Hotel Churchill

Apologies for the leave of absence lately but as it turns out, this week has been even crazier than the last ones.

On Sunday after a lovely little trip with Sam to Stowe gardens, my cycling mates came round and I was treated to a ‘night in extravaganza’ – the Muppets movie on DVD complete with smoothies, brownies and ice cream. Unfortunately all good things come to an end and this was one ‘end’ and a half. Once the guests had left my temperature rocketed beyond 38 degrees and we had to pack ourselves off to the Churchill hospital.

On Monday I was horrified as I woke up to discover that I’d doubled in size with fluid again. This was only to get worse as the week went on, with a gain of 3kg of fluid every day until I was 10kg over my usual body weight. However, because my blood counts were so low (turns out the 1st dose of new chemo was a little too strong for me) and I was fighting an infection, getting all the beastly fluid drained off was out of the question until things improved. So it’s been a week of antibiotics, magnesium infusions, phosphate tablets, vitamin k injections…. all in a bid to try and get my system back into shape.

It turned out that the PICC line in my arm was the source of the infection so that got hoiked out – all well and good until it turned out that I needed more drips so we were back to playing ‘Naomi the human pin cushion’. On Thursday night I managed an all time record of 3 nurses and 1 doctor all trying their luck at finding a vein and I’m now notorious on the ward for being ‘the girl with the evil veins’.

Yesterday after an agonising wait of 8 hours, my wish for a ‘good and proper draining’ finally came true. In fact I’m still at it now – a good 3 or 4 litres of fluid have been ejected so far and still going strong. My stomach has gone down a lot but I still have an impressive pair of thunder thighs to deflate.

Unfortunately my yo-yo-ing temperature and some weird blood culture results mean I’m probably going to be in hospital until Tuesday when I’m due for my next chemo session. That said, I’m so happy to finally be returning to something- vaguely resembling my normal size (thanks to the drain), I don’t really mind that much. The care at the hospital is fantastic – I get 3 meals a day and regular tea & biscuit trolley visits, protein milkshakes twice a day, my own private room with ensuite. Granted the timetable is a little evil – blood tests at 6 am, breakfast at 7.30 and dinner at 5pm (I don’t think I’ve had dinner that early since I was a toddler) coupled with intravenous drips through the night, but I really can’t complain.

That said, the food options on offer can be somewhat amusing. Here for example are Tuesday’s menu options: Faggots & gravy; Pilchard salad; Corned Beef Hash; Cheese & Pickle sandwich; Tapioca Pudding; Strawberry Whip. They pop a little heart by the ‘healthy’ menu options and on this particular day only the tapioca pudding was bestowed with this honour. Ah well, fortunately I have super Sam to fill in the gaps and bring me some more palatable options.

Such has been my life for the past week, enlivened no end by the generosity once again of my family and friends. Thank you Anita, Emily, Clare, Claire, Polly and Tam for the fab ‘home cinema’ night. Thank you Stephanie, Jess, Emily, Anita, Polly, Isabel, Bryony, Colin, Aleksandra, Richard, Ann, Les and Tom for coming to visit me bearing gifts. Thank you Gareth and Isabel for welcoming Sam back for supper. And of course the biggest thanks of all go to Sam for being at my side and bedside through all of this madness.

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Being ‘strong’

Up until now, I had always associated being ‘strong’ principally with physical strength. Being a cyclist I have numerous friends that epitomise what I’d characterise as ‘being strong’ – Tamina and Claire G tearing up the fields in national road races and TTs, Emily battling her way through feats of endurance like the Magnificat, Sam and I pitting ourselves against adversity during the Transalps. But recent events have made me start to expand my perspective a little.

Hope you don’t mind me borrowing this from your blog Charlie

My dear friend Charlie, who is unlucky enough to be going through a similar experience as me – in her case breast cancer – is a case in point. Truly inspirational, she has tackled her own aliens head on with true fighting spirit. When she found out that I’d likely be losing my hair thanks to the latest chemo concotion her immediate reaction was to send me 3 beautiful LMNH cycling caps so funky I’m in no mood to wait for the hair to drop out to start flashing them!

