Friday, 19 December 2014

Home

So, I'm home!

A lucky cancellation meant my New Year's Eve surgery was moved forward to yesterday. After Monday's meeting to go through all the possible complications it was a bit of a relief to not have more than 24 hours to worry about it all.

Thankfully, the surgery went very well. Joffrey has been forcibly evicted and now we await the pathology results. Due to lack of a biopsy result we are still at the stage of proceeding on the basis that it is cancer, and tests on the tumour itself will give a definitive answer either way. We are still being told parotid gland cancer is by far the most likely outcome as suggested before, but there's still a slim chance the tumour is benign and behaving in a malignant fashion.

At the moment, I'm very stiff and sore. Moving my jaw is uncomfortable so I'm sticking to soft food for now, and I have a regime of painkillers to stick to and a gel to apply to the area regularly until the stitches come out next week.

As to the complications, I've escaped relatively unscathed. I will have a scar stretching from in front of my right ear down to my neck, but as most of it is unstitched it will fade over time. I've also got a bit of a dent in that side of my face too, because they have to take a fair amount of tissue out. You can't see it from the front though.

There was some involvement of the nerves and I do have some damage, but it seems to have been restricted to just my lower lip. It is weak and doesn't always move when it should, but while it won't ever return to normal function entirely if a crooked smile is all Joffrey leaves me with in the long term I consider myself very lucky indeed.

Me when I arrived home yesterday - very much in need of a bath and a sleep!

Some first thoughts:

  • Not being able to feel my right ear and the surrounding area is far stranger than I thought. If I run my hand over the right side of my face, there's a point where normal sensation stops and it just feels numb and a bit squidgy. This made me giggle far more than was probably necessary at first. This is in fact permanent, as there is a nerve up by the ear that needs to be cut through for a parotidectomy. As it's purely for sensation and has no affect on function, it's not a big problem. My hearing is unaffected.


  • Washing the gunk out of my hair whilst trying to keep stitches dry is far more complicated than my brain can cope with. I managed, but it probably didn't need to take quite that long!


  • The whole area itches like crazy. Because of the altered/missing sensation around a fair portion of it, it's virtually impossible for me to pinpoint where the itch is at the moment. Just take my word for it - it's infuriating!


  • Failing to remember to chew with the unaffected side of my mouth is getting me into all sorts of hilarity. 

The thing I find most people expect you to be upset about is the visible scarring. Before I say what I'm about to, I maintain it's entirely normal to be concerned about changes to your appearance after surgery - and particularly when it's somewhere like the face which is pretty much always visible.

But honestly, in the grand scheme of things? It's not important at all.

Anybody who is the type of person to make comment and be insenstive can just take a flying leap right now. They're idiots, you don't have to listen to idiots. There's no written or unwritten law on having to interact with them if you don't want to (and really, who does?)

Scars tend to be seen in a fairly embarrassing light, or as something to be ashamed of. The thing is though, we all have them. They might not be visible if they're under clothing, and there's such a thing as purely internal scar tissue. Everybody has some form of scarring though - raise your hand if you've scars on your knees from falling over as a child, for example?

I have. I have keyhole scars from having my appendix removed as a child, and burn scars on my arms because at the age of 25 I still haven't quite figured out how to avoid the top of the oven when I get food out. I have chickenpox scars over my back and stomach. When you start considering them, most scars are actually commonplace and result from entirely ordinary every-day things.

So this new one will in fact be just a little bit cooler than all the others. It had a bit more of an epic coming into being, and for a much more important reason.

Scars then. Wherever they are they tell stories of how they came to be there, and what has happened throughout your life. Some of them make interesting talking points.

Mostly, they tell the story of the things you've overcome.



Wishing you all many spoons xxx

Tuesday, 9 December 2014

Strange Wings

AKA "Why Hannah should not be left with too much time to think."

There are a few things I've been thinking in the run up to my most recent and indeed next hospital visits (CT scan of the thorax, consultant appointment and then multi-discipline team appointment). Not all of them are entirely sensible.......


On radiotherapy

I've been working my way through Macmillan Cancer Support's information pages and videos - their radiotherapy video is really quite good if you ignore the fact the gentleman speaking has one of those monotone voices you have to force yourself to concentrate on. Whilst being informative about how the treatment is performed and reassuring in a lot of ways, it also threw up something I'd never seen before:

(Image from headandneckcancerpatient.com)

For those who like me are unaware of what this might be, it's a radiotherapy mask for the head and neck which prevents you from moving during the treatment, thus allowing the alignment of the x-ray beams to remain correct for each session. Unfortunately, this was not the first thing my brain thought of. Oh no, not even close. 

My brain saw that and went "My word, they're creating Cybermen!"

I have also concluded during this research that if after five to eight weeks of having high energy xray beams fired into my face I'm not some sort of all-powerful sorcerer, then I shall be most upset and someone will probably deserve a slap. 

You may disagree, but it seems like a reasonable trade-off to me. 


On surgery

Two of the available dates were Christmas Eve and New Year's Eve. My consultant says nobody is queuing up for those dates. One simply cannot imagine why not. 

I've said I'll take New Year's Eve if it's still available. I don't drink, and I'm usually tired enough to want to be in bed before midnight, which knocks most of the point out of New Year's Eve gatherings when you think about it. It does unfortunately mean that I'll be starting 2015 with a stay in hospital. Whilst that's not a particularly winning start to a year, on the flip side it does get the treatment started and the worst part out of the way sooner rather than later. 

