49. Chemo 6: part 2

D6

Today I have my Aunt and Uncle (Dick & Clare) arriving for a few days. Last time I saw them was around New Year, so when they walked in, the first thing they said was how much my swelling has gone down – hallelujah! When I was super swollen at Christmas, I looked unwell – you could tell there was something wrong – whereas now I just look a bit podgier than normal. But as I see myself in the mirror every day, I don’t really notice the change. If I refer back to the photos of when I was swollen, they just upset me, so I don’t really look at those. But I do look back at before I was sick, as that’s when I felt at my fittest. So all I really see is that I’m not like that now, but it gives me a goal to aim for again, which motivates me to get well again.

I don’t use my weight or size as a sign of progress. Before, about 20% of my weight was fat, so the majority was muscle. Now, it’s the other way around, so even if I get back to my original weight or size, I still won’t feel like ‘me’.  But I know that once chemo is done, my body won’t have to fight the meds, my immune system will rebuild, my red blood cells will come back to give me the energy to run/train, and my white blood cells will help to rebuild my muscle. So it’s all in the making…

In the meantime, I’m in the middle of the stint in which I usually flag, but I’m feeling a tiny bit better each day.  So if we carry on like this, we’re bang on track.

8 days to go…

D7

Awake at 8 again… Tried dozing for an hour or so, but lying in bed my body just started to ache more, so I gave in and got up. I’ve decided this is my body’s way of saying I’ve had my eight hours, I’m ready to get up. This has to be a good thing – before I was sick, I used to sleep through, seven or eight hours straight, every night. I’d fall asleep within minutes of my head hitting the pillow and rarely suffered from insomnia. So if I’m getting back towards that now, it’s a yay from me! In the past few days while I’ve felt really tired, I’ve dozed on the couch for 20 minutes here and there (I’m not a power-napper, so this is unheard of for me) but I didn’t do that yesterday and I haven’t done it today either, so again, that’s to to be a good thing.

Over breakfast, Dick & Clare and I had a very productive discussion about pancakes. Given that we’re in the land of pancakes, we decided that the Bakery down the road should be explored, so we set off for a wander and conveniently ended up there around lunch time. A classic ham & cheese, a sweet French and a cheeky caprese later, we realised that more tea was in order (perhaps influenced by the volume of pancake prohibiting our ability to move for at least an hour!) Eventually we wandered home, via a delightful boutique in the Jordaan, an Aladdin’s cave of weird and wonderful treasures (into which Dick disappeared without warning – Clare and I were around the corner before we realised he wasn’t with us, although being a Wallin, it was obvious which shop he’d wandered into…), a family selfie outside Albert Heijn for Dad 😉 and we made it home. Nearly 6000 steps for me today – getting back up to normal – boom!

End of week one, we’re doing good!

D8

Dick & Clare’s last day today. I woke up feeling pretty good again, so we decided to go out for lunch. Whether or not you believe in the placebo affect, I’ve certainly found momentum from thinking positively and getting good news, it really does make a difference. When people come to stay, I pick up a bit and it encourages me to do stuff (rather than sit on the couch and watch tv); when I get good news from the docs or Fysio team, I feel happier, I sleep better, I heal quicker and I see progress.

So we hit Cafe George – a favourite – and enjoyed a lovely lunch, a cheeky glass of wine and a stroll through the canal belt. By the time we got home, I’d clocked-up over 9,000 steps – a huge jump from not leaving the house less that a week ago!

We’re nearly there! 6 days to go…

D9

Thanks to the noise from the chaps renovating the flat above, it was another early start. But it was actually good to be up and about early, as I had an appointment with my Nutritionalist, Analise.

I started seeing my Nutritionalist in January, as I was concerned that whilst I wanted to keep up my strength during chemo, I was also overweight and didn’t want to stay that way. It’s easy for people to say “right now, that’s not your main concern” or “so what if you want to eat cake and chocolate? Right now, you can…” and I could, if I wanted to keep getting bigger and feel like Waynetta Slob (see below, if you’re millennial or younger). 

But in damage limitation mode, I want to keep the kilos under control until I can train again, then I can eat what I like (and work it off later!) So my Nutritionalist has helped me understand, measure and track what I’m eating, based on what my body needs during chemo.

After today’s session, she said my weight is now back in the ‘normal’ bracket and, as soon as chemo finishes, I can manage my own diet around my treatment, training and lifestyle – no more meetings required.

After seeing her, I went straight in to see my Fysio, Mathilde. I started seeing her in December, as I suspected the swelling in my arm was not just down to the steroids, but more likely to be Lymphedema. Since then, I’ve seen her every week and felt like my recovery just stepped up a gear. We cover lymphatic drainage, digestive massage, and internal/external rotation of my arm, and she’s helped me go from feeling post-op fragile, to walking without aids and raring to run.

Today, she said I’d made huge progress and, unless I needed her, we don’t need to make a new appointment – just call her if I feel stiff or want to check in. She’s referred me on to her colleague, an Onco Fysio based at the local leisure centre – an actual GYM! It sounds naff, as I could just go to a gym at any time. But here, I’ll have someone qualified standing beside me, who understand the impact of oncology on fitness (not just lifestyle). She will assess where my joints are weak or my flexibility limited, and in the context of my treatment plan, she’ll help me understand where to focus and how to build back my strength, so I can take the next steps in recovery and go from walking with confidence to running and training.

So today feels like another milestone, and I’m super excited about going to the gym on Tuesday! 5 days to go…

D10

Feeling better again, when I woke up this morning, I thought I’d take a trip into the office to say Hi and grab a quick coffee with whoever was in. A few text messages later and I was on the train.

While I’ve been off, the office has been refurbished and is looking really good, so I was super curious to explore and see where my desk has moved to. When I walked into reception, I was a little worried whether I’d be recognised (our office spans three floors, and I didn’t always come in on the same floor as reception). I was only there for four months before I got sick, I’ve been off for the last eight months and I know I look different to how I did back then. But I got a warm welcome when they saw me walk in, and as the President walked in right behind me, I got a huge smile and a big hug 🙂 My ‘exploring’ of the new office took slightly longer, as around every corner I was greeted by smiles, hugs and colleagues wanting to know how I’m doing. By the time I got to my desk I needed a coffee! I sat down… and left around three hours later! It just felt great to be back, heaps of people came over to say hi – some old faces and some new people who knew who I was and wanted to come and introduce themselves. The guy who’s covering my role while I’m off had a call with an agency while I was there, so I joined him for that and actually felt like I was working again. I was conscious of my tendency to want to pick things up and run with them, but also very aware that James is covering my role right now, so things are his to drive. So rather than get too involved, I just asked questions (to keep my knowledge up), shared insight where it added value, and just listened for the rest of the call. But it felt so good to be part of things, using my noodle and being productive again, even if only for a few hours.

As the sun passed over the yardarm, whispers of drinks began to surface, and as the bar is on the way out, it was sadly unavoidable 😉 But being there for Friday drinks again was great, and by the time I got home, I had (another) huge grin on my face.

I was asked a few times whether I was ‘back’, but whilst the temptation was there to say ‘yes!’ I did point out that this was just a visit to keep in touch, and that I was looking forward to being back in a few months’ time.

In the meantime, focus stays on finishing chemo… 4 days to go!

Screenshot 2019-03-16 at 17.36.47
Update on the spreadsheet, showing the expected vs actual side effects.

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