sunshine in the garden...

Well hello! Isn't it a gorgeous day? Isobel and I have been slobbing around in the garden drinking tea and reading (Shantaram by Gregory David Roberts in my case - AMAZING book, thanks Carole & Kate).

Also took the rabbit out for a stroll - here he is in action:


Haven't really been on top form in the last two days...here are my side effects so far:

1) STILL NO APPETITE especially in the mornings. I cannot stress enough how frankly disturbing this is. I am a girl who likes her food dammit!! Have been making myself eat nutritious things like smoothies and chicken soup. Appetite's slowly coming back now though; I ate a few squares - not the whole thing!! - of the caramel bar pictured below (a present from Chris and Judith :) thanks!)


2) Low-level nausea, helped by metaclopromide. Annoyed because I get this every time I think about the chicken and mango chutney salad I had on chemo day (ugh...see, am gagging a little now) and it really was an amazing salad. DAMMIT!

3) Stomach cramps and general strange feeling in digestive tract.

4) (I'm sure you really don't want to know this so I'm very sorry, but this is a warts-and-all kind of blog): constipation. Grrr. Tried a prune smoothie but alas could not bring myself to drink the thing. May feed it to father for dinner.

5) General tiredness - didn't get up till 1pm on Saturday oops....though to be honest this could well be due to general laziness and not being chivvied out of bed for once in my life. Also feel slight mental fog, probs because of tiredness??

6) Running craply - went for a run with the local running club this morning and instead of bouncing ahead and running at a fast pace I felt like I was running through treacle and just being REALLY slow - so frustrating. Perhaps this was down to not having breakfast. Will try another run later in the week and let you know.

7) Blasted hiccups - from Ondansetron and also from stomach's general odd behaviour.

That's all so far but I'm sure more will make an appearance at some point. I'm hoping the worst is over for the moment and will be until chemo 2 in 2 weeks. The family are trying to tempt me with yummy food e.g. roast duck and roast potatoes tonight - think it's working...

More lovely messages coming in - thanks so much guys :) can't promise I'll reply to everyone but I shall try! Oh and any suggestions for blog posts are v. welcome - e.g. if you want more info on anything I've covered so far, let me know! Planning a post on "the Hodgegoblin" soonish, but have no medical textbooks with me at the moment. More Wikipedia-ing I guess....

The first chemo

(Wrote this in Word in the car on the way home to Nottingham-town.)

Daddy-o has zoomed up to drive me and mother home – just over Tyne bridge now. Am praying I won’t get travel-sick; I normally have a robust stomach, but then I normally don’t have a lot of vomit-inducing drugs circulating in my system…

Yesterday was not the greatest day of my life – not the worst either but somewhere in the bottom 10. It all started off pretty well – Mum and I got to the chemo ward for 8.30, filled in consent forms and then went off for coffee at Olive & Bean (and shopping for new Converses - see below) while they were making up my tasty cytotoxic drug cocktail.

A note on this: I’m having ABVD chemo, the gold standard in treatment of Hodgkin’s.

A = adriomycin (more commonly called doxorubicin, but DBVD just isn’t as catchy is it?)

B = bleomycin

V = vinblastine

D = dacarbazine

I'm starting off on 3 cycles (i.e. 3 months' worth) of this before I have my second PET-scan and they work out where to go from there.

My lovely nurse put my cannula in, flushed it and then gave me a shot of anti-emetic (not sure but I think it was Ondansetron). First one was 540 ml dacarbazine on a drip - see above. My god I hate dacarbazine already…it makes your veins go into vasospasm so you get these crampy pains all along your arm. They put a sheet over my arm to keep it warm, which apparently helps a bit. Maybe next time I should take a heated blanket… They had to slow it down every time I complained about my arm hurting so it took 5 hours to drip in, starting at 11am and finishing at about 4pm. Fortunately the time was passed by eating a yummy chicken and mango chutney salad from Olive & Bean, bantering with visiting flatmates (thanks Minti and Sophie :)...), chatting with ward nurses and showing mother my interrailing pics from last summer.

After flushing that through with saline, and giving me some hydrocortisone (a steroid to help with inflammation I think) it was on to the ABV part which only took half an hour through the cannula. Adriomycin went in first. It’s an alarmingly red colour and yup my pee did go red. Or maybe rose pink…exciting eh. Bleomycin next, then Vinblastine. I didn’t notice any ill-effects at all – at that point.

