It Isn't The Mountains Ahead To Climb That Wear You Out; It's The Pebble In Your Shoe.

I don't know if many people have noticed, but all of my blog titles mean something to me. Initially, I began using tag lines from films that I felt related to what was happening to me at the time, and now I've moved on to quotes. This one is from the great Muhammad Ali, which I feel encompasses the struggles everyone has in life, especially through the last month maybe, what with all the politics (which I am not going to mention any further). Everyone has their problems and issues that they are tackling and many are brilliant at hiding them, especially to protect loved ones, and try and keep those issues in a 'box'. But at times things just can't help but get on top of you. And you can't help but let those feelings take hold. They stick at the forefront of your mind and distract you from everything that isn't routine in your life. It's difficult. They overwhelm you and cause you to lose motivation. This is how I've felt  a lot lately. My main motivation over the last few years has disappeared and now I'm struggling to find a new one. Obviously, getting back to uni is my main motivation but a massive hole has been left in my life, and I'm still trying to adjust. I know what I need to recover physically and mentally, but emotionally I'm still a bit of a wreck. Slowly I'm piecing the bits back together but I think chemo brain is affecting my ability to do that too. As a result of all this I enjoy looking through motivational quotes and rely on social media support that suggest some brilliant bloggers, which are a fantastic read. It's reassuring to know that there are other people out there who know what you're going through, and it gives you strength. I think one of the biggest problems everyone has is finding that strength. It comes from friends and family, and sometimes strangers. And they may never realise it. But also these same people can just as easily break down the strength you have spent so much time building up. And, again, they may never realise it, or mean to. This yo-yo-ing is quite simply exhausting, but you must keep focusing on that mountain ahead.

On a different note, I simply don't know where the time is going. This month has flown by yet again in a flurry of hospital appointments and puppy-sitting. We have a new addition to the family, which many of you already know. Meet Rosie, our seriously cute Mini Schnauzer puppy.

Rosie Selfie

She's adorable and very well behaved - when she wants to be! Like any puppy! She appears to be enjoying puppy training classes and loves to play with the other dogs. Flo's getting on well with her too - thank goodness!

Unfortunately, I was in hospital again (thanks to an infected Hickman) when Rosie got picked up, but after a week of IV antibiotics I was out. In between ECP treatments at Guy's, I seemed to enjoy stints in Maidstone hospital. The following visit, I was in a few days with viral gastroenteritis, and the last time I spiked a temperature, and spent another week in a side room. They didn't find the source of the temperature spike but I am now helpfully allergic to Penicillin too. Yay - another one to add to the list. More pebbles in my shoes... I missed spending time with my Auntie Boo too, but she was lovely and came to visit me instead.

This last week I've had another intrathecal chemo injection, which so far hasn't caused any problems. (Keeping my fingers crossed!) My hair is also growing back with avengence - it can't decide if it's going to be curly, wavy or straight, so I am currently attacking it with a new hair product I have found - a souffle! The dry scalp problem has also improved since using Eucerin shampoo and scalp treatment, which I highly recommend. My nails are also driving me mad - splitting and breaking just by looking at them! I'm trying the NuNail strengthening cream, which so far appears to be helping - I'll keep you updated. 

On a much more happy note though I stayed over at Lottie's new pad and we had a lovely meal out with Kate, Hannah and Lauren at the new Italian in Ashford. It was brilliant to get out and feel the most normal I have in ages! I definitely ate far too much too... Long may it continue though, as I have a week in the Lake District with Boo to look forward to! And, the new Harry Potter play! Can't wait! Fingers crossed for no more pebbles!

In the mean time, I hope you all thoroughly enjoy the short sunny spells we appear to be having and manage to avoid the downpours. And, remember to keep your eyes on the mountain ahead.

Much love to you all xxx 

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

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 

Courage, dear heart.

