What a difference a day can make…

And what a difference the sun can make.

And today it shone bravely down, daring to dry out the sodden lawns, reinvigorate the flowers, foxes and squirrels, and of course…me!

And today I ventured bravely out, spurred on by yesterday’s success. And it appears to have strengthened me. No pauses walking down the hill, no falters on the stairs (though I did manage to avoid the upstairs ones).

Caught myself smiling as I made my way out of the tube. Hey! That’s more like me!

Sure, half a day of work tired me out but hey. Doesn’t matter!

Onwards and upwards, my friends.

Venturing out…

So I was all set to head into work today – I’d built up to it, mentally prepared myself, rested (not that it makes a difference, my exhaustion isn’t linked at all to how much sleep I’ve had or how much I’ve rested, but hey! Maybe it helps a bit). Then as I was all ready to leave, London decided to pull out the biggest downpour I’ve seen in a long time. Well played, London. I should just stay in bed? Ok!!

But no. Determined, I waited until it eased off a little and then set off down the hill to the tube station. I had to take it very slowly and occasionally stop to catch my breath and calm my racing heart. In the rain. Yes it was windy also, my umbrella was only partially effective.

With every step, it felt like my feet were disconnecting themselves from the rest of me – the neuropathy sends these weird shudders through my feet, which makes it feel like they remove themselves and travel further forward than my heels do. But I finally made it to the tube station. I had avoided the tube for ages, and suddenly I remembered why. My legs almost give out on me when I walk down stairs, my knees just buckle. So I have to hold on and take it slow.

I had successfully avoided peak hour by venturing in around midday. Coming up stairs, I have to take a few at a time, then rest. This would not have worked during peak hour. It hardly worked at midday.

By the time I resurfaced, I had pretty much used up all the energy I had and I was feeling drained when I got to work. I collapsed in my chair, puffing and needing a nap.

But then guess what happened? After having a sit and a rest for a bit, I actually started feeling ok. And in fact I ended up lasting for about 5 1/2 hours and only really left because I wanted to avoid the tube rush home (Which I failed at anyway).

But I think my main take home message from this is that physically moving does take it out of me but it turns out I could manage a second wind today! Or at least recover from that bout of excessive exhaustion. So we’ll try again tomorrow!

I really need to get one of those badges from TFL that says ‘give me a seat’ or whatever. My friend Shiri quickly made me one in the seconds before I left work today but it fell off before I got to the tube! So I stood all the way home.


Self-injections, you don’t scare me no more!

Guess what?

I did my injection this morning LIKE AN ABSOLUTE BOSS!!!

Katrina, if you are reading this, you are my hero, your tips were an absolute lifesaver!!!

So when they told me how to do my injections initially, they just sort of demonstrated it with the needle, without actually doing it. They told me to hold it away from my body and plunge it in like a dart. This gave me so much anxiety – what if I got the angle wrong? What if I stabbed it accidentally into my finger which was holding the skin pinched? And getting the courage to plunge a needle viciously into your stomach is bloody scary. So I did 18 of them at the beginning, but after that, I couldn’t take it any more and had a massive freak out about it. Thankfully I had someone to step in and do it for me. But even then I couldn’t look at the needle going in… I’m not a fan.

Fast forward to now, and it’s up to me to do it myself. Which you know, I’m ok with because I am super independent and don’t like to rely on anyone. But there was still that absolute fear. I didn’t know how I would overcome that. The thought of poising it over my skin, getting ready to plunge it in… My heart is racing just thinking about it.

Enter my fellow sarcoma friend Katrina, who I was so lucky to run into when I was in Ambulatory Care last week, and who I happened to whine about the injections to. She’s a smart girl. None of this plunging stuff, just pinch your skin with one hand, place the needle above your skin where you want it to go in, distract yourself – look at the tv, breathe out, calmly push the needle in, push the liquid down, remove.

This technique is revolutionary. I was a little scared at first, but without looking at the needle, and without having to plunge it in from great height, it made ALL THE DIFFERENCE.

Sorry all for a potentially boring post about self-injection techniques. Maybe this information will help someone else out one day!

But I am feeling EMPOWERED. The sun is shining, it looks beautiful outside my window. My toe hurts because I managed to smash it on a table shortly after doing my injection. But hey, ONE OUT OF FOURTEEN DONE! I’ve got this!

The end of Cycle three… that means HALF WAY, PEOPLE!!!