As for the inevitable post-surgical scarring? Well, it should knit reasonably well and fade to a degree over time, and I'm blessed with very large hair to hide it behind. Still, there will be a visible scar on my face and neck.

..... I am totally telling everyone I got it being a part-time dragonslayer. 


Say it with me: "Perspective"

Whatever's happening to you at this point in time, the situation could always be worse.

("Excuse me, were you going to say "worse"?")

My initial reaction to all this was of course the loss-of-stomach sensation following the words "I'm sorry, but the tumour is almost certainly cancerous". I'm not for a minute suggesting this won't have a huge impact on my life going forwards, but there were definitely positives to draw on.

If you could pick a "good" cancer, out of a catalogue if you will, then you could make a worse choice than one of the parotid gland. The cure and survival rates are very high indeed, and it's immensely treatable. In my own case they have caught the tumour very early and up to press it hasn't spread. Of the two evils, radiotherapy is certainly the lesser in terms of side effects and impact upon day to day life when compared to chemotherapy.

I won't be losing my hair - a fact for which I am immeasurably grateful as I strongly suspect that would have been the thing that floored me. My employer has been amazing and I've been very teary with the response, supportive messages and just general kindess people have shown in response to the news. I am aware there are those who are not so fortunate.

Perspective is ineed a very good thing.


And finally....

No matter what Joffrey's doing, a certain four-legged someone will still wake me up at a somewhat unsociable hour because he wants a cuddle before demanding I get up and provide breakfast, For Fiddler, life continues as normal.

(Our cat is just the most adorable little boy. Even before 5am when I'd really rather he didn't try and sleep curled round my neck)

Bless him.


Wishing you all many spoons xxx

Saturday, 6 December 2014

All Lights Reversed

Welcome to my new blog!

I’m going to be doing something a bit different from hereon in and I felt it needed to have its own space - so, a companion blog! This will probably be my main focus over the next couple of months but I don't intend to abandon the original blog if I can help it.

I had to think long and hard about committing to this. The fact is that it’s not necessarily going to be a popular decision. Given the somewhat divisive nature of the new topic, if I’m too flippant or humorous there will be those who feel I’m undermining the subject and not taking it seriously enough. If I’m too serious, no doubt I’ll be “moaning”. And no matter what I do there will always be those who think anyone who blogs about their health has a pathological need for attention. I can’t really do anything about any of that.

However, as with what I was doing here before, I think I might be able to create something helpful. Unlike Fibromyalgia, said new subject is likely to have greater resonance with a wider audience. Another factor was that the natural (if unintended) precursor to all this, How to Train Your Health Scare, has been one of my most popular posts in a number of months.

The new and potentially divisive topic? That would be cancer.

(Image from www.cancer.gov)

The culmination of the tests I was waiting for when I wrote my last entry was that I've been diagnosed with primary parotid gland cancer. I understand from further reading that this is actually rather rare - Macmillan Cancer Support estimate only 550 new cases in the UK each year, which isn't many at all in the grand scheme of things.

For those unfamiliar (and so was I), the parotid gland is the saliva gland in your cheek at the back of your jaw. You have one on either side, and I’m currently not speaking to my right one. You could say I’m a little miffed with it.

As with many cancers, there is no known cause for parotid gland cancer. There are risk factors but I don’t fit any of them so there’s little point in illustrating them. It’s actually considered an older person’s cancer – most patients are in their 50’s or 60’s – so I’m something of an oddity being only 25.

There are other oddities, one being that it’s actually reasonably hard to get a 100% concrete diagnosis due to the location of the tumour with this type of cancer. The diagnosis in my case has come from ultrasound and MRI scans and also the behaviour of the tumour itself. Where benign tumours of the saliva glands grow over years and years, mine grew in less than three weeks before suddenly stopping. I’m informed by my consultant the growth has only ceased because the tumour has exhausted its blood supply and therefore the centre is dying. This is also one of the reasons it’s difficult to get a definitive diagnosis from a biopsy – the chances are you’re going to be sampling quite a bit of dead (and therefore useless) tissue in the circumstances.

The current situation is that everything is being booked and sorted out on the assumption the diagnosis is correct. In the “highly unlikely” (the consultant’s words) event that they discover the tumour is actually benign then everything just gets cancelled, and some sort of massive party is probably in order. In my mind this seems preferable to waiting around for the results of every foreseeable test and ending up weeks or months down the line but likely no further forward. I suppose the much more short-winded sentiment is “better safe than sorry”.

My partner works for Macmillan, so it's where I'm getting a lot of my own research from and therefore I can recommend their website as both informative and helpful)

Given that according to Macmillan’s predictions by 2020 almost one in every two people (47%) in the UK will get cancer in their lifetimes, it seems a good use of my time to document this period in as much as I can as it’s a subject that may well be relevant to a lot of people. I may not be a stranger to blogging about illness, but I won’t lie: this is a much scarier undertaking. 

I probably won’t be updating as regularly as I did before, as I won’t always have anything new to say and I would hazard a guess that there will be times ahead when I don’t want to say anything at all. However, I firmly believe this is worth a try.

So, watch this space for updates. If you think you’d be interested in reading this new material and want to be kept updated of new posts, you can find The Retired Bridgeburner on Facebook here, and on Twitter with my handle @bookofthefallen.


Wishing you all many spoons xxx

PS. Yes, in the tradition of me and my health, it has a nickname. We're calling it Joffrey, because rather likeits namesake it's a little sh*t that deserves everything it has coming to it.