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Monthly Archives: November 2012

I realise the last post was a little bit lacking. I was tired, and I knew I had to write it in order for me to be able to write this one. Which I hope will be better. But then the last time I slept was Tuesday night running into Wednesday morning, so who knows. I’m still ‘up’ from the steroids post Chemo Day #4. They gave me the same stuff as they have the last three times before it, but for some reason, I’m still awake. I don’t feel like I’ve been awake for two full days either. I feel like I would on a normal night at this time. A bit tired, a bit ready for bed, still having things swimming around in my head, while I sit in bed watching tv, buying dresses on the internet, waiting for my other half to come home from a function for work he couldn’t get out of and that I didn’t think he should try to get out of for once. So…

Chemo Day #4 was a Good Day.

It went really well. I’d sat for my bloods the day before; I had the Aprepitant in my bag because I’d collected it the week before; I went in for my radiotherapy at half past eight in the morning, and then I was in the clinic waiting for the doctor two hours before my allotted time – and was seen within ten minutes because no one else was waiting. I was a little bit nervous going in for two reasons. The first being this bruise:

ugly Chemo bruise

ugly Chemo bruise

It appeared from nowhere the week before. Well, I think I slept with my hand on my arm the night before it appeared. it didn’t hurt, but I figured it wouldn’t be a good sign.

The second reason I was a little bit worried, was that I woke up feeling a little bit crappy. I’ve spent the last three days since the weekend… wait, it’s four days. It’s Thursday. The last four days since the weekend trying to fight a chest infection. I knew I’d get something; I always do and it’s always a chest infection. I get them all the time when I’m not on medication that shuts down my immune system so of course I was going to get a chest infection now.

But it’s okay, because I seem to be fighting it regardless. I was worried that it’d show up in my bloods and my white cell count would be too low or I’d be too poorly and have to take antibiotics first or something and this last cycle of Cisplatin would be withheld for days or a week and I’d have to go through another week of all of this. But no. I saw the doctor, she said my bloods were good. She took my temperature and it was normal. She listened to my chest, my sides, my back, and everything sounded clear: so she gave me the all clear for cycle four. She commented that my hb levels were high enough to be high for a healthy woman, but that my potassium levels had dipped, and so she wanted me to eat more bananas, more chocolate, more coffee (excellent!). But no greens whatsoever, and no fibre. Fibre is my enemy at the moment, for the side effects I’m not mentioning on here but anyone having to have pelvic radiotherapy knows all too well.

So by half past nine, I was finished at the clinc, I’d ticketed my electronic prescription with the pharmacy and was on my way home to sleep for the rest of the morning. A personal record for timing. I don’t think I could have done it any better.

What was even better though, was that after my nap, while I was putting my shoes on ready to leave to return to the Chemotherapy Unit, they phoned me to tell me I could come in early for the treatment, which was already nicely scheduled for 14:00 – so by the time I drove to the hospital they were ready to hook me up and I got started at 13:30 with no waiting in their tiny waiting room.

last cycle, ready to go

last cycle, ready to go

I took a photo to mark the occasion, and then had my complimentary sandwich, yoghurt, coffee, and lemon barley water in my super-comfy Chemo recliner while I waited for C to turn up to keep me company. When he arrived, he brought cake which made it even better.

cake

cake

And then I was finished by 17:30, and we were home in time to feed, bathe and put to bed our little boy without disrupting his ‘normal’ schedule. It felt brilliant. To be able to have the one last cycle go without any hitches, without having to sit around in the hospital all day, without feeling poorly and having to find a corner somewhere to cower or sleep for a while.

There should be a guide out there for people about to start treatments. There should be a guide that tells new patients about the delays they might expect at the pharmacy and how to get around them. About how they can give their bloods up to 72 hours before they have their Chemotherapy, so they don’t have to give bloods at the clinic before they can get in the queue to see their doctor. Because it has made such a big difference to me mentally, the last couple of weeks where I’ve figured out the ropes and have been able to streamline the day, been able to go home for a good chunk of the potential waiting time. Been able to turn up and just get going. And then, get going home.

