Aaaaaaand we’re back in hospital.

Well, a lot has happened in the last week.

I finished my last lot of Cisplatin, my parents turned up from Australia, I turned 30, and now I’ve found myself back in hospital (hopefully for the last time).

I have found a whole lot of new side effects like nosebleeds, being absolutely exhausted that I can hardly walk or stand up (I’d never quite felt it like this before), numb feet (hoping this sorts itself out sooner rather than later…)

I had a lovely birthday, although it was about the worst I’ve felt on any day yet. Charlie and our other lovely housemate Owen took the day off with me, and mum cooked us all a nice roast. Of course I couldn’t really eat any of it, but it was nice. I got some lovely presents and so many lovely bunches of flowers that just kept turning up throughout the day! I felt very special! We ate cake (for some reason I could eat that!) Then we watched The Commitments, a brilliant movie that we’ve been meaning to watch together for ages.

All in all a successful day. Not the 30th I had planned, but a good one considering.

The following days I just got worse, as expected, I could do little other than send everyone away and lie in bed.

Then the inevitable temperature and trip to A&E, at exactly the same time as the last cycle. This time I waited in A&E for 13 hours until I was finally admitted at about 3am into the last room they had, in the 24-hour assessment part of A&E, the CDU (Critical Decision Unit). Love a good acronym. I held out not too badly for most of the day, feeling ok, entertaining myself with my book.

First they managed to throw out my bloods instead of processing them, so that held things up for a while (how is that even possible?). At least I had a good looking, awesome Doctor to distract me (Hi Andy, it was nice to meet you).

It turns out my neutrophils were at 0.0. They’re the ones that fight infection. Also I had low sodium, which can cause seizures and all sorts of things. I had a couple of the ICU (Intensive Care Unit) team come in to see me – usually they would want to admit me and do something drastic but they were all shocked I looked fine and decided I didn’t need to go into the ICU so they gave me my antibiotics and fluids and eventually at around 3am they found me a room and I tried to grab a couple of hours of sleep. I was exhausted.

So there’s the first scintillating chapter of this part of the adventure, more to come.

Some of the people I have met so far – I am presuming this is only the first instalment of such a post.

I think it goes without saying that all of these people are my friends. Everyone I meet obviously is.

The girl in her mid to late 20s who just had everything cancer and chemo thrown at her and came to ask me about losing my hair and how quickly it happened and what she should do. I told her she would look amazing and to enjoy it. I explained that the head shaving party with your nearest and dearest is fun and liberating and whatever she did, to make sure she had fun and owned it, regardless. She left smiling. I haven’t seen her again since. But I know she’ll be fine. Her attitude was great.

The lady who was having chemo and then stem cells put in a couple of days later. Her chemo went for 30mins on the day we were both in Ambicare, and she had to chain-eat ice lollies which she hated, so she complained and I kept telling her how jealous I was. We became friends after that. I was excited to see her the next day when the fire alarm went off. I liked her. For getting her stem cells in two days later she had to drink loads of water and she came and found me in the Cotton Rooms at breakfast and complained that she didn’t want to drink any more water. But she might not be able to get the stem cells if she didn’t. so I made her promise she would go and drink a whole lot more before she went over. I didn’t get to see her again but I hope she won. Since then I have seen many people have to chain-eat ice lollies in the same way and none of them like it. I did hear one person once had about 12 in one go though so obviously some people don’t mind it.

The lady who must have been about to start chemo because she was about to have her PICC line put in (I later found she was actually re-starting chemo). She had some time to kill before the appointment so she was popping out to grab a coffee and asked if I wanted anything. I said thanks, but I would probably pop out on my own later. I saw her again later, me with coffee in hand, and held it up to her asking if she had enjoyed hers. She said she had, and came and asked me advice for keeping my bald head warm. It is always fun to chat about these things with people and I am always happy to give some advice where I can.

The man I met in the Cotton Cove, the common room at the Cotton Rooms. He was maybe in his 50s, and he was so lovely and a lot of fun. I am glad to have met him and his son. Very good people. It turns out he has myeloma (I think that’s what it was called) – one of those scary blood and bone ones. It’s in his blood and spine. Turns out he’d had it for about a year before anyone knew. He had a sore back and apparently it was due to having multiple spinal fractures, which were pushing down on the same part of his spine. Wow. How do you go about life not knowing you have multiple spinal fractures! He will never be cured, but he will be in remission for any amount of time, maybe many years. But then he will probably need treatment again. His treatment is a lot shorter than mine at least. Of course I am never happy due to someone else’s misfortunes in the slightest, but it’s often quite easy to think how good I’ve got it when I have these people around me who have quite some misfortune. With the exception of my extensive chemo (not many people beat me on that), the majority of people are doing the cancer thing a lot rougher than me. Power to you all. I’m here for you and with you.

The guy who I met in the kitchen/dining room with his mum. She was helping him make some food. He was worrying about the next week when he would be on his own. I said I would be around to help him. I saw him again the next week and he said he had been hoping to see me. We chatted and laughed. It turns out he’d had a really bad motorbike accident and was in for 3 weeks straight having intensive physio. Not everyone in the Cotton Rooms is part of the cancer crew. He was lovely. This is his third week so I hope I see him one more time.

Monday thoughts and childhood memories

I grew up playing music, singing, performing. Weekends were often spent driving to various performances or competitions around Sydney. Eisteddfod weekend was always hectic, sometimes you’d be lucky and at least have the singing and piano ones on different weekends but sometimes they overlapped.

But even without the overlap it was still pretty hectic. In a weekend I could have 4 different singing ones and some would need costumes.

