follow up

Just realised I failed to actually update you on how my follow-up appointment went; with my ominous silence, you'd all have grounds for believing I'd had a horrific relapse. However it was rather uneventful, mainly because I was so hungover I couldn't speak, let alone formulate questions to ask. We established, though, that I have no lumps anywhere and am in remission - YAY - and will need a CT scan in 3 months to confirm this.
Once the hangover had abated I decided to email my consultant with a list of the unasked queries. This is the gist of his reply:
1. I can get a flu jab and Hep B booster
2. Yes I can get my ears pierced...
3. My chances of getting AML (acute myeloid leukaemia, a risk of chemotherapy. I blame the Oxford Handbook of Clinical Medicine for giving heebie jeebies) are thankfully pretty remote - "probably less than 2%".
4. Now that I'm in remission, my chance of relapse will get less and less as time goes on - at present it's about 20% (pause to gulp). This is the one I tell myself not to worry about - there's no point frightening yourself to death about something that may very well never happen. Also, statistics mean nothing to the individual - 20% - one in 5 - 20 in 100 - 2 in 10 - what's it all about??

And on that note I feel we should move swiftly onto FOOD, more specifically THIS:


Which was a fantastically good almond-praline cheesecake - if you couldn't tell by looking at the photo. We have Emily to thank for its (all-too-brief: it was devoured pretty rapidly, mostly by yours truly) presence on this earth. Here she is, eating the main course (hot Indonesian salad):


The most exciting thing about this cheesecake - from a gastronomic and coeliac point of view - was its base. The base came from my frantic Googling upon realising that I had no time/inclination to make gluten-free biscuits (my normal cheesecake base). Buying any was out of the question - I wouldn't feed TruFree or Freefrom digestive biscuits to my worst enemy. So Google found this cheesecake crust recipe which was a) really easy and b) so addictively almondy-buttery-sweet that Emily and I were having to stop ourselves from eating it all before it went in the oven. Sorry no full cheesecake recipe tonight (I can provide one on request but am a busy little bee right now, buzz buzz).

Also, Emily's brownies = out of this world. She puts orange chocolate in them....

I went home this weekend and had a lovely time - and Tim hasn't died of fresher's flu yet, which is reassuring. It says something about how good home is that even after an enforced 6 month stay there (with escapes for, um, chemo) I still want to go back in term time...


I love October. mmmm crispy leaves!!!!

Ta ta for now: I have a massage party to attend. Intrigued? So am I! Au revoir!

back to the grindstone

Apologies for the scandalously long absence from the blog - it turns out third-year medicine the second time round is actually rather time-consuming. Despite my panicky predictions that I'd have forgotten everything, it all seems to be coming back quite easily (with the exception of ECGs which always have been, and always will be, a bitch). Alas, my hoped-for brilliance in the area of lymphoma has been sadly lacking; we had a seminar on "Neck Lumps and Bumps" to which I went, swelling with geeky pride at the thought of people feeling my neck scar tissue (which hopefully still is scar tissue, not cancer returning to ravage me again). Once we'd got past all the usual run-of-the-mill thryoglossal cysts etc., we moved on to malignant causes and the consultant said, "What do lymph glands do? Anyone?" There was a deathly silence then I - yes, the one who'd had a lymphatic cancer - piped up, "Drain things."

Which turned out to be the wrong answer because they really trap things like pathogens and keep them there for the rest of your immune system to come and be activated by. Embarrassing. SOOOO embarrassing.

That reminds me of the time my brother asked me what Hodgkin's lymphoma was actually a cancer of - and I said, "Ummmmm well, Michael, I'll have to get back to you on that one," because I hadn't a clue. Now I know that lymphoma is a haematological neoplasm which "begins in the lymphocytes of the immune system and presents as a solid tumor of lymphoid cells. They often originate like balls in lymph nodes, presenting as an enlargement of the node (a tumor)." (Incidentally, lymphoid leukaemia begins in much the same way but doesn't form the solid lumps that lymphoma does - instead, the cancer just circulates in the blood and bone marrow.) Thank you, Wikipedia. There you go, Michael. Oh and HAPPY BIRTHDAY!!

Apart from swotting up to unprecedented levels of knowledge (Janet has started to freak out every time she comes in and finds me working; I don't know what's wrong with me!!) I have been chilling out at weekends - mainly with gin - and hosting the usual team of DELTA Great North Runners.


They all seemed to have fun - if one can ever truly have fun running a half-marathon - and have raised wonderful sums for DELTA (to sponsor any of them, go here). I was seized by Great North Run nostalgia and have vowed to run it for the third time next year, though I am sure the enthusiasm will wear off pretty soon. In other news, I've been surfing at Tynemouth (SO FUN!!!) and to the Alnwick Food Festival to buy the venison steak which became possibly one of the best meals I've had at uni. My guilt at eating Bambi's mummy evaporated after I'd chewed the first mouthful and realised how good it was. Yet another photo that fails to do the food justice:


And in hair news - well, it's certainly growing! The longer it gets the more tricks it tries to pull - have had some v. odd tufts and fronds and cowlicks happening, grr. See below; I had to pose for AGES to get a halfway-decent photo to show you and yet I still look like I'm contemplating a colonoscopy or something equally unpleasant. Oh well, look at the hair, the HAIR - squeeeeeeeeeee isn't it long!!?? (Still no follicular action in the irradiated bit though alas...)


Follow-up appointment is next Wednesday - not entirely sure what will be happening but I'm betting some blood tests are on the cards. This makes me as skittish as a young racehorse after what happened the last time someone tried to get blood out of my collapsed flaccid chemo-veins (4 ATTEMPTS, people) but I suppose I will have to man up. There will probably be a CT scan too but later on...will keep you posted, though I might be a wee bit busy! Updating the blog doesn't seem to fit in so well with normal daily life as it did with chemo-time - odd, that.

Now I have to go and decide what to do with my Friday evening.... the options are: collapse into bed and refuse to move for a good 14 hours; go out drinking with fellow third years to forget cardiology; hang out with fourth year friends who have exhausted themselves from mid-week partying; gym, bake, eat and sleep. Choices choices...

