The Things That Make Me Different Are The Things That Make Me.

Firstly, I apologise for the long stretch of silence that has occurred since the end of January. I'll be honest and say that quite frankly I've been rather busy with hospital appointments, seeing friends and relatives, and enjoying the time I have available to me to organise events and busy myself with my business course. I also feel like I have spent much of my time since then plastering myself in moisturiser in an attempt to combat the never-ending skin GVHD. More on all that later, however.

I would try and organise this blog into chronological order but since so much has gone on I'll just discuss it as I remember it. Back in February I had some lovely catch ups with Ellie, Sophie and Lucy, with dinner at the Horseshoes pub, where Lucy fell into a brownie food-coma! Alice also arrived home, engaged! So we had a lovely get together at Ellie's with lots of yummy old school party food and pizza. I also got to see Maddie and have a great lunch at the local cafe - very good victoria sponge!

Pancakes!

It was also pancake day, when naturally, we consumed far too many pancakes with strawberries and nutella and whipped cream. Lottie and I also had a great time at the Cirque de Soleil, with a trip to Harrods beforehand and a cup of tea in their tea room, and an awesome Italian meal at the restaurant in the Royal Albert Hall. The show itself was amazing - a great watch, would highly recommend it for a night out with a bit of a difference! Lottie and I also had a lovely day at a Virgin Spa near us, which she had been kindly given as a birthday present. We had lunch at the cafe and then I had a manicure (first ever!). And Lottie had a relaxing massage.

Posh Harrod's Tea

Cirque de Soleil

I also had a lovely trip to Auntie Boo's for the weekend, unfortunately I had just had another bone marrow aspirate so was a bit sore, and even more unfortunately spiked a temperature and ended up in Stoke Mandeville A&E as I was possibly neutropenic. Fortunately I had some IV antibiotics and they let me out the same day as I wasn't neutropenic in the end and could just have oral antibiotics. However, I ended up in Maidstone A&E later that week with another spiked temperature and infection. That didn't stop me & Boo from having a lovely Indian takeaway though, and a yummy Chinese with my grandparents!

Green Juice!

At The Pepperbox

I realise that this blog is turning into a foodie fest and do apologise but that appears to be my main focus at the moment! What with Jamie Oliver, Delicious and Good Food magazines strune about the house, I'm not surprised I don't spend more on food. I'm also Nutribullet-ing lots of green juice as well at the moment in an attempt to improve my neuropathy (according to Dad's research). Mother's Day was lovely, spent at the Pepperbox Inn for Sunday lunch - was fantastic as always!

Dad at the finish

Mum at the finish

So, I think that brings me round to March and the Marsden March! Mum and Dad successfully completed it and have raised an astonishing ~£850. This month I also caught up with Ellie, Lucy, Sophie and Alice for The Lion King musical and an afternoon tea! The afternoon tea was lovely, and the musical was fantastic as always! We were in the stalls so had all the cast coming down the aisles onto the stage. The circle of life was as incredible as I remembered. I also managed to finally catch up with Kate, Hannah and Lauren and little Oscar at the Bakehouse for some brunch! It was yummy as ever and much needed by everyone else who had been on a lovely dog walk beforehand! It was so good to catch up! 

Proper Afternoon Tea

The Lion King

I did promise an update on my treatment though, and I'm sure you don't want boring with my social life news! I'm having to have intrathecal chemotherapy every 3 months for 2 years now, as part of my protocol for treating the leukaemia as stem cell transplants don't affect the CSF (fluid around the brain and spinal cord) so this still has to be treated, as leukaemia cells can harbour there and cause relapse. And we don't want any of that thank you very much! The bone marrow aspirate I had was for the MRD test (specific test result for tiny amounts of leukaemiacells cells) due to it not being done with my last bone marrow before Christmas. The result of this one though also went missing, much to my, my family's and the doctor's severe anoyance. Don't worry - an incident report is being submitted and a stern letter of complaint will be sent. I have, therefore, opted to have another one (they are under sedation I suppose) for the result, as it will put my mind at ease at least. 

With regards to the skin GVHD that I have been suffering from, I have been referred to Guy's Hospital for treatment called ECP. It involves my blood being taken out from me, passed through a machine that separates the white and red blood cells. The white blood cells are treated with a drug that attaches to some of them, they are then passed through UV which destroys the cells with the drug attached so cytokines are released that somehow (no one knows, tiddly pom) then stops the graft from attacking my body. Not all patients benefit but a high percentage do. 

My eyes have also been causing problems (hence the delay in blogging). Because my skin is bad, it affects the ducts and blocks them around my eyelids. This has resulted in really dry and painful eyes, and a lump under my right eyelid. I have had blurry vision and swollen eyelids as a result. An array of drops including, Chloramphenical, steroid and viscous tear drops were prescribed but didn't help, so this resulted in a referral to St Helier's Eye Clinic. Unfortunately, they could only fit me in on 6th April, so I went yesterday anyway as an emergency as I couldn't see properly. I now have better eye drops (steroid and lubricants but preservative-free this time)! These seem to be working much better already but they still want to check up on me next week. The only benefit from having all these hospital appointments is that sometimes Dad and I get stuck with the cross-country route home, which often results in having to stop for dinner - this part isn't so bad as you can see from the pictures below!

Lovely Italian Dinner

Steak Dinner

At St Helier's

The neuropathy is still not great - pain and cramps and tingling are constant.  However, there has been some improvement since my last blog with me off one of my pain killers and being able to start reducing my opioid based pain killers. I haven't reduced my pregabalin yet though. Some days are better than others but I have generally been able to do more recently.

This week I have spent a lovely weekend at the grandparents with Boo, my Auntie Sara, Uncle Will and my brilliant cousins as well. And have a catch up with Katie and Celina (two lovely girls I met in the TCT when I was first diagnosed) to look forward to! :) I also have BSAVA Congress the following weekend - very exciting!!

Thank you all for reading this essay and following my blog! I hope it may help the odd person out there to understand they're not going through post-stem cell drama alone, as well as all those lovely people who just like to keep up with my story.

Much love to you all xxx