There's Something About Your First Piece.

As many of you already know, I got let out of hospital for the weekend and it was brilliant! So so good to be home surrounded by the family, Phil and Flo! 

Flo spark out on my lap :)

Back in my own bed, and with amazing home cooked food! :) Saturday began with Dad's awesome American Pancakes, and then the lovely Amy Norman came to visit for lunch! Copious Chicago Town pizzas and garlic bread was consumed - so so good! It was so nice to catch up on vet chat too - oh my god, how I had missed it! I need vet talk in my life! Fingers crossed in a couple of weeks I can get back up to Potters Bar too and catch up with the lovely housemates and rotations lot if people are around?!

Sunday was pretty good also, with an amazing fry up for breakfast, and the yummiest pulled pork shoulder roast for dinner. Can you tell the steroids are still well and truly kicked in?! Not obsessed about food whatsoever :P. Was able to go round Phil's in the morning to catch up with his parents, his Grandad, and the ever gorgeous Archie! Was so nice to see them all! The remainder of the day consisted of attempting to reorganise my room, as I now have uni stuff everywhere - however, we are getting there! I seriously don't know how I manage to accumulate so much rubbish! To be fair the majority is just work - lever arch file after lever arch file! Least it means I can keep on top of my knowledge over the next year though! With my chemo brain at the moment, I certainly need to! 

I also received an amazing gift from my lovely Auntie Boo - a nutribullet, to make lots of yummy juices and smoothies and things! Very excited to get using that! :) So, thank you again, so much!

Today involved another trip up to the Royal Marsden for some blood tests and my next lot of IV anti fungal treatment. Cannula went in first time, bled like a trooper and worked perfectly for my treatment! Pretty awesome going. My blood results were also awesome - my neutrophil count was 1.05 and my haemoglobin and platelets were still good, so the doctors were more than happy to send me home again! To celebrate my counts being so good we went out for Wagamamas and, oh my, was it amazing! We had sticky ribs, chilli squid, duck dumplings for sides and I had the chicken Pad Thai that I have been craving for the last month - it was 100 times better than I could have hoped for! With chocolate fudge cake for pudding and a FREE green tea, it was the most amazing way to spend the evening with the family and Phil. 

The awesome chocolate fudge cake at Wagamamas!

So, bring on a lovely relaxing day tomorrow, hopefully finishing off some bits and pieces in my room and various bits of paperwork! Wednesday I'm heading back into the Royal Marsden for some more blood tests, anti fungal treatment and a brief stint until Friday. I have my next bone marrow aspirate and core (sedation very much requested again) and intrathecal chemo on Thursday, and am then due more anti fungal Friday along with another possible dose of Vinblastine. On the note of the Vinblastine, they don't tend to use it instead of the Vincristine to begin with as it can actually suppress the bone marrow more than they like to, yet it supposedly has less side effects in terms of peripheral neuropathies; however, this can still be a side effect anyway... Either way, will have to wait and see what the doctors want to do, and then depending on my bloods I should be home next weekend again. Fingers crossed! Then it's a waiting game on the bone marrow results. During that next week I get put on some new oral chemo and my steroids get tapered down! So that could be interesting! The following week we should have the bone marrow results and then be told what the plan is in terms of my consolidation phase, as it then all depends on how the blastocyte situation is looking, and how well or not I have responded to treatment so far. 

Just so everyone knows as well, now it's probably best to not send anything to me in the hospital as I'm going to be in and out a fair bit, and not actually necessarily in the Teenage Cancer Trust Ward. So home address is probably best for now, and visiting is most likely best when I'm at home :) We shall see what entails, however!

Much love to you all
xxxx

The Courage To Face Fear.

Since the hair was coming out in rather unattractive clumps, and quite frankly making a mess of the ward, it simply had to go! Stacey, one of the lovely nurses, very kindly attacked the last of what was left on my head into a nice punk look before shaving it all off for me! It was quite liberating to say the least! I'm just so thankful for Lottie and her amazing head gear she got me! You don't realise how warm your hair keeps your head until it's all gone! It really is quite bizarre! 