Reading this back, it sounds like I’m telling you that Chemo Day #4 was a breeze. It wasn’t. Remember I have a chest infection and I’m coughing up green goop. I’m having ‘bathroom issues’ I’d rather have at home and not in public restrooms. And the extra special early start makes the Tired part of all of this even more of an issue. I really had to drag myself out of the car and into the hospital. I walked at a snail’s pace down the hallways, all by myself because C has to get to work (he’s already late by the time he drops me off and has another hour in the car to go, and my mum is dropping our boy off at school and won’t be along for another hour and a half at least). I still wanted nothing more than to get to the next stopping point, the next waiting room, the next seat. It’s just the knowing that I was taking the easiest route through the day that makes these things stand back as opposed the stand out in the day as Bad points. Like they did the first week, when I cried my way through the whole fourteen-hours-in-the-hospital day.

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It’s almost been a week since Chemo Day three but I refuse to move onto my fourth cycle until I’ve written about this one. I don’t know why I didn’t write about it yet either. Maybe because it went as well as it possibly could have gone? Maybe. It was a different experience to the last couple of cycles in any case. On Chemo Day #3 it felt like I had it licked.

After the first cycle, I guess I was afraid of Wednesdays. Afraid of Chemo Day. Afraid of waiting on my own all day, in the hospital. Because it’s a ‘tired’ day. It’s before I get the boost of steroids to help me keep up with the Cisplatin. It’s sort of a day of limbo, moving from the radiotherapy suite to the pre-chemo check clinic, to the coffee shop, to the conservatory and if I’m lucky enough to get a comfy seat, the ‘Relaxation room’ until it’s time to go up to the Chemotherapy Unit. Where there will be more waiting, only there’s free lemon barley water and sandwiches and full fat ice cream and cups of tea and coffee to keep your mind off the waiting part. The second cycle was better, apart from it being another late night home, and that had mostly to do with the fact that I had K’s company during the day and my husband C managed to get there before I started the treatment, not right at the end like he did the first week. So by the third cycle, I suppose I felt like I knew the ropes a little better.

It’s the little things that make a difference, the things that you find out week by week. Like my doctor, letting me have a blood envelope to get them tested on Tuesdays instead of having an extra hour’s wait in the clinic for tests to be done on the day, and telling me that it’s okay to come straight over when I’m finished at Radiotherapy, because as I’ve had my bloods done, she can see me earlier than my appointed time. And things like knowing that as soon as the Dr has posted your prescription onto the system, you should go to the pharmacy to have them acknowledge it, so they have it prepared when you go to collect it later in the day. Otherwise you turn up at 1pm needing your medicines before chemo and they’ve not even checked the electronic system and you have to wait an hour and take everything late and the stress levels rise significantly.

It’s these things that make it so that you can get to the hospital on a Wednesday at 8am and be finished at the hospital for around ten, so you can go home to sleep for a few hours until you have to go back for your chemo at 2pm. which takes the pain away from the whole day. Even with a half hour delay I was home in time to put my son to bed, eat at a decent time, have a normal night.

So Day #3 was a Good Day. Even with the side effects of having pelvic radiotherapy kicking in with a vengeance, it was okay.

before i went to bed today, i told Emma j. Lannie about this blog.

it was a bit brave of me, considering. she is one of my biggest influences even though she doesn’t know it. i love her writing style, i love the way she can put herself on the page so honestly, and i love her stories; i really love her stories. i always have.

she taught me to write when i was three years old at our huge kitchen table, by our back door. it’s one of my earliest memories; pages of A4 paper (of which there was never any shortage in our home), spread out around us, of her playing school with me, teaching me to spell my awkward first name with the patience of a saint.

she obviously knew her calling at an early age. now she runs workshops as a writer, and is having stories published and sold and getting pieces commissioned and just doing really bloody well in general. she’s also in the finishing stages of writing her first novel, which already has interested parties for agents and publishing.

i couldn’t be more proud and more honoured to come from such good writing stock. my sister is my hero.

and now, she knows…

my sister, my hero

my sister, my hero

Chemo Day #2 has actually come down to be in the Good Day category. I know. How could hanging around in a hospital from before eight in the morning until nine thirty at night be Good? I guess it was the small things.