So, it has been a long time since I have posted a blog, and the main reason for this is that I've been suffering from a peripheral neuropathy. This has prevented me from using my fingers, so I haven't been able to write properly or even type. My feet have also been affected but less so. The pain and constant tingling has been excruciating and I had to be tested by neurologists to confirm that it is as a result of the chemo drugs I have received. This involved electrodes and needles, which measured how well my nerves were working. The pain clinic has also been involved in my treatment, providing me with four different types of analgesia (pain relief) - duloxitine (a drug that is primarily an antidepressant but is also used for diabetic neuropathic pain); pregabalin (which is similar to gabapetin - another pain relief drug specifically for neuropathies); oxycodone (a strong opioid drug for pain relief, both long acting and short acting) and paracetamol. Luckily, I have now managed to reduce the pain relief I am receiving so I am no longer requiring paracetamol and top-ups of short acting oxycodone as often. 

I'm still also on immunosuppressants and the doctors are trying their hardest to reduce this. I'm still on prednisolone and mycophenolate mofetil, this is to continue combating the Graft vs Host Disease that transplant patients suffer from. Mine seems to be particularly affecting my skin when my prednisolone dose is reduced. We dropped it to 10mg once a day and although this is a tiny reduction in dose, the skin on my legs flared up bright red and my skin got really flakey and disgusting. It was really debilitating - I felt I couldn't see anyone and that I just looked really ugly and gross. Now, however, after A LOT of steroid creams and Epaderm cream, and bio oil, etc. etc., my skin has finally recovered! We did have to up to the prednisolone to 15mg once a day again though too. But hopefully this week we can work on reducing the dose again!

I've also been receiving some counselling as I was struggling with feeling like a burden to my family and was struggling to deal with being housebound and the constant struggle I am having with my recovery, as I thought I would be able to progress and get stronger more quickly than I am. The neuropathy also knocked me back a lot and I was struggling with feeling like it was never going to improve and it could affect my future doing surgery. The counselling has really helped anyway, and I feel that everyone who goes through a transplant or has to deal with having cancer should receive it automatically. The therapists at the Marsden are especially brilliant though because they see the effects of cancer on patients every day whereas those who you would be referred to through your GP don't. This makes the treatment a lot more relevant and they are certainly helping with methods like CBT. As a result, I'm sleeping a lot better and feeling a lot better about the future and learning how to deal with the present rather than constantly worrying.

I'm now going to the hospital less often for appointments, which is nice, but I still have to see the transplant clinic, pain clinic, neuro oncology clinic and my psych appointments.  So, it's still pretty busy! Dad's been amazing and has taken a lot of time off to take me up there, which I immensely appreciate as being in the hospital as a family member can be extremely boring! 

At the beginning of December I was very lucky to be able to go with Kate, her gorgeous little boy Oscar, Hannah and Lottie to the Harry Potter studios to see Hogwarts in the snow! It was brilliant and me and Lot got our picture in the Weasley car and I may have spent a bit too much in the shop!

 

Simon Pegg also visited the TCT, as did Jack Whitehall, before Christmas! They were both extremely friendly and great to talk to, even if Jack did come across like a bit of an embarrassed school boy. I did get to have a chat with Simon though, and discovered his dog was currently being treated at the QMH (the small animal hospital at my uni) - small world! Here are some pics!
 

The family had a great Christmas though and it was lovely to just be at home with them on the day and then see mum's side of the family on Boxing day, which was really nice! I've also been able to see Grace, which was really refreshing as I do love a good catch up about vet stuff and how she's getting on in her job in Suffolk. I'm hoping to visit my aunt very soon too for a girly weekend of probably eating too much food and watching lots of trashy tv :).

I also received some amazing news that I got the BSAVA Congress Student Bursary that means I can attend the congress for free, as well as some exciting events there. It's in April and I can't wait to get my brain back into vet stuff again. The practicals look brilliant too! Just have to book up the train tickets and hotel now!