We wound up with a load of paperwork and dishing out of anti-emetics (Ondansetron and Metaclopromide), thermometers and mouthwash.

Mum and I walked home after a quick trip to M&S to get ingredients for this recipe: http://glutenfreegoddess.blogspot.com/2006/01/salmon-pineapple-brown-rice-bake.html

We made dinner for Janet, Minti, Sophie and Lydia who popped over. Unfortunately I can’t talk about dinner anymore. In fact I doubt I will ever be able to eat/contemplate this recipe again because the nausea kicked in just before dinner. This is rather unfair because it really did seem like a nice recipe, but – tainted forever I’m afraid. (However, I think you’d like it, so do make it if you’re inspired.) First I noticed I wasn’t feeling v. hungry, then I noticed I’d gone kind of yellowy, then I tried to eat some dinner, gave up, changed into PJs and lay on the sofa watching Monty Python’s Meaning of Life. I took an Ondansetron, but 5 mins later we’d got to the part where John Cleese’s biology teacher is teaching his pupils about reproduction in the most cringeworthy way ever, and I had to rush out to be sick. I was just so shocked to finally find out the truth about the birds and bees…..only kidding, it was the bleomycin/dacarbazine/one of those bastards. V. irritated to lose my Ondansetron…got mum to ring the out-of-hours service who were great and told me to take a Metaclopromide, then an Ondansetron in the morning.

By this point I was feeling v. hot, cold, sweaty, fluey, tired…To be honest, I had a cold anyway and the chemo seemed to just accentuate and heighten it into flu/Black Death. (also the BNF tells me bleomycin can make people feel a bit shaky and feverish.) So I went and boiled myself in the bath and crawled off to bed.

This morning I felt awesome! I woke up at 8am, took an Ondansetron and then dozed off again. Maybe not 100% but so much better for a sleep…the only odd thing is that I wasn’t hungry in the slightest. Most of my acquaintances could tell you that after not eating anything since lunch the previous day, I would probably trample over my grandmother in my haste to get some breakfast. (Sorry Grandma, but there it is.) For some reason all I fancied was a cup of tea…then at 11am I thought well I should eat something, so I stole a lot of Janet’s salt and vinegar ricecakes. Mmmm I tell you they are GOOD. Had a bit of apple and cheese too.

I think my tastebuds are probably dying one by one; they feel a bit coated and dulled. I can’t really describe it but there’s a slightly slimy taste in my mouth. Something else I've noticed - though it might just be my imagination - is that my fingers feel a bit funny and numb, like pins and needles. Oh well peripheral neuropathy is another of the many side effects I can expect... yippee!!!

Got dressed and maquillaged, then the lovely mother and I went for coffee and a spot of shopping. Got my TypeTalk phone from social services this morning too – it’s so I can talk to the staff at the hospital when I need them, e.g. for advice about infections, because chemo infections can come on pretty fast. Being deaf I can’t use the phone and I don’t want to have to rely on other people all the time to ring for me. TypeTalk seems pretty workable (I called Grandma at home and learned that she is making me chicken soup tonight – just what I wanted!)

I had some soup and crackers for lunch. Stomach still a bit weird and I have a few cramps in my lower abdomen, but otherwise ok. Touch wood!! Rest of the afternoon spent pack-a-lacking for home and TLC.

Enough of this side-effects/daily life babble – now I want to thank everyone who has sent me e-mails, facebook messages, texts, cards, presents, offers of chemo-buddying, general love, hugs, kisses. They mean more than you know, honestly. And thanks for reading this blog – everyone is welcome to read it – it’s so you all know how I’m getting on. (And so I get famous. Don’t forget the fame….heheh.) THANK YOU :)

This is just a selection of all the lovely cards I've had:

Will keep y’all posted on how I get on at home in the next few days. Going back up for the next chemo in a couple of weeks – or maybe a few days before, as I think they want to measure my white cell counts and see how I’m doing against infections and all that. If peeps are around the North-East in the first week of the medic/dentist Easter hols, let me know….

Then again, the family might drive me insane so I might be back on Monday. Hoho.

