much time for me to dwell or overthink. I tried to fill the evening too with a leisurely bath. Water always soothes me, bubbles, scented candles and music. It's a go to when I'm feeling unsettled, I can lock everything and everybody out. BBC1 kindly started a series of my most favourite programme Call the Midwife so I lost myself in that for an hour too. It's the only programme that gets my attention 100%. I then read, I've made sure I have a few Chick Lit easy reading books loaded onto my Kindle so more escapism. My sleep is very broken, I'm waking up every hour or so but at the moment the episodes of being awake are quite short. I really hope it stays like this as being awake for hours on end allows too much overthinking to occur. It's very lonely being awake while everyone else sleeps. I've been at work today so that's pushed my anxieties slightly further back into my head. I've been busy since I returned home too until now. So I thought I'd start getting a few words down as that usually helps me too. My stomach feels sore and I'm breathing deeply but really I'm not doing too badly but I've still got time.........
Tuesday has arrived with a vengeance as my boy innocently said he wouldn't want to be Eloise while we were walking to breakfast club today. I immediately thought he'd say because she has to take pills as he'd just been given cough medicine. My second guess was the hospital tests but no I'd have coped with both of those. He wouldn't want to be Eloise as her transplant friends are dead. Bang !!!!! Obviously many of her transplanted friends are very much alive but sadly the two girls that had rejection episodes at the same time as Eloise both died. After I've dropped Henry off , I carry on into work. I'm in the street walking along blinking away tears that are forming on my eyelashes, I brush them away for once grateful that my eyes have been watering in the wind over the past couple of weeks. It's no longer an inconvenience it's now a disguise. The happy face is on. I messaged my best friend straight away and got the support and kind words I needed. I'm so lucky to have such a rock who I trust with all my thoughts and feelings. Today's self care has included a much needed trip to the gym. I lost myself in music and pushed myself as hard as I could. Physical pain is easier to cope with, a sore muscle will soon heal. Emotional pain is much harder to deal with but I try and succeed. Now a quiet evening is needed, I need to be alone as much as possible. I find I'm quite prickly when I'm tense like this and leaving me be is better all round ! I don't want to explain why I'm wound up as saying it out loud makes it real. It's strange how I can provide support for quite a few people in and out of the Transplant support group and I have many wise words to share but I prefer to be quiet. I like to deal with things mainly on my own with my safety net friend in the background so I can concentrate and not spend time updating everyone on social media.
Wednesday so much to do ready for our trip to London and my mum taking over the reins at home . Yet I chose another session at the gym, the right decision ? Very much so, I won't be going for the next couple of days so to miss another of my regular days wouldn't be a good thing mentally. Happy hormones, sweat, deep breathing, losing myself to muscular pain and being anonymous. I worked hard in my limited time and that felt good. On returning home I ran around my home cleaning and tidying. The best part, taking the blocked Dyson to bits and fixing it ! They are so great to dismantle , I think mine had eaten too many pine needles and maybe some coal. I was too busy to think and that's a great thing.
Ok so here is where I confess to why I'm feeling this way, it's time for Eloise's transplant annual review. I no longer take these appointments for granted, I can't over share on Facebook, not that it'll jinx anything. It's just so hard that Eloise needs such invasive tests to see how her heart is doing. To me she looks fantastic at the moment, she says she feels well and she's told me she's really happy. I wish that was all we needed to know but to know for sure a coronary angiogram is needed . The coronary arteries show the first sign of chronic rejection, it's like hardening of the arteries but this kind is transplant specific. It's awful relying on tests and other people to give you the reassurance that your child is ok......for now. It's never ending.
At 1 pm we are on the train to London, at 4pm we are settled into the transplant flat. The lady in the Family Services office asked if we knew where it was. 15.5 years of staying in The Italian Wing, we've stayed in every bedroom of the four flats. We are allocated flat 1, the first flat we stayed in when Eloise was transferred from the Freeman. I looked out at the view of the square, I wonder how many times I've stared at those trees? Will this be our last stay ? Thankfully the rain eased off so we walked around Leicester Square, Piccadily Circus and Covent Garden. We laughed a lot and enjoyed each other's company over dinner at TGI's. I don't spend enough quality time with Eloise, she's quite solitary and undemanding of my attention. So I'm glad I persuaded her to come out this evening.
Thursday, It's 6.40 and I'm awake, the bedroom was so hot last night so we slept with the window open. London wakes up early so it's already noisy outside. I'll always associate staying here with huge crates of bottles being recycled ! Plus the plastic on plastic bedding, plastic mattress, pillow covers and quilt. I hope this flat has a powerful shower ! The bed on wheels on laminate flooring also provides many comic Miranda like moments ! The conversations have started in my head, things I need to discuss with the transplant team. Will I even get the opportunity ? This is what frustrates me, it's so hard to get anything organised or get an answer from anyone. You get more notice about the Christmas party than a Transition Day. I know we will be hanging around Gosh all day with huge gaps of wasted time, time to fill with anxious thoughts. At least one test is scheduled for 3pm as I keep receiving texts. We have to be on Bear Ward at 10am, hence why we travelled here yesterday. Let's see how promptly we are seen. It'll be impossible to find distractions today, not many coping mechanisms can be brought into action here. I'll just have to do my best and carry on, best of British .
It was just as I thought , arrived at 10am, first seen at 10.50, then by 1pm we'd been seen by two nurses and two doctors. So a quick lunch break before going to Walrus for Eloise's tests at 2pm. These started at 2.50pm and ended at 4.30pm. I left Eloise to it and tried really hard to concentrate on my Cecelia Ahern book. My stomach was in knots as she was gone so long, I felt awful and kept looking up hoping to see her. Apparently the person who did the first echo didn't press hard enough so the images were poor. Men you are so lucky that your heart isn't covered by a boob ! So echo, ECG, exercise tolerance test all performed. Poor Eloise's knees gave out before her heart on the exercise bike. So we leave the department with Eloise's new friend the 24 hour B/P machine. Then the phone call came........Eloise's angio was cancelled. There was a failure with a vital piece of equipment in the cath lab . The engineer had tried to fix it but to no avail. Such a huge come down, a crash of emotions, just so frustrating. Poor Eloise was so prepared mentally as she was having the angio awake without any sedation if she could cope with it.
So we've had the huge build up, Eloise has had her tests but we've had no results as we never saw a transplant consultant. So we've had no reassurance, no post appointment euphoria, no relief, no huge smiles. Just nothing but the knowledge we will have to do it all over again, but when ? I was going to delete this blog post but I think it goes to show how things really are when we go to these appointments.
To my rock who taught me the importance of gym therapy .
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