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Sarah sitting on the steps outside the Fitzwilliam Museum in Cambridge

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Edited by Sarah Cornell, Monday, 13 Feb 2017, 16:56

Hello!  No, there's been nothing interesting to say in the last year.  But now there is!

Irradiating the brain doesn’t come risk-free, you know.  One of the half-expected things was an element of pituitary failure.  The pituitary gland is a little thing at the base of your brain, which produces eight different hormones.  The odds of one of the eight failing is 60-70% after general brain radiotherapy. So you know something is likely to happen, the mystery is which one of the eight it’s going to be (depending on which one, it can be inconsequential or it can be life-threatening).

The research study I signed up for is all about this sort of collateral damage.  Because the radiotherapy was image-guided and intensity-modulated, the super-snazzy computer will know exactly how much radiation landed in which parts of my pituitary – combine that in with data from a load of other people, and you find out what the risks are, and whether it’s possible to design the radiation dosing better.

So what’s happened?  Well, I’m not making any growth hormone (GH).  “But you’re already grown up!” I hear you say.  I’m kind of ready for the fact I’ll be explaining this for the rest of my life…but growth hormone isn’t just for growing.  Adults need it too – a lot less then children need it, but still very necessary.  It takes care of lots of physical and psychological things.  The last study visit I had, various tests showed the physical effects, and the questionnaires I filled in showed the psychological ones.

 Here’s a formal list of what GH deficiency does to an adult:

  • increase in adipose (fatty) tissue (especially around the waist)
  • decrease in lean body mass (muscle)
  • decrease in strength and stamina, reduction in exercise capacity
  • decrease in bone density, increase in rate of fracture in middle age and beyond
  • changes in blood cholesterol concentrations (increase in LDL and decrease in HDL)
  • excessive tiredness
  • anxiety and depression
  • feelings of social isolation
  • reduction in 'quality of life'
  • increased sensitivity to cold or heat

 

In more day-to-day terms: I can sleep at an Olympic level.  I can’t be bothered with an awful lot else.  I know a walk out in the sunshine will cheer me up and make me feel like I’ve achieved something, but I’ll just nap instead.  Actually, the one thing I do seem to be able to motivate myself to do is walk – only so long as it’s via somewhere that’ll sell me a larger-than-individual portion of chocolate smile

I’ve bailed out on the current OU module – just couldn’t keep anything in my head.  I’m reading a bit less than usual, and almost exclusively lightweight fiction (normally it’s 20-25% fiction).  And I’m only reading one book at a time (usually I have 3-5 books on the go at once; though only one will be fiction).

Nothing life threatening, but definitely far from life enhancing.

So what can be done about it?  Well, fortunately something can be done about it – it’s only relatively recently that growth hormone has been given to deficient adults.  I think the reason it used to be reserved only for children was that it used to have to be harvested from the pituitaries of dead humans or dead cows; there was therefore a limit to supply.  Nowadays, it’s produced by some lovely little genetically engineered bacteria, which make perfect human growth hormone.  No ick factor, no mad cow risk.

It doesn’t work from everybody, so the first thing they do is a 9-month trial of it.  The pharma companies who make GH fall over one another to pay for your 9 month trial – because if it does work, they’ve got your custom for the rest of your life.  But, they’ll only fund this if you’ve got someone already guaranteeing to pay the £3-4000 per year that it’ll cost after the 9-month trial (assuming it works).  The hospital have filled in all the forms to ask my GP to pay for it; my GP may say no, but the nurse has assured me that if they do say no, the money can be found elsewhere.  It’d be coming from the same pot of NHS money, just via a different route…

It can take 3-6 months to see an improvement; I get a bunch of baseline measures, and then the same done again at 1 month (to see if dose needs changing), 3 months, 6 months and 9 months.  I have to show a certain improvement in the questionnaire scores to be allowed to keep taking it.

So I’m waiting for the funding decision, and then we can make a start.  It’s a nightly injection, with an auto-injector pen (like insulin or an epi-pen), which I’m not in the slightest bit bothered about.  I’m sure I’ll let you all know when I get started, and then again if it makes me start feeling human again smile

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Sarah sitting on the steps outside the Fitzwilliam Museum in Cambridge

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Well, this has been a jolly good week.  As well as the appointment on Monday where they said all's well, see you in September, two more good things have happened:

1. My hair is growing back in my no-longer-entirely-bald patches!  it's very short and fine at the moment, but it looks the right colour - need to wait for it to get a bit longer to see if the texture is going to be different or not.

2. The DVLA have decided they are happy for me to drive.  Because none of my doctors had said I shouldn't drive, it's been fine for me to carry on driving while they did their investigation (which started in early June).  They have restricted me to a 3-year licence, which is fair enough - it forces me to inform them of any changes, which I would have done anyway but I know not every driver would be so minded.  They've also removed my licence to drive a minibus or a 3.5-7.5 tonne vehicle, which as you may suspect will affect me not one jot!

As with the earlier news, these are things that were expected.  But it's very pleasing for all three things to come together and all be as good as expected - the hair re-growing may even be ahead of schedule, I'm sure they said allow a 12-18 months for it to be back to normal.

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Update! With pictures!

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Edited by Sarah Cornell, Tuesday, 15 Dec 2015, 08:59

Hello there!  Yes, it has been quiet.  See previous post about having nothing to say.

The funnest thing to report is that in early November I developed a reasonably mild case of somnolence syndrome - you get it 4-6 weeks after you finish treatment, and basically you are extra, extra tired.  I had the triumphant experience of falling asleep at my desk four times in one week!  Three of these were when I was working at home, but magnificently once it was in the office.  Fortunately, most people had gone to lunch (while I was on the phone in a meeting, otherwise I'd've been at lunch too), so there weren't many people around to notice - and of the few that were there, I don't think anybody did.  Lots of naps around work and doing stuff on holiday, and I seem to be mostly back to normal-tired now.

In actual news, I've just had my three month follow-up.  I had the scan on the 8th, and saw the oncologist on the 14th.  There are absolutely no changes on my scan, and given my lack of further headaches or any other symptoms, and the general good tolerance I had for the radiotherapy, I don't need to go back again until September 2016, i.e. 1 year after treatment.  Of course, I am welcome to have an appointment if I do feel the need, and the oncologist very much emphasised that she is my doctor for this, but if I'm happy, she's happy.  Her plan is for now 1, 2, 3, 5 and 10 year scans.

I've been saving the best bit though...pictures!  I was given a CD of the most recent scan, so now it's time to have a look at my brain big grin

These images are taken looking upwards from my chin, so my right eye is on the left side of the picture.  I've put in the picture on its own, plus a version with a couple of notes on.