P.S. I was very very chuffed to be shortlisted for the Raising Awareness of Lymphoma Award and to make the final 6! Unfortunately couldn't make it to London for the award ceremony which I suppose is just as well because I didn't win. Haha, only kidding - I know it's really the taking part that counts and am very grateful to my nominators (plural!!! who'd have thought?!?) For details of the event, visit the Lymphoma Association's website.

a damson good time

If you find cancer more interesting than food, look away now. I feel a recipe post coming on...

We have lots of damson trees in the orchard which is very fortunate as they could well be my favourite fruit; especially when the weather is refusing to behave in a suitably end-of-summer way and I am in need of damson crumble. Emma and I made a yummy one yesterday after reading Nigel Slater's Kitchen Diaries and it was fantastic - ruby red bubbling damson nectar and an oaty crumble topping that slowly sank into and absorbed the juice. But today I needed pastry. (Hey, I ran 4 miles this morning - I'm ALLOWED.)

Previously I have been wary of making gluten-free pastry, instead preferring to leave it to my grandmother, who is the Pastry Queen of Yorkshire. However, after a tentative attempt in Devon I now feel up to the challenge - so damson almond tart here we go... Alas my amateurish home photos in hideous lighting really don't do it justice.

We first had this down in Devon a fortnight ago, when my mother and grandmother rustled up some pastry, filled it with frangipane mixture and topped it all with cherries. Oh my... I just don't have the words to describe what a buttery almondy juicy crisp delight it was. I had 3 helpings at dinner and it was equally delicious cold with coffee the next morning; for once I didn't feel left out as everyone else chowed down on their croissants. I'm telling you, you just have to make it and try it for yourself - if you don't have damsons then indeed plums/greengages/cherries would work.

Am becoming a rapid convert to using Dove Farm gluten-free flour for pastry - it really does work out well, especially if you chuck an egg in to hold it all together better. If you aren't coeliac - well go and use your daft gluteny flour then if you really must. Tchah.

For the pastry:
200g self-raising Dove Farm gluten-free flour (Grandma Bramham's tip - SR keeps it nice and light)
100g butter, chilled and cubed
1 egg

For the frangipane filling:
100g butter
100g sugar (I guess caster would be best but I used granulated because the Swiss Family Mad have no concept of a well-stocked cupboard with a variety of sugars. We didn't even have TONIC water tonight. I ask you. I had to have my gin neat.)
100g ground almonds
1 tsp almond extract (optional)

2 or 3 good handfuls of damsons - no idea what weight I used but you need to halve and stone enough to cover the surface of the dish.

a sprinkling of sugar

Start by making the pastry: rub the butter into the flour until the mixture resembles breadcrumbs. Crack the egg in and mix together until it forms a ball you can clump up and put into clingfilm. Pop it into the fridge for about half an hour to rest a bit and absorb the water - so you have a better chance of rolling it out without it cracking all over the place. (Gluteny folks: your pastry probably behaves itself a bit better because of the nice stretchy gluten protein providing structure. Appreciate it!)

While the pastry's chillin', get on with the frangipane mixture. Beat the butter and sugar together until creamy, then crack in the egg and beat some more before you stir in the almonds. Add the drop of almond extract for extra almondy depth and flavour - mmmm.

Roll out the chilled pastry and line a tart dish (about 20cm across). Abandon all hope of doing this in one piece like Snow White does - just patchwork it together. Prick the bottom of the pastry case with a fork, line with baking parchment and fill with ceramic beans/dried chickpeas/similar. Bake blind for 15 mins at 200ºC or until it's a nice golden-brown colour.

Remove from the oven and spoon in the frangipane mixture (try not to eat too much of it while it's sitting around - that stuff is GOOD). Don't worry if it doesn't look like much - it will rise to cushion the fruit. Stud attractively with the stoned damson halves, packed as tightly as possible. Sprinkle with a bit more sugar and pop back in the oven at about 180ºC for 35 - 40 mins, or until the frangipane is golden-brown and crispy, and the damsons are bubbling a bit.

(Looking at the photo again I have a feeling I may have taken mine out a little early... I couldn't wait to eat it. BAD ROZ!)

Serve with lightly whipped cream into which you have stirred a teaspoon of vanilla extract -----> nirvana.

And now there is no tart left. It has all been eaten. I feel bereft... oh well, probably best for the old waistline to be honest. Besides, Mother and I got through a good quarter of it each. I'm off to read Lord of the Rings in bed and digest.

Let me know when you get bored of the minutiae of my daily life... though I hope to have some big cancer updates for you soon: the follow-up and scans are going to be mid-September. This waiting around is frankly rather unsettling after the hurlyburly of treatment - surely this is negligence!? Or reassuring? I cannot make my mind up... though at present I have plumped for the latter.

Now go forth and bake!

we're all back from a summer holiday and wishing we weren't ...

... and blackberry-picking to cheer ourselves up.


Have returned from 2 glorious and long-awaited weeks in Devon, cursing Langage Farm clotted cream for my expanded waistline. And as I write the rain is lashing the house in wind-shaken sheets that make me long for Tuckenhay sun ... (not that that was very reliable either but at least it always brightened up in time for an evening cider). I have decided the only way to live a SAD-free life and stop the weather tossing my mood around like a cat with a mouse is to MOVE TO ITALY. When it rains there at least I will be able to stay in the house and eat gluten-free pizza - which of course will ONLY go to my bust instead of my bottom. That's Italy for you.

As planned, I got the train down to Exeter after radiotherapy finished, taking with me a raging sore throat and an exciting new bald patch. The throat calmed down eventually after about a week to my joy - scones and clotted cream time!! However, a surprising twist: since I decided to rashly ignore my radiologist's advice and swim in the 3 pools available in Devon, I ended up with a truly spectacular outbreak of irritant contact dermatitis (eczema) from chlorine. But not on my irradiated neck- oh no, it was on MY FACE. Readers, I was hideously deformed for at least 4 WHOLE DAYS. I was scaly, erythematous, swollen, tiny-eyed and itchy as hell. It was not good. (I took many obsessive dermatological photos but I wouldn't want to give you nightmares, so I won't put them up. Seriously: I looked like an orc/Harry Potter after a Stinging Hex.)

This led to a parental banning from the pools and thus left me with no way to work off the clotted cream except by walking in FitFlops (or ConFlops, as Michael calls them) and going to the antiquated gym. So I passed the time avoiding mirrors like the plague, reading, making ratatouille and hanging with Georgina who came to visit.