All gone!

I have my wig appointment booked in a couple of weeks too - which I am rather excited about! The amazing charity, the Little Princess Trust are able to fund it, and incredibly I'm going to be able to get a human hair one that I can choose the colour and length of, and get styled personally to exactly how I would like it. Yay!!

I received the following picture from my lovely Dad yesterday too, which I thought would amuse everyone! The caption I received to go with the picture was: "Flo wanted hedgehog to look like you!" Least we are all able to see the funny side about all this, it did make me laugh a lot! :D

The remnants of Flo's hedgehog toy - apparently destroyed to resemble me :P

I had the lovely Ellie and Alice visit on Tuesday, and we had a pretty good game of Settlers of Catan with Phil too - turns out he was listening how to play the other week after all - cheeky! And we discovered that it appears on the Big Bang Theory too - this game is slowly taking over the world I swear...I'm blaming Ellie :P 

Alice got me the sweetest gift as well bless her - a Lokai bracelet, which has the most beautiful meaning behind it. There is a black bead to remind you to stay hopeful, it holds mud from The Dead Sea, the lowest point on Earth, signifying the difficult moments you experience throughout life. And there is a white bead to remind you to stay humble that carries water from Mount Everest, the highest point on Earth to represent life's highest moments. I honestly don't know where she finds these things (Instagram I think ;) ) but it is just so beautiful. So, thank you so much my lovely!

Yesterday, in case people missed too was Chinese New Year, and I have to say the biggest of thank you's to the kitchen staff up here at the Royal Marsden Teenage Cancer Trust Ward! They put on an absolutely amazing Chinese buffet for us with spring rolls, prawn crackers, chicken chow mien and sweet and sour chicken and rice! All very much at the last minute, and it was absolutely incredible! We had it in the 'Chill Out' room and it was so nice as it got all the inpatients out and together with their families - it was a real boost for everyone! There was so much food the nurses joined us too! It really was fantastic! Phil and Ellie were up yesterday also but with their own excessive amount of Chinese take away :P which was lovely! We had a good catch up and watched the rubbish that was Eastenders - all very exciting up until the massive anticlimax at the end! Anyone else feeling a bit hard done by with that storyline?! Just seemed utterly ridiculous!

Anyway, Friday today, which is new cannula and chemo day! Amazingly I still have the one in from last week still - shock, horror! The consultant should be around today too, to hopefully let me know what the plan is for the next week or so, since Thursday I have my bone marrow aspirates etc. and then I MAY be able to go home!! My bloods are looking good at the moment too, my neutrophil count yesterday was above 0.5 (the limit that I have to be above to go home on when I do get discharged eventually) and my platelets amazingly were within a normal limit at 272 (they had been as low as 18 at one point), which means my bone marrow is actually working again! I still don't know what's going to be in store for the consolidation phase (if I am able to go into that phase that is, as it does depend on my bone marrow results), however, I should find out what the options are likely to be very soon. There's also a bit of discussion going on as to whether I'm going to be continued on Vincristine, since the numbness in my fingers could be persistent and there's talk of changing to Vinblastine instead, but it's up to the consultant so I should find out what's occurring with that today too! Ooo it's all go! :)

xxxx

Life Is Like A Box Of Chocolates...You Never Know What You're Gonna Get.

Firstly, I have some rather huge thank you's to say! Primarily, the biggest of thank you's to my extremely generous Uncle Nick who has been so amazingly kind and sent me a gorgeous MacBook Air. I'm feeling extremely humble and spoilt to say the least at the moment... I really cannot believe it all... Everyone has been so incredibly kind, it is so very overwhelming.

Also, a massive thank you to everyone at my Dad's office for their amazing fundraising efforts for Leukaemia and Lymphoma Research! They raised a massive £555 from a 'Dress Down Friday' and an absolutely amazing 'Bake Off' cake sale!! You are all so very kind and generous - thank you all so so much! This has now taken Lottie's total well over her target of £2000 - it is absolutely incredible!

The last few days have been fairly uneventful in the world of the Royal Marsden to be honest. It was lovely and relaxing to spend Wednesday and Thursday with Phil catching up on Breaking Bad, which we are now very much addicted to!

