Well after a week of recovering I’m just about human again! I had been chosen to attend the annual conference set up by the Teenage Cancer Trust, called Find Your Sense Of Tumour (really it’s not offensive or in poor taste I swear). I was a bit unsure whether to go as I still struggle really badly with my concentration, memory, independence and mobility, but after a bit of persuasion and my wheelchair I was on board. Because it is ran by the charity it was free for us, and it included all meals and the stay in the Center Parcs villas (where the venue was held over the weekend). Current and ex-patients come from all over the United Kingdom to be a part of it (we even had patients from Italy this year). It involves numerous inspirational speakers talking about their first hand experiences or ones that relate to the big “C” in some way. Even though I’m not long out of treatment and some parts were quite hard hitting I’m so glad I went! I was surrounded by hundreds of young adults that could talk so openly about stuff, because we all had that one thing in common and there wasn’t an awkward silence after mentioning it. The conference had the right balance of informative topics and humour (I’m not sure where else it is acceptable to laugh at a soldiers experience to having his legs blown off!). As the title states it is about finding your sense of cancer and how you can go forward from it in an upbeat way and share a laugh. Even if I did get frustrated at myself for not being able to remember talks I had just sat through, and struggling to keep my concentration. I know that at that present time I was enjoying myself and relating to what was been discussed. It sounds odd, but it didn’t feel like it was just a constant stream of cancer talk, at times I actually forgot that, that was why I was there.
After the sessions there was an opportunity to have some free time, there were activities such as: arts and crafts, jewellery making (thank you to my support worker for “helping” me with that one), massages, acupuncture, sports, makeovers, or you could just go for a wander around Center Parcs and go swimming etc (I would roll on back to the villa cos I’d be pooped!). We would then head back to the venue in the evening for dinner and a DJ, ready to throw some shapes (I had to sit dancing out because of my joints and weakness, oh what a shame…not). My support worker was trying all weekend to bring the shimmy back into fashion, and I’m ashamed to say she achieved that mission! We also had a showcase night when each unit would get up on stage to preform a dance or an act. Make way for the Nottingham group busting some moves from sister act, outfits and all! There was also an Oscars night to round off the weekend and a movie theme fancy dress (say hello to Toy Story!)
Over the weekend it highlighted that I still have a long way to go in my recovery and rehabilitation as I depend a lot on people, and get very tired to the point of exhaustion. But I did grow closer to the fellow members from the Nottingham unit (staff and patients), and even if that was the only thing I took away from the conference, I feel more than privileged for it. We shared many a discussion, some quite deep, some very silly. I struck lucky and had a very chilled and organised villa (thanks to the staff), complete with coffees made for me in the morning and a cooked breakfast! Ours turned into a bit of a gathering villa, and it was really lovely to get to know people better in a relaxed environment (some stuff I wish I could forget hearing haha). Overall it was just really nice to be in everyones company, and I can honestly say I haven’t laughed that much in a very, very long time. So thank you each and every one of you!
Can I start by saying a big thank you to a work friend who sponsored himself to reach his target of running 100 miles in a month! not only was it an incentive for him, it also kept my fight alive and with the help of others raised money towards my treatment and ongoing rehabilitation. It made me realise that I have not really explained why I still need help fundraising even though I have reached my goal, so I created a page for this (located at the top of the site, the tab labeled “Raising money for rehabilitation“). So please feel free to read it and continue to share it to create that amazing drive again.
So what have I been getting up to? Well I’ve been doing so much more, and keep pushing myself to the limits. Some days I can ditch the wheelchair for a bit, and that’s when I realise how far I have come in such a short time (even though it feels like forever). But then I will return to reality with a thump as I am laid in bed for the next two days building my energy back up. These are the worse days as I feel so drained, my muscles and bones aching, leaving me in agony. But because of the brain trauma I have been left with I struggle to remember how I felt the day before, my mind is very much in the present, so how I feel that day is all I can focus on. I’m trying to devise a schedule where I can do little and often but it is hard to stop myself when I’m doing something I enjoy and feel strong in myself as I forget how its going to make me feel the day after. Only when I sit down afterwards, a bit tired, do I remember what a traumatic day tomorrow will be. In these situations I feel like I’m stuck in a cycle and I’m never really “Hopeful about tomorrow.” But who knows what I will achieve in the next week, or month? I just need to concentrate on the progress I have made in the past month and how these small baby steps are actually making a difference.
