Wednesday 29 April 2009

*hic* chemo #3 *hic*

dear lord I have hiccups!
I just hiccuped 10 times in the last minute. I kid you not.
That's 1 hiccup every 6 seconds. ENOUGH ALREADY!!

*holds breath*

This synchronous diaphragmatic flutter (whoo for Wikipedia) is due to Ondansetron - which means it might shortly stop being my new best friend. So far, though, we are very in love: I have had practically NO nausea this time!

Chemo #3 on Monday was pretty smooth, probably because of all my lovely visitors. Thank you Georgina, Beth, Bianca, Christine, Shal, Claire and Ruth! thank goodness you didn't all come at the same time or there would have been no room for the chemo patients! Also the dacarbazine drip wasn't as painful this time, which I think was because they got a good big vein. To give you an idea of timings: I arrived at just before 10am and had to wait - it was BUSY - until about 12.30 for my cannula, then my dacarbazine came up in its attractive lime green bag and went up on the drip at 1pm. Actually I think the dacarbazine preparation was the hold-up: they like to do it as late as possible so it doesn't irritate your veins any more than it has to. It breaks down in the light and the breakdown products are even more irritant than the original drug. yummy!!

That infusion took about 4 hours this time which is pretty good going. The other 3 went in quite fast too and we were away by 5.30ish.

Here is my drug dose info for any geeky medical students out there (you know who you are):

Ondansetron 8mg IV

Dacarbazine 690mg
Doxorubicin 48mg
Bleomycin 18750 units
Vinblastine 10mg

Ondansetron 8 mg (4 doses)
Metoclopramide 10 mg 3 x daily (if nauseaaargh recurs).

Don't try this at home though kids - all the cytotoxic doses are calculated on surface area! Though I imagine that this would be the least of your problems if you had decided to try chemotherapy at home....anyway.

Mother and I got the train home and I was HUNGRY by the time we got back. Grandma had made us a fantastic chicken sausage casserole which smelled great, but it tasted a bit different in my mouth and I found my appetite went quite quickly after the first few mouthfuls. I had a metoclopramide pill on the train and then an Ondansetron after dinner, which kicked in about an hour later. I had a lovely cup of ginger tea to tide me over in the meantime. Ginger tea is also great for nausea - I use lemon, ginger and ginseng teabags and grate fresh ginger in too - mmmm.

This time I noticed I got shivery and achey again like I did after chemo #1. I have a theory about this: my muscles (particularly my arms and back) were hurting from yoga on Sunday morning, and since they must have been rebuilding themselves they must have been quite metabolically active and gobbled up the chemo just like the cancer cells. I went for a run the day before chemo#1 and noticed that my legs KILLED that night. By contrast, I was in Wales before chemo#2 and only walked as far as it took to get to my next bit of Easter egg, and was in much better shape after chemo. Oh the irony!

This is all probably a load of b*******, or pure coincidence, but I shall try to take it a bit easier before the next one, and report back. Any other chemo experiences/theories out there?

Despite the muscle aches I felt pretty good the next morning - though lolled around for most of the day. And Grandma and I DID THE TELEGRAPH CRYPTIC CROSSWORD. I am actually stupefied at our genius. Well, her genius - she let me write in the clues, and I did manage to get 3 Down:"In this form, two sides are perfectly matched (9)" ---> ISOSCELES!! Finally, a use for Geometry!

Hair is starting to moult again - delayed effect of second treatment as I thought. May go for a mohawk or a total GI Jane this week.....

No pics today because my beloved camera died a horrible watery death on chemo day. I may well sue Buxton for making stupid leaky bottles. Am hunting down a replacement so the blog should be restored to its Technicolor glory soon enough.

Oh and in case you were worrying - I have not been holding my breath for the entirety of this post, because the hiccups stopped about half an hour ago. Thank the little lord Jesus.

Sunday 26 April 2009

a lovely weekend

Have had a fantastic weekend back in Newcastle! Annoyingly chemo#3 has been moved to Monday instead of Tuesday (because of clashes with clinics or something) so the span of my insatiable appetite has been shortened by a day and my & mother's carefully planned train journeys have gone a little pie-shaped. HOWEVER the sooner this happens the sooner chemo will finish whoop de doop!

True to form, I have had some great food this weekend - dinner at Bruges, a picnic in the park, rhubarb crumble with Desperate Housewives, and a glorious roast dinner courtesy of Kate & Kim (and Andrew who mashed the garlic mashed potato). Which reminds me: I have to pass on some of Kate's culinary wisdom to you all - mashed potato with garlic in is DELICIOUS!! use the squeezy garlic in a tube. MMMM am planning this for chemo comfort food...with cheese on top. Excited already!