One year I had to be little Cosette from Les Mis (‘there is a castle on a cloud’) dressed in her almost homeless street urchin dress. Then turn around the next day and become Pocahontas (‘can you paint with all the colours of the wind’), the powerful Indian princess with her authentic native American dress.

Wow.

So for this memorable outfit change, mum made basically a reversible calico sac. One one side it looked like a Tunic which we grubbed up and made look like the little Cosette. Then once that was over, we went home and turned it inside out. She left big seams hidden on the inside of Cosette dress so we could cut and fray it for Pocahontas. Painted up with earthy browns and some reds and blues and teemed with a head tie with some feathers attached that we found around the streets…

Both looked amazing and so professional. She has a lot of talents my mum, one is just knowing what the task is, conceptualising it, and carrying it out well no matter what skill is needed. She can pretty much do anything. She’s very versatile and damn good.

Anyway, I think there’s a point to this. There must be an analogy hidden in here somewhere. Always be adaptable and flexible like that dress (or my mum for that matter). My goodness some crazy things happen in life. We’ve all seen it, we’ll all see a lot more of it. And you’re going to be far better off if you’re already mentally prepared to just take any new advancement and work out how you’ll make it work for you. Yeah it might seem pretty bad at the time. But you get that brain working and thinking and you turn whatever bad thing you’ve got into something that you can make good. Try it. Try varying your Mindset when something happens that you don’t like. Change isn’t always bad, even if it often seems it at first (like my pharmacist leaving, right? I’ve been told his replacement is taller. He’d better be awesome).

As Victor Frankl wrote in his book ‘Man’s search for Meaning’, ‘The last of the human freedoms is to choose ones attitude in any given set of circumstances.’

So hold onto that. It’s your right. And make the right choice.

Much love.

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.

Ok.

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.

Trex week wrap up

This week I met with a 4th year medical student who needed someone to use for a case study. You mean I can be the centre of attention and talk about myself? Oh ok! He was nice. We had fun. I’ll see him again sometime.

On Thursday I stopped in to grab my lunch at the UCLH café and came across a lovely couple of older guys also having lunch. I had to poke in at the table with them because it was so busy and I’m a bit tricky, needing two chairs (one for my water backpack). But they moved and shuffled around to make room for me. I eavesdropped on their conversation and one of them had some sort of cancer and it sounded like he was going to be starting chemo. I’m with you brother. Maybe I’ll see you around soon. When I got up to leave they insisted on taking my plate and scraping it and putting it away for me. Thanks guys. Things like this, as always, make my day. What lovely people I keep coming across.

Then I walked through the main UCLH foyer and there was a baroque quartet playing. I always enjoy the mid week entertainment they have there.

So glad it’s the weekend. MRI on Sunday (I don’t seem to be able to keep away from the place!), but I’ll try to slot in a few fun things too.

Transfusion Friday

Thank you to the person who parted with their blood and gave it to me. I didn’t want your blood but it turns out this time I needed it. Please don’t give me any nasties. I promise I’ll cherish it and use it wisely.

It’s a bit silly really isn’t it. I am ok with all these mental chemicals going into my veins but the idea of a blood transfusion scares me.

I mean it doesn’t really scare me so much… It does make me a little uneasy but it’s more just that last time they said I was close to needing a transfusion and I declined and managed to easily get my haemoglobin levels back up myself. I don’t want be to using a transfusion as a first line treatment. That blood can go to someone else.

But this time I tried and it’s not going up. I need the transfusion. Ok fine.

So thank you, whoever it was who shared some of their blood with me. I really do appreciate it.

I can guarantee that so far since it’s been going in, I have sung along to the following songs playing on the radio:

Billy Joel – My Life

Annie Lennox – No More I Love Yous

Seal – Kiss from a Rose

The Carpenters – Close to you

I hope the blood is happy with the songs, but if it is not please don’t blame me, blood – it’s just the radio. I promise to give you a good life resplendent in only good music. I welcome you with open… Veins I guess.

Some good news to share!! And some news that makes Jen grumpy…

Well. I am happy to share with you the good news I received yesterday… From the results of my PET scan, they were able to see that the cancer is responding to the chemo! Still waiting for the MRI to get the complete picture, but  it won’t tell a different story. This means chemo is working and we can keep going as planned. The rapidly dividing cells are starting to… well… not, I guess! Wow. Can I hear a collective ‘wooooo’ please? Thanks! Up until now we had no idea if any of it was being successful, so this is great.

Also my little heart is going well so we can keep throwing the chemo at it. Just need to check my ears and soon my kidneys. Lots of monitoring.

Charlie was lovely and ducked out of work at lunchtime yesterday to come with me to my appointment just in case I needed moral support if the news was bad, but turns out it was just nice to have someone there to high-five and ‘yay’ with. My Oncologist had a yay with us too. He’s fun.

Four hours of my yellow friend today. Trex Tuesdays.

Oh, along with the good news yesterday, I got some terrible news.

My Pharmacist Joe told me he’s leaving me. I said no, and that I would not accept it. He’s my favourite part of Mondays. I look forward to seeing him. We talk about food and restaurants and just catch up about life. He thought telling me that he was going to visit Australia on the way to moving out of London would make me happy. I just glared at him and told him leaving is not allowed and that I hate this story. I will see him twice more before he goes. NOT OK JOE. I didn’t approve this. I didn’t sign your permission slip. No no no. Fix it. He tried to reassure me by saying that he would do a proper handover to the new person. I don’t think he gets it. Joe, you’re in trouble. You’re in my bad books. Grumble grumble.