Then I invited myself to the Devonshire Chez Weatherdon to escape from a fate worse than death - camping. Yes, the Swiss Family Mad headed off into the wilds of Dorset with a tent. I don't camp, so I fled to a better life; one full of paella, sea swimming, amazing pubs, blackberry-picking, freckly sisters and flapjacks. Unfortunately my camera battery ran out before I could build up an adequate photographic record so these will have to do...

Alas, it was all too short and so Monday evening found me back in Robin Hood country again... where I have been baking blackberry muffins with BJ gals and trying my darnedest not to feel tired from radiotherapy. I have been on TWO runs of 4 and 3 miles. So there.

We have also been celebrating Michael's freakishly good GCSE results (Pizza Express tonight! Am taking pre-prepared home-made gluten-free base and am very excited at prospect of first English restaurant pizza in 4 years.)

Throat has been OK - just a slight soreness when I forget myself and take big mouthfuls. Good way to be more ladylike... dainty nibbles, Rosalind! Voice still a bit husky with annoying tendency to shoot up and squeak like teenage choirboy. Neck is slightly red and itches from time to time. Oh and the face reaction settled down eventually after lashings of E45 cream and aloe vera. I have absolutely no idea why it exploded like that - perhaps the whole of my skin was up in arms about the radiotherapy damage and decided to teach me a lesson for messing with chlorine.

Here's a bit of a lymphoma shout-out - the Beacons of Hope Awards are taking nominations until Monday, so if there's someone you think should get an award, go tell the Lymphoma Association here! I nearly got Isobel to email them and nominate me but felt that would be a little dishonest and I should wait for true appreciation, if I do deserve any!
UPDATE about 2 secs later: blumming hell! have just got an email from them and I AM NOMINATED!!!! no idea by whom but thank you thank you thank you :)

I hope you all have a great Bank Holiday weekend, weather permitting... Will be returning to third year on 7th September (a week late so I have more time to recover my strength and grow some more hair) despite failing to muster up any enthusiasm for the prospect. Oh well... maybe it will come eventually once I get back into the swing of all things medical. Off out now - pizza here I come! Until next time my dears.

a bitch of an itch

Rarrrrrrrrrrrrrrrrr the promised skin reaction has arrived!!! It started a couple of days ago when I idly wondered why my neck was itching and put it down to a stealthy yet frenzied mosquito attack while I was asleep. Then I went to put my perfume on (Paul Smith Rose, if you were wondering) and dab it behind my ears and had a massive "D'OHHH!" moment - it was obviously a skin reaction to perfume. The radiology team did tell me not to use any perfume but I thought that the skin around my ears would be safe. Evidently not. Now the skin on the entire circumference of my neck is itchy, blistering, reddened and thoroughly hacked off.

Well that's what it feels like. When I try to get a photo of this it looks disappointingly ordinary, if a little pink.Check out those bright red earlobes though! Good job I didn't get my ears pierced after all.... oh well maybe I can do it later when the whole cancer malarkey is over, and MAYBE Father will buy me some nice pearl earrings! Isn't he a nice daddy........ (haha get out of that one Daddy-o).

And you know what else? My hair is falling out too. Now don't worry - just a little bald patch at the back where it's been caught by the radiation on its way out. Taking a photo of this was pretty damn difficult but I managed in the end. I'm just a little annoyed at this as I am fiercely overprotective of the hair that's coming back. I have a cowlick at the front. yes I have enough hair to have a COWLICK. This is SO EXCITING!


As for the Jaws & mincing machine lovechild - I have worked out how to shut him up for a couple of hours. 2 soluble paracetamol + 2 ibuprofen + oxetacaine = silent throat and opportunity to eat without too much pain. Hurrah!! Am now off out to have dinner with the grandparentals as is my lovely Grandad's birthday. Ciao ciao :D

ribbit ribbit

Say hello to the frog in my throat:


He's not as cute as he looks. Little bastard.

Actually I tell a lie: there was a frog in my throat until a few days ago when he was replaced by the lovechild of Jaws and a mincing machine. Now my every gulp cuts like a knife as various inflamed structures rub together, then I can feel each bolus of food inching its way down my radiation-irritated oesophagus. Unfortunately I'm still ridiculously greedy and haven't yet learned to take smaller mouthfuls, so I suppose it's all my own fault. Also I refused to give up gin and wine until it got really bad. Now I am teetotal (nearly. I still have the odd spritzer or weak G&T. It is the holidays, after all.)

I've been given some oxetacaine (anaesthetic) to drink 20 mins before meals. It tastes like toothpaste and to be honest I don't notice that much difference to the pain. Gargling with soluble paracetamol seems to take the edge off though, and I've become slightly addicted to Strepsils Extra. Am also self-medicating with frappuccinos (definitely the most exciting way to get a morning dose of caffeine.... yesterday I accidentally leant on the pulse button while the lid was off, and thus gave myself a coffee facial and redecorated the kitchen, to brother's amusement). Breakfast is now a smoothie and lunch tends to be soup/scrambled eggs/something squashy, and dinner follows a similar pattern. Lots of lasagne, risotto, banana custard, and icecream - am not complaining.

I had my 13th treatment today - it was exactly the same as all the others, except for seeing a dietician afterwards. This was a slightly pointless exercise as I am apparently the perfect weight (well I beg to differ - have you SEEN the size of my arse??) and doing rather well, though I should remember to take my painkillers before meals. I confess I have been lazy in doing this but apparently it will make a big difference. I have no other side effects as yet apart from a bit of redness around the clavicles. Not tired yet. Nope. No sirree.

Oh and today I finally plucked up the courage to ask if I could take a photo of the torture chamber:
but this photo simply doesn't convey the impressive majesty of the machine, especially when you have your head bolted to the bench below and the thing is slowly and menacingly revolving around you. Though I am now so used to the mask that I start to have a little doze as soon as they bolt it on.

I have to say, being irradiated in Newcastle has been a far cry from the lonely existence I imagined I'd be leading - have had Gaita around (see ratatouille below), visits to Mavis and her lovely friends, a cinema trip to see Coco avant Chanel, a sunshine risotto with Zoe (mmmm - roasted butternut squash, goats cheese and fresh sage. That girl is a genius.)

ratatouille and G&T - two of my favourite things

Then after Edward's birthday celebrations......the Swiss Family Mad arrived from Nottingham, took over my house and drank all my maple syrup. Despite this we had good family banter: a trip to Craster, lots of banana splits and a night in watching The Others and scaring ourselves silly. Now my grandparents have caught the torch of Entertaining Roz and are holding it high (mainly by feeding me - we had stewed Victoria plums with vanilla cream tonight. arf arf. They slip down nicely).

