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...