This one is the next slice 'down', i.e. towards the chin:




And here are a couple from a face-on direction, I think you can probably see the beastie without my help on these:



As you can probably guess, I'm utterly thrilled to have pictures big grin

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What now?

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Edited by Sarah Cornell, Monday, 28 Sep 2015, 15:55

I've gone all quiet.  Only because there's not much to say.

Last Monday (21st) I saw the oncologist, two weeks after my last radiotherapy fraction.  All is good from her point of view.  She's arranged that in early December I have an MRI and a week later a follow-up with her.  The expectation is that the scan won't look any different to the previous one.  The December-scan will become my new baseline scan, that is any future scans will be compared to the December-scan to determine any changes.

The initial aim is to get the scans annual, and then move them further apart when they show nothing is happening.  The extremely-subject-to-change rough-schedule previously mooted was something like: baseline (3 months after treatment end), 6 months, 1 year, 2 years, maybe 3 years, definitely 5 years, maybe 7.5 years, definitely 10 years.  When you're dealing with something that grows 1-2mm per year at most, you have to wait a goodly while to see anything happening.

So, really, not much more to blog about.  I may witter the occasional thing on here just to witter, but the "excitement" of the last five months done with for now.

Oh, and last of all, our holiday week was great - I was quite tired but able to keep up most of the time.  I took the Hasselblad with me but didn't get around to actually using it ... the Nikon Df being the lightest-weight beast I own got most use!
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Edited by Sarah Cornell, Wednesday, 9 Sep 2015, 17:49

Got myself a little end-of-radiotherapy present:

Hasselblad 500 C/M

A Hasselblad 500 C/M with 80mm lens.

Well, to be honest I bought it a few weeks ago - too lovely a thing to risk sitting in the shop window and going to a different home.  About two days after I bought it, I got an unexpected 'recognition award' at work, so clearly it was meant to be.

And I get to take it on holiday very soon too!

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Week 6

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Well, that's that then!

Had you asked me at the start, I would have said that 30 treatments in 43 days would have felt like a lifetime, especially given the schlep to and from Addenbrooke's for each treatment (about 30 miles each way). In reality, it's gone really quickly … a bit like those six weeks of summer holidays did when you were a kid!

Week 6 (which in calendar terms toppled over in to Week 7 thanks to the [much appreciated] bank holiday) didn't bring any major surprises. I've definitely hit the build-up-of-fatigue that they warned about – on Wednesday evening I got to about 8.30pm and just crashed and haven't felt fully awake since. I got up Thursday, logged in to my work computer and answered a couple of straightforward emails, but it soon became clear that nothing more complicated than that was possible. Went for treatment, came home and crashed on sofa. Friday was very much a repeat of that.
Saturday and Sunday as usual involved a lot of doing not very much at all, but I would say that they've not had quite the same restorative effect as in previous weeks.

In theory the tiredness may worsen over the next two weeks before it starts getting better. In practice, I won't be having to spend the time travelling or being at hospital, so I suspect that may balance out. I also won't actually have to get up or set an alarm if I'm feeling that tired since I'll have nowhere to go (only as far as my home-office to work, when I can). Clearly I'm optimistic here that the new schedule means any changes in tiredness won't really be noticeable.

I'm still losing hair by the handful, though still not really finding where it's come from. Yes, I have my small bald patch, but I'm sure there's more hair than that gone in the bin/down the bath drain. Perhaps it is thinning at that same level around my head, it's just hard to notice, exactly as promised. This should keep on for another three weeks or so and then it should stop falling out – though it'll be over the next 18 months that it comes back (possibly a different colour or texture).

Immediate future is a follow-up with the oncologist in about four weeks, and first scan in about three months. All future scans will be compared to that one as my post-treatment-baseline. Blood tests six-monthly. Visual function tests in six months as well, but the probably less frequently as time goes one (same as the scans).

Now I just need to stay awake long enough to talk to the DVLA about when I can start driving again (oncologist thinks it should be fine, but wants me to check with DVLA, as it may need co-ordinated clearance from oncologist, ophthalmologist and DVLA, so that might be a challenge!)

Oh, and I was asked if I wanted to keep my mask - I said yes, so as I could bring it home and finally show a picture of it:
Sarah's radiotherapy mask
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Week 5

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I hope you haven't all been waiting with bated breath for this one.

Nothing to report.

Really, nothing.

OK, I was more tired this week, but I don't know whether that's the tiredness building up, or because last weekend I went out on the Saturday so I only had Sunday for laying-about-doing-nothing.  This weekend I went out on Saturday again, but being a bank holiday I get the Monday off treatment and so still get two days to do nothing.

Oh, I do appear to have a bald patch appearing, behind/above my right ear.  Really difficult for me to see, I think I'll have to get a photo taken by someone else just so as I can see it.  As that may indicate, still not all that significant.

I successfully did nothing yesteday (Sunday) and my plan for today is pretty similar.  Going off now to build myself a sofa-nest and choose which films to watch...

Five treatments left - all one day out due to the bank holiday, so last session/end of 'week 6' is in fact next Monday (7th).  So you get an extra bit of silence before my next nothing-much-to-say blog.

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Week 4

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Edited by Sarah Cornell, Monday, 24 Aug 2015, 07:55

Time is marching on, and now it's the very end of week 4.

It's still quite boring, which I should emphasise is a very good thing.  Still nothing worth speaking of in the way of nausea and headaches.  Still able to sleep at an international competitive level, although the problem with that is that while I'm asleep I can't drink, so a long night's sleep is lovely but takes me time to get going the morning after while waiting for the water level to replenish.  Seem to be averaging about three litres a day (mostly water, occasional fizzy/squash/juice, very occasional hot chocolate or tea!)

I do seem to be leaving a lot of hair around the place, and after I brush it a mini-clump will come out in my hands ... but I still can't find where it's falling out of!  So there's obviously plenty left.  But don't invite me round to sit on your nice new black sofa unless you want it to look more messy than if our cat hat been rolling around on it.

I had the consultant review on Thursday, which was again nice and quick with not much to talk about.  There was a student in doing some work experience - who was instructed to look at my eyes to see my dilated right pupil (again, described as an 'interesting presentation').  Then I demonstrated my right eye's restricted range of movement and described how looking forwards my vision is fine, and so I can move my head to look in any direction, but if I move my eye to look at the extremes of any direction then I get double vision (because my right eye doesn't move so far as my left does, and then the image from each eye is different and so can't fuse).