Unfortunately have failed to balance all this gluttony out with any exercise other than a wonderful yoga sesh this morning....is about time I lost my appetite again if you ask me.

A sudden - though all too short - burst of relative photogenicity means I can show you what my newly short pink hair looks like:


The hair loss seems stable for the moment; not sure what this bodes but my guess is the next major fall-out will be in a few days (as a delayed result of chemo #2). Quite excited to see what I look like bald.

Off for pre-chemo beauty sleep.

Friday 24 April 2009

mangoes and chocolate chip cookies


I'm blogging from a TRAIN - oh the novelty of National Express WiFi!!! Am speeding northwards again for more blood checks and I daresay a fresh supply of backache-inducing G-injections. Meh. Anyway I'm sure you have been waiting with bated breath to hear how the 36-hour chocolate chip cookies turned out. I tell you now: they were the best chocolate chip cookies I have EVER eaten in my whole entire life. They are the kind of cookie you think would be impossible to make at home; they look so professional somehow, with appealingly cracked tops and crunchy edges and gooey middles. I ate three last night. At 10.30pm. Even Mother ate two - and another for breakfast this morning. (And now I bet she wishes she didn't have a daughter who blogs so honestly.)

We have the New York Times to thank for these - David Leite wrote this article last summer and it has slowly trickled down through all the food blogs to me (via Gluten Free Girl's adapted GF recipe). I won't bore you with another recipe since I basically used hers, but the big secret is to refrigerate for 36 hours. If you can stop yourself eating the raw cookie dough for that long. (I admit it: I struggled.) They are good at 24 hours, but at 36 they are sublime darling!


Oh and sprinkle a bit of sea salt on top to bring out the chocolate flavour. A note on the chocolate: I used Green & Blacks 70% cocoa and it worked pretty well. Michael wanted milk chocolate but you can't please everyone....tsk.

Last night, just before the cookies were ready, I realised I was shortly going to be very unhealthy and eat a lot - so in an effort to appease the coming guilt and balance out my diet a little, I ate a mango. This was a mango from a box that Jess sent me. (Instead of the Twilight DVD/books she was going to get me, before I beat her there. Sorry Jess....I just couldn't wait!! But thank you :) for the mangoes.) MMMMM these are also sublime mangoes. I have one in my packed lunch right now and am rather excited. I also have the last cookie. Life is good.

Unfortunately I still haven't worked out how to eat a mango in an attractive and delicate manner - does anyone have advice on this?

Right, back to cancer because that's what you want to know about: chemo #3 is next Tuesday, and my white cells are being checked today. I will most likely get the G-injections as default now, because of what happened last time. We can't really afford to have chemo delayed again. I do NOT like G-injections: they make my back absolutely kill, like bad period pain.

Side-effects have mostly settled down - the arm no longer hurts, only niggles. My appetite is back with a vengeance, obviously. The hair loss seems to have slowed a little, or maybe it's just not as drastic now the hair is shorter. At any rate I seem to have a lot of pinky blonde fluff left. Have taken to wearing headscarf to hide the bald patches. My mouth is starting to get a bit sore - gums bled a bit this morning when I brushed my teeth. Perhaps is time to start using the Corsodyl....hmm. Anyway now I am no longer convinced I have MS - thanks to a great GP consultation - I am quite serene. Like these mangoes all nestling together....

Tuesday 21 April 2009

my arm...

...hurts a lot. Stupid arm. Stupid dacarbazine. Stupid phlebitis (well that's what I'm guessing it is).

Which reminds me - I have been searching online and decided I WANT this top for when I go running aggressively:
This is a crampy burning sort of pain, going all the way from the base of my thumb to my shoulder at times, but mostly just sitting in my forearm squeezing and driving me absolutely nuts. It's even stopping me sleeping!!! Not a lot stops me sleeping; these are desperate times, people.

Whingeing aside, it is a very nice day and I have suddenly been inspired to start making these cookies, so I'm off to the Co-op to procure ingredients. And ibuprofen. Ciao ciao.

Sunday 19 April 2009

hair today, gone tomorrow!

Back again - I felt a hair update was needed, and indeed my hair has been a constantly-changing development in recent weeks! First there was the platinum bob which is already much missed. Sadly, after the last post where I said it was starting to fall out, it really DID start to fall out in earnest. I can't say I wasn't forwarned; all the info they gave me said "You WILL lose your hair, starting day 1 to 14 after your first treatment." Eek. And it did start at about day 15. I would run my hands through it and come out with a handful of blonde fluff. When I actually brushed it: oh dear lord.