I only have 2 more treatments left and I'm getting the train down to Exeter after the last one next Tuesday - if I don't update before then, you can rest assured I am FINALLY getting a holiday down in Tuckenhay: swimming, hanging with the family, eating and boozing (throat permitting), bugging Georgina, and generally chilling aahhhht. It's been a while since I've totally relaxed and I am really looking forward to it.

Will probably be back on before then though, just for another delicious soft-food update...

radiotherapy-schmerapy

First off, congratulations if you manage to read the title of this post out loud without swallowing your tongue. I'm a little stuck for pithy title ideas and that was the best I could come up with. It's no "She sells seashells on the seashore, but the shells she sells are seashells I'm sure", but still a bit of a challenge for the old hypoglossal nerve.

Really, though, "radiotherapy-schmerapy" fits the bill exactly. It really isn't very exciting. I've had 3 so far and the entire routine goes like this: I walk the 1.2 miles to the Freeman at a random time each day. I report to reception and wait around for a bit, idly leafing through glossy home improvement magazines and wondering why cancer patients get given the magazines with typos in - is it to stir up a bit of fight for life in them? Or sink them into an even deeper depression: "Oh God, another misplaced apostrophe, I might as well give up now. Farewell, cruel world!"

Foaming a little at the mouth from grammatical errors, I am summoned into the radiotherapy room, where I announce my date of birth, pop my hearing aids out and lie down on the bench under the scary machine. The mask goes on with lots of horrible pops as it's bolted in and I wiggle my head desperately to find the comfiest way to arrange my face. The lights go dark and the radiographers move the table about to line up the little red lights with the dots on my mask and thus position me correctly. Lights come back up and they tap me twice on the arm to tell me they're leaving the room. I hum non-committally in reply, as the mask does rather eliminate one's capacity for speech. Then I lie there counting the seconds while the machine moves round me slowly. Today the mask was only on for 5 minutes and 5 seconds.

Then the technicians rush back into the room and release me from my facial prison. I bounce back up, jam the hearing aids back in, say cheerio and toddle off home. I will get photos, I promise - I just haven't had time to so far. It's all very "wham, bam, thank you ma'am", only with dangerous levels of radiation.

No side effects as yet, though after the first one I convinced myself I had chest pain and that my lung was obviously irritated from the radiation and I would die a horrible death coughing up blood. Definitely psychosomatic. Nothing even happens for at least a week anyway. If it does, you'll be the first to hear about it.

Talking of side effects, all my chemo side-effects seem to have cleared up. Energy-wise I am absolutely fine, especially after France. My arm veins still feel a bit tight at times and obviously are hard to get blood from. Alas, I still cannot look at mango chutney. The hair is growing back nicely with good coverage, though that didn't stop me trying on and buying another wig:which led to many of my dearest friends failing to recognise me on Tuesday night (medic post-exam debauchery; they were all wasted). Tried this one on too and was very tempted, but it was £30 and I have decided to stop pissing money down the drain now. The money I got for having cancer has now run out which is severely limiting my shopping activities.


Not much other news - am hanging out with my favourite Italian (Gaita) making ratatouille and cheesecake, and going to visit the lovely Mavis in Hexham this weekend. If anyone is around in Newcastle next week then let me know :D or I shall import my sister from Nottingham and you'll all be sorry.

the Mould Room beckons....

Today was one of those fantastically efficient days that convinces you that the NHS is the best thing since sliced bread and reaffirms your faith in the medical establishment. After the horrifically agitating tedium of the last 2 weeks it was such a relief to be doing something, even if that something involved being bolted to a bed, with no hearing aids in, while a sheet of hot floppy plastic was moulded around my head by three grown men.

This is the result of that claustrophobic ordeal:

The mask/mould starts off as a flat piece of hard plastic (with a diamond-shaped nose hole) which is heated in a water bath before being wrapped around the patient's face, with pressure on the eyes. Ouch.
It's then bolted down onto the bench with those black things to keep the patient nice and still (well you try moving when your EYES are being squashed and your nose is sticking out of a small hole).
The neck has to be extended as far as possible to keep most of the head out of the way of the radiation.

Fortunately it was only 5 minutes until the now-hard mask was peeled off and I lurched upright, blinking, red-faced, dizzy and frankly astounded that I'd survived without kicking and screaming and generally making a prat of myself.

I asked if I'd be able to keep the mask, as I know some people who had been allowed to and was getting very excited at the prospect of my own personalised jelly mould. Alas this was not to be; perhaps it is to be recycled or has its own bit-part lined up in a new horror/sci-fi movie. They let me take lots of photos though - aren't you glad you can see its creepiness for yourself??

I then toddled off to see my radiologist who got me to sign yet another consent form and checked my schedule (this is like starting a new year at school - very organised with timetables being handed out left right and centre). My timetable informs me that I am to start radiotherapy next Wednesday and finish Tuesday 11th of August, which is a much better scenario than I could even have hoped for two days ago. Praise the lord and the NCCC. Devon here I come!!

The session wound up with a simulation; I was ushered into the CT room, where the mask went back on and stayed on for 6 rather unpleasant (blind and deaf) minutes while technicians drew little marks all over it with some rather delicious-smelling solvent pen. Mmmm. I was then jerked through the CT scanner to get a picture of the site to be irradiated, so my radiologist can plan exactly where to direct the radiation rays. In addition to the mould I've had a wee tattoo i.e. a tiny black dot in the middle of my sternum. I can get this lasered off later if I want but to be honest I can barely even see it.

So that's the planning all done - I start next Wednesday. "Nothing but good times ahead."

update: oooh I made a mean risotto with sundried tomatoes, goats cheese, bacon and orange peppers. nom nom nom. Felt the blog was getting too boringly medical....

a lot of wet Kleenex

I have cried more often in the last 3 weeks than in the entire 3 months of chemo. Ridiculous. If I came across anyone else sniffling so much I'd smack them and tell them to bloody well man up - but when I cry I call it a mini-nervous breakdown. The reason for all this wet Kleenex is the sheer FRUSTRATION of it all. My diagnosis and chemo - while not a barrel of laughs - were very efficient and well organised, so no vexation on this level occurred. I knew what was coming and got my head down and got through it. Now I find myself on the other side, chewing my fingernails for radiotherapy to start in Nottingham. The waiting and not being able to do anything is really rather unbearable. Not even food is keeping me calm (though the sushi did work pretty well).