What I'm now realising is that all these medical types get excited over what my eye does/doesn't do, but I don't get to see what they're excited about!  The orthoptist took some photos at my first visit to her and showed me them, but I'm going to have to muck about with my phone to see for myself what it is still doing/not doing :D

The consultant was pleased with how well it was going - I am obviously glad to be having a relatively easy time of this, I can only hope that modern treatments and technology mean that if any of you reading this has to go through something similar, you get such a good result too!

Yesterday (Saturday) I had a day out in London with friends, which was super.  Exhausting, once I was home, but very nice to be able to still do something so normal as a day out (especially with super people who make concessions like getting the tube one stop instead of walking a mile and bit like we would do normally.  Which is not an inconsiderable concession, when you consider it means getting on the underground in 30 degree heat!)

Today I'm off to fix my mum's computer.  Everything is so very normal smile

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Week 3

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Edited by Sarah Cornell, Saturday, 15 Aug 2015, 13:27
This just gets more boring, I'm afraid.

Monday to Wednesday everything was fine - no headaches, no nausea, are they giving me the real radiation?  By Wednesday evening I was quite tired, and on getting up Thursday morning I was completely shattered.  Thursday and Friday I managed to check my email but not actually do any work, and I'm still fairly tired today even after 11ish hours sleep.  On balance I think I'll take the tiredness over nausea and headaches smile

I am definitely losing some hair now.  I thought there was quite a bit in my hairbrush and on the floor where I tend to stand when brushing it, but then a good bit came out when I washed it this morning.  There does seem to be plenty left, as I can't find any huge gaps yet.  (I will only be losing hair in a band around my head roughly at eye level, i.e. only where the beams go in and out - the rest of my hair will remain, and so cover any loss.  It's likely that where I do lose hair, it'll be patchy rather than completely bald).  Of course there will be pictures, once there is something noticeable enough to show you big grin

But half way there now, so that's all good.  Just wait and see what side-effects the next week brings!


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Week 2

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Good afternoon!  Yes, here I am, on Friday afternoon, wide awake.  Well, maybe not wide awake, but definitely functional.

This week has all been much the same as last, only with sensible food and lots of water, which seem to have done a huge amount of good.  There's still not much in the way of hunger, so I'm letting the clock tell me when to eat.  I'm drinking constantly.  The result is no feeling really bleurgh, which is great.  Another result is that there are some chocolate biscuits in the house that have been here more than a week, because they haven't been singing at me to eat them.  Oh, and apples are really good (normally when there are chocolate biscuits and apples in the house at the same time, apples don't get eaten first).

I've had a couple of very mild headaches - single dose of paracetamol sees them off - I can't decide whether they are hunger, hydration or result-of-treatment (local inflammation).  Occasional mild nausea still quashed by ginger biscuits, a fair bit of tiredness, but I'm doing my best to save it until bedtime and sleep really well.  It's still unpredictable in that one day I might be really tired and the next more awake but a bit more nauseous.  In general it worsens over the week as you might expect.  Looking forward to my two days off, but feeling better than this time yesterday.

This week I saw the orthoptist and ophthalmologist on Monday.  The orthoptist said that she had suspected that the scan would reveal something - that the problem was neurological - but it was not what (or where) she expected.  She did some of her tests a couple of times, while nodding and smiling, and said, 'It's interesting, and I'm learning!'

The ophthalmologist appeared to be much more surprised with how this turned out - he's probably disappointed that I'm not a one in a million ophthalmoplegic migraine.  He had some praise for my optician, and seemed staggered when I told him that I was my optician's fifth brain tumour.  He asked if he could write me up as a case study because of being an 'interesting presentation', which I said was fine so long as I could have a copy please!

On Thursday I had my first review with the oncologist, and that took all of about three minutes - pretty much just checking what side effects I had (not many) and how severe (hardly at all, i.e. none bad enough to need a prescription).  The oncologist did say that when she looked closely at my scans during planning, there was a bit more meningioma there than she originally thought, so the volume being treated is a bit larger.  As a result, there might be more headaches and/or tiredness than initially thought, but we'll deal with those as/when/if it becomes necessary.  From the top view, the area being treated looks enormous, but then she showed me the side view and it's absolutely tiny in that direction!

In logistical terms, it's all been pretty good.  No problems with parking (and it's cheap, as they do a 7-day ticket for people having more-than-one-day-in-a-row treatment, for £3.40 [for the whole 7 days]).  I think about 20 minutes late is the latest any appointment has been, most have been within five minutes of the due time and I've even been called in early on one occasion.  There are two machines that do the type of radiotherapy I have, and probably four times I've been nabbed by the machine/team other than the one scheduled - I think if one is running late, the other helps out.  As a department, they see about 200 people per day over their 8 machines, so they need to keep getting people through!  Today we had the fun that the machine was having a strop, and it didn't want to do big scans.  The radiographer said it would be fine for me, as my line-you-up CT is only 7 slices (told you it was short in the side view!) which it did fine.  It did stop twice during my six-ish minutes of treatment.  They just took me out and put me back in again, which I assume is the TomoTherapy equivalent of 'switch it off and switch it back on again'.

And that's that.  Two weeks down, four to go.  "Peak tired” (or should that be "trough”?) is expected to be about two weeks after treatment finishes, i.e. about six weeks away, but from then on everything should improve.

 

Some advanced warning: Addenbrooke's Charitable Trust (their equivalent of what many hospital have as a 'Friends of ...' organisation) currently have a campaign raising money for their Brain Tumour Research Fund.  I suspect I may have to think of doing something silly and demanding you all give money at some point.  I'd do a sponsored sleep if I thought anybody could be persuaded to contribute to such a thing big grin

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Week one

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Edited by Sarah Cornell, Saturday, 1 Aug 2015, 15:23

Well, that's one week done, five more to go.  I think the main word is 'tiring'.

The patterns seem to be getting more predictable.  I'll be fine when I wake up, I'll eat breakfast and then feel some nausea.  A couple of ginger biscuits do the trick.  Then a quick bit of toast about 11.30, before getting driven up to the hospital and treated (if mother driving, then hot chocolate or similar when at hospital!)  OK when I get home, but then some time between 3 and 4 just crash completely.  Tremendously tired and feeling bleurgh, have some dinner and still feel tired but a lot less bleurgh.

I've belated realised that the bleurgh is probably because two slices of toast with Nutella are not really the most balanced thing to get you through an entire day.  Plans have been made for next week, to get some ready-made sandwiches in so I can eat something sensible without having to find the enthusiasm to make it!  Clearly I've been showing the effects of being low on food, without actually feeling hungry.  I've seen it recommended to go for lots of small snacks instead of three distinct meals if you've got radiotherapy-tiredness, so we'll give that a go.  (I also saw that 1-2 hours after treatment is frequently when people get very tired, so at least I'm crashing on schedule).