I realised it was ages since I posted an update on my progress, so I thought I’d fill you in ( I’ll try not to ramble on and on reciting every day). I started my treatment that you kindly helped to fund on the 21st, and I am to have it once a week for four weeks. I was actually quite underwhelmed when it arrived on the daycase ward, but like they say the best things come in little packages! The T-Cell injection takes about 5 minutes to give, and the only side effect is that I smell of sweetcorn whilst it’s in my system! I bet you had to re-read that last line as it sounds ridiculous, but yes, I can’t smell it myself I just get an intense flavour of buttered corn in my mouth, but it’s true I reek of the stuff. The routine is that I have to stay for 3 hours afterwards to ensure I don’t suffer a reaction but that doesn’t bother me as I’m just so honoured that I’m able to receive it thanks to all your help (plus I just end up falling asleep). I also learnt a bit more about the treatment: T-Cells are extracted from the blood of New Zealand donors (they can’t use blood from the UK for a reason….but I forgot), the high concentration of cells are then injected into my blood stream where they then carry out their job fighting B-cells (which are the cells that can mutate into Lymphoma). It was important that I received this treatment as I had a reduced amount of T-cells due to long-term immunosuppressant, so now I have a very high rate of staying in remission thanks to the T-cells that will continue to reproduce increasing the number further and keeping the B-cells at bay (please don’t sue me if my medical information isn’t 100% correct)!
I’ve been managing to get out and enjoy myself meeting up with friends, going out for meals, bowling, baking and visiting food festivals (I’m starting to see a trend related to food/eating. typical). However, even though I can feel really good one day its hard to understand and deal with the days that follow. Unfortunately everything I do at the minute pushes my body as I am at the beginning stages of recovery. The following days can leave me exhausted not even able to lift my own head, completely drained and in excruciating pain. It poses the question whats the point in doing things if I have to go through this as a result? but I know I cant think like that, I have to work with the bad days and just rest, because the days when I do something really are worth it. I have a smile on my face, have something to focus on and motivate me, and best of all I get a glimpse of normality and what life will soon be like for me.
Like I said this is only a quick update about my treatment. I’ll be sure to blog again soon about my progress, and to thank the people that are still raising money and supporting me!
…Everyone that donated money on my Go fund me page, whether it was £10 or £100 it all made the difference and WE MADE IT!!! I’m still in shock that little old me has so many people who are supporting and getting behind my campaign to fund the treatment for my lymphoma. When we were told we would have to fund the treatment ourself we were in shock as its story you might see in the newspaper, never did we think it would happen to us (talk about the worst luck). “Well it could be worse, it could be £20,000 or more we have to raise” always the optimist. Whilst we were going through options; loans, grants, borrowing, fundraising etc) my friend mentioned Go fund me. It has been a lifesaving tool (literally lifesaving), it is amazing how quickly it took off and with your sharing and our joint determination we managed to reach the total in less than a month, that’s just unbelievable. I cant thank you enough for your generosity and your willingness to give what you can without a second thought, you’ve enabled me to go forward and receive my vital treatment!
But unfortunately the journey doesn’t end there, I’ve kept my go fund me page active because any money we raise now will go towards my aftercare and rehabilitation. The type of chemo I had can actually penetrate the lining of the brain and that is why it’s effective when targeting the lymphoma. However this meant that it also destroyed some of my healthy cells inside the lining, as a result I’ve been left with some brain trauma and that is why it is important that I undergo rehabilitation. I will have to re-learn processes, have physiotherapy for my mobility in my hand and walking, teaching my brain how to carry out certain tasks etc. It isn’t going to be an overnight transformation but I will put as any hours into it and get as much help as I can, so I can get as close to my old self and personality as possible. I am still taking orders for cotton shopping bags (you can see the designs on the fundraiser page), and i have a few more instant brownies in a jar for sale these are both £3 each (just contact me for details/orders). So don’t forget to keep on sharing my fund me page, and remember every penny really does count.
