Having had a great couple of days with friends in London and Oxford, it’s back to reality tomorrow, as we go into chemo 4.

As author and editor, it’d be easy for me to pick and choose when I record videos and publish updates, to always present a positive picture, perhaps even an unbalanced one. But tonight I’ve decided to share the reality of me NOT always bring Little Miss Positive! 

I’m human, and despite the general sense of being super strong and fighting this hard, the individually slight side effects, when added together, do get to me sometimes. And despite having done it three times already and walked out of hospital feeling fine, I do feel anxious about what I’m about to do, as you never really know how your body’s going react, being that bit weaker each time. 

So tonight’s video isn’t a ‘woop woop nearly there!’ or a ‘let’s do this’ rally cry. Instead, it’s a moan from a slightly anxious chemo patient, who is sure she’ll feel much better this time next week!

#onemoretime

#nearlythere

#staystrong

#lastAC

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I’m super excited (and slightly exhausted at the thought) that on Monday, I’ll be having the fourth (and last) of my AC chemo sessions!

This morning, Monique (my nurse) gave the green light to go ahead, based on the assumption that my bloods come back ok. I had my blood test just before I saw her, and by the time I got to her office, some of the results were already back. The most important one is my immune system, which apparently needs to be a minimum reading of 1.0 to go ahead, and mine is currently 2.4 so we’re good on that one! The other results (white cell count, red cells, platelets etc) are still to come back, but based on how I appeared this morning, she’s hopeful these will also be fine. 

(UPDATE: stats now in, see below!)

This stuff really interests me; partly because I just like numbers, but also because it’s a metric – an actual number or scale which I can use to measure how well I am. It’s hard to compare one day or week or cycle to the next, because there are so many variables in the mix… how much water I’ve drunk, how much sleep I’ve had, how much exercise I’ve done, what food I’ve eaten, how often I’ve been to work etc. So having a number will let me track my progress.

Monique also checked the lump again this morning, and again found it hard to determine the edges. This is no change from last time, but she did think it felt softer, which is apparently a good thing! We also now have a date for my next MRI (Jan 4th) so at that point we’ll get a real sense of what impact the first round of chemo has had.

I also got more info on the second round of chemo that kicks off on Jan 2nd. There are different side effects with this one, generally less impactful (certainly in terms of sickness) but there’s one main difference, which is that the new drugs will damage my nerve endings. This means it’s likely I’ll loose feeling in my toes and fingertips. We won’t know to what extent this will affect me until we get into it, but the feeling can come back in time, so I’m hopeful it’s just another speed bump, and not something which will stay long term.

Finally (and for me, a biggie!) I asked about surgery. This is likely to come 4-6 weeks after the second round of chemo finishes. So assuming we have no holdups, this will be towards the end of April. You know what’s coming…! Given how good I felt after my US trip, and how it helped me kick off my treatment as strong as possible… (insert further justification here if required!) …I asked if I’m able to go away on holiday between chemo and surgery. Apparently this is something a lot of patients do, for the exact reasons I gave. So yes, that bikini will be coming out again before surgery! Yes, I may squeeze in an F1 race early in the season! And yes, I am VERY happy about all of the above!

So bring on chemo 4 on Monday, and throw at me whatever you have left – you can wipe me out for a day or keep me in bed all week, I don’t care! This is your last hit, and I am still standing! So do your worst, because I WILL beat you again, and will bounce back to enjoy Christmas and start planning my next trip!

#BoxyOut

OK, so this post has been a long time coming, but I’m finally getting to the one about the hair. I think most people reading this know that losing my hair has been one of the toughest parts of this for me. But losing my hair actually hasn’t hit me the way I expected it to.

First there was the cut – having my long hair cut short was a big deal for me, but I actually had a blast doing it, and really liked having short hair! People said my neck looked longer, it certainly took less washing and styling, and aside from looking like Boris Johnson when out running, I think I generally pulled it off pretty well? And hey, no more split ends – winner!

But then it started to fall out – fast. And to be honest, this has been the biggie for me in chemo week 2. It’s all been about the hair.

It’s flipping everywhere

On Monday, I had my second chemo session. And as before, I went for a run in the morning to start the day strong. By the time I got back, I looked like Boris with crazy blondness flying everywhere, but I quite liked that – a quick shower and a two-minute blow dry, and the hair looked good as new!

But this week’s chemo was tougher than last week’s. By Monday night I felt tired, and Tuesday was only marginally better. Wednesday I felt slightly stronger, but my head felt tender and every time I put my hand through the Boris mop, it came out in clumps. At this point, I didn’t actually want to wash it – perhaps for fear of it all falling out in the shower, perhaps because the thought of brushing it was painful, or perhaps it was just the effort of having to do anything with it? But by Thursday I figured I had to wash it… and the result was shocking!

After that, if just got worse; wherever I looked there was hair – on my shoulders, on my furniture, on the floor, on my pillow, in the bathroom, in my food… this was getting ridiculous. My scalp was also continuing to hurt, and the whole thing was driving me nuts. My hair was falling out, I’d gone beyond being able to style it out, and my apartment looked like a gorilla’s barber shop!

So I decided to take control; rather than letting the cancer (or rather the chemo) take my hair (and my fighting spirit), I decided to get there first. So I shaved it off. It’s going to go anyway, and at least this way I get to have a thin layer on top while I get used to being “shawn the sheep”!

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Better? Worse?

Well I wouldn’t quite say it’s better – there are still drawbacks. Because my hair is still falling out, what (little) is left is still painful as the hair follicles struggle to hold it. This means that every time I move my head on my pillow, my scalp hurts. So I didn’t get much sleep last night. But that’s just physical. The hair will eventually all fall out, my scalp with be completely bald, then the hair will start to grow back. And I’ll have all kinds of fun trying styles I never dared to think of before!

How I feel about me

The thing is, it’s not about the hair itself. It’s about how it makes me feel about me. If I’m not thinking about it (like right now, I’m sitting in a café in Amsterdam and not even thinking about it) it’s fine. But when I think about how I’ll feel in specific situations, that’s the hard bit.

Take last night, for instance. I went out for dinner with some friends. I tried a few outfits but didn’t feel comfortable – all I saw in the mirror was a thug. A skinhead. Despite many lovely messages from people saying it looked great, and how my head was a great shape, it made no difference because it didn’t change how I saw myself. I tried a headscarf but my scalp felt too tender. I tried a hat but my head felt too itchy. In the end, I opted to brave it with nothing. Just go plain and simple – a black polo-neck, jeans and bare the hair for all to see.

I was obviously conscious of it at first, but as soon as we sat down for dinner, Rob just leant across and whispered “you look awesome” and it immediately put me at ease. I didn’t even think about it again until I went to the bathroom later (and got a shock looking in the mirror!) Rob – you’re a star, a small comment but perfectly timed without prompt, it made a world of difference. xx

There are other scenarios which are on my mind, obviously. But I’m just going to take them as they come. At the end of the day, I’m still me – I’m still a crazy, adventurous, happy person, who isn’t going to let this beat her. There will be times where I take EVEN LONGER to decide what to wear because I don’t feel comfortable… there’ll be times where I won’t want to go OUT out, even if really I do, but I don’t feel comfortable about me, so I’ll stay in… and there’ll be times where I sound ungrateful for kind comments about how I don’t look any different, or having no hair doesn’t matter – I AM grateful, I DO want to go out, and I WILL decide what to wear (eventually!) – just bear with me for a bit and I’ll get there 🙂

 

#BoxyOut