Another thing I’ve learned is that true strength is being able to separate the physical from the emotional. Having had over 5 litres of fluid drained from my belly over the past week and 7 chemo sessions down, I’d be lying if I said I’ve been feeling anything but a shadow of my former self (if that isn’t an oxymoron bearing in mind my grossly distended form!). For someone who used to cast disdain over those that chose the lift over the stairs, it’s been quite humbling to count a slow shuffle to the village shop as an achievement. Much as I love it, getting on a bike has been totally out of the question. But the second the fluid started to go I could feel my mood instantly lift. This morning I managed to get my jeans on for the first time in 10 days and how awesome did that feel?! (Thanks to the 7 month ‘alien’ pregnancy belly, my attire of late has tended towards to the ‘slummy mummy’ look: Sportsdirect trackie bottoms and hoodies all the way, perfectly complimented by my clip on chemo bottle which my mate Nathalie pointed out probably looks worryingly like a whisky hipflask.)

 But hey, hopefully this particular chapter of my life will be short-lived, the new chemo will kick in and I can add ‘recognising my own body’ to my list of things to be thankful for. So go on cancer and chemo, throw what you can at me because I ain’t giving up yet.

I want to close with a quote from Charlie’s blog because it touched me so much. “Our best asset is inside and not even chemotherapy can burn it out of you.”

For better for worse, in sickness & in health

This edition is dedicated to my beloved, guardian angel, Sam.

Apologies for having been a bit slack on the blog front but it’s been a pretty crazy, torrid couple of weeks since my last entry. So if you’re expecting heart-lifting tales of epic cycle rides, diy disasters and walks in the wilderness I’m afraid you’ll be disappointed. We’ve had some bad news – my last scan showed my liver tumours have stopped responding to the chemo and started to grow again, possibly my bowel too but we’re not 100% sure at this stage.

As of last Friday I started on a new chemo concoction which will hopefully prove more effective. There will be 12 cycles of 2 weeks in total so basically 24 weeks more of treatment. I will in all likelihood lose my hair and no doubt experience all sorts of other weird and wonderful side effects. I’m taking a leaf out of my dear friend’s Charlie’s book and getting it cut short this week in preparation.

Never one to do things by halves, it seems my liver has decided to pack up completely, the resulting effect being a horror film-esque doubling of size overnight thanks to fluid retention of truly ridiculous proportions. Basically I’ve quite literally become 6 months ‘pregnant with alien’ in a couple of days, lost my ankles – quite literally, feet are so swollen you can’t make the bones out, not that I can really see them, masked as they are by the mountain of my enormous belly – and developed very stange shaped legs.

I’d be lying if we said all this is easy to bear. Another 5-6 months of being poisoned is not an attractive prospect and it’s hugely disappointing to hear I’ve started going backwards. But hopefully the new cocktail will do its stuff and I’ll have better news further down the line. My cancer is currently being tested to see if it has the right receptors to respond to a third drug in the chemo armoury and we have all our fingers and toes crossed that it will. Having an action plan does makes things easier, even if it does stretch ahead a bl**dy long way into the future.

I’m hugely indebted to Roberta who has moved heaven and earth to help me get me a fluid draining appointment tomorrow. Whilst it’s not a magic bullet, it’ll hopefully make me feel a bit more comfortable in the short term while I wait for the drugs to kick in.

In the meantime, guardian angel Sam is doing his best to make me as comfortable as possible, waiting on me hand and foot, giving me regular massages, coming to the hospital with me and generally doing all that he can to keep my pecker up. I really don’t know what I’d do without him, I can’t imagine what it must be like for people to face these things alone.

Thank you Sam and to everyone that has sent me such kind messages and gestures of support and encouragement – they really touch me and give me the strength to carry on.