Reiki road test

Ok, as promised, it is time to report back on my experience with…

REIKI!!!

Reiki was basically exactly what I was expecting. But I promise I really did go with an open mind.

I went in and was asked to lie down on the bed after a brief introduction. There was some lavender oil diffusing in the room, which was nice, and the Reiki man put some calming music on. He told me to close my eyes, which I did. He started by placing a hand on my shoulder and my elbow and held them there for a bit. Then he moved to my elbow and knee. Then knee and foot, then both feet. Yes, you guessed it, he was moving around me, anticlockwise (which stressed me out a bit, surely you’d start clockwise!), putting his hand on various parts of me, pausing and moving on…

When he got back up around to my head he put a hand on my forehead which was a bit weird. Something about the forehead feels far too intimate for a random. He then went around me again. And again. Occasionally would touch my elbow with one hand then hover his other hand over my hands. Or over my knees…

The one good thing about all this is that it was freezing, and his hands were very warm. He would also occasionally do some weird sweeping motions off to the side, kind of like he was trying to conjure something with an abracadabra routine. Yes, I was peaking when I thought he wasn’t watching. Though he had said I could open my eyes at any point, and also to tell him to stop if it became too much… not sure what was meant to become too much.

Half an hour later it was over…

Ok…

‘Woah, that would have been weird, hey?’ He said to me when I opened my eyes. ‘First time of Reiki, must have been wondering what this crazy person was doing.’ I mean… you said the ‘c’ word, mate, not me. He kept going on about how it was weird and didn’t seem to do anything… I think he was trying to put words in my mouth – maybe he was used to people saying these sorts of things after? I wasn’t sure but it seemed odd.

But yeah, it was ridiculous. Look, having half an hour to lie down and relax without sleeping, and just try to meditate a bit was nice I guess, so yeah you might feel more relaxed after because of that, but that’s got nothing to do with the Reiki. Though it is easier to have a clear mind if you have something to focus on, like if a strange man is touching your shoulder. Personally I just prefer to use the Headspace app…

In the post-session chat, he said ‘the only thing to note is that you might find yourself being more emotional today. So if you do  get emotional, just try to remember it’s to be expected.’ Emotional? Why? Are people not used to being alone with their thoughts and they bring up some emotions? Weird.

I really don’t get it. There’s not even anything to hook people with. There’s no confirmation bias like there is with Astrology (or the witch doctor I wrote about last week). I honestly cannot understand how anyone can buy into this…

I still have three more sessions and not sure what to do with them. Maybe relaxation? I can see the sense in that at least, and it doesn’t pretend to be anything it’s not.

But I am glad I tried it. It was free. No regrets, everything once. And I got to tell you all about it!

MRI Sundays

So it turns out I now have a problem with MRIs.

I guess I’m feeling a bit fragile at the moment. A bit emotionally unstable. In a big way because I’ve just found out I’ve got to cancel all plans for the next year or so. But also the fact that I can’t use my hands is getting to me. I struggle to tie shoelaces, I can no longer wear anything with buttons, even jeans are out. I can’t hold a pen or write… And there are a few other things that are all adding to the stress. Yeah I’ve got a lot on my plate to deal with, emotionally. And still recovering from my last chemo too.

Anyway. I had to go in for an MRI today. On a Sunday. Poor imaging people working on a Sunday. I usually quite enjoy MRIs. But this time I almost freaked out immediately when they first put me in. My heart started racing, I felt really hot, I felt like I was boxed in. I honestly felt like I had to break out. Hey claustrophobia, that’s what you feel like! I’ve almost felt it once before back in high school when we went caving and did one particular cave that was a tight passage going down to the cave and back up. B45 I think was its name. So unassuming. I didn’t have a problem then but I remember being on the cusp of thinking it could go either way.

I almost pushed the panic button early on, I really thought I couldn’t make it, but I managed to calm myself down when the MRI started. I never know whether it’s better to keep your eyes closed or look out through the little periscope peep hole. But I did some deep breathing and tried to stay calm. It worked for a while but then I started to stress out again. The MRI operator asked over the speaker if I was ok. I said I was stressing out a bit and they said they had noticed a bit of movement on the last scan.

They came in and pulled me back out for a bit. I had to stay in the brace and hold still but at least I could breathe for a sec. Deep breath in, deep breath out. Still feeling boxed in, wasn’t sure how I would deal with the rest of it. Still 15mins left.