Friday was a bit of a pants day in terms of having to have yet another cannula changed for my chemo. But once in, I was able to get my full doses of Duanorubicin and Vincrinstine, plus some nice packed red blood cells! This weekend has been pretty nice and relaxed too! Lottie stayed over last night and we had a good girly film evening of watching We're the Millers and The Princess and The Frog with pretty awesome ice cream sundaes, courtesy of Stacey - one of the best nurses on the ward might I add!

Mum and Dad have been up for the last few days too and we had a good game of Settlers of Catan yesterday (a very addictive board game, which I finally think the family understands how to play :P ), and a good game of Scrabble today! Not that they go easy on me! Despite my chemo brain and numbness in my fingers!! :P We're already planning our trip to Wagamamas when I'm out and allowed to eat out again too! It really is quite sad how much my life now revolves around food!! It is becoming quite an obsession! From cravings for onion ring crisps to strawberry laces - there is no logic!! My poor parents are struggling to keep up I think!

The hair's coming out in good chunks now too - just as I've got used to having it short! Typical! So this afternoon was spent with Lottie learning how to tie head scarves and looking at the awesome ones she's been so kind to order me! She is so lovely!! I'm so excited about getting them, I actually think they look rather awesome - will probably continue to wear them even after my hair comes back! Continuing on the note of side effects, the chemo is fun in as much as the Vincristine can cause peripheral neuropathies, among other things, but it does mean my fingertips are becoming less and less sensitive. This makes writing, using a knife and fork and typing generally quite interesting tasks to try to undertake now. It can also affect your hearing, so the last week or so was fun when it sounded like everything was underwater. Luckily this appears to have resolved today, but I just didn't realise how depressing it would feel while it lasted! The peripheral neuropathy should be a temporary thing, but it's still a bit of a concern what with the prospect of OSCEs next year potentially... Fingers crossed everything turns out alright though!

I'm certainly looking forward to this coming week though! Get to see lots of lovely visitors! :) If anyone wishes to come up too by the way, please do let me know :) Tuesday's looking busy at the moment, but other than that I'm sure something could be worked out!
xxxx

We Are Infinite.

I don't feel I can update my blog this week without acknowledging the BAFTAs. Mainly because this year, one of the most incredible films of our time won Outstanding British Film in 2015: The Theory of Everything. If you haven't seen this film already, you must. It is a film for the soul, without which I feel my entire outlook on life at the moment could have been completely different. Stephen Hawking is true inspiration. To be diagnosed with such a debilitating disease at 21, and given just two years to live must have been harrowing. But now look at what he has achieved 52 years on. He is truly an incredible example of 'mind over matter'. 

Continuing on the positive note, I cannot thank the people at the Teenage Cancer Trust Ward enough for how amazing they are making my time in hospital. I know this sounds a very strange thing to say, but I truly cannot fault the care here. With a different menu every day, youth workers to keep you from being bored and a DVD collection to die for, I didn't think it could get any better. Then, I was told about the 'Look Good, Feel Better' evening. Basically volunteer make up artists come in to show you how to look after your skin and apply make up properly, so that when you start losing your hair (eyebrows included) you can look semi-human still! I thought this sounded amazing to begin with, and THEN I heard about the freebies! I mean look at them! From Coco Chanel, No. 7, Estee Lauder, Lacoste, Max Factor, Clinique, the list goes on! Cleanser, toner, make up remover, primer, concealer, foundation, powder, mascara, perfume, eyeliner, lip liner, lip gloss, lip sticks, brushes.... I'm set up for the next ten years on the make up front now! It's incredible! And all kindly donated by the companies for the charity!

What's in the bag!

Now, anyone who knows me well knows I don't really 'do' make up - so last night was a learning curve to say the least! But was it such good fun, and Lot was even able to join me for the girly evening and sleepover! Reminded me of the good nights out with everyone at uni, with Grace pimping up my make up :P all that was missing were our cocktails!!! 