I would also like to give a massive thank you to all that contributed to the collection going around for me at work. I was presented with a beautiful pair of Tiffany earring and a heartfelt message to accompany it. It really does sound soppy but it just reminds you how much of a family we are in the Big Blue Tin, and how we look out for each other, even when you move somewhere else (I’ll never get rid of you lot)! It was such a lovely gift and a bit of luxury I wouldn’t otherwise treat myself to, so thank you for making me feel so special!
What a success the fundraiser was, together we raised £1700!!!!!
Thank you to each and every one of you that turned up and supported me with this fundraiser event. I had an amazing day and couldn’t believe the atmosphere that was created, I was blown away, and want to say thank you to anyone that helped to make it happen (even the bit of rain wasn’t a problem, out popped another gazebo from nowhere)! Also I’d like to say thank you to everyone that made the raffle such a success by donating something, never did I think we would have so much, you really are generous people! (apparently it was all hands on deck at one point, as we had 5 people frantically scribbling names on tickets. I believe we went through 4 raffle books just on the day). I seem to be a bit vague on the details of the day as I didn’t move from my seat located in prime position between the sandwiches and cake for a good couple of hours (I was meant to be manning the craft stall but that went out the window as a followed a coffee cake), that may also be the reason why I don’t have any of my own photos from the day. I would like to say that it is wonderful that you are donating and still sharing my go fund me page, the continued support has been out of this world. It shows true togetherness, and proves that there are still such humble and kind people around, so thank you for this, I really couldn’t have done it without you.
We are nearly there! please continue to donate www.gofundme.com/eyvmaukk so you are aware it doesn’t just stop at my treatment, once we have reached the cost for this (£12550 is the actual cost, I didn’t set this as the goal as never in a million years did I think I would have reached even 1/4 of it) if there is any remaining money, this will go on my aftercare as I go through rehabilitation to re teach my brain. Again thank you for all your support you lovely lot!
Lets start by celebrating the fact we have just hit the £8,000 mark to fund my treatment!!!!!
I would just like to say none of this would be possible without your support and generosity, everyone has pulled together and made this happen. I really can’t thank you enough, everybody that has donated, shared, organised ways to raise money, and just generally been there for me (I’ve acquired my own PA whilst being ill, she also doubles as an “Ashleigh sitter” when I need entertaining during daycase treatments. I also think I’d be skin and bones if it wasn’t for my work mum keeping me well topped up on the snacks and cake supplies). I keep thinking my words are not enough but then again I don’t have the foggiest on how to express or show my gratitude to the many people who have helped…….hmmmmm maybe another Costco cake!!!! win win for me and all that. But seriously when I started the funding page for my treatment, never in a million years did I think or could even dream it would kick off like it did! I’m just so lucky to be surrounded by such lovely people who are wiling to put someone else’s needs first without a second thought. I know I keep overusing the word in other post but I truly am overwhelmed (I need to find an alternative in the thesaurus, maybe astonished? amazed? bamboozled?…i’ll keep looking) by all the support I’ve received. Thank you from the bottom of my heart!
Let the celebrations continue as it’s less than a week until the Afternoon Tea fundraiser at Woodthorpe, Nottingham (Those that have said they are coming I believe the address and map of where to park goes up on the Facebook event page soon). We are all super excited and the event has really grown (lets hope this 2nd location can fit it all in. I seem to have forgotten it’s a small garden tea party and have organised “Nottingham’s annual tea party” more suited for the market square). Unfortunately on a few occasions I have overdone it and forgot I’m actually meant to be resting and recovering, but its only because I’m a typical control freak and want it all to turn out right. I’ve taken a step back and I’m just doing a little bit everyday so that I actually make it to Sunday (to miss an event that heavily features cake is just unthinkable). I’ve finally managed to do enough bags worth taking pictures of, so to avoid disappointment on the day (as I’ve just made one of each) get in contact with me (either comment on here or message me via twitter or Facebook) if there is a design you want me to make more of. Or if you can’t make it on sunday but still want to get your hands on one, again contact me so I can sort it as I will continue to make and sell them after the event. I may have underestimated how many people were baking something, maybe it was my very subtle mention of my love for cake. if you are umming and ahhing about your culinary skills you can always bring a plate of sarnies, or something savoury. But for the rest of you, I’m looking forward to overindulging and sampling (a full slice obvs) as many of your cakes/bakes as physically possible, so make sure there is plenty for me to get through!
