New blog at Mermaid & Ink!

Hi y'all! it's been a crazy long time since I last wrote on this blog. I've not given up on blogging completely though - I've recently started writing again, only this time I'm not just exclusively focusing on my health issues. You can find my new blog at www.mermaidandink.com, where I write about my work as a professional mermaid and performer, art, baking... and, of course, the magical world of pituitary tumours and weird medical oddities. I would love to see you there!

My latest check-up with endocrinology

So I made it to the hospital on Thursday for my appointment, and it went about as well as I could have hoped for. First stop: getting weighed (58.4kg). Second stop: blood pressure, resting and standing (both totally normal - a good sign as when I'm taking propranolol it's often very slightly low). Third stop: a comfortable chair in the waiting room for an hour.

Just as I was starting to think that I might actually have been forgotten, my endocrinologist swooped in. It was a pretty quick appointment really. My blood tests look good. I had a good response to the synacthen test and can stop taking hydrodortisone (if you don't understand all this medical terminology, in short: that is good!). All my thyroid hormones are solidly in the normal range - including the alpha subunit. The alpha subunit (a.k.a. chorionic gonadotropin alpha) is a protein. People who have TSHomas/thyrotropinomas often have an unusually high level of it in their blood. The normal range of the subunit in blood tests is below 1. When my blood was first tested for the alpha subunit, I think my level was about 13. My most recent test showed it at 0.95 - not only normal, by far the lowest it's ever been for me. Even after my first surgery it was around 5 or so.

So thus far, everything looks good and they don't want to refer me for radiotherapy. I don't particularly want to have radiotherapy, so that is excellent news. My MRI shows scar tissue, but nothing that looks like residual tumour, and my pituitary gland appears to be functioning normally despite two surgeries. Of course, if a few cells or a teeny tiny bit of tumour has been left behind, there's basically no way to tell unless it grows back, so the policy is just to watch and wait.

Next appointment is in six months. I had another round of blood tests and they kept some of my blood on ice for the various studies they do on TSH-secreting pituitary adenomas. I'll have another set of blood tests before the next appointment and see how they change. In the meantime, basically I just keep on keeping on!

Appointment Time Tombola

Well hello there! Another pause in my updates, but this time a legitimate one - I was on holiday! The lovely boyfriend and I went glamping in Cornwall. We stayed in a yurt, it was pretty epic.

I had an appointment with the endocrinologists last Thursday. That sentence makes it sound so simple - but of course, before I could get to see a doctor I had to first negotiate the administrative no-man's land that encircles my endocrinologists as though they were a small patch of strategically valuable land just south of Ypres. Their administrative systems certainly appear to be about a hundred years old.

On my return from my holiday, I was expecting a letter from the hospital informing me that I had an appointment at the end of July. What I got was a letter from the hospital informing me that I had an appointment at the end of October. As I had just had a full round of blood tests in preparation for the putative end-of-July appointment, this seemed even more stupid than usual.

So, of course, I telephoned them. And discovered that the usual method of getting hold of anyone at the hospital (dial number; doggedly hold onto receiver while it rings 40~ times; hang up and try again later) had been changed to an even more infuriating system, whereby the phone will only ring three times before you are transferred back to an automated message informing you that "This extension does not answer" and requesting that you dial 1 to try again, or 2 to leave a message. After three doses of this eerily robotic speech, I gave up and left a message. Like some kind of naïve idiot.

Obviously I didn't hear back from them, so I called again and again and after dialling 1 so repeatedly that I feared breaking the button, I reached a human. I introduced myself and mentioned that I had left a message. She said "Oh yes, Emer, I have your message right here actually." I said, "Ok, great."

Then there was a long pause.

Eventually she said "So, how can I help you?"

"How about by DEALING WITH THE ISSUE I CLEARLY EXPLAINED IN MY MESSAGE?" was what I did not shout at her, because I am used to this by now and understand that the endocrine admin staff believe that actually responding to messages dilutes the soul.

Anyway, I repeated everything I'd said and she informed me that a number of appointments for July and August had been pushed back to October (no, no-one deigned to explain why), and I could not possibly get another appointment before that date. It took quite a bit of arguing, and pointing out that I was currently taking a medication (hydrocortisone) which was quite possibly medically unnecessary but which I would have to continue to take until I saw an endocrinologist to get the results of my latest synacthen test, to get passed to the booking manager. Then I had to go through it all again but eventually she offered me a cancelled appointment in two days time.

I had intended this post to be about the results of that appointment, but it looks like we'll have to save that joy for another day. I do feel a great sense of post-rant relief however! Phew!

