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.

Another Cisplatin down…

There is a photo of me from when I was little, sitting in the middle of my parents bed. My little figure propped up, with a big quilt spreading out on the bed around me.
This is how I felt when I got home last night.
I climbed straight into my bed, under all the covers.
I felt small, cold, tired, overwhelmed. I was reminded of this photo and the big bed around me, as I felt so little in the middle of it. But I was home, and that was the important bit.

I was talking to someone yesterday in the common area of the Cotton Rooms (The Cotton Cove) – I was waiting to go over to Ambicare to get disconnected, he was waiting for his room to be cleaned.

He has Leukaemia. That one scares me. I mean people recover fine from Leukaemia, I know. But blood cancer… wow. That would be hard to get your head around. He also has to find a bone marrow donor match before his 6 months of chemo is out. I feel for him.

Not to scare you, but do you want to know how he found out he had Leukaemia? His gums were bleeding when he brushed them. So he went to the dentist, who told him to use mouthwash. Within a week he had blisters in his mouth and went to the hospital… cancer. He had 8 platelets left. That doesn’t mean anything to me either, so I googled it. Apparently a normal platelet count ranges from 150,000-140,000 platelets per micro-litre of blood.

He was also telling me about someone else he had been talking to, who’s wife said he was sweating more than usual at night time, so he should go to the doctor… Turns out it was cancer.

It kind of makes you wonder how anyone ever diagnoses these things at all!

I suppose the important thing here is awareness. Know what to look out for, take things seriously. Though I have no idea how you’re meant to catch a lot of these things.

Anyway, I’m tired, sore, but ok. I’ll get worse over the next week, but hopefully will start to get better in after that and can get back to work for a bit, catch up with some friends, etc.

I’ve been quite nauseous this time around, but I haven’t thrown up yet, so that’s a good thing. Small meals, bread, etc. all the things you’re meant to do when you’re feeling ill. The injections start tomorrow… I’m not ready for them.

But for now I’m sitting awkwardly on my bed because I can’t lie down due to my back pain, I’ve got some candles burning, and I’m listening to BBC’s Desert Island Discs. It’s not too bad, really.

Acetazolamide, alarms and ONE THIRD THROUGH, BABY!!!

Let me tell you about Acetazolamide.

So I start taking it 12 hours before my Trex. Pills every 6 hours from midnight the Monday night just before I start. It protects me against Trex toxicity. Great. Love that. I’m onboard.But you know what the trade off is?

Pins and needles.

In my face.

And knee caps.

Faaaaaaace 

Aaaaand 

Kneeeeee caaaaps 

Lololol.

Ok so you can move your knee caps around and usually dispell it. Balls of feet too. Feels hilarious but manageable. But you can’t really move around the bits of your cheek and nose. It is disconcerting. And hilarious. And off putting. Mostly hilarious. But also so weird. Thankfully the Acetazolamide only lasts for 48 hours. But by that time you’re pretty happy to see it gone.

The last two weeks I’ve had some problems with my pumps being super sensitive. I mean I’m glad that there is an alarm to tell me if there is air in my line. But it doesn’t need to do it 3-4 times a week as it has been doing the last two. Prior to this stint it had only ever happened once. One of the times the alarm went off this week I had to take myself over the the main hospital tower at 9:30pm to get them to fix it. I had to leave the boys at the pub watching the football while I wandered over to level 16. The next day in Ambicare they just gave me a new pump as they had the week before and no problems arose after that.

At least I’ve had a shorter trip back to Ambicare each time now that I’m back at my beloved Cotton Rooms. And we were able to cook in the oven and eat our delicious takeaway Ramen in the dining room (which we have affectionately named the Cottonstaurant). Makes such a difference being back here. And omg I can have baths every day. I am in heaven!!!

Anyway I just got my all clear from blood test this afternoon and I am on my way home for the weekend! Back again next week for the mean drugs.

But guess what. Can you believe I’m now ONE THIRD of the way through my cycles??? Amazing. Not even a challenge!

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.

Catching up on cycle 2.b (last week’s Methotrexate)

Last Monday I walked into the reception of the main hospital at UCLH and was met by Darth Vader and a whole lot of Stormtroopers. Darth Vader was a bit scary. A Stormtrooper came up and told me we needed a selfie – who am I to say no to the Dark Side?? What fun.

A couple of days later, there was a man playing harp in the very spot that had been filled with Stormtroopers only two days before. Thanks again UCLH.

I was still trying to keep up my iron levels last week so I was using my lunch voucher to eat steak and kidney pies in the cafeteria each day. Hospital food is seriously good!! Not all days are great but there’s usually something there.


Near the end of last week I got all my negative swab results back for my cold and for the last day I was finally allowed back in the normal ward!! My isolation was officially over. It was such a relief! I was welcomed back with open arms as everyone was happy I had been reinstated to my former glory. I’m ok if they were pretending and were actually muttering ‘oh no here’s the chirpy bundle of trouble back again’. I did a little dance. It felt like Christmas. This meant that we were done with the bad hotel and making our way back to The Cotton Rooms for the next week. Incredible.

To be fair the days just keep passing by. Some days there are stories, others there aren’t. Last week I was exhausted because of the low iron but it started to raise by the end of the week.

By Friday I was feeling a lot better. Miles better in fact. Charlie had the day off work with me which was incredible, and we drank coffee, ate ANZAC biscuits, went to the food market nearby for lunch, and took ourselves to the pub to await the results of my Methotrexate levels so I could get disconnected and head home. Then once I got the all clear, off we went! Straight to the local pub when we got home and then had some red meat for dinner to boost that iron a little more.

Life is good.

ANZAC biscuits and coffee at The Penny Drop in Fitzrovia