One of the imaging girls offered to hold my hand for the last bit. What an absolutely beautiful person. I thought it seemed as bit silly to need it but I took her up on her offer. She said she had done it before, it wasn’t weird or abnormal. So we held hands and I went back in. Knowing the outside world was just there made a huge difference, it felt like I wasn’t actually that far away.

The other added, though unintended, positive of this hand holding is that I was concentrating so hard in not squeezing the hell out of her hand that it helped to distract me from the tiny tube I was confined in. One of the other bonuses of this peripheral neuropathy is that my hands have a mind of their own at the moment. They move around on their own and clench themselves of their own accord. So they were cramping up and probably clenching super hard but I couldn’t feel how hard they were holding, so I was concentrating pretty hard on that.

It also helped that the other girl who was doing the scanning from the other room gave me updates on how much longer I had to go. They also came in 5 minutes from the end to inject me with some dye so that was a nice little break too. Not to mention they turned the radio on and between the thumps of the scans, I heard ‘I’m Only Sleeping’ by The Beatles serenading me.

I got through it fine, but I don’t know if I would have if the angel of an imager hadn’t come to my rescue. And they were both so lovely and patient. They said to try and bring someone along with me next time just in case. I don’t know if it was just this time or if I’ve developed a problem but it might be a good idea to take a helping hand along next time – anyone feel like having their hand squeezed off for a while?

I wasn’t lying when I said the hard bit was yet to come

I had to go in today for photos so they could build some 3D models of my jaw for surgery. Super cool.

The photo guy was really nice. Though he confirmed a few of my worries to be true.

The surgery recovery will be huge. Really huge.

It will be at least a year before I have any teeth. Just a nice gummy gap in the meantime. Talking will be difficult. Living will be difficult.

What do you do with that information?

I went and got coffee. Seemed a good place to start…

Somehow, we have found ourselves at the end of the first part of all of this

No.
More.
Chemo.

It kind of ran up on me suddenly, with all the unknowns of whether I would be finishing my chemo or not. The ending was pretty anticlimactic I suppose. As it was chemo at home, it had been fairly easy. No pumps or 3L/day of water leading up to getting disconnected, no lugging all my things home from the hotel. In fact I spent my final night of chemo at the pub, drinking too much with my housemate and chatting to all the locals, making friends and planning post-chemo parties. Then I popped in to Ambulatory Care on the Sunday, saw Damien and Freddie, got disconnected, scheduled my PICC line dressing change for the following week and went home.

Yes, chemo is over. No, I wasn’t able to finish all the chemo I was meant to have. No, I can’t currently feel my hands or feet and they could take months to come back. No, I’m not feeling ‘better’, I’m actually feeling pretty dead, as expected. And the self-injections have been an interesting challenge with the current hand situation. Well at least the pain in my hand and the difficulty in holding the syringe takes away from any pain or fear for the needle. I’m so good about it now.

It’s a little difficult to really get excited when my mind is running straight on to this huge surgery I have coming up, plus lots more unknowns of when it’s going to be, what it’s going to be, etc.

But my goodness, once I’ve spent the next week feeling progressively worse due to the latest dose of chemo, then I can start actually getting better! My hair can start coming back properly. No more taking my temperature 6 times/day to see if I need to rush to the hospital. Yeah I’m going to have to face a lot of pain and a very long recovery with this surgery, but I won’t be regularly killing all the healthy cells in my body. I can start building up my strength, though I know that will take a long time. Years maybe. And once I know when surgery will be and about how long recovery times are, I’ll actually be able to see an end to it!

And after I’ve survived this week, I’m going to do some celebrating! Try to fit in lots of dinners and drinks with friends in the few weeks I have, maybe fit in a short weekend holiday even!

Most importantly, thank you for all the love and support you’ve all given me so far. I’m so glad I decided to write about it as I’ve been going and I’m so glad you all decided to come along with me. It certainly doesn’t stop here, there is plenty more to come on this ‘journey’. Cringe. It’s definitely not a journey, it’s just a shitty thing I’m battling through. But it’s definitely been easier with all your support. Thank you all.

And suddenly… it appears I’m on my LAST CHEMO!!!!!!!

So I went into clinic today not knowing where I was at in the whole chemo schedule. I was waiting on test results to see what would happen next.

Scenario one: If my kidneys were still struggling, I would have one more chemo (my fave chemo-at-home), starting today.

Scenario two: if my heart AND kidneys were struggling, I wouldn’t be able to have any more chemo.