Today Mother and I went in to see a Nottingham radiologist. While very pleasant, he turned out to be an oncologist instead - who would need to refer me to radiology. It transpired that I could expect to be contacted by some radiologists within two weeks, and would then need to visit a couple of times for planning radiotherapy (i.e. some scans?? not really sure what this entails) before starting. This puts us well into August before treatment even starts, which in turn means that I might not be finished by 1st September (which is when I'm supposed to restart third year). Ugh. The novelty has well and truly worn off by now; I want to get back to being your regular coeliac deafy without the additional cancer glamour.

With this hazy treatment timetable in mind, I crawled back to Newcastle radiology begging them to take me back, and - bless them - they welcomed me with open arms. I have a planning scan at 3pm tomorrow and should be able to start treatment next week. Wow.

I really should have revealed this fantastic turnaround in my fortunes slightly earlier on, but I wanted to make you experience a small fraction of my frustration first.

One thing I did learn today is that a negative PET isn't exactly the same as being cancer-free. It just means you haven't got any LUMPS of cancer (bigger than 6-7 mm) that show up. This, though mildly alarming, is at least some motivation to have radiotherapy. I was however rather pleased to learn that Hodgkin's survivors of my age and stage who are treated by chemotherapy and radiotherapy then go on to have a greater life expectancy than the average for England and Wales, because they don't smoke and they look after themselves well. See? Cancer is actually good for you.

I return to the Northeast tomorrow. Fun times ahead - my social activities are mainly planned around subtitled screenings of Harry Potter (markedly better in Newcastle than Nottingham. Must the Northeast prove to be superior in all areas of my life!?!?) Giggedy!!

shiny happy people

I am bald and shiny!! I figured that since I will hopefully never have the chance to completely shave my head again, I might as well do it now... so I made one of my friends, Will, shave my head down to a number zero (from the number 2 above), then later Georgina and Janet covered my noggin in shaving foam and scraped all the bristles off and I was at last SHINY!! I can feel the wind on my scalp at last - v. odd sensation, though useful for keeping cool when running.


I'm now back in Nottingham and getting rather stressed trying to get in contact with Nottingham radiologists, so that my radiotherapy will start soon and be finished in time for the Devon family holiday that I have been looking forward to since about Christmas. This is the first time in my entire cancer experience that I've been this frustrated and it is AWFUL. Yesterday I divided the entire day between pacing up and down like a caged lion waiting for e-mails from various secretaries, and bursting into tears of frustration as visions of a cancer-ravaged summer swam before my eyes. Tim found all this rather alarming, poor boy, but fortunately managed to cheer me up and keep me busy making sushi. (You can tell this cooking obsession is genetic can't you??


The situation we have here is your classic "out of the frying pan, into the fire" one. Last week in Newcastle I was told that I could start radiotherapy soon and be finished by the beginning of August. My brain did not process this properly as I was too worried about being alone in Newcastle, so I started pushing for the transfer to Nottingham and have thus managed to delay the radiotherapy due to all the red-tape this necessitates. And now my Newcastle radiologist has gone on holiday so that door has banged shut... The situation is entirely of my own devising and this is more annoying than anything else put together. RARRRRRRRRR.

Anyway I have an appointment next week to see a radiologist, which isn't soon enough for my liking. Will go with many more questions to ask and beg them to hurry it up as fast as humanly possible. If this doesn't work I may use my loyal army of blog followers - um 17 people - to stage a sit-in in City Hospital until something happens.

I think this would all feel a little more useful if I actually still had cancer. Not that I still want to have cancer by any means, but I would have less difficulty getting used to the idea of radiotherapy if I knew I still had some stubborn little cancer cells to blast into oblivion. As it is, I'm trying to get my head round the idea of voluntarily irradiating my now apparently healthy neck. Eeesh. IF THAT EVER EVEN HAPPENS BEFORE NEXT CENTURY.

Sorry.... swear am normally happier than this.... think may go and get a gin and tonic. Watch this space for radiological developments.

to radio or not to radio

Oh I am slightly hungover - damn that gin and wine. Well what better way to celebrate freedom from cancer and chemo?!

Unfortunately my cancer journey isn't over yet: it appears they want to fry me a little more, as I have been randomised to receive radiotherapy. This makes me feel as though I've sprinted to the finish to find there are another couple of miles to go (uncannily like my first Great North Run experience and just as galling). I went in yesterday with 2 A4 pages of questions - could see my radiologist's face fall as I flourished them. Only kidding - she answered all the questions and was very helpful.

It transpired that I should have 3 weeks of radiotherapy - this, combined with 3 months of ABVD chemo, is the standard treatment for early stage Hodgkin's and gets cure rates of 95%. The other option seems to be a whole 6 months of chemo which is frankly less attractive than eating my own excrement. The problem with running off now after 3 months of chemo is that PET scans are still too new to rely on. Having a negative PET now might not mean that I stay cancer-free forever (now pretty much my main goal in life). The "involved field" will be from just above my heart to the top of my neck, in what I imagine as a sort of upside down house shape.