So just to round it off, It’s all hands on deck in our house, as we get the last few bits sorted for the fundraiser, and thank you again for your continued support and donations. Seeing what we have achieved is amazing! Together we can actually make it happen and raise that last quarter so I can have my treatment. You’ve made a Mrs Potato head looking girl very happy, and actually changed her life!
I had to make a very hard decision, one that tested my morals and made me face up to reality. To cut to the point I have finished the first course of treatment (my four cycles of chemotherapy) and as a result my latest MRI didn’t pick up any Lymphoma cells which is some of the best news i could have received! However in order to keep the cells away and give me the best chance of staying in remission i need to undergo a second type of treatment that processes my blood and eradicates all the (something type) cells good and bad (don’t quote me on that, Dr talk is really difficult to understand). The consultant put my case forward and explained that it was the only option for my situation. Radiotherapy is far too dangerous in someone so young, as you have to target the whole brain (which would leave me permanently brain damaged), there’s also stem cell transplant which given my medical history would carry really high risks (a previous trial focused on using stem cells to actually treat crohn’s disease, sadly not all the participants survived). After explaining all of this and much more, my case for funding was rejected by the big pencil pusher. So where does that leave me? The consultant made it very clear that i need the second type of treatment. If i just left it now there would be a chance of it coming back, in which case the success rate of treating it drops to 50%. Because it isn’t on the NHS (I’m not even going to start getting frustrated at the self inflicted illnesses they pay for!) we will have to pay for it ourselves…….all £12,000 of it.
So after discussing it at length with numerous people we have decided to change the aim of the afternoon tea fundraiser and set the focus on raising money for my much needed treatment. As stated the treatment will cost £12,000, and thats why we were hoping for funding! We are exploring different avenues and support that is out there (in the form of grants etc), but we felt we could use this event on the 30th to help fund my treatment. Every penny will count and it will help us out by getting us a step closer to receiving my treatment. The afternoon tea event itself hasn’t changed at all, it will still go ahead on the 30th August, entry is still £5 (entitling you to a slice of cake, sandwiches, drinks and a thank you favour), there will still be a raffle, stall and plenty of fun games. We understand if you no longer want to attend the event (we honestly wont be offended) as it is personal choice of who/what you give to. but just to make it clear we are in no way shape or form are cancelling the event or forgetting the charity (‘forChrohns’) we are just postponing it to a later date (ooo two events where it is acceptable to stuff my face with cake). My views and determination still stand, i want to be able to raise money for ‘forCrohns’ as it is a very valuable charity. Support is still essential so they can spread awareness and fund vital research so my story has less chance of being repeated. For those that have already donated on the justgiving site, rest assured that the money will continue to go to ‘forCrohns’ and i will keep the page live until after the event in case you would still prefer to give to this charity. I would like to apologise for this last minute change, it wasnt a simple decision to make as it doesnt sit easy to have spoken so passionately about a cause, and then change it to a personal situation. But like i explained before; please don’t doubt me, my outlook and desire to hold a fundraiser for ‘forCrohns’ hasn’t changed, but time constraints mean we have to do it in this order. If you are still willing to support the cause, we thank you from the bottom of our hearts. I have set up my own funding page so you can donate online, the link is at the bottom of the post. Donations for the raffle, and any spare time you can dedicate to crafting masterpieces to sell on the stall will be very much appreciated (If you cant make the event raffle tickets are available to buy at £1 a strip, just get in contact with me). Most importantly CAKE, it is an afternoon tea party so its your chance to show off your culinary delights and bake a showstopper!