After about a week of this I had lost pretty much half to 3/4 of my hair, and what was left was looking a bit manky. So I managed to get hold of some pink hair dye in Carmarthen (a Welsh market town, look you - and yet v.g. variety of hair dye. I was impressed.) And we dyed my hair - see photographic evidence.



This morning - after my run which should have given me lots of endorphins, tsk - I started a slow slide into a catatonic wailing state. This was for many reasons, including convincing myself I have MS as well... because something else really needs to go wrong with my body. This is a long story; an exciting mix of hypochondria and facial parasthesia. If any neurologists are reading this I WANT TO TALK TO YOU.

Anyway Mother managed to halt the slide by chivvying me from my bed of sorrow and downstairs to "do something about your hair". Readers, I was SHORN like a SHEEP with a pair of No.8 clippers. She dyed it a bit pinker too - is really quite vibrant now. Unfortunately I am not photogenic today and you will have to wait until I am, or until you see me in the flesh.

I would stay longer to chat but Isobel and I have a date with the television and Desperate Housewives - au revoirrrrrr.

Saturday 18 April 2009

home again jiggety jig

Sorry for leaving you all in the lurch back then - and on a rather negative note too. I then went on to have a migraine for the first time in 4 years that last Friday (GP reckons is due to stress and other factors, rather than chemo itself). So it was a bad few days all around. Fortunately I managed to calm down in Wales, with a few days of glorious weather sandwiching the week's very Welsh drizzle... and I ate a lot of Chocolate Utopia easter egg on Easter Sunday. Other Welsh activities include: walking, obsessive watching of Twilight DVD, obsessive reading of Twilight books, petting Tess the farm dog (see below), eating, taking photos, etc etc.


On Easter Monday after lunch the parents and I embarked on our epic journey up to Newcastle for chemo #2 - leaving behind Michael and Isobel (ALONE in a cottage in WALES - but they survived ok don't worry). Went in on Tuesday morning for chemo 2 and bloods. My white cells are back up to v. high numbers; total count was 14 I think. The chemo itself was pretty much the same as the first one - the dacarbazine took ~5 hours again. But BOY the cannula hurt this time!!
Returned to Wales the same day, getting back at about 1am....eesh we were tired. It was definitely worth it though to minimise the disruption to the holiday.


Side effects after chemo #2:
Nausea - much much less than before. Think we have the anti-emetics nailed now: intravenous Ondansetron before the drip starts, then metoclopramide willy-nilly on the first hint of nausea, then Ondansetron tablets for the next 2 days, before bed and on waking up. So I really haven't been feeling too sick, which is a relief.
Appetite - slightly lessened. Hard to describe but can only liken to being hungover: you want to eat to make yourself feel better, only to find you are slightly repulsed by food - Catch-22. Cravings more for savoury things e.g. green Pringles, pasta and tomato sauce, rather than chocolate.
Pain - in my arm veins from the chuffing dacarbazine. like an achey cramp.
Constipation - (sorry) self-explanatory; but I am eating prunes like there's no tomorrow.
Tiredness - slightly more noticeable this time e.g. not feeling 100% even after sleeping 10 hours. Resolved after a few days though; I even went for a run this morning! Still not running much better than a one-legged centipede but that could be due to general laziness yet again (and a week of lying around eating easter egg).
Hair loss - another post to come on this but I have now lost about 3/4 of my hair.

Back up to Newcastle on Friday for white-cell checking before chemo #3 on Tuesday 28th April.

Thursday 9 April 2009

It’s all gone Pete Tong

The parents and I went in as normal this morning after a wonderful breakfast at Belle & Herbs to kickstart the day. Had my cannula put in pretty quickly and my bloods were taken while we were waiting for the chemo drugs to be made up. UNFORTUNATELY it turns out that my white cells have decided to take a kamikaze nosedive and are now at something like 2 (instead of 3.97 as on Monday). My neutrophils in particular – which have to be at 1 for chemo to go ahead – are now 0.651, rendering me stupidly neutropenic….and thus wide open to infections oh the joy! So chemo #2 is off until this recovers (WCC above 3, and neutrophils above 1).

This is a perfectly normal complication, apparently; and to bring my white cells back up I have to have “G injections”, i.e. Granulocyte-stimulating Colony Factor, if my memory serves me correctly. Had an interesting insight into the life of a diabetic today, being taught how to inject myself (OW it hurts! Like a bee sting). I need to give myself 2 more injections, tomorrow and Saturday, which should hopefully poke that pesky count back up. The chemo has been rescheduled to next Tuesday.