I was feeling pretty ok post chemo yesterday anyway so spent some time up on the roof terrace in the glorious sunshine! Was so nice, but it wasn't until the girls did my make up did I realise how washed out I looked! So here's yesterday's before and after photos - not that I'm going to be able to recreate it I imagine but at least now I have the tools to try!

Before                                        After

So a massive thank you to the amazing volunteers for giving up their evening to teach us how to look after ourselves and definitely feel better about how we look! And thank you to the make up companies for their amazing gifts! Also, everyone who has ever donated to the Teenage Cancer Trust - this simply couldn't happen without you fantastic people.

A big thank you to everyone's fantastic fund raising efforts for Lot's skydive too! She's so close to her target now! A special thanks to my Dad's work too with their 'Dress Down Friday' and 'Bake Off!' - I look forward to seeing all the pictures of the cakes and intend to put some up here to show off too if I can! They sounded truly incredible, so thank you all so much for your kind efforts and donations!

I have a fairly uneventful day ahead of me today, thank goodness. My 'bad chemo day' seems to be Sundays so am making the most of catching up on Broadchurch and getting the ball rolling with lots of paperwork today! Oh the joy! :) Uni have been especially brilliant with everything, and they need an update too so lots of emails to sort out! Busy day ahead! Slightly gutting moment yesterday though when I got an email from the Vets4Pets Graduate Programme Scheme asking me to send them my CV...never mind! Maybe next year :) kind of nice knowing I don't have to think about all that for a bit to be honest!

Much love to you all xxx

Love is in the Hair.

So a few changes since Wednesday! Firstly, the new hair do courtesy of the lovely volunteer hairdresser, Amy!

Before - the plait was donated to the Little Princess Trust wig charity!

 

And after!

Since I am inevitably going to be losing the locks anyway, I figured why not! It's certainly lighter and more convenient for when I come to do surgery again! Just need to invest in some styling products now - this is all new to me so I do welcome any suggestions!

Yesterday also brought with it another bone marrow aspirate. This time I opted for sedation with Midazolam (why bother with unnecessary stress and pain I say), and my god is that stuff good! Didn't feel it, don't remember it - b-e-a-utiful! Can understand why we use it so much in vet med! Had my intrathecal/lumbar puncture chemo also, but due to me being a bit sleepy and having very small spaces in between my spine this took a little bit longer than the last time. Am a bit sore today from the multiple needle sticks but still cannot complain - the Midazolam was still on board anyhow! To try and reduce the affects of this chemo I was on fluids over night, and full fat coke - certainly can't say no when the doctor's telling you to drink it to help with side effects!

 

Today, I finally got my next lot of IV chemo (Duanorubicin and Vincristine). It has been somewhat of an endeavour since my veins are worse than poor! I am definitely getting a bad name for myself :P So after several new attempts at getting a decent cannula in, we went with the one that was kind of in anyway! Least the drugs got in eventually - that's the main thing!

So the weekend brings with it a bit of a rest from treatments, and probably blog updates. Thank you to Louise and Matty for their beautiful pictures I received today too! Lots of love to the Maunders, and the flowers are stunning - thank you! (Mum showed me pics especially). You're all too kind!

 

Much love to you all xxxxx 

May The Odds Be Ever In Your Favour.

It's been a few days since the last instalment, and there's a good reason for that! Chemo's crap. I mean, it's not as crap as that epic hospital scene in The Bucket List with Morgan Freeman and Jack Nicholson (you'll know the one I mean if you've seen it...) but to be honest, it's not far from the truth. Luckily, the anti-emetics have come on leaps and bounds since a few years ago, which obviously helps immensely!

Anyway, firstly the most important thing! - A massive thank you to Phil and Lottie for doing a sterling job in clearing my uni room out on Sunday. I owe them both big time after all this is over!! At the very least an awesome steak dinner at The Old Mill or Miller & Carter! They definitely deserve it considering how much stuff I've managed to accumulate! Also, thank you to the fam, Phil and Ellie for keeping me sane and coming to visit so often - you're all too kind!! Even when all I do is sit here looking sorry for myself!