If I’m completely honest I wasn’t feeling all that good when I got to the hospital. I’m walking like an octogenarian at the moment because the radiotherapy goes through my pelvis to reach the tumour and things have started to swell. I’ll have to test whether I’m okay with Ibuprofen at some point, but after the bleeding it caused last time I’m a little wary of going there until I’m a little bit further along. I didn’t have time to eat a proper breakfast because my other half had to drop me at the hospital before he went to work, so it was a very early start for me, and I was going to be on my own for at least two hours which is no fun at all when everyone else has their ‘buddy’.

This is where you really appreciate the staff that work in these hospitals. I can’t say enough good things about my radiotherapy team at The Christie. They remember everything you tell them, treat you like a friend, put you at ease in seconds, and send you along smiling. Yes, smiling. After being zapped by their laser. Amazing. I hope they never underestimate the strength they pass on for the rest of the day.

I went on from my radiotherapy session to the hospital restaurant and managed to eat a decent breakfast, then saw my doctor for my chemo pre-flight checks (again, another person who puts me at ease in seconds, seriously), and from there I met up with my best friend, K, for a hot chocolate and a good chat to take up some more of my hours, and after that, my husband, C came in to keep me company. It was good to be in the category of having a buddy for the day.

I still had to wait an hour later than my allotted slot for treatment; I don’t think that will change though as up to 200 patients go through the unit on any given day. I can wait an hour, C isn’t so good at waiting. Next week I’m going to make sure he has something to watch while we have to do that waiting part. The treatment went smoothly, and thanks to last week I knew to keep my arms and hands warm and drink a lot beforehand so there were no problems getting the canula in, so there will be less bruising this time round.

And now I’m home. The steroids are keeping me awake because I had the delay in my treatment, hence why I’m on here I guess. I was going to write about this tomorrow. But I’ve done it now. And now I’m going to surf the net for treats for a while because if it’s officially Thursday, it’s officially my birthday. And I know it’s going to be a Good Day.

I read the classics in college. I knew about the wheel of fortune. I should have known that to get an extremely uplifting Good Day it would have to be balanced with an equal and opposite Bad Day. Yeah. That Bad Day happened yesterday.

It hit me out of the blue. I know it shouldn’t have. I have cancer for crying out loud. Of course I’m going to feel pretty bad at some point. But the weekend went so well, I felt fine. I felt more than fine. I got out. I did normal-person stuff. I was even adventurous for what I’d normally do, because it was something I planned before all this took root. I went to bed Saturday night contented with all I’d accomplished even though it wasn’t very much at all. Then on Sunday I started to feel tired, and yesterday was worse. It wasn’t just Bad. I wasn’t just Tired. I couldn’t even move.

Going from one extreme to the other affected my mental state more than I realised too. Not being able to move without feeling sick was something I thought I’d gotten over with my latest prescription. And here I was again, doing the stop-start thing: Sit up. Breathe. Stand up. Breathe. Take a few steps. Breathe. It took me three hours to get out of the house, and that was only with a helping hand from my mum. I had another brief burst of energy when we got to the hospital, but then while we were sitting in the waiting room for my radiotherapy, my vision went blank, my ears stopped working, and all I wanted to do was sink into the floor and be swallowed up and not feel this bad anymore. After the feel-good weekend I felt defeated. I’d gotten through one week of my four week cycle and I couldn’t handle the drugs. Couldn’t handle the poisons. I wasn’t going to be strong enough. And my Dr admitted me onto the ward.

Today is another day. After an afternoon and night of tests, drips and painkillers they let me loose on the world again. All of my signs are fine; my bloods have been tested and are showing my body is coping with the chemo and radiotherapy. It’s just maybe my mind that isn’t. So this week they’re going to give me the same doses of everything, except the post-chemo steroid which seems to be the culprit for both my flying weekend and my crash and burn on Monday. That, they’re reducing the level of, so I don’t go through this again next week. It’s good that they can do that, limit the damage. It’s just sad that they can’t make me feel great all the time. I’m going to miss feeling normal.