In the spirit of ginger being very good for nausea - well, it's working for me, not that I have a lot of nausea - when at the supermarket yesterday we decided to make sure that every single snack in the house was ginger-based, and that we'd get a wide variety to try:

Ginger biscuits in many and varied forms

My intention was to write this blog on Friday after treatment five, but I was simply too tired.  11 hours sleep on Friday night got me through to Saturday lunchtime OK, by which time I was very tired again (but South Street Pantry's marvellous panckaes fixed me for a bit) and here I am writing on Saturday afternoon.  But it feels like it's going to be naptime soon!  It's been a long time since I had to count my spoons, but it does feel like that could be coming up fairly soon (if that is total gibberish to you, then have a look at The Spoon Theory)

All in all, it's not exactly fun, but I didn't expect it to be.  If being very tired is really the worst of it, then things could be a lot worse.

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Edited by Sarah Cornell, Saturday, 1 Aug 2015, 14:41

The promised picture - honeycomb face following treatment (it only lasts about five minutes!)

Sarah with honeycomb impression of the radiotherapy mask on her face

Right eye nicely demonstrating both eyelid drooping (ptosis) and reduced range of motion (ophtalmoplegia) due to the oculomotor nerve palsy!

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Treatment started.

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Radiotherapy day 1.  Well, not an awful lot to report, to be honest.  Got seen by a radiographer to check I was who they were expecting, that it was my signature on the consent form, and that sort of thing.  Got warned that in the next six weeks I would get well and truly sick of giving my date of birth and address multiple times per day!  Waited around for a bit longer and got taken in to meet "Linear Accelerator 4".  Looks just like a slightly bigger CT machine (big open polo, not MRI-like tight tube) but in a reasonably darkened room.

Made myself comfy on the table and had my mask put on.  It had snugged up slightly from when it was made - that's what it does, continues cooling and shrinks slightly after it's made - but that just makes it do its job properly in holding me in exactly the right place.  On top of my eyes (well, on top of the mask, over my eyes) a couple of dosimeters were placed to monitor how much radiation is getting to my eyes.  We're not too fussed by my right eye - while they're going to do their best not to damage it, it's already got the movement and focussing problems from the tumour (which can't be fixed), it's my moderately useless eye anyway, and it's very close to the treatment area, i.e. it is at more risk than the left eye.  All due care is being taken to ensure as little damage as possible to my left eye.

The radiographers left the room and the CT scan part was done.  Evidently I was in the right position, because a couple of minutes later, treatment started.  At first it was not unlike a CT scan, just the whirring of the machine going round, but then the light show started!  Lots of blue-white flashing lights, which led me to wonder about what happens to people with photosensitive epilepsy in these situations.  The light show travelled from right to left repeatedly and gradually from top to bottom, so obviously that was as the polo was spiralling around me - completely explicable but quite fun to watch.  I asked afterwards whether that was the X-ray photons hitting the retina or directly triggering the optic nerve, but they're not really sure (or maybe they were completely thrown by being asked!)

Oooooh, I've just had a thought - it seems to match the descriptions of what astronauts see when they are in space!

As warned, there was a funny smell and/or taste as well - I couldn't work out which it was, it's kind of at the back of the nose, and a bit like a metallic ozone smell/taste.  Not actually real, in the sense of something getting up my nose, but again down to the nerves being triggered by the radiation.

And that was that - sit up, have a little chat, eventually ask someone where they put my glasses at which point they retrieve them for me and I can see well enough to stand up and leave.  "See you tomorrow” and off I go.  Found my husband in the waiting room, where he had a laugh at the mesh-mask impressions left on my face (I'll get a photo so you can laugh too).

I would say a little bit of nausea and a little tiny short-lasting (not even half an hour) headache followed.  But, given that I'd gone 17 hours without eating for the morning's blood testing, I wouldn't be at all surprised if those were caused by that rather than the radiation.  Tuesday morning I was fine before breakfast but felt a bit wobbly afterwards...a little while later, I tested the ginger biscuit theory to find that they do indeed make me feel better!  Yay!

There we are: one down, twenty-nine to go.  Don't expect a daily report - as ever, no news is good news.  I'll post when there's anything interesting (good or bad) to witter about.
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Study visit

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Edited by Sarah Cornell, Tuesday, 28 Jul 2015, 08:30

It appears that being in a trial means getting picked up from home, taken to the hospital, laying around for a bit while blood is drawn, then being driven back home again.  I'm fairly sure the taxi service is unusual for a study!

The baseline was in two parts.  The first was on Friday 17th, which included signing the informed consent.  This was set out in sections and I had to initial each bit and then sign/date at the bottom of each of the (two) pages.  I was the only person in the 'endocrinology investigation unit' that afternoon, so it was all fairly straightforward - blood taken, pituitary-thyroid stimulating stuff given, blood taken again after 20 and 60 minutes. No fasting for this one, all went smoothly, nice friendly research nurse and so on.

The second part was this morning. This involved fasting from midnight (which was in fact from about 9.15pm), which is never fun even when you're having a single blood draw at 8am. This was several tubes of blood taken (for the specific tests, but also for a comprehensive set of 'standard' tests), then stuff given for pituitary-cortisol stimulation. Them more stuff given for growth hormone stimulation (it's still important even when you are a grown up) and more and more blood drawn.  And on and on until the last tube was taken at 1.45pm.

At which point I was given lunch, which included a chocolate muffin:

Lunch box with cheese sandwich, fudge-flavoured yoghurt and chocolate muffin


The difference today was that there were four of us in for the morning. Two of us were on this VoxTox trial, another was having cortisol testing and the fourth growth hormone stuff. All fasting, all serial blood draws, and all on different schedules. Person 4 had tests a couple of hours apart, and no cannula, so he could (and did) just leave and come back as needed.  A fifth person turned up at some point for some non-fasting timed tests (they got the bed person 3 had been on, person 3 went to person 4's chair, though by the time person 4 came back, person 3 was finished and gone!)

As it sounds, it was busy.  As always at these times, there was a challenge getting the technology to cooperate - the printer would print the blood tube bar codes, just some time after the print button was clicked, by which time remembering which of the various tubes was which was fun.  Especially when one tube was doing two tests, but one tube can't take two labels, so each got one label and then all the other labels were put in the bag with the samples with a note saying 'please test for both parameters at every time point'.  At least the labels had names on, not just ID numbers!

