Emergency blood transfusions!!!

So I came in this morning for a quick pre-chemo blood test, expecting to be in and out quickly.

I wanted to check what my platelets and neutrophils were doing so my friend the Australian nurse Charlie said to hang around and they’d be able to tell me the results in about 20 mins time. So we waited.

And good thing we did. My neutrophils were a very respectable 1.9 which was a very pleasant surprise (I’d been tentatively hopeful for 0.5). However, my haemoglobin was very low (63) and my platelets had dropped again (30). So. 3 units of blood ordered asap. We’re ignoring the platelets for now. Apparently 20 is the worry.

Two I’m having this afternoon – I’m currently on my second.

The third I have tomorrow.

Thanks again to the amazing people who made this possible. Blood donors are saints.

Now. Tomorrow. I have a kidney test. This goes for 4 hours. I get injected with… Something… And then I go away for two hours. Then I come back every hour for three blood tests. They worried me by saying I would have to have a cannula and that they couldn’t use my PICC line. I was aware for the injection I would need a needle, but I hoped they wouldn’t need to put a cannula in me all day to take the blood from – that’s what my PICC line is for! And we all know from recent experience that cannulas don’t work. Plus my whole right arm is bruised, swollen and sore.

BUT! I just emailed my CNS (my main nurse contact) and she called the kidney test people who confirmed that they could use the PICC line for taking blood.

OH THE RELIEF!

So tomorrow is dad’s birthday. We’ll come in for the first, mean part of the test where I have a needle. Then we’re going for birthday brunch nearby! That’ll be nice. Then back and forth a bit for a couple of hours. Then back over to haematology for one more unit of blood which will take about 2 hours.

And then we’re free!!!!! Over for a drink in the old booking office for the St Pancras station, an absolutely fantastic building. Then up for birthday dinner in Angel.

Hopefully everything is coming up Jen from now. Just need those platelets to sort themselves out.

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.

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.

Monday, 2.c. Final week of second cycle.

9:20 – First things first, downstairs to the blood people for my Monday blood tests.

Catch up on weekends. Be happy we have sun and no hurricane. Everything going so quick today, I guess because I scheduled everything earlier.

9:40 – Head upstairs. I’ve got about 40mins until my appointment with the Oncologist.

See Nicola the wig lady at the Macmillan desk as I walk past. Wave and smile. I like her.

Scan later today so only water. No food, no coffee, tea, anything. No tea???? Don’t they know it’s Britain? I’m already hungry.

Sit downstairs for about half an hour reading my Kindle, then check in.

10:10 – Up to first floor reception 2 when name gets put on the board.

Immediately greeted by name by the staff on the desks. Smile.

I would take a seat but there aren’t many and my eyesight is rubbish now because of… Well any matter of chemo things. So I hover by the wall to wait to see my name pop up on the board.

10:30 – Desk staff member comes and politely let’s me know the board is summoning me into the Oncologist room. Oh yeah. That smudge of writing just there… Could have said anything really. Apparently it says Jen. Thanks friend.

Make my way in to see my mate Dr. Vasilios.

Appointment takes the courtesy 5-10 minutes it does every week. He feels my face a bit which is nice and tries to tell me it hasn’t got any bigger. Well… Ok… I guess we’ll wait to see what the scans say – first one this afternoon.

I asked if I should have a flu jab, he said no definitely not. Not safe if you’re immune compromised. Deal.

He also looked at my iron levels and was like ‘wow so you did have the transfusion last week??’

Nah mate!!! I took some iron supplements and ate lots of red meat. YOU KNOW THERE ARE OTHER WAYS TO BOOST IRON OTHER THAN VIA A TRANSFUSION?? Wow. I need to teach these people a few things!!!

10:40 – Book next week’s appointment and put my name on the pharmacist list to see my friend Joe. Yes, everyone is my friend.

10:55 – Joe comes out and says ‘I’ll just get your tablets’ and I say awkwardly ‘ummm I actually already have them… Weirdly…’ So I went in. Neither of us know why I got given them the previous Friday but there you go.

He had a trainee pharmacist with him today. Hi. Joe tells me my Methotrexate levels for each day for the previous week and then we discuss important things like food and coffee. We explain to the new guy that I’m a coffee snob and that Australians created coffee culture. I’m sure he felt all the wiser.