Side effects I can expect are:

1. HYPOTHYROIDISM - a one in three chance of developing this, 3 to 4 years after radiotherapy ends. This means taking thyroxin every day for the rest of my life. Now call me irrational, but I would have thought that being profoundly deaf and having coeliac disease is enough to keep one busy without having to remember to pop hormone pills every day as well. (Yes I know you could point out that millions of women manage to take the Pill every day but I have the organisational skills of a brain-damaged gnat. Also somehow there is something less voluntary about having to take thyroxine to stop yourself becoming fat and toadlike, rather than deciding to go on the Pill so you can have big boobs, not get pregnant and control your periods.)
2. Tiredness - will come on towards the end of the 3 weeks and shouldn't last too long. i.e. I should be OK to go back to medicine at the beginning of September.
3. Difficulty swallowing due to sore throat (radiation-fried oesophagus) - should last a fortnight or so after radiotherapy stops. This might mean a temporary soft food diet and avoidance of spirits (SHOCK HORROR WHAT WILL I DO WITHOUT GIN??) and spicy food (that I can live without, having put myself off curry by foolish gorging on chemo days).
4. Possible increase in risk of breast cancer: I will have to go into an early breast cancer screening programme if my boobs end up in the firing line. Wonderful: more opportunity for hypochondria.
5. Sunburnt looking skin in the treatment area which should fade afterwards.
6. Possible dry mouth

I then asked the radiologist if I could transfer to Nottingham to have my radiotherapy, as almost no-one will be in Newcastle after mid-July and I refuse to go and get fried for 5 mins every day if I have no-one to come home and whinge to about my neck hurting. It was at this point that our differences in viewpoint became rather marked; she didn't seem wildly excited by my proposal and said it would be easier if I stayed in Newcastle... but then after further begging she softened and tried to get hold of some Shottingham radiotherapist. Alas, he didn't have a pager and all attempts failed, so she said she would send an emergency referral by fax. I was supposed to hear by the end of today (by email) of the plan for next week. No email is forthcoming so I shall be chewing my fingernails all weekend.

I reeled out of the radiation department teetering on the verge of tears, and made a beeline for the Macmillan Cancer Services department. I tell you now - Macmillan Cancer is the best thing since sliced bread. The man who greeted me was friendly and helpful and walked me through the reasons for my aversion to radiotherapy, and then gently pointed out that it seemed wise to maximise my chances of cure as much as I possibly could. So if you haven't guessed from the general tone of this post, I really am veering towards radiotherapy. It sounds better than more chemo any day. If you are thirsty for more information on radiotherapy, Macmillan have a good section on their website. I also found this post by Jamie Ross to be very informative as well as improbably funny.

Now am off to stir my strawberry icecream. Well I have to pass the time somehow... why not by more cooking!?

bye bye cancer

yeahhhhhhhhh baby my PET scan is NEGATIVE!!!!!!!!!!!!! Ahahahahahahhahaha knew it was worth all that caffeine withdrawal misery.

Slight fly in the ointment is that I have been randomised to receive radiotherapy ... SO I am going in today at 3.30 to ask them lots of questions and hum and haw a bit.

Now am probably going to go and get very drunk (or perhaps save this for after have been to the hospital) but either way WHOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!

waiting on a text message....

Am now back in a rather stormy Newcastle, and having hijacked Janet's computer with alarming ease (she really should get a password, like ILOVEROZ) I can share my lacklustre news with you. My CT results are back and they are normal i.e. I have no large melon-sized tumours lurking anywhere. The PET results aren't ready yet but should be available later this afternoon or tomorrow. My consultant is going to text (!!!!) me the results once she knows. Once we know if my PET is negative or positive we can decide where to go from there.

If you remember, I'm in a clinical trial (see here for more details) to "determine whether patients with clinical stage IA/IIA Hodgkin’s disease who have a negative FDG-PET scan after 3 cycles of ABVD require consolidation radiotherapy to areas of previous involvement in order to delay or prevent disease progression." I'm hoping I will be PET-negative and then be randomised in the trial to the group who receive no radiotherapy. That way I get a summer of hippy-esque freedom bopping around Devon with flowers in my non-existent hair. (I shaved it down to no.2 last night; this provided much opportunity for toilet humour when Mother said naively, "I've never done a number two on anyone before" then wondered why we were all pissing ourselves laughing.)

I would find it very hard to decide whether to avoid further treatment as far as humanly possible, or have some radiotherapy just to make sure I won't relapse. It's a tricky decision and this trial is attempting to shed some light on the pros and cons. Hopefully I'll be able to say that I helped patients before I even qualified as a doctor!

People often say to me: "You will have so much more experience of the "other side" and what it's like for a patient - and it will make you a better doctor." I hope that's true; I'd better be getting something out of this other than a lot of sympathy! One thing I have noticed is how little I understood as a patient, and how frustrating that is. You'd expect a medical student to be more in-the-know but I actually felt very much in the dark, particularly in the early days. This was through no fault of the doctors or nurses - they were unfailingly professional and kind - but I don't think they realised how little I knew. I would sit on the chemo ward not knowing why I was waiting so long, for either my Neupogen or for the chemo itself. I rarely saw my haematologists and when I did I was so pathetically grateful I almost forgot to ask my questions. I know how busy doctors are but if they just take that extra time to check that you understand what's happening to you, it's so much less frightening and bewildering. I will hopefully always remember to ask patients if they have any questions for me!!

Other news: after 4 goes (am human pincushion with floppy dacarbazine-ravaged veins) they managed to get some blood out of me which seems to be normal in all measurements. V. relieved not to be anaemic or immunocompromised.

Coeliac shout-out: just been to Jack Sprat's on Chilli Road and was very impressed by the gluten-free menu options. The bread was pretty darn good, as was the spinach burger. yum yum. lots of promising cakes too but am behaving myself at present. Went for a very sweaty muggy run last night - 3 miles with "harder better faster stronger" playing round and round in my head to very good effect.

Off to watch Neighbours now but you'll know the PET results when I do...

caffeine withdrawal and SHOES

Ugh I am so over PET scans. They are BORING. Mother and I turned up at the Christie in Manchester nice and promptly this morning. Started off with the whole caboodle of "yes I am Rosalind White and yes that is my address and yes my date of birth is blah blah blah and NO there is no chance at all that I could be pregnant yes I will sign a document to that effect so that if I do end up giving birth to a grotesquely radiation-deformed creature it won't be the NHS's fault".

Then I had yet another cannula put in my arm, and after a quick blood glucose test I had to sit in a room for a whole mind-numbing hour by myself while radioactive glucose hummed round my system and got gobbled up by my brain/liver/kidneys. The only way I kept sane was by singing American Pie to myself in my head. (No reading is allowed because your arm muscles would take up the glucose instead). I could feel the caffeine withdrawal headache building and building. I was HUNGRY because I hadn't eaten for 12 hours.

(Seriously, even by my rather high standards of food worship, breakfast is absolutely sacrosanct. HOW do people skip breakfast without fainting before lunchtime and killing anyone who looks at them the wrong way??)

Then I loaded myself onto the PET trolley thingy to be jerked back and forth through the scanner for half an hour, trying to stay very still and also hoping that the picture they were getting was clear and cancer-freeeeeeeee. (Thanks to peeps who have been keeping everything crossed for me and wishing me luck - I hope it damn well works.)