I got to do a quality of life questionnaire, part of which was pituitary specific and the other part looked quite familiar to me as a standard form!  More nostalgically, my demographic data, vital signs and such like went on to a paper CRF (case report form, for any non-clinical trial people who've got this far in reading this - the thing you record all the required information in). Just a single copy, no duplicate or triplicate stuff here. It had shocking things like a space for my name! There was also a box for my subject id but that hadn't been filled in yet...

All in all, interesting to see things from the other side - good to see that systems aren't always designed with reality in mind every step of the way!  Easy to see how if you have lots of patients and protocols going on, it's not surprising things don't go entirely according to plan.

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Study intro

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For those that aren't aware (possibly that's everybody except my colleagues) - I work in clinical trials.  I work for a pharmaceutical company, and I build the forms which the doctor accesses online to fill in the data we need, I program checks that look for odd/inconsistent data, and I get the data out in to datasets in the right format for the statisticians to do their magic with.  I'm very familiar with clinical trials from the sponsor's point of view (sponsor = company/institution/etc running the study).

At my planning visit I was invited to join an observational study.  Observational, in this context, means there is no intervention - no medicine or procedure or something else being tested.  This is great because it means there will be no difference to my treatment whether I participate or not.  Though to be fair, it's not like they would be allowed to do a trial that gave, say, placebo radiotherapy!

Each day of my radiotherapy, I'm having a CT done first.  This records my exact position, so the radiotherapy machine knows where is tumour and where is not, and delivers the radiation appropriately.  Because the CT scanner is built in to the radiotherapy machine, and the treatment is being image guided and intensity modulated, this all adds up to the fact that they will know not only exactly how much radiation various bits of my tumour got, but also exactly how that relates to the other structures in my head (i.e. the healthy tissue, how much radiation it was expected to get, and how much radiation it actually did get).

If I didn't join the study, here's what would have happeend: couple of tubes of blood drawn pre-radiotherapy, and then annually after radiotherapy, to monitor pituitary function.

Of course, I did join the study, so this is what will happens: before radiotherapy, have a hungry day: Fast from midnight, get to hospital and have blood drawn.  Be given some glucagon, have successive blood draws to monitor growth hormone response.  Be given some thyrotropin-releasing hormone, have successive blood draws to monitor thyroid stimulating hormone response.  Be given some synacthen, have successive blood draws to monitor adrenocorticotrophic hormone.  All in all, about five hours of giving me things that should make my pituitary do stuff, and then watching what it does.  After all of which, I will be given something to eat and drink, hurrah!!  To be repeated at 6 months, 1 year, 2 years, 3 years, 4 years and 5 years after radiotherapy.  In the middle of the one-year gaps between testing, have the standard test I would have had annually done by the GP.

So I get monitored twice as often as I would have, which is obviously good for spotting sooner if something goes amiss.  Yes, I have to be hungry, but that's not the end of the world, really, it isn't (although it may not seem like it, when I'm hungry I can be a little bit grumpy...)  And it's only seven times in five years.  And, of course, for Science big grin

The magic will happen when all radiotherapy machine data (to determine how much radiation went where) and the blood test results (to monitor pituitary toxicity) get tied together across 2,000 patients.  The hope is that it will become clearer that if we treat at point X with Y Gy of radiation, side effect Z is more likely/less likely/guaranteed/etc.  Treatment is already precise, but it could become even more precise - in future it might be possible to still treat your tumour but reduce the radiation exposure to certain areas of healthy tissue (e.g. beam the radiation in from a different direction) to reduce certain side effects, if it turns out that particular areas are extra-sensitive.

Because I'm unavailable next week, and radiotherapy starts on the 27th, I'm actually doing my first visit in two parts.  Part one - non-fasting, one hour - is happening tomorrow afternoon.  Part two - fasting, five+ hours - will be done in the morning before my first radiotherapy on Monday 27th.  As seems to be the case with so much of this process now, curiously excited by it all big grin

For my colleagues, I will be taking notes and no doubt letting you all know what it's like to see a trial from the other side!
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Dates, dates, dates.

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Edited by Sarah Cornell, Friday, 3 Jul 2015, 16:52

Today was the MRI, mask-making and planning CT.  That all went really well.  Everyone was utterly lovely, of course.  There were only four forms that needed filling in this time smile

My mask wasn't quite like the picture I posted, instead it goes over the shoulders.  To keep my hair out of the way, it got put in to bunches, which must be the first time I've had bunches in about 35 years big grin
White mesh radiotherapy mask that covers the shoulders

The visual fields testing will be on 3rd August - the earliest they could see me was 20th July (when I am on holiday), and when I phoned up to move it that was the next available date.  But I am still able to start treatment on 27th July, though!  The visual fields changes that we are monitoring for are something that would take place over years, so having my baseline test done one week in to treatment is not a problem according to the oncologist.

They've actually given me my full schedule - 30 treatment appointments and three review appointments, Monday 27th July to Monday 7th September.  Usually it finishes on a Friday, but I'm not getting treated on the bank holiday Monday in August, so one day gets added on the end for that.  Oh, and those review appointments are scheduled for immediately before or immediately after a treatment appointment, so no hours of hanging around or having to go somewhere else or anything, how jolly organised (maybe, just maybe, they've done this before!)

The only bit of pre-work remaining is the blood tests for pituitary function - and the reason they weren't taken today is because I've been invited to participate in a research study.  I am almost certainly going to say yes to this.  It involves detailed blood tests for pituitary function - it means fasting from midnight and then having blood draws over about five hours while they give you things to measure your growth hormone, thyroid and cortisol responses, i.e. how well the pituitary is.  This gets done before treatment starts and then six times in the following five years.  There's also the standard pituitary function tests done in between these bigger visits.

It's basically the pituitary testing I'd be having done anyway, just in more depth and a bit more often.  It can also be matched up with my scans so that they can try to correlate more precisely treatment locations with subsequent dysfunction.  In essence, they want to know if they can make better predicitons about the long term side effects based on exactly where you are being treated and how much treatment you are actually getting.

In the tradition of clinical trials everywhere, it even has a name: VoxTox (which I have to say is a lot less contrived than the names of a number of the trials I've worked on!)

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Things are happening!

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Edited by Sarah Cornell, Monday, 29 Jun 2015, 17:35

A couple of people have asked, and all of a sudden things are happening, so here's an update to tell you all what will be happening, but now with some added dates!

Planning

There are things we want done before starting anything.  This includes getting a new set of visual fields tests and a set of pituitary function blood tests.  This will give a baseline to measure future changes against.  While the visual fields tests I last had done were only at the end of April, it'll be worth doing just to check for any (or, far more likely, no) changes.