11:10 – Up to Ambicare (what the cool kids call Ambulatory Care) for my observations and to have a quick hello. Confirmed that I am back in the Cotton Rooms. Hooray!!

11:30 – Still over 2 hours until the scan. So I wander over to Waterstones book shop just down the road to pick up a birthday gift for someone. Hope they like it. Books can be a gamble. 

(now I know how you all felt recommending me books!! But I love it! I’m making my way through them all, thank you! I will get back to you each separately).

11:45 – Sun is shining!! So I took myself out and sat on a park bench in the sun to read for a while. Windy… But the allusion of a beautiful day was there and I was happy! To be fair though I’m pretty much always happy. Insufferable.

12:45 – Made my way back to the hospital. Stopped via the canteen to get a bottle of water and some snacks for after I finished the scan and could finally stop fasting!!!

13:15 – Still half an hour early but I made my way up to Nuclear Medicine on level 5 of The Tower. All ready to start my PET/CT Scan. More reading while waiting, of course.

13:45 – They took me in and lay me on a bed, pricked my finger to check my blood sugar levels were ok, flushed my PICC line (mmm I love the taste of saline flush in the back of my nose/mouth. SO WEIRD) and I waited there a while. In the meantime I had some entertainment from two guys climbing up into the ceiling to try and fix a leak.

14:00 ish – the lovely scan lady/ nuclear nurse/whoever-she-was-I-liked-her (she can be my friend too) brought me my specially made injection and into my PICC line it went. I was told to lie still for an hour and not move any muscles. She was nice enough to bring me my headphones, water and a blanket and I listened to Desert Island Discs (amazing BBC podcast definitely worth listening to) while I waited.

I may have had a little nap too, it’s hard to say.

15:00 – I was told to go to the bathroom and meet them in the scan room and they got me all strapped in and ready to go. Metal all off (Haha no more piercings to get in the way!!! Just my metal jeans button… Had to drop my trousers to my knees…), and loaded up with two blankets I was ready to go.

The next half hour or so passed with me being colder than I could possibly remember (do they have to keep it so cold? Maybe the big machine generates a lot of heat…) and listening to some amazing 80 music that was being played in the room. The machine I was lying in this time was quite comfy (the last one hadn’t been) so had it not been so freezing, I would have been quite comfortable!

Regardless, it passed quickly enough.

Quick check that the scans had worked properly and off I went!

16:00 – I went and checked in to my home away from home (The Cotton Rooms) and got comfortable. I ate the snacks I bought. They were welcome after having fasted from the previous night.

Charlie messaged me to say his football game was cancelled so he would be back at normal time, which was fantastic news for me.

18:00 – I took the first of pre-chemo pills and Charlie got in not long after.

19:00 – we popped across the road for burgers at Honest Burger. I wasn’t so taken by mine even though it’s the same as I always get (beef and Stilton yum) but I ate it all because… You know… Iron…

And then it was pretty much time to chill for a bit and go to sleep. All ready to start the big guns on Tuesday – 3L of water (backpack) between 8:30-12:30, 4hours of my yellow friend Methotrexate in the afternoon , then I’m sent off with my 3L of water to get me through until 12pm the next day!!! It’s all go.

The PICC Line is in! No more needles! (Communal sigh of relief)

So I went to work today as planned, since my PET scan wasn’t until 3pm.
At about 10:20am I got a call from my nurse asking me where I was. I said at work. She asked me when I was coming in and I said ‘well I have my PET scan at 3pm…’
And she was like ‘you’re getting your picc line in 10mins… Then you’ve got your [insert terminology I don’t understand] after that.’
I said I thought it was all getting moved to tomorrow since she said that’s now when I’m starting chemo, and she said ‘oh no these two things are still happening today, sorry I didn’t explain that’.
Oh.
So I had to drop everything and head to the hospital (luckily it is super close to work and I got there pretty much on time).
I kinda wanted Charlie here for this but ok…

So I went straight to the PICC line people. Now a PICC line is pretty much like a permanent cannula that sits in my arm which I will have for the duration of my treatment and basically means NO MORE NEEDLES. Absolute dream.

