It Is More Fun To Talk With Someone Who Doesn't Use Long, Difficult Words But Rather Short, Easy Words Like "What About Lunch?"

Good evening all you lovely people. Firstly, I wanted to thank you all for sticking with my blog and keeping up with my story. A lot appears to have happened over the last couple of months, and I would have written this before but things just seemed to keep coming up, as you will see.

At the beginning of April, Lot, Mum and I had a lovely visit to my Grandparents. Dad was feeling unwell so he had a well-deserved, quiet weekend at home with his new project - a homemade, pretty awesome, record player. We had a lovely weekend with my Grandparents, Boo, and Sara, Will and my cousins, Chad, Thea and Etta. I also went for a brilliant lunch in London with Katie and Celina, two amazing girls who I met during the first week that I was diagnosed. We had a massive Nandos, which we had been talking about having since last year, and a great catch up! It was so good to hear what they had been up to and the amazing wishes they have had! Katie managed to get to be an extra on the new Bridget Jones movie, for example!

BSAVA Congress was my next challenge to face. Lauren, my fantastic vet friend, who I used to work at the kennels with years ago, was also going and very kindly drove me up to Birmingham, and essentially looked out for me during the Congress. (Thank you so much again!). BSAVA Congress is a four-day event with loads of vet small animal lectures, and because I was lucky enough to get a bursary to go, I was invited to a delicious three-course dinner on the first evening. The Friday was filled with the 'Student Stream', which was lots of lectures aimed at vet students with themes including: career advice, how to deal with emergency cases and CPR. The Saturday and Sunday I got to go to whichever lectures took my fancy and there was an event called 'Vet Fest' on the Saturday evening, which was great. There was live music, various entertainment acts and a silent disco, as well as, plenty of food and drinks! I also got to catch up with a lot of people in my year from uni, which was fantastic. I managed to make it to midnight and shared a pizza with Amy and Meagan (two lovely girls from my year at uni) at the hotel as we naturally had the munchies by then, and fortunately the hotel offered a 24hr pizza service! By Sunday though I was exhausted and was very glad to head home to rest up. It was an absolutely brilliant weekend though and I would highly recommend it. I've also been keeping up with my vet stuff by doing webinars and my research project, which I now am aiming to do in the next couple of months. I've also passed the first module of my business course - just three more to go!

Me hooked up for ECP

I've still been struggling with various GVHD problems though. I was referred to St Helier's Hospital for assessment of my eyes. It turns out I have GVHD of my eyes, which is mainly due to my skin GVHD as it causes scarring of the lacrimal ducts (that produce tears) and as a result I have severely dry eyes, which then affects my cornea and vision. To help I've had silicon plugs put in my tear ducts to prevent the tears I do manage to produce from draining away. So far, this has helped immensely! It's a completely painless procedure that took all of 10 minutes! I may have to have them redone though as they can dissolve or fall out. I have also started my ECP, which I explained in my last blog. This is going really well as well! My skin has improved greatly since I started it so fingers crossed for the next few months! I have to have it every two weeks for six months and then I'll get reassessed to see if I need another six months or not.
 

William Widgery's Grave

Dad and I had a great day visit to France back in April too. It was 100 years since the death of one of our relatives in the First World War, so we took a wreath to place on his grave. We also visited St Omer on the way to stop for lunch! I also had a brilliant day in London with Grace and Alex. We went to the London Dungeons, which was very fun, and had a yummy lunch at Wagamamas.

Unfortunately, due to lab problems at the Royal Marsden, as I explained in my last blog, I had to have yet another bone marrow to test for the MRD. Fortunately though this result came back and it was negative! Which means I am in remission! :) Unfortunately, though not long after receiving this brilliant news I ended up in St Thomas' Hospital being treated by their neurology department. I couldn't walk properly (I was on crutches) as I had numbness from my feet to half way up my chest and weakness as a result. I'd also had a couple of falls. An MRI showed an area of inflammation around my spinal cord at T4 (my fourth rib). After many tests, and numerous neurological exams, the doctors decided the inflammation could be due to either chronic GVHD of the spinal cord or drug-related toxicity. Basically they don't know why this happened but put me on high dose steroids to reduce the inflammation. This, fortunately, started to work straight away but I am still on steroids to help this improve, which it still is slowly. It was a pretty horrible weeklong experience in St Thomas', which wasn't helped by the fact I managed to miss Lottie's 22nd birthday.
 

