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.

My good old friend, pain

So they put this cannula in my hand because they thought there miiiight be an infection in my PICC line (of course there isn’t, but you can’t blame them for trying to cover all bases).

Yeah, it hurt going in.

Yeah, it hurts all the time it is in, either just a dull ache, or a sharp sting. It’s worse when I move.

But, when they put the antibiotics through it, it. is. agonising.

It feels like they’re injecting me with acid that slowly moves up my arm and burns me from within. It hurts like hell.

The other weird thing is that it doesn’t always hurt when they do it. Just sometimes. Like… what?

The doctor told me that they have to use the one in my hand and not the PICC line. Actually he told me off for asking for it in my PICC line each time. But hey, can you blame me? But omg it hurts me, and the poor nurses have to deal with me wailing and crying. Not nice for anyone. Especially not nice when they wake me up at 1am (like last night – that was meant to be my 9:30pm antibiotics, but they couldn’t find any antibiotics until 1am – have I mentioned I miss my old ward?) and cause me that much pain. I’ve cried myself to sleep twice now. The pain does die down eventually at least.

No one knows why it hurts. The best they can offer me is to say ‘it shouldn’t be hurting… there’s no reason for it to hurt… would you like some paracetamol…?
Paracetamol, mate?
You try being in this much pain.

I keep coming across these things that hurt me that ‘shouldn’t’, that no one knows why they do, and that no one has a solution to fix, it’s just something I have to put up with. And if I’m lucky I can have some paracetamol.

Yeah… I’ve got no answers to this one.

Still waiting to hear if I can go home today…

By the way, they have no idea where the supposed infection I had is. Just an unexplained temperature for a couple of days… Who knows! It’s gone now.

Anyway, don’t mind me! Hopefully it’s nearly over! And I can only hope that it doesn’t happen again. Only one more cycle contains this horrible chemo drug that knocks me so much though, so if I can just get through that, we should be on the home stretch!

Hopefully my last night in hospital…

Wow so.

I had my fantastic stay when I was first admitted to the hospital in the Mary Seacole Ward, but that is only for the first 24-72 hours after admission from A&E. As soon as I was assessed and my neutrophils were a safer level, it was time to transfer me to another ward.

That was a shock.

I was still hooked up to fluids, so they disconnected me for a bit and wheeled me on up.

Lucky for me I got my own room, though no longer my own ensuite. My nurse from downstairs brought my fluids in, said goodbye and good luck and that she was handing me over to my new nurse. My new nurse said she just had to quickly take someone into surgery and then she would be back in a minute.

Now these fluids run for 8 hours. I didn’t want them being dragged out any longer than necessary. And they’re a pain. I have to ask to be disconnected every time I need to go to the bathroom. Charlie was coming to entertain me with board games at 2pm and I didn’t want the damn fluids to cut into that time too much.

An hour later and she still wasn’t back. Great. More time without the fluids running. I didn’t even know where the bathroom was. Unfortunately it wasn’t too much longer before she came back and she finally hooked me back up. Right. Great.

Earlier I had put my order in for curried goat for lunch, fruit yoghurt and soup, and spicy lamb stew for dinner. I figured it might be a challenge with my mouth, as all I had managed to eat prior to now was soggy cornflakes, cottage pie and soup, but I was looking forward to it!But they moved me before lunch. I wondered if my lunch would be able to find me up here.

Well. When I got up to the new ward, the lunch lady came in and said ‘well all we have left is… baked potato and baked beans…’
Ok… I guess I’m having that then.
For dinner they brought me a cold tomato omelette, with mash potato and gravy, and a pile of sweetcorn.
And extra gravy on the side…
I… have no idea.
Omelette and gravy?
Uhhh…..
They haven’t come to collect it yet three hours later, and my room smells… interesting…

Anyway, I had a visit from the doctor tonight who confirmed that we’re just waiting for 48 hours no temperature, and neutrophils of 0.5 Well, they told me this morning that my neutrophils are 0.5, and sometime early tomorrow morning will be 48 hours with no temperature. So………..

THAT MEANS I CAN LEAVE TOMORROW MORNING RIGHT?

I bloody well hope so.

All in good time to go to work on Monday! I might just check that I’m at a safe neutrophil level (that’s my immunity) to go on the tube/to the office on Monday. Otherwise I might be needing to work from home.

But either way, HOME!!!! Hopefully…

Anyway tonight is Guy Fawkes and I love Guy Fawkes… At least I can hear Fireworks from my window… And it was pretty entertaining spending the afternoon/evening playing Chinese Checkers, Uno and Canasta and listening to music. Thanks Charlie for spending your Guy Fawkes with me.

Happy Guy Fawkes everyone.