The PICC line people were amazing. I loved them both. I wish I were better at remembering names. I think the guy who assisted was called June…? Did I make that up? Anyway, he was so lovely and put me at ease and put some music on for me during the procedure so we all had a bit of pop music in the background to keep everyone happy. Then I met the lady who was inserting the PICC line. Surprise surprise, she was Australian! We always manage to find each other. She was great fun, and it turns out that prior to moving here (8 years ago) she was living in Canberra! Which is where I was living for the 4 years before moving over to the UK. And in fact she was in her final week of work here before heading back to Australia for a while.

But she was great. She talked me through everything as she did it, which I am always a huge fan of. So the first step was to find the vein using ultrasound, which was super cool. It turns out that my veins split and wrap around and dance all over the place, because I just have to be different. So they found the best spot to go on – it’s on the inside of my upper arm, about halfway between my elbow and my armpit. Then it was on to sterilising the area and covering me all up, then local anaesthetic. It stung a bit at first and then was ok. Then she went to go into the vein and my goodness it hurt. I cried out in pain and she got a bit scared. They worried for a moment that they had hit a nerve (there was one just next door to the vein), but thankfully no. She gave me a bit more local anaesthetic and tried again to get into the vein. It still hurt a bit but nowhere near as much, and it was over quite quickly. I think my veins just don’t like to be poked. They hurt more than a regular person – she said she was surprised that it was hurting me because it certainly wasn’t meant to. But it was perfectly fine after she got into the vein.

And then she started threading. Poking it through my veins and hoping that it went the right way! After a bit of threading, she thought it should have been there but wasn’t yet. So she thought she would pull it out a bit. She asked me to hold my chin down to my shoulder and pulled it back out, and I felt it shuddering back down through my neck. We were both a bit shocked, she said she had never felt that before, in her 7 years in the job. I had certainly never felt anything like it! Imagine a rubber tube inside another rubber tube, maybe with a bit of a kink in it, and pull the inner one out. Think about how the rubber would catch and almost shudder as you pull it. That was my neck. Not painful, but bloody weird!

So if you hadn’t guessed, it was not supposed to go into my neck. Though weirdly, apparently this is common in young people! So with a bit of breath holding from me and re-threading from her, we successfully got it into place, sitting just above my heart, threaded from my left arm over to the right hand side of my chest. Phew! Then I got this thing put into my skin with metal hooks to hold it all in place, and I was good to go! Wow. All in all it was quite fun though, and they were really quite lovely. I wish them all the best! Though I hope I don’t have to go back there again, as I would like to go through the whole process with no issues with my PICC line!

But now I have two ‘access ports’ (i.e. two cords with a valve at the end of each) hanging out of my left arm, with a nice stretchy bandage I can put over it. They gave me some plastic sleeves for showering too. It bloody well hurts at the moment, but I’m hoping it calms down soon.

Anyway, I then wandered back upstairs and had an appointment with my clinical oncologist. It was the first time I met him and I liked him. Prof. Whelan. He told me about chemo and about how my type of sarcoma is totally treatable and should be fine, the only problem is likely to be if it comes back one day. But that’s the future’s problem. Maybe it won’t. It’s rare anyway, right?

Then I went to pharmacy to get my chemo drugs sorted out for tomorrow. The guy there was really great too. We chatted about gigs and all sorts.

I ran upstairs for a quick session with the Ambulatory Care. The room is a bit depressing, but more on that later.

Then off for my PET scan. Thankfully this time I had my PICC line! So no needles, no veins, nothing stressful, just a little bit of radioactive sugar. This is the important one that looks at my whole body and tells me if the sarcoma has run away to any other parts of my body. But apparently it’s unlikely with this type of tumour in this location. So fingers crossed that is correct! I had to lie still with my eyes closed for about 45mins while the liquid made its way around my body, so I listened to a podcast and promptly fell asleep. It had been a big day. Then 30mins in the scanner, and I was all done!

Phew.

So that’s some more things ticked off, and tomorrow it’s on to the real deal! I’ll report back soon!

Kidney tests may very well be the devil.

So today was the GFR (kidney) test.

I don’t like it. I don’t want to do it again, thanks (hopefully I won’t have to, I’m not sure).

But let’s start from the beginning. I’ll warn you, this might be a bit of a long one.

First I had my echo test at 9am. Super easy. A lady puts gel on your chest and then takes photos…. Ok well it sounds a bit dodgy when you put it like that… But one of my chemo drugs can affect your heart so they make sure it’s ticking as intended first. Heartbeats look pretty in ultrasound form.