Well as always on a Methotrexate week I had my blood test at midday and was waiting for the all important result to say I can actually get to go home today. It was a bit touch and go today, my levels on the previous days hadn’t been low enough. But my kidneys must have known and worked extra hard because I was all good by Friday! When I got the call I told the nurse I love her. She laughed. Always a pleasure, Naz.

But I am now home, and at the end of cycle three, which means half way through the chemo bit of this adventure! Wow! Can you believe it? I can’t. How has it gone this quickly?

I think it’s probably time I tried to explain a bit more clearly how this chemo goes. The grad student I met last week who is using me as a case study (oh, did I mention that already? Haha thanks Lukon, I love being a case study :D) set it out quite well which gave me an idea.


This will involve a table. I quite like a good table.

Each number underneath a chemo drug heading is a number of weeks, and where that is greater than one (i.e. methotrexate), everything going to plan I get the weekend at home. Each row is a cycle. Each week with a drug also gets assigned an a. b. or c. (Which I haven’t added, I couldn’t quite work out how to get that in). So for example, cycle 1 gets 1.a, 1.b, 1.c., cycle 2 gets 2.a, 2.b, 2.c., and so on, they go from left to right on the table. You can imagine they’re there. There is no break between 1.c and 2.a, other than (hopefully) the weekend. Halfway (hello! We there!) is at the end of Cycle 3c! Also, the best bit, from Cycle 4 on, Cisplatin (the meanest, grossest, yuckiest, nicknamed un-fondly by me as Vladimir Cisputin) goes bye-bye. Hence why the recovery week is shortened! SO ONLY ONE MORE WEEK OF CISPLATIN! Omg I hear the voices singing for me somewhere off in the distance. Maybe a little string quartet. Yeah, that’s nice.

Chemo sched

And don’t forget that when I’m in being treated, I am hooked up to some form of backpack, with or without various bumbags etc. at all hours of the day and night. They never stop pumping until I’m disconnected on the Thursday (for Cisplatin/Doxorubicin), or Friday (for Methotrexate weeks if I’m lucky and clear the chemo by Friday – might be getting harder to do so as I progress) and get to go home. Carrying around 3L of water every day is heavy! I’m sure you can kind of imagine some of the relief I get from being disconnected from that. And let’s not even start on the tablet alarms or the very constant bathroom trips.

Everything going according to plan hopefully the chemo bit will be over by March (but any thousands of factors can mess that up). Then we have surgery, which I know nothing about. I have no ideas about dates, extent, length of time in hospital, length of recovery, nor any idea of what happens. I’m guessing they cut out and reconstruct half of my jaw. So… As always lots of unknown. But I’m hoping by mid next year this will all be successfully becoming a memory and life will re-continue as it was supposed to.

And gee will we celebrate. Just you wait.

Call to action – hit me with your book recommendations!

Ok so Chemo brain is a thing. Even when I’m not too bad, I just have blank spots in my brain. I’ll be talking along fine and either my brain will substitute a word in that is entirely the wrong word, hell it might not even sound the same. Or I’ll just stop and no word will show up to the party. I was chatting with the pharmacist the other day (he is so cool by the way, I love my Monday morning sessions with him), and after we had been chatting food and restaurants for about 10 minutes I came out with the brain wave as I was leaving of ‘well I love food! All food recommendations are very much……’ and then I walked out. That was it. About 10 minutes after I left, I burst out with ‘appreciated!’ Useless. I guess he understood what I meant. He must be used to it!

I had a small win the other day with one of these moments though, and at the moment small wins can be found anywhere. 
I had the following conversation with myself.










I felt quite proud of myself. Couldn’t tell you why on earth I was so desperate to recall the last name of the man we have to thank for Bitter-sweet Symphony, but that honestly feels like such an achievement when the brain draws a blank and then you successfully command it. That is winning!!!

Anyway, the real point of this post is that I want to read all the books. Seemless segue, I know. Anyway I need lots of options because at the moment my moods are quite capricious. Sometimes I want to read things that are real. Learn something important, contemplate life (chemo brain just wrote ‘lunch’ instead of ‘life’ there. I caught it and fixed it. Am I hungry?), sometimes it wants something super trashy for some light reading, and at other times it wants some good escapism or fiction or a good thriller to get lost in. But I’m up for anything! So this is a call to action!! Please leave me your #1 book recommendation in the comments and a short blurb! If you can’t pick just one I’ll allow you to have a cheeky couple – hey, I’ve got time! But I’d like to know why you’re recommending it. So… justify yourself! 🙂

And thanks in advance!!!