Scenario three: if both were fine, I would have the 5 more planned chemos, including more weeks in the Cotton Rooms, more backpacks, more tests.

Turns out it ended up being a not expected scenario four: my kidneys all better, my heart all good, but only one more chemo starting today, as it is too much of a risk to my kidneys to let them have the rest of the Methotrexate.

Which means that I have two more days of chemo and next week to recover and I WILL BE DONE!

I can’t believe it. I really can’t. How have I found myself here? After 6 months of this. Suddenly staring at the end of the chemo.

I ran into my sarcoma friend Katrina while I was in. Thanked her in person for her amazing injection tips. Her heart is struggling and my kidneys have been. So we’re each finishing the chemo the other can’t! That’s kind of cute. Together we make a functioning person but the chemo has made its mark on us both. The good news is that both our damaged organs will recover (and already have been!) as long as we stop the last of the offending chemicals.

Chemotherapy is great. The fact that we can treat cancer is just amazing. But it will be so much better when they find an alternative treatment that isn’t so all-destroying. Especially for sarcoma – as it is so aggressive and likely to come back, we get the highest dose of all these drugs. For as long as our bodies can last…

I got home and my new housemate is cooking me dinner. So I opened a bottle of wine to contribute to the dinner. Yep, chemo and wine. What of it? This chemo is harsh on my heart, and red wine is good for the heart so… it’s medicinal. And I needed to celebrate.

HAPPY WEEKEND EVERYONE!

Phlebotomist fights

This morning I had a fight with a phlebotomist. They’re the people who take your blood. So I go down to the blood people on days when I’m starting chemo to get everything tested to see if I’m ok to start.

It was a lady I hadn’t seen before. She got everything out to take the blood and then screwed off the valve on the end of my picc line. I had come across people trying to do this before when they were new or were used to different types of lines and thought there was a stopper on the end. I know that some of the people down in the blood place were also quite new to picc lines, once I was someone’s first try. So I was like ‘oh, you leave that on’, just trying to help.

She got so angry at me, telling me it has to come off and that it’s policy and everyone takes it off. She even tried to tell me they often change the valve every time (also not true) I was like ‘ok well no one ever has before’.

She took the blood fine with it screwed off, so obviously it wasn’t a problem, I didn’t know it was possible to do it like that because clearly no one had tried before. So no bother, I just let her get on and do her thing.

At the end as she was screwing it back on she said ‘see? Now there’s no blood in the end’.

I said there’s never usually blood in the end anyway because you flush it through afterwards. She then went back to shouting at me about how she knows what she’s doing, everyone does it the same and I’ve clearly just never bothered paying attention.

I quietly told her that I’d been dealing with this for 6 months, and it’s obviously fine she did it that way, she’s shown me that it’s possible so I’m not bothered, but she can’t tell me it’s the way it’s always been done because it really never has. I mean I was almost tempted to get her to ask one of my usual girls who I could hear chatting in another bay but I didn’t want a fight.

Bit of a pointless argument really. I said thanks as I left and she ignored me entirely. So I said thanks again and said ‘am I all good to go?’ And she barked ‘yes that’s all’ at me.

Pretty much the first time in the whole 6 months I have come across someone not being lovely so I can’t complain. It was all very weird. Not sure what was bothering her so much…

Turns out she lost one of my blood samples too and I had to have it taken again later in Ambicare… I told them about her and they thought she was mad.

Stupid fingers

This morning I made a delicious looking bowl of yoghurt with strawberries, passionfruit and nectarine. I chopped them all up and mixed them in together.

And then dropped the bowl when I picked it up.

I have no feeling in my fingers anymore, it has rapidly declined in the past week. Typing is hard. Holding things is hard. I can’t find things in my bag.

You don’t realise how much you rely on feeling things to know how to hold them. To know how hard to grip it. And when you can’t feel anything you think you’re holding it tight enough. But then your yoghurt and fruit is on the floor.

How much longer will it keep getting worse? And how long will it last? Will it ever get better? Am I facing a future of potentially not being able to sing due to the surgery, and not being able to play any instruments because my fingers won’t work?

So I’m sitting looking at my upturned bowl of fruit and yoghurt knowing I have to go and clean it up. And I’m hungry.

Oh well. Gotta just try to ignore it and move on.

Note: I then made cheese on toast and dropped the plate. I think I should just give up.

Friday night update: now I’ve broken one of our nice wine glasses.