Similarly I'll be having another MRI.  It's not expected that there will be any changes in two months but that too will be good to confirm.  And obviously there will be a change in that the lump they biopsied will be gone.

That's been scheduled for Friday (3rd).  I've just had a phone call saying that after the MRI, could I please go along to the Radiotherapy department for mould-making and the planning CT.

Mould-making is done with a thermoplastic mesh that gets warmed up and then put over my face and shaped to fit.  Radiation and a mask - surely this time I guaranteed development of super powers?  But really, it's to make sure that when I am treated, my head is in the exact same place on the table every day - it's not much use having seriously sophisticated radiotherapy machines guided by computer imagery if you can fidget!  Getting lined up right is the main reason why, for my six or seven minute treatment, I should expect about 25 minutes on the treatment table.

I found this picture online of a radiotherapy mask - note that they often cut holes in for eyes/nose/mouth, so it doesn't have to be as claustrophobic as it looks.The other good thing about a mask is that it gets any position marks, rather than me - people having radiotherapy often get tiny marks 'tattooed' on them, but as it's my face they won't be doing that, which is nice.

White mesh radiotherapy mask being fitted to a patient

So that's:

  1. Visual fields - TBC
  2. Blood tests - TBC
  3. MRI, mask and CT - Friday 3rd

Treatment

I don't know when treatment is going to start yet.  The earliest it will be is 27th July, in order to be after I get back from holiday.

Addenbrookes has two rather snazzy tomotherapy machines, which I gather are pretty much the best things ever in terms of delivering accurate radiation to one place while leaving the bits surrounding it as unradiated as possible.  The machine incorporates a CT scanner, so they can look at what they're doing as we go along - and, no doubt, check I'm still laying in exactly the right place!

Here's what one of these machines looks like, which is not disimlar to the giant Polo look of a CT scanner:

Tomotherapy machine


Follow Up

After my six weeks of Monday to Friday treatment, obviously I'll have ongoing follow up for any immediate side effects.

Longer term, there will be an annual blood test for pituitary function.  I don't know how often I'll have to have the full visual fields testing, but my optician will do a basic visual fields test as part of my annual check up anyway (and he will jump on anything that even remotely concerns him, knowing him).

Follow up scans to look at the tumour will take place at six months, one year and two years.  There might be one at three years, but in any case there will be one at five years.  There might be one a seven and a half years, and there will definitely be one at ten years.  If, at the ten year scan, it's still doing nothing, then they will consider discharging me and this whole palaver will be well and truly over.

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Radiotherapy plans

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Today I saw the oncologist to discuss what happens next.  She's a very nice lady.

Better than that, though, today I saw a picture of my brain!  Yay!  I do have a brain and it looks pretty much as it should.  Well, excepting the meningioma.  It's a funny shape - the meningioma, not my brain.  It's in a sinus (an 'empty space'), so it's kind of squished itself in to that gap, with the bit poking through to my nose (which isn't there anymore as that's the bit they grabbed to biopsy).  But, roughly speaking, it's a similar size to my eyeball.  Which means we're probably safe to assume it's been there 20 years.  Which is a very strange thought.  (It is still most likely a coincidence that 20 years ago is when I started getting migraines.)

What was great was that in the picture the splodgy white tumour had a black perfect circle in it - my hardly affected carotid artery, going through the middle of it, carrying blood to my brain just like there's nothing unusual going on at all.  (As and when and if I get a copy of any pictures for myself, they will of course be shared!)

We discussed the treat-now versus the watchful-waiting options.  She agreed that neither option was clearly right or wrong, but she picked up on the fact that I was leaning more towards the treat-now choice (plus I said the neurosurgeon recommended this).  There are risks with treating now - long term the main ones are that treatment might damage the optic nerve and might damage the pituitary gland.  Countering that, though, is that if the tumour is growing (and given that the different size pupils symptom is relatively new, that's not a wild assumption), it's soon going to start squishing the optic nerve and/or pituitary gland anyway.  Any damage the tumour does won't be reversible, so I think let's get the treatment done and out of the way.

The risk of the optic nerve damage in particular is low.  Other eye risks - cataract and retinopathy - are also unlikely, but eminently treatable should they happen (plus, this is my right eye we're talking about, i.e. the fairly useless one!)

Even the more likely long-term side effects are very easy to deal with, e.g. the pituitary is quite likely to lose some function, but it might take several years for that to happen.  That would be something like pituitary stops producing thyroid stimulating hormone, thyroid then stops producing thyroxin ... so I take replacement thyroxin in the form of a tablet, job done!

There will be a new CT and MRI done during the planning stage - which means we can see if anything has changed in the last couple of months, but also use that to plan the treatment because we need to know the exact shape/location of the tumour.  The previous scans are no good for that now, because I've had a lump chopped off since then in the biopsy!

The treatment machine used will beam radiation in to my brain from all different angles, which will converge on the very precisely modelled exact location of the tumour - so the healthy bits of my brain will get a little bit of treatment (which, because adult brain cells don't do much growing, will have pretty much no effect) but the tumour gets loads of treatment.

During-treatment side effects are likely to include tiredness - I'm lucky in that I'm looking at medium-intensity radiation, which will hopefully mean this won't be at the most severe end.  There may be some nausea, because of what bits of my brain are being hit (but there are anti-sickness pills if it's a problem, though she recommended trying ginger biscuits first, which sounds perfectly reasonable to me.  Maybe I'll get some in anyway, just in case).  There may be some patchy hair loss, you can imagine it as a 'headband' around at eye level, i.e. where the beams will be going in.  Because of my hair style, that won't be a problem - the bits on the top won't be affected, and can hang down and cover any baldy bits until it grows back (which might be some time after treatment ends).  The skin in these areas might get a bit stroppy, so it's probably best to wear a hat when I'm outdoors for the year or so after treatment, yay, an excuse for hat shopping!  My eyes might also get a bit dry, but that's another really easy fix with eyedrops.

Essentially none of these side-effects seems to be so bad that not treating seems worth it.  Not when you consider that I'd be constantly wondering if that was the right call, and wondering if irreversible eye damage is happening, and so on.

The treatment will be five days a week (Monday to Friday) for six weeks.  Time on the treatment table will be around 25 minutes, with actual treatment being up to six minutes of that.  This will be at Addenbrookes, so around 45 minutes drive each way but allow an hour to be in plenty of time, etc.  In effect, I can probably write off half a day for six weeks.  I won't be able to drive myself - I'm not allowed to for the duration of treatment - but I already appear to have a team of volunteers to get me there and back again (though if you fancy joining in, you'd be more than welcome!)  And there's virtually door to door public transport if necessary, so I've got no worries for getting there.

