The challenges that being home presented…

And so it was that two weeks and one day after the first of my major surgeries, I was allowed to go home.

And you know what? It was hard work. Really hard work. It was such a relief, and I was finally able to relax for the first time in 2 weeks, and it was amazing being in my own home. No more being woken up every few hours for observations. No more being poked every day with needles for blood tests. No more feeding tube. No more doctor visits… The list goes on.

But being home also meant no more morphine or sleeping tablets, and it also meant managing all of my thousands of other medications all by myself. Thankfully Dad stepped up and took over the role of Mr Medicine man.

The other big thing was that I now had to work out what to eat. The feeding tube really got to me, I hated it and I hated the way the feed made me feel so I was so glad it was gone. And I wanted to taste actual food! But this of course meant I was going to have to work really hard on fuelling my body enough for it to be able to keep healing itself.

I had no use of/access to my top lip which meant having anything with a spoon was pretty difficult – no way to scoop anything off the spoon. I could flip the spoon upside down but anything runny like yoghurt would fall off before I could get it in my mouth.

I could really only do drinkable food, like smoothies, juices and soup. Pureed food was just too thick and dry and difficult.

I had regressed to a baby. I was having liquid food, half of it ended up down my front, I couldn’t do anything for myself, I couldn’t sleep through the night, I even had a 0-2 year old toothbrush. But I could at least drink beer, thank goodness!

By the second day we started getting things under control. Smoothies for breakfast, Heinz tomato soup for lunch, Sainsburys soups for dinner. Snacks in between consisted of custard, yoghurt blended with milk (to make it thin enough to drink) and added milk powder to bulk up the goodness.

I also had supplement drinks that they gave me at the hospital to take home with me. ‘Ensure’ they were called. Chocolate and vanilla ones. The chocolate one tasted really good, like a milkshake. But it was so thick and almost greasy, not to mention ridiculously sweet. There was no way I could get through 3 of them a day. The vanilla one just tasted gross. Mum managed to get me to have half of one a day by blending the choc one with ice cream, milk and plain yoghurt, and the vanilla one with raspberries.

I knew once I got home I’d be able to manage my food fine (with mum’s help of course). I would have struggled in hospital if Deepti hadn’t let me leave that day. The logical next step for the nutritionists was to get me onto purée food, as that’s what is on the menu at the hospital. But that wouldn’t have worked for me at all. For one of the few meals I had there I ordered a pureed meal, with soup and yoghurt. All they brought me was the puree meal I couldn’t eat and left out the two parts I could. I would have started losing weight rapidly if I had stayed much longer. If we had waited for the nutritionists to assess me, I’m sure they wouldn’t have been happy. And I bet I would have gone home with a feeding tube I didn’t actually need. That would have slowed my progress for sure.

This bold move by Deepti, and her trust in me to manage this myself saved me. I would have dealt with going home with the feeding tube but it would have got me down and slowed my progress. Do I need to say it again? She is great. I appreciate her so much.

As it is, I have pretty much kept a stable weight since I left hospital, so I think we’ve been successful.

Well I was hoping to avoid hospital again… But here I am…

My Methotrexate levels are meant to be 20 but they’re currently 93…

Wow. That’s a bit crazy!!! So I’ve been admitted. To UCLH and not Whittington at least. And hopefully not for too long at all! And not in my own room because I’m essentially healthy otherwise!

Just not part of my plan. And I hope not a sign of the future, just yet another hangover from the horrors of the last couple of weeks. They’re just going to give me some Calcium Folinate via IV to hopefully knock that down to safe levels. Fingers crossed my body can do the rest on its own!

Mum and Dad have run across to the Cotton Rooms to make me some burritos 😁 yum! Thanks guys! And grab me my laptop and pyjamas.

The lady next to me has been on the phone since I got here and keeps saying ‘allo’ over and over again.

The lady diagonally across from me keeps falling forward and occasionally talking to herself. And kinda sounding like she’s dying from coughing stuff up.

Also there’s a door down the corridor that slams every few minutes.

My nurse Natalie is lovely but she’s almost done for the day.

So… It’s going to be an interesting night!

See what they all think of my alarms for my tablets at midnight and 6 am!!!

Shoulda given me a private room!

My good week and my HAIR SHAVING PARTY!!!

Once I started feeling better, I had a great week!

I had to pass up on going to my favourite festival (which involved camping in the middle of a forest, but I just wasn’t well enough), so Charlie and I stayed home for a well needed restful long weekend, but we sent Ange off to enjoy herself at the festival.

Ange was coming over to the UK for (amongst other things) her birthday. So when she got back from the festival I had made her a birth-week itinerary. It involved a French Restaurant, a local pub quiz, drinks at the Shard, dinner and drinks in Soho, bottomless brunch, bars and the best food market in the world.