The v.v.v.v. irritating part about this is that I am supposed to be going on holiday to Wales with the family (sans Tim of course who is in Japan and seems to be having a good time *waves*) next week for a nice relaxing Easter holiday – I know, not exactly the Maldives, but we like it….But now because of this we have to work out how the hell to get back to Newcastle halfway through the holiday, and how to get back, and whether to bother going on holiday at all. Dad may be having to drive me on a 600-mile round trip - eeeek! I am bloody fed up of cancer trying to fuck around with my life. Goddammit.

Profanities aside (sorry...), am trying to look on the good side of all this – at least I shall have a healthy appetite for my Easter egg on Sunday, instead of being vaguely nauseated by everything.

In the slightly longer-term: the parentals want me to move back to Nottingham for treatment, instead of having to bounce back and forth between two cities. I can see where they’re coming from: it will be much easier for them to support me if I’m at home. But I still feel like clinging to Newcastle like a stubborn wee leech – all my friends are up here and I like the doctors and nurses…AND I’m still paying rent on the house!! We shall see how it goes.

P.S. My hair is starting to fall out. It looks like we have a golden retriever in the car….don’t worry, nothing drastic like CLUMPS, but there is definitely more hair coming out than the usual one or two strands. Must stop pulling compulsively at it – makes me feel vaguely sick. :S

Off to scream into a pillow.

Tuesday 7 April 2009

Kate, risotto, Twilight and wine - oh and my white blood cells

Good news! My white blood cells are back up to 3.97 x 109/L (that means 39700000000 per litre of blood - I think) which is almost back into the normal range (4 - 11 x 109/L). My haemoglobin is now a normal 12.2 g/dL (normal range is 11.5 - 16.g/dL for a girl). I was going to be geeky and do a chart in Microsoft Excel of all this, but decided to save it for when I had some more results to actually plot.

Anyway all that means that my body has recovered from the last chemo, so chemo #2 can go ahead on Thursday. I can barely contain my excitement.

Last night Kate came up to keep me company - she brought all the ingredients for a mean bacon and courgette risotto (no photos, sadly; we ate it too fast). AND she brought me Twilight on DVD and I finally see what everyone was on about. The scales have fallen from my eyes. I am in LOVE with Edward Cullen....oh my!! We also drank our way through a bottle of wine in my spectacular fall off the wagon - however am now firmly back on.

Tonight I am going to stay with the grandparents for spoiling purposes, then returning to Newcastle with the parents on Wednesday night ready for chemo on Thursday morning. Then most likely home on Thursday afternoon. There - all my movements in case you want to blow me up...or stalk me. Au revoir for now!

Sunday 5 April 2009

birthday meals and afternoon teas - in pictures

Oops have been away for a while, sorry! Worry not, I am in the best of health - despite being more lumpy than the average person - and have been catching up with a lot of lovely people, including going for a meal for Jess's birthday last night. I was rather inspired by the risotto di verdure I had; it came with pretty much every green vegetable you can think of, and parmesan and cream. Here is the obligatory food pic to show you how green it was:


and here are we!


I AM behaving myself quite well on the alcohol front, possibly for the first time in my life. You are free to express your amazement... Had a glass of red wine last night but apart from that (and a G&T at lunchtime today - blame Georgina) I haven't really wanted to drink. There's no reason why I can't drink from 48 hours after chemo, but I just feel as though my liver has enough to do without trying to process Merlot as well.

Today the aforementioned Georgina came over for lunch and afternoon tea in the garden - as did my uncle and aunt and wee baby cousin (who is now 5 and would probably kick me for calling him a baby). We stuffed ourselves with scones and tea and clotted cream and I was annoying and took lots of photos of everybody. Small selection below:



clotted cream - mmm artery-clogging!

The star of the show was however the chocolate banana bread that Georgina and I made. It made a fashionably late appearance due to a loooonnnng baking time but goodness me it was popular! It was a bit crumbly because we couldn't wait for it to cool before we sliced it - in fact it was kind of grabbed at and eaten in hunks...

We used a recipe by Molly at Orangette but crossed it with a Gluten Free Girl chocolate banana bread recipe, and added white chocolate chunks (inspired by a wonderful-smelling but sadly gluten-y version at Atlas deli, which Georgina ate while I watched jealously and dribbled a little). Here is the result...

Sorry for the transatlantic "cups" instead of plain old English weights, but they're honestly not tricky to use - just get something say the size of a Moomin mug and make sure you use that one to measure everything out.

