6 Months List-versary

Yesterday (September 24th) marked the 6 month point for me being on the Liver Transplant list.

Those 6 months have been fraught with emotion and I think the only way I have managed to keep myself positive is through the support I have received from not only my family and friends, but also from the support group networks that I am a part of. These are primarily online but I have recently been trying to re-kindle a local support group that I set up with the help of the British Liver Trust and the specialist nurses at the BRI. I would love for this support group to take off a bit more as face to face support can be so beneficial to all who attend. It is not just about receiving support, but also about giving support and encouragement to others and sharing information that can help improve care. The presence of the specialist nurses benefits both parties also. The nurses learn more about the frustrations that patients face and are able to take these concerns and find possible ways to improve how patients are treated whilst patients are able to talk to the nurses on a more level field and can express their concerns more openly than in an appointment.

I have also managed to keep myself occupied and entertained during these 6 months. Shortly after I was listed, I downloaded an app to my phone called 'Countdown'. Each time I have a social event or something exciting to look forward to, I put it into countdown with a picture and when I open the app, it shows me how long until each of the events. This reminds me that there is always something to look forward to and stops me sitting around waiting for the phone to ring.

Since being on the list, I have done so much -possibly more than I have done prior to listing and almost certainly more that I should be doing...

I was listed in March. In April, may amazing other half whisked me away for a gorgeous holiday in Sherwood Forest. We stayed in a cabin in the woods and enjoyed a whole host of activities.

Snuggles with a Tawny Owl

The Incredible Golden Eagle

So regal looking!

Friendly Squirrels at Clumber Park

Wollaton Hall - AKA the house in Batman

Selfie in front of Major Oak :)

Segue Experience

Followed by Go Ape!

Our trip up north was finished off with a visit to York to check that my awesome friend Abi had settled into life as a student midwife... including a trip to Melton's for dinner - AMAZING food so if you're ever in the area, I suggest you check it out!

During May, we had a go at swing dancing with a block of swing dance classes for 6 weeks. It was great fun and we had hoped to continue but life and things do get in the way and haven't managed to make it to another lesson since the beginners classes ended. Fingers crossed, we will take it up again one day! 

We also went on a group trip to Snowdonia and Caius and I tackled Snowdon! I made it to the top in 3 hours which I was so proud of...

A bit sweaty and teary but I made it! Just had to get back down again!

Post walking drinks :)

In June, I enjoyed a bit of sailing by heading back to my parents in Devon and taking part in the Eddystone Pursuit race, an annual race for charity where the more you raise, the higher up the leader board you can climb!

I also fulfilled a dream of mine... to go to Glastonbury!! This was an incredible experience and I absolutely loved it. I didn't really see shed loads of bands or visit all the different fields and areas but enjoyed taking in the atmosphere and not having to worry about much. I can't talk about Glastonbury without a nod to the weather which was relatively kind this year. There was a day that was fairly wet and rainy during which I learned that my pac-a-mac from a well known, low cost retailer was not in the slightest bit waterproof! Luckily I managed to dry out and after the rain subsided in the early evening and it held off long enough for me to get back to the tent and into bed. My one disappointment was my tent... I  went with the option that was available - a genuinely vintage tent used by my family when I was young. Putting up the tent was quite straightforward but once it was up, it was evident that me, my inflatable mattress and my bag were not all going to fit! In fact, the inflatable mattress only just fit in there on it's own. I will definitely be looking to do Glastonbury again post transplant and hope that I will be able to make a bit more of it, stay up later and really look at what the festival has to offer.

July saw the celebration of my birthday! This year, I went back to Devon as Caius was in Spain being chased through the street by bulls. Mum had organised a Mad Hatters Tea Party themed open garden event to raise money for the local hospice charity - St. Luke's Hospice. It was a fabulous event despite the weather and I was guest of honour - Alice in Wonderland. I spent months sewing myself the perfect Alice dress inspired by the Tim Burton film version of Alice in Wonderland!

The team showcasing the amazing cakes!

As a keen baker, I thoroughly enjoyed spending the entire day before the event knocking up a selection of sweet treats including fondant fancies, meringue mushrooms, and tea-cup cupcakes. And of course, a giant cupcake with mango and mascarpone filling and topping with crushed meringue... mmmmm mouthwateringly yummy! I was worried there wouldn't be enough insulin in the world to get me through the day!

August was filled with busy sociable weekends including the Bristol Balloon fiesta - one of my favourite weekends in Bristol- I just love hot air balloons. They look so peaceful suspended in the sky and seeing them almost in the garden and surrounding the house with the sunrise as a backdrop is simply stunning.

I also enjoyed a weekend in Dorset with Mum and good friend Susie. We relaxed, ate, and visited the lovely coastline of Dorset.

Date nights with the man included a night at the Hippodrome to watch 'An Evening of Burlesque'. We both thoroughly enjoyed the show and meeting a few of the Artistes afterwards, especially those who complimented my dress and asked if the two of us had recently married as we looked so happy and dapper!

This was followed by an outdoor showing of The Princess Bride at Blaise Castle. Picnic hamper and numerous blankets at the ready we had a fab evening watching the sunset and then a classic favourite. 

There were a few bittersweet events with two leaving parties held on consecutive weekends to say goodbye to two friends who have decided to take some time out to travel to Australia for a year. Laura and Nikki will both be missed but I hope they have an incredible time on their travels.

That brings us to September and possibly one of the biggest challenges for me to face... Taking on a masters in Public Health (as well as working part time and rehearsing for a musical that I'm in in October!)

I still have so much to look forward to and as a lover of the festive season, things are looking good for being kept busy!

One thing that I have been very aware of during the last 6 months is my lack of hospital visits for gall-bladder problems. Whilst this should be something that I am celebrating, it also leaves me feeling anxious. My initial listing was triggered by the repeated admissions I had last year. Each time I was admitted, my blood results flared up massively and whilst they always came down, they never came back down to the level they had been prior to the admission. Although I have been reassured on many occasions that my blood results and various scans indicate that I should be on the list, the lack of admissions still worries me. I have been waiting for so long to be put on the list, always knowing that it was likely to happen, that the possibility of being removed is terrifying. It is evident that my condition is highly unlikely to improve and transplant is inevitable but what if they decide it's not an immediate priority for my health? I was slightly reassured by the recent false alarm call as that does indicate that I am being thought about and am on the minds of the transplant team so will just have to keep that as a positive! 

In the meantime, I will continue to look forward to exciting events to keep myself from focussing on my phone. 

And of course, as always I will Keep Smiling:)

P.s - as I was writing this, I experienced a nice little reminder from my right hand side abdomen that it's not too happy with a stabbing side pain that thankfully subsided quickly!