I thought I should also update you all on the fact that me and Phil aren't together any more, but we are still good friends and I will always care for him and be there should he need me. I just want to thank him for his continued support throughout the last year and I am ever so grateful for all he has done and all the sacrifices he has had to make. I also want to thank everyone else for their continued support with our relationship and I really do appreciate their help with everything.

Anyway, I will update again soon with hopefully more good news!

Much love to you all xxx

This Might Hurt A Little.

Apologies for it being a considerably long time since my last blog. Initially this was because I was having far too good a time enjoying feeling almost normal again. However, this was soon not the case and I was admitted to The Royal Marsden for a good couple of weeks with a weekend's break in the middle.

Anyway, I shall start from the middle of October, when I had a lovely lunch out with Grace at Zizzi's - it was brilliant to catch up and it was so kind of her to drive all the way to Kent. It's so frustrating not being able to drive at the moment but the drugs I'm on just completely wipe me out. I managed to catch up with Lucy and Ellie and bake an extremely yummy coke cake and had a delicious lunch at the Bake House in Biddenden. Lottie and I also went pumpkin picking and carved them out for Halloween, as you can see below.

We then managed to squeeze in a visit to Boo's for lunch along with my Grandparents, it was so nice to see them all.  Sara, Will, Thea and Etta kindly visited us briefly on Halloween, it was good to catch up. Can't wait to catch up with everyone properly at Christmas :).

Phil and I managed to get up to Bluewater after a standard Monday visit to the Marsden. We saw Spectre in the imax there, which was pretty cool, and started a bit of Christmas shopping. Amy visited at the beginning of November, and we went out for lunch at The Oak on the Green in Bearsted, which was very nice. Again, it was so kind of her to drive all that way to see me. Phil and I also finally got to catch up over dinner with Sean and Kath at The Park Gate, it was good to see them.

Unfortunately, the following day I started feeling unwell. That week, because I had been doing so well, my doctor wanted me to start reducing my Prednisolone so that I could begin being weaned off my immunosuppressants. However, my skin didn't like the idea of this very much so I stayed on a slightly lower dose instead of completing the weaning process. My guts also had a bit of a tantrum about the lower dose, and I started having stomach cramps that wouldn't even go away with Codeine and Paracetamol. I was feeling really unwell and had to cancel plans to meet up with Maddie and spending a nice weekend with Boo and my Grandparents :(. The following Monday, I had my bone marrow aspirate and check up with the doctors who then admitted me to sort out the stomach cramps. I discharged myself on the Friday as I was fine by then but throughout this time the small amount of neuropathy I had been experiencing had also got worse. 

I was experiencing tingling in my fingertips and toes initially but now this has progressed up to my elbows and knees, and is very painful as well. I had a nice weekend at home despite the pain, but was back in Monday for a check up, and the doctor admitted me again to treat a virus that can reactivate post stem cell transplant, and had in my case. The drug required to treat it had to be given IV and can affect your electrolytes so I had to stay in for at least a week of treatment. There is some concern though that this drug has made my neuropathy worse. However the doctors don't really know and have referred me to a neurology specialist at St George's Hospital to try and work out what is going on. I had to have a brain MRI, which came back fine, and I also had to have a lumbar puncture to take cerebral spinal fluid (CSF) samples. The results of this I'm still waiting for but I do have a high amount of protein in the sample, which is indicative of inflammation, so they're keeping a close eye on me for a good while until I have my referral appointment and more results come back. It does mean that at the moment I'm on a high dose of Tramadol and Paracetamol just to take the edge off the pain. I got discharged yesterday but have to go for a check up tomorrow, and I'm hoping that I might actually be able to stay out of hospital this time!

A big thank you for everyone's support throughout this time, and for all the visitors I've had to the hospital - I'm sorry it's not the easiest place to get to!

Much love to you all xxx

There Is No Gene For The Human Spirit.