Macmillan Support and Info Centre 

This morning I found myself in the Macmillan Support and Info centre. No one had told me it existed or anything about it. There is definitely a breakdown in communication between my team and me… I appear to not be told a lot of things. Maybe that’s normal, but I seem to be expected to know what to ask and who to ask it to in order to find anything out.But that’s another matter. And I always seem to get there in the end.

I had seen some signs around the Macmillan Centre about diet advice in the Support and Information Centre and thought ‘ooh that sounds interesting’. So once I finished my appointments I wandered in to see what it was all about.

That was when I stumbled across The Living Room. A comfortable looking little haven where people were sitting around and drinking tea, knitting, lazing, chatting, hanging out.

I wandered around probably looking a bit dazed and confused and had a quick scan over some of the info booklets that were on display when someone came up to me and said hi and asked if they could help with anything. Should I give her a shout out? Go on then – she introduced herself as Catrina. I think it’s ok to give some personal credit here!

I just sort of said I have cancer and I’m rather new to it all and interested in health and wellbeing and exercise etc. and I don’t really know what I’m here for but… hi!

From here a whole world opened up. She showed me information about the various workshops and groups and talks that they have at the centre, as well as alternative therapy options (Reiki? No thanks. But Massage or relaxation… Yes! Could definitely be good!)

I mean… I’m not struggling. Like… emotionally or mentally or whatever. I’m not desperate for help, I have an amazing support network and the whole getting cancer thing for me has just been a matter of ‘right, cool, let’s get on with it then’. I don’t have dark days or hard times (other than feeling physically terrible at times) – though I always add the caveat of ‘yet’. But knowing that there’s extra support and things going on and various ways to help me through this long slog… well it’s nice! Very nice. I want to get involved in anything and everything!

Catrina gave me loads of pamphlets and pointed out the Living Room and facilities, so I made a cup of tea while I read through my papers and waited for her to gather up a few more bits of information for me.

As an after thought she said ‘oh, I can see you’re going with bald fine, but are you interested in wigs?’ 

Well I’m interested in everything! She said she would see if the wig lady was in and free!

Turned out she was, and I met Nicola, the wig expert. We were immediately laughing and chatting and we both had pretty much the same idea about what wig would be best for me. We tried out a few and had some fun with a few different looks, but it was the one we had both thought of, and the first one we tried that I went with! Check me out, I look super Pulp Fiction. 

I’ll get some more photos later, but this will have to do for now! So I probably should have been referred earlier, but I guess I hadn’t specifically known to ask for it so it didn’t happen. Lucky for me I’m loving the bald and was happy without it for the big shave! Also lucky I stumbled upon the info centre! As an inpatient, I am entitled to one wig, and I am super happy with the one I got.

I went away armed and dangerous! Lots of extra knowledge and a sexy new look! Feeling on top of the world!

I am grateful to both Catrina and Nicola for their help today! It was lovely to meet them both!

Methotrexate tomorrow! Bring it!

Incidentals along the way

So ahead of getting my MRI, I had to rid myself of all metal in my body. So this meant getting my piercings out. Which was actually such a relief because it’s been years of not being able to sleep on either of my sides and I just don’t want to have to deal with that anymore (though I will miss them, piercings are cool).

So I went to the place I got them done originally, and he refused to take them out. He said he would change them for plastic, but wouldn’t take them out and to come back in 40 minutes. I said ‘fine’ and went and stood in the doorway of one of my favourite pubs in Camden and cried.

I couldn’t even begin to face the possibility of going through chemo without being able to sleep on my sides and having to uncomfortably soak them in salt water for 10 minutes twice a day.  My ears give me constant pain and I just couldn’t imagine having to deal with that.

The fantastic Charlie was good enough to suggest getting a second opinion, so we googled ‘best piercing studios in Camden’ and came across ‘Hell to Pay’ and went along.

They were happy to take my piercings out. Yeah, ok, so I now have gross lumps on my ears, she warned me of it, hopefully they’ll go away (one definitely will). But the relief I felt when they were out was immense.

The lady at ‘Hell to Pay’ also said that the jewellery that had been put in was too tight. Which is what I had thought when they put it in in the first place. Never going back to the other place!

So I am now filled with relief.

This definitely feels like a win!

Though my ear looks a bit gross and I’m soon not going to have any hair to cover it up with…. Oops.

Oh well.