A few pictures from Port Lympne

Once I was out of St Thomas', I was able to meet up with the lovely Invicta girls for a yummy pub lunch. Lottie and I also were able to go for an amazing weekend at Port Lympne in one of their Treelodge Apartments, courtesy of the Willow Foundation. We got there on the Saturday after a scrummy pub lunch on the way and checked in around 3pm. We had a welcome glass of bubbly and marshmallows to toast on an open fire in their clubhouse. We were then shown how to use the personal golf buggy that we had access to until 11am the next day. We went to the apartment to unpack first and then went on a buggy tour with the other people staying for the weekend. Lottie and I then had a dinner reservation at the restaurant, which was absolutely amazing! We then drove our buggy back to the apartment to watch a bit of Eurovision, but I fell asleep on the sofa and Lot sent me to bed. The following day we had an equally delicious breakfast in the restaurant and headed out early to see the animals before the public were allowed in. It was so quiet we got to see so many animals out and about. After we checked out at 11am and returned our golf buggy, we went on the safari bus tour to see the African animals in a separate part of the park. Once suitably exhausted, we drove home to collapse in a heap. It was a really perfect weekend - a massive thank you to the Willow Foundation for such a brilliant time.

Amy was kind enough to also drive down and visit me for lunch at the Pepperbox Inn, a visit to the Emporium and coffee in Headcorn's tearooms. Thank you again for driving all that way again my dear! It's so good to catch up and hear about vet stuff again, and how well her menagerie of animals is doing in her new house!

Lottie has now moved out to a house in Ashford, with Flo. The house is lovely and cosy and she even took me sofa shopping! I may have not helped with how much she ended up spending but the sofa (sofa bed so I can stay ;) ), chair and footstall are really lovely and very comfortable. Flo approves at least! And the anti-stain treatment I convinced her to pay for has already proved useful!! I don't think she'll be drinking hot chocolate ever again.... :P

Everything was going so well lately too, until last week when I spiked a temperature and ended up in Maidstone A&E with an infected Hickman line (which had decided to helpfully block two weeks previously). After IV antibiotics for a week they finally sent me home on oral antibiotics as I hadn't spiked since the first night, and my CRP (blood infection marker) was going down nicely. There was a point where they thought I had MRSA :| but luckily it turned out I didn't. I just had a very high amount of Staphylococcus aureus in my blood, which the microbiologist wanted me to have two weeks worth of IV antibiotics for. But fortunately I had a very sensible registrar, who realised my veins couldn't take it. After many cannulas and blood tests it now looks like I've been beaten up! Guy's though are going to put in a new Hickman before my next lot of ECP (as I need it for the treatment) on the 9th June. It's quite nice to not have a central line in though for a couple of weeks - freeeedom!

I have lots of plans for the next couple of months but I will bore you all with those in the next blog! Thank you to those dedicated people who got to the end of this epic blog, and I do hope it wasn't too tedious. A lot has happened in the last couple of months and I really don't know where the time has gone! It's been crazy.

I just want to finish on what I feel is the most exciting news though. I have been given a provisional timetable for my return to uni in January. I have started organising my EMS (work experience in vet practices) and got my teeth back into my research project. I can't explain how truly excited and determined I am to get back to uni in January. So, I'm keeping everything crossed that everything continues to go in the right direction! I just want to say a massive thank you to everyone at uni and all my friends and family for all their continued support through this difficult time. I really can't show my appreciation enough.

Much love to you all xxx