We have a holiday booked towards the end of July.  The oncologist looked at the dates, said we'd try to get the planning stuff done before the holiday to start treatment after the holiday.  Our next holiday is then seven weeks later.  If all goes well, we'll be able to squeak the treatment in to that gap, but we might not be able to start exactly when we want.  So the next holiday, in September, might need to be cancelled/delayed/etc.  But if that's the worst side-effect of treatment, there's not really much to complain about, is there?

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Happy normality.

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Edited by Sarah Cornell, Tuesday, 9 Jun 2015, 13:35

A week and a bit of getting back to normality has now passed.  My normal life being boring and normal, there’s not a lot to blog about.  I’m back at work full time until I’ve decided what’s happening next, and life is life, you know what it’s like: the lawn needs mowing, the cat wants attention, books need reading, though it all feels very strange.  I think that’s because May was so Very Hugely Abnormal, June suddenly seeing a reversion to near-normality is causing something akin to culture shock.

The last week has been wonderful.  For those who knew and were waiting for results as eagerly as I was, it’s been great to pass on the good news.  It’s just been a week of joy and smiles and “let’s all go to the pub for lunch” and just most wonderful relaxation compared to the preceding 27 days. I shall try to capture the momentum of this happiness and turn it in to Doing Stuff, such as the things I’ve had on the mental to-do list but never got around to doing anything about and they’ve now been put in to a little more perspective.

In a summary of the medical situation: The headaches/migraines are simply headaches/migraines.  There is no raised intracranial pressure, they are not caused by the tumour (a tumour causing raised intracranial pressure gives a distinct type of headache, which is not the pattern my headaches match).  I am now keeping a full headache/trigger diary – one I fill in every day and say what happened, not just one I fill in with what I happen to remember when I actually get a headache (from the latter you’d learn that I ate chocolate in the 24 hours before both of my migraines this year; from the former, you’d also see I ate chocolate practically every other day of the year too...)  This has the potential to go to a neurologist at some future point for investigation, though I’m pretty sure I’ll leave that until after the current nonsense is settled down.  After all, if there are treatments or investigations or this or that or the other changing then that won’t help pin anything down.

The eye problems all relate to the third cranial nerve and are all consistent with that nerve being affected by something, and there’s a fairly obvious culprit for what that something is!  It’s therefore very likely that the eye problems are caused by the tumour (for it not to be the tumour, I’d not only have to have the unlikely brain tumour that happens to be in the exact right place, but some other unlikely condition too – possible, but so unlikely that we can reasonably assume that’s not the case).

Radiotherapy is the treatment.  The choice is: I can leave it a while – see how the tumour is growing; or I can go for it now.  If we watch for a while, we may find the tumour is doing nothing, thus the radiotherapy is unnecessary.  The thing is, if it is growing, then not treating it risks the eye problems getting worse.  So it’s one of those things where you can argue either way.

The neurosurgeon said if it were him, he’d treat now; obviously I will take the advice of the oncologist* who I’m seeing next and see what her opinion is.  Treatment while my vision is broadly unaffected rather than risking that getting worse seems a good plan to me.  On the other hand, my right eye has been pretty useless since birth, so there’s not necessarily a great deal to lose (...unless it deteriorates in a way that gives me double vision, and then what there is to lose is my driving licence, which I’d rather keep if at all possible).  For now, about the only time I have noticeable vision problems is when people are doing eyes tests and shining stupidly bright lights in my eyes and so on!

So all in all, back to waiting – for the oncologist appointment and deciding on what happens next.  But it is now waiting without any urgency, and without the Great Big Scary Unknown.  And in the meantime, boring normality enjoyably reigns smile

 

* Yes, oncologist.  In popular parlance, an oncologist is a cancer doctor.  But in scientific-speak, an oncologist is someone who treats tumours.  Clearly, the bulk of an oncologist’s work is to do with cancer, but they also deal with non-cancerous tumours too!  Everyone seems to be saying that this next person is a ‘radiologist’ which I think is simply to be not-scary, but then a copy of the referral letter turns up with ‘clinical oncologist’ on it so all they’ve done is use the potentially-scary word when I’ve got nobody around to correct me had the word panicked me!  Anyway, whatever title we give her, this particular lady is a specialist in radiological treatment of central nervous system tumours, so exactly who I want to see.

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A post for the “random strangers”.

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I know a few OUers have posted comments as general blog-readers rather than people specifically directed to read my blog - I just wanted to let you know that you are all brilliant as well.  Thank you for your well wishes, and thank you for your happy responses to the biopsy results post.  Obviously I was rather pleased with the results; I expected friends and family to be similarly pleased for me; having my “random strangers” (as one of you named yourselves) tell me I’ve made their day too is just wonderful!  That’s probably one of the things that’s taking the most adjusting to right now – yes, I say to my husband perplexedly, obviously people are happy for me...but everyone is just so over the moon...

To Simon specifically – I’ve been pretty determined not to give it a name, but Benny might just stick as that’s a fabulous suggestion!  I was commuting to work this morning on the tube (I only have to do this once a week – work at home the rest of the time) and I saw a lady with one of those ‘Baby on Board’ badges.  It made me think of your suggestion that there must be something to get out of this – I now want a badge to wear when commuting, though ‘Benny on Board’ will mean nothing to almost everyone!

In OU-related news: Wednesday (3rd) would have been exam day for S383 (relativistic universe).  I was all set to withdraw, but the nice man on the phone talked me in to deferring (I’ll admit that wasn’t too hard) – because if right now I deferred for the next presentation (with assessment banking) I could later turn that in to a deferral for the presentation after (without), or even a complete withdrawal, if that turned out to be necessary.  One reason I’d been set on withdrawal was that the deferral regs say that you have to complete your deferred module before you can start another.  Having got 95% of the way through S383 (two weeks and one assignment left!) I couldn’t quite stand the thought of doing the whole 95% all over again just to get those last little bits.  But, because both S383 and my next module are 30 pointers, they said it was fine for me to do the deferred S383 alongside.  So I can have new things to learn to provide suitable enthusiasm, but must try and remember everything so that this time next year I can get through two exams at once... (oh, damn, just realised I’ll be doing deferred relativity alongside new quantum mechanics.  Might have to rethink this...)

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Results

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Ladies and gentlemen, the wait is over - it is formally identified as a benign meningioma!

This is very very good indeed.  If you were to list out all the different types of brain tumour, and then have to pick one to have, benign meningioma would be your choice every day of the week.