My last blog was quite a while ago now, and I'm glad to report that things have improved greatly since! During my last few days in hospital it was a bit of a struggle. I was still spiking the odd temperature for the first few nights, so was still on antibiotics. Nausea was still an ongoing issue, though was improving and being better controlled by the antisickness over the course of the week. My taste was still the biggest problem, however. I was starving, and weak and fatigued from not only the chemo and radiotherapy I'd had but also because I simply wasn't getting enough calories in me. For a week or so all I could taste that actually tasted as it was supposed to was raspberry flavoured things. So I was on raspberry Fortisips (a high calorie nutritional supplement especially designed for this situation), raspberry jelly, and vanilla or strawberry ice cream wasn't too bad. But other than that, everything tasted fairly foul. And what was worse was that it seemed to change on an almost hourly basis. They do say that your sweet tastebuds seem to get back to work first, but it seemed like the rest were taking forever! I was also pretty exhausted for this week. Although I'd had a lot of bed rest in CCU, it wasn't proper rest and it had taken its toll - I slept, a lot, with the afternoon/evenings being the only time I could really do anything. I desperately was trying to do some physio during this time too as my body looked like it was made with match sticks after all the bed rest I'd had. Some nights were really tough and I just ended up crying, complaining that I wasn't getting anywhere with my recovery. Cue reality checks from multiple members of staff - Elsa (my social worker), the nurses and Carla (the physio). They all reminded me that not a week ago I had been in an induced coma and had only been out of CCU a few days! I had to let my body recover - but you know me, wanting to fly before I can crawl, as Phil said.

Anyway, I got discharged on 25th September - a small miracle considering where I'd been only a week before! But I couldn't wait to get home to start on my recovery properly - there is only so much you can acheive in hospital. Within a few days of being at home I was able to eat a lot better, even managing a small roast dinner on the Sunday I was out. I had an appointment at the Marsden on the Monday with the Transplant Clinic to check my bloods, etc. and have a catch up with my new Clinical Nurse Specialist and the doctor. All went well and, despite the enormous amount of drugs I'm still currently taking, managed to get home in time for dinner. That Wednesday, however, I spiked a temperature of 38 for a couple of hours in just one of my ears, annoyingly. I phoned the TCT and they told me - yes, I should in fact go to my local A&E and have some IV antibiotics, much to my dismay.

So, I ended up in Maidstone A&E that afternoon with poor Phil having to take me before starting his night shift. The receptionist was brilliant, phoned through that I was there and put me in a side room. 40 minutes later, however, I still hadn't been seen - the receptionist was livid. And when I did get seen, I now didn't have a temperature - great. That didn't stop them from taking blood cultures, bloods, and making me have a chest xray though - standard infection procedure. I was then moved to the majors A&E ward and put in a side room, and desperately tried to get hold of the Marsden to see if they had a bed for me. They didn't. And Maidstone were terrifying me slightly with their apparent lack of knowledge on Stem Cell Transplants (which is fair enough, they're only a general hospital at the end of the day). But either way, I knew I'd be happier and better cared for at the Marsden. I ended up staying on the UMAU ward until Saturday morning. The haematology doctors only first appeared to visit me on the Friday, as they apparently 'weren't aware I was in' - even though my dad had been up to the haematology ward and informed them on the Wednesday. They were brilliant once I was seen by them but the communication before that was an utter shambles. It's at times like that when you really see how much strain the NHS is under. That and when you can't have toast on a Saturday morning and just have to have bread because there's too few people to serve the breakfasts so they don't have the time :/ quite bizarre - I would have done it myself if they'd showed me where the toaster was!

Anyway, the Marsden finally had a bed for me on Bud East that Saturday and within 5 minutes of the ward sister at Maidstone telling me, the hospital transport arrived (small miracle!) and whisked me off! I hadn't spiked my entire time at Maidstone, so the Marsden got me straight onto oral antibiotics and discharged me the next day - result! Especially, when Maidstone wanted to keep me in until the Monday on IVs at the very least! Since I'd been in the Marsden and had my bloods redone, they even let me wait until the Thursday before having to go back to be seen at the Transplant Clinic, which was very kind of them! As my appetite and taste was still improving each day, I couldn't wait to get back to home-cooked food!