Six Months post surgery

It's been over six months now since my last bout of brain surgery. Time has certainly flown! The first two months after surgery are pretty weird really - on the one hand, at the time everything seems to go very slowly because a) doing minor things like making a cup of tea are a huge effort, and b) you get pretty bored sitting around but don't have the energy to actually do anything. But in retrospect, time seems to have sped by, because the days of recovery just turn into a vague blur of teacups and low-quality daytime TV.

So how am I doing? I haven't actually really taken the time to sit down and address that question in a blog post for quite a while. This is, happily, probably because the answer is: pretty good! Everyone who knows me is now bored of me going on and on about how much muscle I have put on in the last six months - not least because, as far as outward appearances are concerned, I have not visibly morphed into Arnold(ina) Schwartzenegger. For which I am rightly grateful.

But for years, the high levels of thyroid hormone rushing around my system have been subtly damaging my muscles and impairing my body's ability to produce new muscle. When I had a body density scan last July, the results freaked me out a little - I had a high percentage of body fat - but my endocrinologist explained this was probably due to unusually low muscle rather than high levels of fat. Since recovering from surgery, though, I have gone back to doing the same level of exercise I had been doing previously - several hours of dancing, lots of walking, and I've now started swimming and the odd cycle ride - but the difference is remarkable, because I'm finally actually seeing results from it. Things are becoming noticeably easier than they were even before I was diagnosed. I bought a new bicycle a few weeks ago and then went on a bike ride with my boyfriend, and actually got a bit teary-eyed by the end, because we'd cycled for around an hour and finished with an uphill stretch and I felt.... Totally fine. Even back in my first year of university, three years before I was actually diagnosed, I would have found that quite a push. I always blamed myself and assumed I was just really unfit but it did seem unfair that even when I played badminton regularly, walked lots and cycled, I always seemed to find exercise much harder than everyone else. Now, looking back, I finally know why.

Other positive things include an improvement with my hair - if you've read my blog before, you might remember that my hair has been falling out on and off since I was about 17 - the first symptom of my pituitary tumour. It has definitely improved since surgery. It's quite normal for your hair to fall out a bit for a couple of weeks about three months after surgery, which did happen, but overall I have noticed an improvement. It's falling out less when I wash my hair, and I have lots of short new hairs growing around my hairline (which actually just looks like a hilarious fluffy mess, but I do not care). It's not entirely linear progress - about a week ago I had quite a lot of hair come out in the shower - but it is progress. Of course, the trouble with hair is that it grows slowly, so even if the good progress continues it would still be quite a long time before I see my hair back to normal - and I guess it's probably unlikely it will ever get back to how it was before. I haven't been to a hairdressers in years because I just hate having the focus on my hair, and I've worn a hairband every day since midway through my third year at university (now three years ago - wow!) to hide just how thin and patchy it is. It would be really nice if I could feel confident to go out with my hair down again.

In other news, my heart still goes a little fast now and then but an ECG scan I had a month or two back didn't show anything strange. I'm supposed to have been referred for a 24 hour heart tape, but nothing seems to have come of it - I need to contact my GP's again I guess.

I'm resigned to the fact that my nose and sinuses are never going to be the same after two pituitary surgeries via the nasal cavities, but there you go! I take a fluticasone steroid nose spray every day which helps to minimise the irritation. Having started swimming, I've noticed that my nose and sinuses become hugely irritated by the chlorine and if I don't use my sinus rinse after swimming, I wake up the next morning sounding incredibly nasal. I love singing and occasionally if my nose is really irritated it does affect my voice, but for the most part the fluticasone spray seems to work.

So there you go! Six months down the line, overall I'm probably feeling the best I have in a very long time, albeit with some minor niggles. Fingers crossed the good progress continues.

A Day in the Life of an Irregular Blogger

Aloha! It's been another age since I've written in here! My apologies. I thought I'd pop by to give you a quick update.

Way back on the 15th April I had an MRI scan at the hospital (so long ago that I had to look up the dates in my diary at work...). I didn't get the results until the 20th May, when I had an appointment with a very nice nurse in Neurosurgery. My lovely boyfriend came with me to the hospital and saw the scan images, so I guess now he is in the enviable position of having seen exactly what's going on inside his girlfriend's head!

The scans look pretty good - it's always hard to tell just from an MRI, but the surgeons were optimistic that they managed to remove the whole tumour, and there's nothing obviously wrong in the images. The trouble is that the pituitary gland is so tiny - about the size of your little fingernail - so even with the contrast injections, at best an MRI is only an indication of what's going on in there - blood tests are very important as well. But the surgeons are very happy with me, and as far as they're concerned, I don't have to have another MRI for a year. Hurrah!