After all this I was not exactly in the mood for shopping - in fact my main priority was to find caffeine, paracetamol and food and then possibly a bed - but fortunately things looked up after once we got back into Manchester city centre. Because I saw THESE:


and they are now MINE MINE MINE forever and ever. It matters not that I cannot walk in them (I can learn) and that am practically six foot in them (I will look thinner) and that they were £80 (they were substantially reduced). They are quite simply my soulmates, in shoe form.

I don't know if anyone else has noticed but there seems to be a strong footwear theme running through my cancer experience: the brown leather birthday boots which I hugged and smelled for their leathery comfort when the thought of "a possible lymphoma" made my chest hurt; the new running shoes I bought as a promise to myself to keep fit through the chemo malarkey; the Converses Mother got for me on the morning of the first chemo. And now THESE. It's official: shoes are therapeutic. We should all buy them more often! Hurrah!

(Also, if you see him, don't tell Father the shoes were £80 - we're pretending they were oh, about £20.)

PET scan results should be in about 4 days apparently - will keep you posted.

PET scan #2, and wigs

Mother and I are off to Manchester tomorrow for my second PET scan - the one that determines if I still have cancer or not, and whether I need any more treatment. I am a little apprehensive about this - as you might expect - but am choosing to treat this as a day shopping trip, albeit one with a little more radioactivity than usual. (See this old post for more info on how a PET scan works.)

It's now 3 weeks since my 6th and hopefully final chemo, and I now feel pretty much back to normal. The week in France was an excellent opportunity to get away from everything for a bit and have some R&R. I'm eating normally now - to be honest, chemo never affects my appetite for long - and taking advantage of all the yummy summer fruit around. Mother and I have just been blackcurrant-picking in the orchard and there was blackcurrant compote for tea. Am also trying to get back into some decent running (now that I no longer have the niggling little voice at the back of my head going "bleomycin! bleomycin! your lungs are fibrosin'!!"). This means interval training and hills, which I hate but they do get results. My weight surprisingly hasn't changed after chemo but I have decided I need to skinny down a bit ... and stop eating so much ... and stop going on about food all the time. Ahem.

It's true that this really has turned into more of a food blog than a cancer blog, but surely that's better than "Ohhhhhhhh my god I feel terrible oooohhhhhhh i feel sick arrrrrrrrgh the painnnn the PAIN and the lumps everywhere I'm BALD BALD BALD ahhh I hate my life this is so unfair why do i have cancer whinge whinge whinge". Which isn't to say I haven't occasionally felt like that but I tend to squash it all down/scream into a pillow and go and cook something instead. POSITIVE THINKING AT ALL TIMES! :-D

Talking of BALD BALD BALD: I still have a bit of hair but it's started falling out from the last chemo now. For me the hair loss tends to start about 2 weeks after a chemo treatment and goes on over the next week/10 days or so. I will shave it all off at some point, I reckon - just so I can say I have once been bald and shiny and proud. Wig-wise: the NHS pays for a wig for cancer patients, and I tried on a LOT of wigs:

before I picked this one......which unfortunately I have now realised makes me look like Peggy from Eastenders ("Get aaahhhhhhhhhhhhhhhhht of maaa pub!!") and so I am eschewing it in favour of the GI Jane look, complete with aviators (when sunny). Although Jess and I have now concocted a plan to go out looking hot in bright blue and pink wigs, just for the hell of it.

a much-needed holiday

Have been quiet for a while - mainly because was being a whirling packing dervish and feeling very frazzled from CT scans, chemo and the like. Turns out a week in the South of France is exactly what every cancer patient needs - it should be available on the NHS.


The NHS was a little worried about my holiday and wouldn't let me go without some Neupogen injections and lots of antibiotics and antivirals just in case I got some bacterial infection or shingles etc etc. Fortunately none of them were needed, although I did get slightly concerned about the possibility of cellulitis after 11 mosquito bites.

This was a very last minute holiday - I must thank the other Caroline (my godmother) for telling me to just book the flights and see what happened with CT scans, rather than waiting. So I booked the flights in her kitchen and did some jiggling of CT dates (and begging). Thus I ended up on a fantastic sun-soaked week with Caroline and Julia! True to form, we ate LOADS of yummy food: below is steak with chips and mushroom and ratatouille. And red wine - of course.


Other food of note is gluten-free pizza (below), garlic bread, lots of risotto and an abundance of salad and fruit.

And a lot of frappuccinos...


To look at these photos you'd think we did nothing but eat.... SO NOT TRUE! We also sunbathed (with suncream - and I wore my hat all the time so no scalp-burn) and swam and read lots of books - Caroline even finished her ECG book *cough*geek*cough*. We went for a walk AND we did sit-ups and press-ups (I am pathetic at these). Fortunately we got out of doing anything too much like exercise by using the chronic fatigue and cancer excuses, phew. Seriously - LOOK at this improbably long swimming pool:

So thank you very very much to the two Taylor ladies for a wonderful week which I really needed :D am now tanned and chillaxed - and miraculously no fatter. Odd that.

(and this is the state of my hair at the moment - falling out a bit but still there)

I shall do a proper blog post later about - erm - Hodgkin's and PET scans, but right now I am supposed to be meeting Jess in town (for yet another visit to Chocolate Utopia) so au revoir mes petites choux-fleurs! (as Minti would say). Mwah mwah.

Tim is coming home today...

...from Japan where he has been for the last 3 months! Am very excited to see my wee brother!!! :D :D :D

Also the lovely Gaita has come to visit me this weekend and we have been revising - it feels rather good to be using my brain again, properly, for the first time since March. Oh and we have eaten lots too - steak and chips last night which turned into one of those occasions where I was just cramming mouthful after mouthful of pink steak and crispy chips in without pausing for breathing because it was so DAMN GOOD. Mmmmm hoo boy.

I got another lovely parcel, this time from some German friends who know the way to my heart is through Erdbeernektar.... here it is, looking as though it has just descended from heaven. (Which indeed it might have; food of the gods I tell you, especially on vanilla icecream with strawberries...)
That's strawberry syrup to the non-German speakers amongst you (well the only German I know is Erdbeernektar, so I can't really take the linguistic moral high ground here). Danke schön to the Jesse family - you are so kind! :D
I also hear I have a few other German blog readers which is very exciting: Hallo!! Wie geht's? (Is that right? Fabia??)