That following week was Dad's birthday, and despite going down with man flu, he still managed to get very excited about his new ice cream maker and sandwich toastie maker! Lot and Dad also went off to see Michael McIntyre on the Saturday, as I'd bought tickets but wasn't able to go as I still have to be careful around large crowds of people/public transport/ill people/children/pets/anyone who may have chicken pox or shingles etc etc. I'm not entirely sure it was their cup of tea but they said they enjoyed it, and very kindly bought me and Phil tour tshirts. I have also tried out my new snack maker, which was a lovely birthday present from my Grandparents, and made some yummy mini doughnuts!

Mini Doughnuts

This last week has involved another trip up to the Marsden for the Monday Transplant Clinic. I saw Celina and had a good catch up with her too, which was really lovely, as well as a few other inpatients! My blood and bone marrow results are all currently looking good though! They test my blood and bone marrow to check how much is being produced by my donor stem cells vs my own, so ideally you want to be 100% donor after transplant - which I currently am! And the tests for leukaemia and MRD from my bone marrow are all negative! Woop! I have another check for all this at my 3 months post transplant, which is 16th November (can't believe how quickly that has come about!). At that point they will decide if they want to restart me on the intrathecal chemotherapy as a maintenance precaution. But at the moment, touch wood, everything is looking good. 

At 3 months post transplant they also start to wean you off the immunosuppressants, very slowly, so I should have that to look forward to. I did have some Graft vs Host Disease - skin and guts - post transplant, but this has settled down with the immunosuppressants. Obviously though as they start to wean me off them this could re-occur. And the chronic fatigue is an ongoing issue too. Apparently it's not like coming off chemo where you just keep improving, it more waxes and wanes. So one month I could feel a lot better and then I could feel rubbish all over again.

I was also very kindly nominated by my Clic Sargent Social Worker for an 'Astonishing Achievement' award for a university/higher education level young adult at the UK Youth Achievement Awards, which to my amazement I won! I wasn't able to attend the actual event unfortunately, as it was the day after I was discharged after my transplant, but I very kindly got some goodies and my little trophy and certificate still!

My Award from the Youth Achievement Awards

My main aim over the next few months is to keep on it with my recovery - keep my physio going and my calorie intake up! And I'm looking at undertaking a certificate in business (or similar) to keep my brain going and top my CV up, as well as cracking on with the rest of my research project and going over my vet stuff. I'm planning on getting a job, if I can manage it, in the new year, so this will help with my applications hopefully, as well as, supporting my vet work too. We get some insight into the business side of things on the RVC course, and what we do get is quite good, but there's not nearly as much as I would like. So, I figure I may as well use the time I have now wisely and save myself some hassle later.

This week I've also had a lovely couple of days out. I went with Phil to Ashford for a bit of shopping and lunch yesterday, which was great - I had a yummy Chicken Ramen in Wagamamas - just what you need on a miserable Autumn day to warm you up! And today, Grace very kindly made the long trek from Ipswich to Kent to visit me - we went into Maidstone to close our joint account (end of an era!) and had a very nice lunch in Zizzis, where we both ate copious amounts of pizza and pudding! Was sooo nice to catch up! Have missed my old housemate a lot! And a massive thank you to her too for my gorgeous birthday pressies!! Must catch up again soon!

Yummy Wagamamas Lunch with Phil :)

Tomorrow, provided I'm not too exhausted from this week's events and the weather's not too foul, Lot and I are planning on going pumpkin picking! So, hope you all have a lovely few weeks and I shall update you all again soon! I also intend to start my long list of people to catch up with, so please bear with me, and I hope to see some of you very soon!

Much love to you all! xxx