On good weeks, chemo doesn’t have to even factor into your thoughts. Ok so it’s pretty much one good week in every 5, but still. That’s one week of normalcy, and that’s all it takes!

The whole week, my hair had been falling out. They say 3-4 weeks until it starts. They told me that because my chemo is so hectic, it would be 2-3. Well, after 1 week and 5 days I couldn’t run my fingers through my hair without tufts of it coming out. I was going to wash it one more time, but the shedding was too much too quick, so as well as getting thinner as the week progressed, it was also getting more greasy. Great.

By Saturday it was very thin. I went out hiding my bald patch with a super cute ribbon, but I knew it was my last day. We had a great day out for Ange’s birthday with the two of us and Charlie and Owen coming along too. The Gang!

I had got Charlie to get me some clippers earlier in the week in preparation and on Sunday morning I said ‘it’s time’. I messaged Ange in the other room and said ‘I’m cutting off all my hair’. She came running out.


First things first, I trimmed Ange’s hair. Years ago I got my ear pierced and we went out drinking after and I must have knocked it and it bled for hours. The next day Ange went in and gave blood. This time she agreed after a few drinks the night before to me giving her a hair cut too. So I took about 1cm off her hair before I did mine. Amazing. Solidarity! She doesn’t look too terrified at this point…

After Ange’s turn in the hot seat, I pulled as much of my hair out as I could and cut the rest short. Then Charlie started with the clippers, making it nice and short all over.

Then Ange took over and finished off and shaved it really short (she’d done this before so we labelled her the expert and she did the closing moves).

I was amazed at how much hair there was! Even though it had been falling out in swathes for a week. But finally it was finished! 

I thought I would be able to pull it off, but I didn’t realise I would look THIS GOOD! Haha I was obsessed. Skinhead!! So we went out to show it off, I wore my grungiest dress, big black clompy boots and leather jacket. 

This was all so much fun. I owned the hair shaving. I was surprised when I saw myself how much I still looked like me. I would have thought my personal identity was more linked to my hair, but it’s not. I still felt like me entirely. I suppose I used to change my hair regularly anyway – colours, styles, lengths. I know it grows back, I’ve never been too bothered by it changing.

I love it. My badge of honour! And it was great to have some of my closest people right there with me to make it fun. I wasn’t scared, I wasn’t bothered, I just wanted to get it done. I also put it all on my Instagram story and got to share it with a whole lot more people too which was super fun!!!

Bring on the next part of the adventure!

Nice moments from the first week of chemo

Well before I go on and talk about my recovery and the two weeks between chemo, there are a few little bits and pieces to throw in from the first week.

First story: the bath

My room at the Cotton Rooms had a bath. Anyone who knows me knows that I LOVE baths. But I’m not allowed to submerge my left arm in water, and I’m connected to three bags of chemo at all times (and the cords are not very long). This posed me with a problem that needed to be solved. How would I have a bath while on chemo?

I asked for a hook from reception which I could use to hang them, but the height was wrong and the hook would have to go on the wrong side to my chemo arm. No that just wouldn’t work.

I noticed that there was a clothes line above the bath that could be pulled across the length of the tub, and it was on the correct side for my chemo arm. So I pulled it across and hooked my chemo bags into it. Turns out the height was perfect!! So bath time was a success, with my bags of chemo hanging precariously above my head and my water bag (Which has a longer cable) safely on the floor. This felt like a win. I was in back pain by the end with an inflamed chest cavity (Which is a feeling I know well unfortunately – costochondritis) but thankfully it didn’t last long.

I won this round.

Second story: Flowers

This is a short story but a nice one. I was sitting in my room one of the days feeling sorry for myself and someone came and knocked on my door. I frowned to myself and grumbled about why I was being disturbed. Surely I put the do not disturb sign on the door? So I picked up all my things and got to the door and opened it, and there was a man standing there with a big box. I smiled immediately when I saw on the outside of the box what it was. Flowers!!! My lovely colleagues were kind enough to send me flowers and chocolates!!! They were some of the most lovely flowers I’ve seen (purple!! My fave!!) and the chocolates were incredible. It was such a nice surprise. On my final day in the Cotton Rooms I was lucky enough to be sent an Amazon voucher also, which leads me to my next ‘story’…

Third story: My Kindle

I guess this isn’t really a story… But I’ll go with it anyway. I always thought I didn’t want a kindle but figured I would eventually get one, and what better time when I’m going to have a lot of time for reading. But I put it off and put it off. Do I really need one? But I like actual books! But Charlie was lovely enough to buy me a Kindle and from the second I held it I was obsessed. Now I have this amazing portable little thing with an awesome elephant case with loads of books on it! So I can change books whenever I want and don’t have to lug them around. And I love reading on it too. Seriously obsessed.

I think that’s all for now! Three nice little stories from my first week of chemo.