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Day 100

Guess who's back? 5am blog club!


And this one is a special one... Today marks 100 days since I started chemotherapy. It feels simultaneously like the click of my fingers and 1000 days ago that I walked in to the Combined Day Unit having absolutely no idea what to expect; the instantaneous taste in my mouth, the red wee from one of the drugs (only for a few hours, don’t worry!), feeling like a zombie extra from the Walking Dead for 48 hours and the now infamous 4am steroid club of course. It has and continues to be a ride!


My hair has stabilised but my eyebrows are gradually (quickly!) disappearing which is an odd experience. My facial hair is even more patchy than usual - blonde on my face, dark and much thicker on my neck. Bizarre. I feel tired and drawn out but the light at the end of the tunnel gets that bit bigger each day.


100 days means eight rounds are ticked off leaving only four to go. That in itself is quite the thing to get my head round. But the countdown is truly on - 54 days to go. Which means about 64 days to go until I can get to work on the curly perm and handlebar moustache. 




I’ve had quite a humbling week or two. In a bid to up the awareness of both my story and Lymphoma on the whole, I posted for the first time in years on LinkedIn. Because it has quite a clever algorithm, the blog has spread far and wide and I had three people who I didn’t know message me who have gone/going through very similar experiences to me. Quite like the nurse from Round Seven, it is very special to hear from people who can completely relate to the symptoms, the treatment, the process. One is about six weeks behind me and just had their PET scan to see how the treatment is going - I wish them all the luck in the world for good news next week. 


The other touching element since the last blog is the reaction to our black tie charity fundraising idea - wow! This has gone from pipe dream to a very exciting reality and given us something to really focus on. 


The plan is this - on Saturday 10th September we have booked the East Midland Conference Centre which is a glamorous venue located on the University of Nottingham campus (NG7 2RJ). There will be drinks on arrival and a three course meal too, whilst we have also booked the band today which is very exciting! I’m looking in to a magician as well to go round the tables as they invariably blow my mind from past experience with their magical nonsense and who doesn’t want magical nonsense to add entertainment to their evening?


The venue has a De Vere hotel a stones throw away and we’ve got discounted rates on 50x rooms held till August for those travelling from further afield and plenty of other hotels nearby. As ever I’ve been blown away by the generosity and support of people, with so many both near and far who have indicated they’d like to come. I’m going to feel like a political candidate shaking hands and welcoming everyone in the room on the night - though I'm not sure we can stretch to calling it a work event though...


(The reality is everyone gets a hug on arrival with your beer/Prosecco - I might even put it on the ticket!)


I had initially posted initial details on Facebook as a Private event but it seems to get swallowed up in peoples notifications and very hard to find unless you see it straight away. So I’m going to restart it as a Public event over the weekend which will allow me to publicise it a lot more - apologies in advance for more LFG spam!


But the crux of it is this - you and yours are all invited. I am so excited to host you all (in a quite outrageous pink velvet dinner jacket no less) and not only raise as much money and awareness for Lymphoma Action as possible but also to celebrate beating the bastard. Also to thank you for every bit of support I’ve experienced over the last 100+ days, be it messages on social or texts, or meals on wheels, or actual meals in person, or deliveries of goodies and get well soon cards - each and every one means the world to me. 


So let’s all have a big sing and a dance on the 10th September yeh? It’s been too long!


Oh, and we have started collecting raffle prizes and will soon be reaching out to local businesses for auction donations and sponsorship for the night itself too. Please do let me know if you have any ideas at all for the night or connections we can make the most of to raise as much money as we can for Lymphoma Action!


I’ve got an amazing (not really amazing, but pretty good for me!) spreadsheet on the go to plan all this - it has five tabs AND formulas linking between the tabs. How do you like them apples?!


A few people have said it’s essentially a wedding without the marriage and yes, you’d be more or less correct - we can happily add ‘One More Step Along The World I Go’ and any other church bangers to the playlist. I might even allow ‘Jerusalem’ if the cricket is remotely better by then...


So yes, that’s the plan. I really hope you can make it. Please do save the date for now, I hope to update the plans for the night and confirm ticket details (an absolute minefield I’m sure you can imagine) over the next few days and really get the show on the road. 


Thank you all for your continued love and support - I couldn’t have done the last 100 days without it. 


54 to go! 


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