In addition, if you haven't seen already, my sister is doing something incredibly stupid/brave/courageous and throwing herself out of a plane (with parachute attached mind) to raise money for Leukaemia and Lymphoma Research. She aims to raise £2000 and is amazingly over half way to achieving her target! Please support her, and get her feet safely back on the ground by visiting her JustGiving site - every little helps :) https://www.justgiving.com/Lottie-Haynes/

I also said in my last post that I'd let people know about contacting me, etc. If anyone would like to contact me at the hospital, the address is: Georgina Haynes, Bed 7, Teenage Cancer Trust Unit, The Royal Marsden Hospital, Downs Road, Sutton, Surrey SM2 5PT. In addition, if you wish to call me, best download the Viber app, as signal is appalling to say the least! Otherwise, generally, unfortunately due to my neutropenic state I cannot receive flowers or food gifts unless specifically individually wrapped, etc. and if you would like to visit, please do call ahead as I have good days and bad days, and am not allowed to see anyone with a cough/cold/sniffle/stomach bug/who has recently been in contact with young children that have been ill with things like chicken pox etc, so please let me know if you are at all concerned and I will check :) At the moment I'm not seeing a huge amount of people until I have some kind of idea of how the chemo is going to go, so please also don't feel offended or rejected if I'd rather just vegetate.


Anyway, the hospital update!
Monday was a fairly interesting day in as much as I had a MUGA (Multigated Acquisition) scan, which for people like me who don't have a clue, is where they inject you with some radioactive stuff that attaches to your red blood cells, and then scan your heart so they can see if your heart is pumping your blood properly. Sounds pretty dam fancy if you ask me, seeing as all we have in the vet world is an echocardiogram really! Well and fluoroscopy if we want to be fancier. The process was all going well, however, until a poor woman crashed in the waiting area in between me having my injection and waiting for the scan... That was mildly terrifying, but thankfully the lady was treated extremely quickly by the absolutely amazing staff at the Royal Marsden and able to be admitted. Never a dull moment when I'm hovering around it would appear - I think I'm starting to get a reputation...and not necessarily a good one...

Tuesday brought with it it's own surprises too, despite it supposed to be being a 'quiet' day for me... I had confirmation that I am Philadelphia negative, which is fantastic news as it would otherwise have undoubtedly meant I needed a bone marrow transplant. Other specific mutations have also been ruled out, which could have affected my treatment plan too, so that is also fantastic news so far!

The slightly less fantastic news through all this though are the side effects of the chemo of course. The intrathecal/lumbar puncture has brought with it insanely irritating headaches, which will only go away if I lie down... This is a normal occurrence apparently, and especially common in young people, so prior to tomorrow's next one I've had a huge amount of  fluids and will inevitably get more afterwards too now.

Blood tests are a daily occurrence here, as you can imagine, and due to the effects of the chemo, I had to have more platelets and my first packed red blood cell transfusions yesterday.

 Me and my first pRBC transfusion, and Ellie here feeling like a vampire it would appear :P

This all went smoothly, and I did feel a bit better for it - but still the headaches pester on...

Today involved being yet again mildly radioactive, and having to have a Glomerular Filtration Rate test. Basically, they inject more radioactive stuff, and take blood samples 2, 3 and 4 hours afterwards, and then measure something (?) to check how my kidneys are functioning. My bloods today came back with low platelets again, and seeing as if they're below 20 I tend to get nose bleeds, I had some more today. They need to be above 50 for the lumbar puncture anyway, so why not give me some pre-emptively :) I also appeared to have low calcium, so in addition to the normal tablet concoction I received some 'nice', 'chewable', 'lemon-flavoured' calcium tablet supplement - oh it's all fun and games here! Bleugghh, especially when your tastebuds are now refusing to work properly!! All that I could eat today that actually tasted how it was supposed to was treacle tart and custard - not bad I grant you, but miserable none the less - especially when water starts to taste like cardboard :(

Anyway, I best get some sleep, as tomorrow involves a hefty day of being stabbed in the back with needles! I have another bone marrow aspirate to endure and another chemo lumbar puncture! See you all on the other side!! :)