My new running shoes....and breakfast

Here are my new running shoes:

Aren't they just beautiful??? Went for a run this morning (through Jesmond Dene) to christen them - unfortunately I was pretty slow, but I'll get there. I'm hoping to keep running through chemo, because the stronger you are the better you cope - and also I really don't want to get fat. That would just be the last straw.... I know most people think that chemo makes you lose weight, but apparently it can go both ways. So mother is under strict instructions to feed me delicious healthy food (which is what she does anyway, but this gives her licence to snatch chocolate from my greedy grasping little fingers. OH wait she does that too....OK mother is going to carry on as normal which suits us all just fine.)

For more info on running and chemo, have a look at the link "Running from Dr Hodgkin's Disease": it's inspired me to try and keep running like Jenny Goellnitz did, as opposed to lying in bed eating Mini Eggs for 3 months.... that might still happen though, so I'm not making any promises.

Today I have my FDG-PET-CT scan. I know - I hadn't heard of one either. Back to Wiki:

Positron emission tomography (PET) is a nuclear medicine imaging technique which produces a three-dimensional image or picture of functional processes in the body. The system detects pairs of gamma rays emitted indirectly by a positron-emitting radionuclide (tracer), which is introduced into the body on a biologically active molecule. Images of tracer concentration in 3-dimensional space within the body are then reconstructed by computer analysis. In modern scanners, this reconstruction is often accomplished with the aid of a CT X-ray scan performed on the patient during the same session, in the same machine.

If the biologically active molecule chosen for PET is FDG, an analogue of glucose, the concentrations of tracer imaged then give tissue metabolic activity, in terms of regional glucose uptake. Although use of this tracer results in the most common type of PET scan, other tracer molecules are used in PET to image the tissue concentration of many other types of molecules of interest.

Basically they'll inject me with some radioactive sugar (fluorine-18 fluorodeoxyglucose) and then the greedy little cancer cells will gobble it up for metabolism. Obviously the rest of my body will too, especially my brain and liver due to their high glucose uptake. The radioactive bit can't be excreted by the cells, so it remains in them until it decays and thus they show up on the scan. Not sure where the CT bit fits in - I think it makes it easier to reconstruct the images. Any radiologists out there who can give a better explanation please feel free to do so!

I'm going to be a bit radioactive after this and have to avoid kids under 16 (FINALLY! an excuse not to talk to Isobel....only joking :P) and pregnant ladies for 8 hours. My flatmate Jenny finds this hilarious and reckons I should use it to out any hidden pregnancies amongst my friends! I think they're all quite well-behaved people though.

Where was I? Oh yes - I'm not allowed to eat for 6 hours before the PET scan (i.e. from 11am today). This is very irritating because - as many people have observed - I spend the vast majority of my time thinking about food and when I can next eat it. So after my run I went into Tesco and got some mushrooms and other ingredients, and made this:


Gluten-free sausages, fried sweet potato with caramelised onions, baked beans (organic dahhhling), mushrooms fried in butter and garlic....and obviously tomato ketchup. Aren't you jealous? Halfway through eating it all I was most annoyed to discover I had forgotten the eggs, so I bounced up and scrambled some (with a twist of black pepper and some parmesan). My GOD it was good.

I think I can cope with 6 hours of not eating now.

A bit of a low point....

I'm getting scared about my first chemo treatment now. It's this Thursday at 8.30am. I know - early! I said, "For god's sake I have cancer - could you NOT make it a little later?!" but that didn't work - they all just laughed at me and my haematologist said, "WELL Rosalind, the sun does rise before 8.30, you know. I bet you haven't got up that early since A-levels..."

Which for the record is so untrue. I just like my sleep...

Have been on a slight emotional rollercoaster in the last couple of days. Initially I was coping by being very hyper and talking really fast, which everyone found a bit scary. Then yesterday I got v. down and grumpy (partly to do with the sun going in before I could make the most of it - how British of me). Everything came to a head when I had a small yet dramatic nervous breakdown last night - brought on by an attack of absent-mindedness with the stove and some Tupperware. Managed to get hot melted Tupperware all over self (well just fingers and toes) THEN started crying hysterically and Georgina had to come round and sort me out. She and the flatmates were all wonderfully sympathetic and told me I was due a breakdown anyway.