On the 27th June I went to see the endocrine nurses for a synacthen test. This test evaluates how well the pituitary is producing adrenocorticotropic hormone (ACTH). This hormone is really crucial for your body, and because there's always a risk that surgery can damage the pituitary gland, patients who have transsphenoidal surgery are put on replacement steroid medication as a matter of course. The doctors will only let you come off the medication if a synacthen test shows your pituitary gland is now able to produce ACTH on demand.

I already had one of these tests back in March and my pituitary had a fairly good response, but not quite good enough to come off the medication totally. The endocrinologists halved my dose of hydrocortisone, but I'm still taking 5mg in the morning and 5mg at midday. I'm hoping that the results of my test last week will be good enough for me to come off the steroids totally. It would be in line with what happened after my last operation, when it took about six months before I was able to come off medication. Certainly immediately after the operation I was in need of the steroids - about a month after surgery, I forgot my 4 o'clock 5mg dose, and was a complete emotional wreck all evening until I remembered I hadn't taken it at about 7pm. I took it - and half an hour later I was already feeling immensely better. More recently I have forgotten to take my hydrocortisone on time once or twice and not had any ill effects at all, which hopefully is a good sign.

I don't know yet what date I'm due back at the hospital for my next proper follow-up with endocrinology. I had thought it would be the end of June, but apparently it's actually going to be the end of July, four months after my last clinic appointment. Then I should get the results of the synacthen test, and the other blood tests they did at the same time to check my thyroid levels.

I'm Still Here!

 Aloha! Long time no blog I know, profuse apologies all round. Partially I have been lazy, partially I have been working on other projects and partially I have been enjoying my recovery!

I went back to work around the beginning of March. I did a phased return, which I really recommend - the first couple of days back I felt pretty much exhausted by lunchtime, but by the end of my first week I was almost back to normal. So I've been back for two months now (how time flies!) and doing good.

I had a series of blood tests done in March by my endocrinologists and they came back looking good. My ACTH response wasn't quite back to normal, so I'm still taking hydrocortisone (albeit at a low dose), but my endocrinologists were optimistic that hopefully I'll be able to come off it in a few months. The same thing happened after my first surgery, so fingers crossed! The rest of my pituitary hormones are all fine - my TSH and free T3 and T4 came back the lowest they have ever been.

I'm back up to my pre-surgery level of fitness now too, and hopefully going to surpass it! I dance for 3 hours a week, swim for an hour, do lots of walking, the odd run, and yesterday I bought a bicycle so now I'll start doing some cycling too. I'm only taking propranolol very occassionally - I still get the odd bout of a fast resting heartrate, particularly after eating, but it's not often. I'm off to the doctors for an ECG to check that out tomorrow, although chances are it won't show anything and they'll need to do a 24-hour heart tape.

So all in all things are looking good so far. I've had an MRI scan now but I don't get the results til the 20th May when I go to meet with the neurosurgeon. Fingers crossed!

Happy National Recovering From Brain Surgery Day!

It's a tricky in-between sort of day today, sandwiched between Pancake Day (yay!) and Valentines Day (yay!). Technically it's Ash Wednesday, the first day of Lent, but that just means you can't do anything fun. And I can't do anything fun anyway (that is actually a lie, I have watched a lot of TV and read a lot of awesome books while recovering). So, I decided: I have co-opted February 13th to be National Recovering From Brain Surgery Day! Hurrah!

Are you recovering from brain surgery? No? Then you should find someone who is and shower them in affection and expensive gifts. Then you should probably leave them for a couple of hours so they can have a nap. But then you can come back and give them more gifts! Because that is the meaning of National Recovering From Brain Surgery Day. Hurrah!

This adorable hedgehog is wearing a hat to celebrate February 13th, as science has proven that people recovering from brain surgery enjoy pictures of cute animals wearing hats.

If you are recovering from brain surgery, then celebrate National Recovering From Brain Surgery Day by demanding attention and love from all those around you. But don't strain yourself. Hey, maybe you should take a nap. Hurrah!

Now for the awareness part: Brain tumours are more common than you might think, especially amongst younger people. Brain and central nervous system tumours are the second most common group of cancers in children in the UK, and they kill more children  and people under the age of 40 than any other type of cancer. Yet brain tumour research receives comparatively little funding; just 1.4% of government spend on cancer research related to brain tumour research in 2011, although the proportion spent on brain tumour research has been rising since 2002.

So! Today be nice to someone who's had brain surgery (whether it was for a tumour or epilepsy or head trauma, or just out of sheer curiosity). If you're feeling generous you could even make a donation to a charity like The Brain Tumour Charity, or get involved with fundraising. But one of the most important things you can do for yourself and your family is just to be aware of the possible symptoms of brain tumours.

Have a lovely February 13th!