I also get a therapist out of this. If I’m keeping too much in and trying so hard to be strong then I’m more likely to make myself ill, is kind of how my doctor put it. I don’t doubt that she’s right, either. It will be good for me to talk to someone who has no emotional investment. Someone who won’t be scared to upset me or be upset by some of the things that cross my mind in the middle of the night. Someone trained to help me to straighten things out so I can do this. Because I know I can do this.

So soon I’ll be taking another stop outside of my comfort zone, and instead of just saying I should accept help, I’ll actually take it.

all things like the big C aside, today has so far been a pretty good day.

i’ve been active, almost normal today. a little bit worried about losing my voice ever so slightly after waking up this morning, but we’ll see how that goes i guess. what i’m actually rather pleased about is getting out of the house. not just getting out of the house – but getting out of the house without my husband or my mum chaperoning me. i felt like a grown up, and i felt a little bit brave and i’ve not felt that good for over a week now, when i managed to get the bus back from the hospital and into town and met my other half for a cup of coffee before heading back home, pretending to be normal people again.

today was my first session learning how to make resin jewellery pieces. one of the things that was kind of on my old list of things to do this year. to expand on the mediums i’m able to use in the whole jewellery malarkey that i’ve found myself in love with the past five or six years. i booked the course back in july, or maybe in august before all of the Bad Stuff came to the forefront. i booked it as a present for myself for my upcoming birthday later this week. the dates were perfect for it being a present. so i jumped in and did it. up until yesterday i really wasn’t convinced i’d be well enough to go – i’m still sort of waiting patiently for the arrival of all the bad side effects i’ve been warned about. but this morning, i woke up, a little bit excited. and met one of my best friends to do a bit of crafting and mucking about.

the place we went to is the Ministry of Craft which operates out of the basement of Fred Aldous at 37 Lever Street, Manchester, M1. they do loads of courses there and i went to one maybe a year ago there to recap on how to use a sewing machine, also good. but today was more exciting because it was more in the field of what i wanted to learn for the progression of this ever expanding hobby of mine. i booked it so i’d have more scope to play with, more things to make. and i’m glad i did!

at this stage it looks like it’s going to be relatively easy going, once i have the materials at home. always a good thing. though like i found out last year when i was buying the silver clay and all of the firing things, and tools to sculpt and everything, the set up costs of anything are usually what drags me behind on getting on with things. like i still want to get into cold enamelling. or normal enamelling if i can ever afford that cute pink paragon kiln (i’d only get the pink one because i don’t like hot things, and it seems less intimidating than any other colour unless they start doing them in green). but yeah, i think my friend K is into this resin lark too, so if we can maybe split the costs if they start burgeoning we can do this together, as a Wednesday Crafting Day, before i go back to work again. i have a lot of ideas and i think she does too. so – optimistic.

i like feeling optimistic, and i loved having something to do today to take my mind far away from all the much too grown up stuff in my life at the moment. i have to wait until next week to find out of any of my creations actually work in real life – they might all be complete disasters! but i guess that’s part and parcel of learning, so excited!

i wish i’d taken some photos, but it didn’t cross my mind so much at the time. maybe at the next session on saturday, or maybe when me and K are cooking up the resin in our Breaking Bad gear at home in the next few months i can put a retrospective in.

but yeah. resin rules!

I’ve had a good day today. A different kind of day. An outing that was booked a months ago before I knew about my Cancer.

It was only a few hours out of the house. That’s all that has made a difference to me today. A couple of hours out of the house, minus the negative side effects I’ve been warned I may get, with a very good friend and a bunch of strangers and a teacher showing us how to make resin jewellery – something I was really getting excited about when I saw the course.

It’s good to feel like there are still normal life things going on. That my life hasn’t stopped suddenly and that I know that I don’t feel like my life has stopped suddenly. I’m still getting excited about my hobbies and I’m still brave enough to venture out.

I didn’t feel like an invalid today. The big C word was only mentioned casually in passing, not the topic of the day.

And it felt good.