Breakdown was cured by a lot of chocolate, washed down with a Kir and then many mojitos and Amaretto Sours at Zoe's birthday party (Zoe if you're reading this: HAPPY BIRTHDAY DARLING and thank you for an awesome time!!) and then out dancing and taking lots of narcissistic photos. And today instead of being hungover as I deserved, I had a lovely trip to Durham to see Kate (HELLO YOU!!) and her boyfriend Jon who cooked us all a mean Sunday roast.

Unfortunately I hit another low point about 2 hours ago and got all scared about chemo again. I reckon the problem here is fear of the unknown - I'm hoping I'll be fine once I have the first treatment and know what I'm dealing with. I'm just worried about all the side effects: how sickI might feel, losing my hair, being grumpy, being really tired, getting pins and needles, screwed-up lungs, screwed-up heart, red pee (ok that one will be a bit of a novelty.) Also I strayed dangerously far down the path of thinking IT'S SO BLOODY UNFAIR I HAVE TO BE DEAF and HAVE COELIAC DISEASE and NOW CHUFFING CANCER TOO I'M TOO YOUNG FOR THIS ROOOOOAR ARGH!!!! Anyway would probably have cried myself into a coma if not for Lydia who came on MSN and bolstered me up with this great analogy.

Lydia says:
you know that story in the bible about god walking in the sand beside you?
Roz says:
eeee?
Lydia says:
when there are 4 footprints?
Roz says:
the footprints?
oh yes
you can be my god
Lydia says:
yeah well there wont be 2 footsteps there will be a TRAIL COS I WILL BE DRAGGING YOU

On further research it would appear that we are both ignoramuses; the story isn't from the Bible - it's a poem by Mary Stevenson (posted here for other ignoramuses):

One night I had a dream.
I dreamed I was walking along the beach with God
and across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints in the sand,
one belonged to me and the other belonged to God.

When the last scene of my life flashed before us
I looked back at the footprints in the sand.
I noticed that at certain times along the path of life
there was only one set of footprints.

I also noticed that it happened at the very lowest and saddest times of
my life. This really bothered me and I questioned God about it.

"God, you said that once I decided to follow You, You would walk with me
all the way but I noticed that during the most troublesome times in my life
there is only one set of footprints in the sand.
I donÕt understand why in times I needed You most You would leave me."

God replied,"My precious, precious child, I love you and would never leave you
during your times of trials and suffering. When you see only one set of
footprints in the sand it was then that I was carrying you."

Well I'm not in the least bit religious (the last vestiges of any faith I had were probably stripped away when I was going PLEASE GOD PLEASE GOD DON'T LET ME HAVE LYMPHOMA but got it anyway) but even I find this pretty comforting. Anyway who needs God when you have a load of awesome friends and wonderful family?

*waits to be struck by lightning*

Am now under strict instructions to remember Lydia and the feeling of her dragging me next time I feel depressed. Also am off to eat some mushroom risotto made by Janet and Jenny :) Until next time....

What I did with my hair....

Back again the same day! Goodness I'm keen....well actually I'm just waiting for my lovely lazy Italian friend Gaita to get here so we can go swimming. I also have a jar of Green & Blacks chocolate hazelnut spread in my room, and a bar of Hotel Chocolat chocolate (73% cocoa). About 10 minutes ago I had the bright idea of dipping a bit of chocolate into the hazelnut spread .... well, enough said. I have now eaten about half the jar and will probably sink in the pool like a dead whale (do they sink or float?) SO am trying to distract myself from the chocolate by writing away...

The first question I asked the haematologist on Friday 13th was "Is my hair going to fall out?" She grimaced and said "Yes."
To which I replied, "BOLLOCKS!"
I am quite vain about my hair - it looks like this (I don't normally pout this ridiculously, I promise - I blame the wine at the Halfway Ball.)



One of the booklets I read obsessively last weekend was called "Coping with hair loss" by Cancer Backup. Its advice was to get my hair cut short as soon as possible, as long hair falls out faster with chemo (gravity). I got very excited by this, so I took myself off to the hairdresser's on Tuesday with lots of pictures and told them to bleach it and chop it all off.

Here's a quick photo I managed to snap:



And this is me after! Good lord eh?? I look like a happy dandelion.


In fact this is all very liberating. Before this I would never have even contemplated chopping off this much hair, or going this blonde - but have always secretly wanted to!It's been amazing distraction therapy - obviously I won't know what it's like in chemo e.g. how fast it'll fall out/thin/whatever, BUT I tell you that Marilyn Monroe compliments make a girl feel better about having cancer...