The hammock has arrived too, so when the weather is good - quite often of late - I go and lie around in the dappled light, reading books.
The chemo side effects are resolving as usual (except for the constipation which only lifted this morning to my great relief... well you try not pooing for a week and see how you feel...) and I went for a run this morning. I was very slow and stopped a lot, but I've come to regard the first run after chemo as a breaking in for the next run: i.e. I never run well, but it makes the Tuesday run easier.

Hair update: is falling out some more, and I have been shaved again - this time a number 3 and an even shorter number 2 at the back. The back is where it's thinnest, probably because I lie on that part and rub all my hair off. Apparently I also did this when I was a baby - thanks to father for providing this reminiscent story...

I now look quite ridiculous. At least I have a nicely-shaped head.

Off to do some more revision with Gaita on our splendid Infectious Diseases spider diagram...

an unexpected and beautiful parcel

oh my gosh. ohhhh my gosh!!
I do not normally post on here the day after chemo due to being too busy feeling bleh, watching Disney films and popping anti-nausea pills - BUT have just been moved to do so by THIS:

This is a beautiful, beautiful, utterly stunning (well I don't need to tell you - you can obviously see it for yourself) quilt made by my extremely talented Aunty Joyce. She claims she is just a beginner and it's not perfect but to me it most definitely is! Thank you SO much Aunty Joyce you've made my day! a more traditional paper thank you letter will be on its way shortly but felt that the internet needed to see evidence of your talent :D Am putting it to good use already:


Chemo #6 yesterday was OK - in at 10.30 and out by 5.30ish. Plenty of banter provided by Mavis, Beth, Christine, Ruth and Ed (though the prize has to go to the last two for being so spectacularly rude about the size of my bottom: "If you fell over you'd just bounce right back up because of your bum" - Ed. Though to be fair I was equally rude about his love handles so I deserve it).

I came back home on the train by myself last night. I was slightly apprehensive about this but it was much better than having father nobly drive up to get me and arriving home at midnight. I made it home without vomiting on anyone or getting feverish, thank goodness. Had some chicken soup and some of Isobel's cherry cake, then bath and bed. Been popping the usual pills, though now I take them together the morning after chemo. Ondasetron takes about an hour to start working and metoclopramide is faster, so I want that double-whammy.

Today I am rather tired and my chemo arm kills. You can see the inflamed vein tracks all along my forearm - ouch. Been applying hydrocortisone liberally. Not sure if it's working but what the hey.

I would write more but I want to go and watch another Disney film in my lovely new quilt, so au revoir for now! (Though Isobel wants to drag me outside to play on the swings...dagnabbit! Someone really should explain the principles of chemo to her....)

poems and parties and belated injections

This is the last photo my old camera ever took. Felt should put it up in sentimental tribute, as it is oddly pretty....awww the poor little thing tried so hard in its final few minutes! (Remember its watery death on the day of chemo #3?) The new camera (a Canon Ixus 85 IS) is now here - with a new WATERPROOF case - and has been put to good use this weekend at Romeela's and JennyCescaSana's birthday parties, which were both lovely evenings. Happy Birthday to you four!!

But first I went to Alnwick. (Or rather, made Georgina drive me to Alnwick...) Barter Books, if you haven't been, is the best second-hand bookshop in the North East, if not the country. It's in the old Alnwick railway station and they have a toy train going round on a track on top of all the bookshelves! And they have poems down all the aisles! Here is my favourite poem in the place:

(click to make larger and read the whole thing)

I took 2 bags of books mother had cleared out and got £13 credit for some of them (the rest will go to Oxfam). Then used that to buy some more books...including Ted Hughes' Birthday Letters as part of my self-improvement plan: Read More Poetry.

In the afternoon Gaita came and made me a delicious lasagna di verdure with aubergine, courgette, red and yellow pepper, onion, spinach, carrot - and cheesy Bechamel mmmmm. In fact was more of a rainbow lasagna than di verdure... Good stuff. (I ended up attacking the remnants with a spoon when I arrived back a bit tipsy from the birthday party - was just irresistable.) Here are some party photos...

Kissing Janet Planet.
Felt this was a good hair photo - look how much is still left! Though you can see a lot of my scalp...hmmm.

sepia experimentation with one of the birthday girls - Jenny

and with chief lasagne-maker (Gaita)

a slightly tiddled DELTA huggy photo with Becci and Ed - note am only one not pouting...

Indeed, yesterday was so hectic that I only realised at 1am that I'd forgotten to do my Neupogen injection - 12 hours late! OOOOOOOOOOOPS... I really do fail at this organisation-of-life malarkey. Did it when I remembered and will try to stay up till 1ish tonight too to jab myself. Hopefully it shouldn't matter too much what time it's at, as long as my count is high enough for chemo #6 tomorrow. And hopefully this will be the last time I have to remember to do the injections - if this is indeed my last chemo. OH dear lord please let it be the last one!!!

I was just thinking how much my life has changed since March - I have gone from a busybusytiredtired medical student to someone with a LOT of free time and party weekends in Newcastle every fortnight (and yes chemo when the weekend's over but shh shh). It's also very strange how quickly you get used to change: I've become accustomed to the travelling, the needles and the enforced chilling-out, and yet it seems like only yesterday I was going "OMG what if I have lymphoma???" and crying by myself in panic, using up nearly a whole loo roll with soggy paper tears. The idea of chemo and of taking a year out was just unthinkable because I had no idea what it would be like. But I'm here and I feel normal, still. Thank god we humans are so adaptable...

At the same time it seems a very long time since I did any medicine. I feel very out of the loop. Don't get me wrong: I really appreciate this opportunity to take a step back and take time for myself, but the flip side is a lot of boredom sometimes - and the slow decay of your history-taking skills. Then again, you can be SO BORED as a medical student on the ward... so I suppose we should make the most of whatever we have, because you never know what tomorrow brings... hubba hubba!! (no idea why "hubba hubba" but felt was getting too serious for a moment there.)

And now I shall FINALLY tidy my Newcastle room as it's been yonks. Been inspired by Mary Queen of Charity Shops to take some decent stuff to Oxfam, along with the books, so here goes the big clear-out!