1 cup granulated sugar
½ cup unsalted butter
1 teaspoon vanilla extract
1 large egg
2 ripe/practically black medium-size bananas
2 spoonfuls natural yoghurt
1 cup Dove Farm self-raising gluten-free flour
1 cup Juvela GF bread mix (no reason why you couldn't use 2 cups of either, but I wanted to mix it up a little).
1 tsp baking powder
2 large heaped tablespoons of cocoa powder
1 cup white chocolate, cut into chunks
½ cup dark chocolate chips
a handful of ground almonds for the hell of it
Small chunks of candied ginger - as much or as little as you like, but do put some in because it is SOOOO GOOD.

Erm what did we do next....
  1. Cream the butter, sugar and vanilla in a food processor because that is the best part and you get to eat some when it ACCIDENTALLY goes up the side. Then add the egg and beat some more.
  2. Mush the bananas in a bowl with some yogurt (pretending that they are Hodgkin's lymphoma and you are ABVD splatter splatter DIE!!! ahem if you are normal you can omit this role-play). Add to the food processor and whizz.
  3. Mix the flours & ground almonds, baking powder and cocoa powder together in another bowl, then add them bit by bit to the rest of the mixture.
  4. Fold in the chocolate chunks and chips, and the candied ginger.
  5. Empty out into a lined loaf pan, stud the top with walnuts, and then lick the bowl.
  6. Bake in the oven at 170°C for agesssssss - it must have been an hour - until a skewer comes out clean. You might want to put a bit of tin foil over the top to prevent the cake coming out too brown - ours was maybe slightly burnt-looking, but no-one cared because it tasted buonissimo.

I really think I should stop talking about food - have just had Welsh rarebit/rabbit/whatever with the family, and eating is now over for the day. I feel quite sad. So moving on! To side-effects from chemo-schmemo. These have pretty much all gone now, except for a few odd pains in the drip arm, a bit like when the dacarbazine was going in. Not entirely sure what they are; phlebitis maybe!? The appetite is most evidently back, and I still have all my hair.

Am slightly nervous about next Thursday already but trying to stay positive and not psych myself into being sick BEFORE the chemo, which is apparently surprisingly easy. Any ideas for chemo entertainment welcome - so far I am planning on making father dress up as a jester and dance for my amusement.

Wednesday 1 April 2009

April rising

I toyed for a moment with the idea of telling you all that my doctor rang up this morning and told us that they got the biopsies mixed up and my lymph node was only a reactive one after all and I don't really have cancer.....but then I decided that it was funny but too cruel. So no April Fool today!

Despite really having cancer I feel pretty fine'n'dandy today. Just made myself a coffee and have been reading the student BMJ - sudden attack of geekishness. And the lovely Caroline who I haven't seen for yonks is coming round at 12. Perhaps I should get dressed.

Side effects all seem to have settled down for the moment. I've been off all anti-emetics for a couple of days now, and feel practically 100% (maybe sleeping a bit more than usual, if that's possible!). And it could be my imagination but I swear the supraclavicular lump is shrinking....maybe?? DIE LUMPY DIE!!!!

On the running side of things: I went for a run with Izzy yesterday and it went well I think. Unfortunately I didn't get any sprinting in because we had to keep stopping for her to roll her tracky bottoms up...*grinds teeth* HOWEVER she IS going to be the next Paula Radcliffe and I will be famous as A) her personal trainer and B) author of a best-selling book on how to have cancer and be funny (or annoyingly jokey about something serious).

Also Izzy would like everyone to know that she took the photo in the blog header - the flower one on the right. The flower in question came from the Hibberts' garden: isn't it beautiful? The fabric "Roz" is from a card by the v. talented Helen. I merged them after a long and frustrating struggle with PhotoShop. Thank god I'm not an architect/graphic designer or I'd be too grumpy to live.

More later but right now I am acutely aware that Caroline will be here in approximately 15 mins and I am wearing v. old pyjamas and a jumper with yogurt on it. Laters!

.......................................................................................................................

16.25pm update - this is Caroline (she of the cool red hair) eating our lunch in the garden...


And here is a close-up of the carbonara. I know, I know - I'm getting so boring about food. But am just so excited about the return of normal hunger and normal food obsession, so you'll all just have to put up with it for a bit. We used:
red onion
olive oil
Comb's Farm dry-cured smoked back bacon
peas
2 egg "reds" (as Gaita calls them), mixed with a splash of milk, black pepper and Parmesan
Schaer GF pasta

and a sprinkle of Parmesan on top.


mmm i like food. i especially like Italian food so here is the gluten-free pizza I had last night (base home-made with Juvela flour/bread mix - thank you Beth and Christine for inspiring me to do that!) CHECK OUT THAT BASE! it has AIR BUBBLES! *quivers*


Enough of this food fetishism - am off to tidy kitchen, put laundry out etc etc...