I got my CT scan results on Wednesday, and I'm Stage 2A. Not the best news (we all want to be 1A don't we...) Basically it means I have 6 nodes altogether - the right supraclavicular one we all knew about (the one with the fetching biopsy scar), and then a little one on the left above the clavicle, and some more camping elsewhere in my neck, and a little one above my thymus. God knows where/what the thymus is - I'm a medical student and I have no idea. How embarrassing. It's somewhere at the top of my chest or in the mediastinum. I wasn't really listening because I was sneaking a peek at the CT report and guess what else they found??? Completely unrelated to any lymphoma shizzle?

I have a bicornuate uterus: as darling old Wikipedia (first refuge for all medical students) tells us:


"A bicornuate uterus, commonly referred to as a "heart-shaped" uterus, is a type of an uterine malformation where two "horns" form at the upper part of the uterus.

Pregnancies in a bicornuate uterus are usually considered high-risk and require extra monitoring because of association with poor reproduction potential. A bicornuate uterus is associated with increased adverse reproductive outcomes like:

1. Recurrent pregnancy loss. The reproductive potential of a bicornuate uterus is usually measured by live birth rate (also called fetal survival rate). This rate is estimated around 63% for a bicornuate uterus. ^[3]

2. Preterm delivery. With a 15 -25% rate of preterm delivery. The reason that a pregnancy may not reach full-term in a bicornuate uterus often happens when the baby begins to grow in either of the protrusions at the top. A short cervical length seems to be a good predictor of preterm delivery in women with a bicurnuate uterus. ^[4]

3. Malpresentation (breech birth or transverse presentation). A breech presentation occurs in 40-50% pregnancies with a partial bicornuate uterus and not at all (0%) in complete bicornuate uterus. ^[5]"

Spiffing. Absolutely spiffing. SO if chemo doesn't fry my eggs I will have a miscarriage or a low birthweight baby...oh well we'll cross that bridge when we come to it, as my dad said...

Next time: chemo/more on the Hodge/whatever twaddle comes into my head. xx

A really s*** Friday the 13th...

So, I'd had this lump in my neck for a while now - first noticed it before Christmas when we were baby clinical students learning how to examine lymph nodes. Thought nothing of it -anyway Christmas was coming up and I had a lot of turkey to eat. and roast potatoes. and chocolate. and mince pies. and syllabub. mmmm....

Then I was poking my neck (as you do) around the beginning of February and suddenly thought "HOLY MACAMOLY that's grown!!" To cut a long story short, I got fast-tracked through the NHS on a dizzying rollercoaster: GP > haematologist > ENT > biopsy under general anaesthetic > ENT. ENT was where I was sitting now with my mother as the surgeon said, "It's not good news I'm afraid - it is a lymphoma as we'd feared.....you have a type called Hodgkin's lymphoma."

THAT'S why you should never go to any medical appointments on a Friday the 13th.

If I'm honest, I already half-knew what it was and had got my crying in the previous three weeks. The unknown is a lot worse than the known...that's not to say my mum and I didn't both have a little sniffle outside the office later, while the nurse was off to get my notes. (So exciting: I have a hospital file now - just like the patients' Bible-like tomes I riffle through as a nosy medical student on my quest for knowledge...my file started off all thin with only one doctor's referral letter and is steadily growing fatter.)

Anyway we pulled ourselves together and went off to see the haematologist to discuss chemo (more on that later) and then to the medical school to discuss my time off. I'm going to have to resit third year - this was a bigger shock than the diagnosis. I'd somehow thought I would be able to do medicine AND have chemo - that notion was quashed pretty quickly. Chemo will apparently make me too tired and too immunocompromised to carry on with placements...oh well what the hell.

Then we went home and by this time I was terrifyingly hyper and scared all my flatmates. Packed quickly and got the train home with mother for TLC and to see my brother before he went off to Japan on his gap year. (am excited for him!! he's at the airport RIGHT NOW oh my!!)

This blog is just so I can keep everybody up to date on chemo/how I feel without having to repeat myself until my larynx wears out. and to remind myself what everything was like (one of my friends said to keep a journal or everything will be a blur in 3 months). Also so I can publish a book and make MILLIONS when this is all over.