It only took about 15 minutes and I had an hour to kill before my next test. So I went somewhere nearby for coffee where I knew I’d had good coffee before. But today they decided not to play. Probably the worst coffee I had ever had. I think maybe the milk was off, it tasted so sour.

So I left it on the table and headed back to the hospital for my GFR test (yes, one of my drugs can damage your kidneys), excited to see what this was all about.

The first step is to inject you with this radioactive stuff. Which might I say – super cool! But injecting me is always a saga. So they inject you in one arm first, then you go away and come back in two hours, and then they put in a cannula in the other arm to take the first of three blood samples, then you go away again and come back in an hour and then once more.

So they had to pick the less good arm for the injection.

After about 10 mins of looking in both arms (pins and needles in my arms by this point because of that tight thing they put on your upper arm first to make your veins pop out and say hi), he went in. And failed, obviously. Not nice. Kept trying to find it, I felt queezy, remembered how I have been here so many times before, with people hunting for my veins for hours and I had a little meltdown. Poor Antonio. I had to lie down on the bed for a while.

Then another nurse came in and said ‘can I try? I want to have a go’. Great. Instilling me with confidence.

But before she could line up for a turn, someone else walked in and they were like ‘thank goodness you’re here, can you do this?’

So I got the master. She went into the vein in the back of my hand though which was a bit stressful but ok. It swelled up pretty quickly afterwards and was quite bruised and sore but whatever. At least it was over.

Then I went to get some lunch, was disappointed by Franco Manca’s terrible pizza once again (what is with that place!) and set off to find some good coffee this time!! What a relief finding The Penny Drop at Tottenham Court Road!! And a fantastic ANZAC Biscuit. This made my day. Will definitely become my new regular spot.

By the way, there are some pics of all this on my instagram story if anyone is interested (don’t worry, no needles) – @thecancerchrons – I started a new account for all this stuff.

When I came back to the hospital to get my cannula in Antonio was like ‘uhhhh I’m going to get someone else to do yours’. Aww poor Antonio (later on when I saw him he apologised again for failing and said ‘no hard feelings?’. I assured him we were good, and he breathed a deep sigh of relief. Sorry for worrying you so much, Antonio, you were lovely). Anyway it meant I got seen super quickly, and she got the cannula in fine, in the normal spot on the inside of the elbow. Relief. But my goodness it hurt. She kept telling me it shouldn’t hurt and asked me where. Where?? My left foot obviously. Idiot. She asked me to point to where. See that big needle sticking out of my arm?

She told me there’s no reason for it to hurt and I had a little cry because ow. The lady who had wanted to ‘try’ the first time around came in and said ‘oh it’s just her crying again. She always does that. She’s always crying. Ignore her.’

Sigh. To be fair though, so far I have cried about a man telling he wouldn’t take my earrings out and now about a needle. So she might have a point. Not about cancer though! Haven’t cried about that yet (but don’t judge me if I do at some point).

So she took the blood and sent me off to run around town for an hour. And gee it hurt. I had sharp stinging pains around the cannula every few seconds. So I wandered blindly around the streets feeling very sorry for myself. Until I stumbled upon Dillons coffee in Waterstone’s book shop and had a nice cup of tea. Order restored. Second blood sample taking was quite uneventful, though her forcefully trying to pull the blood out of my veins feels odd and of course it was all stinging quite a bit. I spent the next hour sitting on a park bench in the sun smiling, looking in on a private park that I wished I was sitting in, and had a nice little message chat with my good friend Ash from uni who told me her tip of how to fix the bumps on my ears from the piercings (shout out Ash, I owe you one). Then one more trip back to get the last sample, get the cannula out, and an apology for the pain and stress.

Anyway. It was all a bit stressful at the time. But looking back as I sit here now in the book shop with a glass of wine and Arctic Monkeys playing in the background (Crying Lightning!), and reflect on the day… Well I survived and I had some nice little adventures in between. Insert something about building moral fibre. Another day down, another day closer!!

Also I found out that chemo is now starting a day later because I have to have a PET Scan on Monday first (more needles, yay – I’m running out of veins!). So everyone put Tuesday 15th in your diaries!