There was enough active tissue there to identify it as a meningioma - so I'm not a complete pebble head.  But in general, these beasties grow at the feeble speed of about a millimetre a year so it's all now distinctly non-urgent.

I'm going to be referred to a radiologist to discuss what we do next.  There are two options, with neither being right or wrong.  The first is to have radiotherapy now, hoping that we put it to sleep.  The second is to monitor it for the time being, and then radio it at a later date if it is causing problems or puts on a growth spurt.

The radiologist will be the person to talk to, it being her job to be the expert in these things and help me make my choice.  I'm sure I will write about the arugments each way at some point, but right now I can't think of anything other than 'Benign! Benign! Benign!'

I'm off to find some chocolate big grin

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Results tomorrow

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Edited by Sarah Cornell, Wednesday, 27 May 2015, 21:37

Well, that was unexpected.  A phone call today letting me know that the results are available.  With the convenient fact that the neurosurgeon has a clinic tomorrow and has an appointment in the afternoon should I want it.

Should I want it?  Of course I said yes!  Waiting extra time knowing that they know but I don't would be a nightmare.  At least this way we only have one night in which to get no sleep whatsoever.

I can't help but be amused.  The estimate was 7-10 days for plain tissue, 14-21 days for something more calcified.  So of course they've phoned me on day 12, giving me no clue whatsoever as to what way this might be leaning.  I keep reminding myself that the CT showed lots of calcification, and the surgeon saw nothing to make him revise his unconcerned position; trying to ignore the possibilities and instead concentrate on the probabilities!

Also worth pointing out that I was offered the appointment tomorrow if it 'was not too short notice', not because there was any need for an urgent 'get in here tomorrow' visit.

Obviously messages/emails/posts will be forthcoming at some point, but don't expect anything before late afternoon/early evening.

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Waiting

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There’s not a lot to say, but I thought I should post something so you don’t think I’ve forgotten you all.  My main thought at the moment is that waiting is dull.

But that’s an awful lot better than I thought it would be.  I’m so pleased that the ludicrously high stress level that persisted between phone call and biopsy have lessened remarkably.  I’m not going to say I’m completely chilled, but it’s a lot better than I expected it would be.

I expect the stress levels will go up again as we approach results-time.  If I haven’t been told when my follow up appointment is by 5th June, then I’m to phone up and make one; which we will expect to be the following week, so this could go on until the 12th June.  Long time, but I keep remembering that the longer the wait, the better the results are likely to be.  We’re pretty much halfway through the ‘waiting for appointment’ time, so not quite halfway through the ‘waiting for results’ time.

To brighten the place up: here is a picture of some lovely flowers that turned up on Thursday 14th (and they are still looking very good).  They came from my department at work.

 Lovely bouquet of pink flowers

When I got home from hospital, I had another parcel from them which was a basket of lovely bath stuff (I hope that’s not because they think I smell).  That should last a goodly while, though I do seem to have pretty much finished all the chocolate/cake/biscuits that turned up one way or another following the phone call.  Though I’ve just remembered there are a couple of tubs of ice cream in the freezer, so there’s something to look forward to.

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Post-biopsy update

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Edited by Sarah Cornell, Sunday, 17 May 2015, 12:07

Well, there's nothing quite like a good night's sleep in your own bed!  Feeling very good today.

The procedure itself on Friday went very well.  A decent sample was collected.  Because of the way it's grown over in to my nose, it turned out when they got there that they didn't actually have to break the barrier in to the brain/cerebro-spinal fluid.  That makes it a much safer surgery (in terms of infection risk, complications, etc) - it also means that technically I haven't undergone brain surgery.  This will make the DVLA easier to deal with, if nothing else!

At the visit last week, the consultant was relaxed and almost unconcerned about what was going on.  While nothing is definite until the pathologist has the cells under the microscope, it's fair to say that from this procedure he saw nothing to make him revise his relaxed and unconcerned position.  He's said to make the follow-up results appointment for four weeks, because there's plenty of calcium to dissolve out of the sample before they can get to the cells.  No guarantees, nothing definite, but essentially things appear to be pointing away from the big scary negative options.

I'm very snuffly - I'm sure it could all be cured with a good nose blow, but I'm not allowed to, I've just got to snuffle and annoy anyone within earshot until it clears itself up.  It's got to the point where I can nearly breathe through my nose now, so getting there.

I have a spectacular bruise on my left wrist from where they had intravenous blood pressure monitoring going on; and a smaller example at left ankle, right ankle, back of right hand and back of left hand where various lines went in.  Couple of sore spots on my head which it took me a silly amount of time to realise was, of course, where they had clamped me in place.

But all in all, it couldn't have been better (not that I'd recommend any part of this experience to anyone!)  Didn't even need any painkillers after the op, and was all set to be going home the same day until my nose decided to bleed a bit so they sensibly kept me for the night instead (which was the original plan - it had just gone so well in the morning that the consultant saw no need to detain me!)

*****

And finally, a little bit of me being me.  I recall being in recovery, coming round from the anaesthetic, where they ask you the questions to ensure you are 'oriented in time and space'.  I got:

Where are you?  Addenbrookes.

What month is it?  May.

Who is the queen?  Queen Elizabeth the Second [presumably I said this so that there was no confusion that perhaps I thought I was coming round from anaesthesia in a state of the art medical facility of the 1560s].

Who is the prime minister? <pause for thought> David Cameron.  Aha, says the recovery room man, nearly got you with that one.  I hope that if there had been a change of government last week there would have been dispensation for a slightly out of date or slow answer!  Mind you, the last time I had a general anaesthetic, it was the day John Major resigned as leader of the conservative party (he stayed as PM, but with the intention to resign if he'd lost the subsequent leadership election).  So next time I have GA, I'm going to try to remember to be cheeky and say who was monarch or PM when I went under, but who knows what's happened in the last four hours?!

Permalink 1 comment (latest comment by Simon Reed, Sunday, 17 May 2015, 13:48)
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Sarah sitting on the steps outside the Fitzwilliam Museum in Cambridge

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Very quick note to say I am home.

I slept for under five minutes last night. No pain, no problems, just a very unfamiliar environment and a vocal fellow patient or two. Mind you, I was on hourly vital signs, so if I had dropped off at some point they would just have had to wake me up, so laying there all night just being relaxed was probably the best option!

I've had a good nap since I got home, and I think it's time for another. I'll probably write a bit more tomorrow but just wanted to wave hello to everyone for now.

Permalink 1 comment (latest comment by Jeanette Spencer, Saturday, 16 May 2015, 19:09)
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