Maxillectomy.com @maxillectomy - Tumblr Blog

ROBOTS OR DINOSAURS?

Robots!

Search for "sinus cancer" on tumblr and find out all about dogs. Wtf

Sadly, a new friend... Katy

When I started this site, it was partly because it was cathartic for me, but mainly because I couldn’t find anyone else who had gone through having a Maxillectomy. I needed to find others, so I didn’t feel so alone, I needed to find others because I wanted to know that I WOULD BE OK - I needed someone to tell me this, who wasn’t my family or doctors…

I wanted people to know that they are not alone, that others have gone through it before them and have come out the others side, well, functional and enjoying life again.

So in came an email from Katy - someone who has a Keratocystic tumour, although benign, they are aggressive tumours that have to be treated in the same way as cancer, they need to be removed!

She has had one before, which was removed without radical surgery and sadly she has had a re-occurance. This time the Tumour is larger and will require a Maxillectomy.

I’m saddened that Katy has found this site, but I am also pleased as I hope she knows that she isn’t alone in this.

She will be soon having an MRI to confirm the extent of her Tumour and then I guess will be booked in to have the surgery shortly afterwards. Katy seems a little more positive about this now and has got to the point where she knows this is something that has to be done, it is an unfortunate choice that has been taken away from her.

Katy sounds strong to me, a very positive, independent woman who I think has a good sense of humour (see her blog below).

With her permission I will post updates about her here as her story progresses.

One thing I did Katy, which I’m not suggesting you do but I can definitely recommend, is to totally stuff your face pre-op with lot’s of healthy, good quality foods, such as CHOCOLATE, CAKES, CHIPS, PIZZA etc… you get the idea… - got to get something out of it?!

She has decided to write her own blog - you can find Katy and her blog here: http://mycakeface.tumblr.com please visit her site and show her your support.

#new friends #maxillectomy #stuffyaface

People who have found this site...

This site has only been up for a few weeks, perhaps three, yet to my surprise there has already been people who have found it.

I registered Maxillectomy.com because I figured that anyone who is having or who is going through a Maxillectomy will search for that word - it seems to have paid off.

But there is a trade off - if someone finds this site, then I am always saddened by it, because it usually means that they or a loved one has either gone through having a maxillectomy or they are about to.

I have had a few emails from people, who will always remain anonymous unless they wish to share their stories - and sadly it goes to show that there are others out there, some experience this whole thing worse than you, some much easier, but the point is, there are people who have had this awful thing done and SURVIVED!

So there is no reason why you can't to!

I will always make myself available for anyone who wants to talk about it - if ever anyone needs to ask questions I will do my utmost to answer them, I will never lie, I will never make things rosier than they are from what I have experienced and I can appreciate that you are going through your own thing and it is different from mine.

I hope no one reads this - but if you do, it is going to be ok.

Nearly that time again...

Nearly time for my monthly appointment with Ceri my Consultant. It has started to play on my mind again - this damn cancer shadow, I can't get out from underneath it.

Last night I couldn't get to sleep - that's not strictly true, I fell asleep in front of the TV, quite early actually, it was about 9:00pm. My wife woke me up an hour later and said we should go to bed as we were both obviously tired.

I went to bed and that was it, wide awake and my mind started churning over events... blah blah blah, I'm bored of it too - don't worry. I eventually did go to sleep and I woke up exactly where I left off, which was annoying, so I decided that I would face the day with positivity... I've done that and I feel much better.

I know that last time i saw Ceri there was nothing, I expect this time will be the same - I must maintain that feeling, I must focus on the fact that I had the cancer removed, that it isn't there anymore - I can't say that I am cancer free, because I doubt I ever will be, what I can say though is that I don't have cancer... I'll leave it at that!

Support and messages from people I don't even know!

Over the past few days I have received some lovely emails of support from friends of family and people that I don't even know.

I can't say just how nice it makes me feel to read them, it certainly picks the spirits up! But I have to say I don't feel like I deserve them really, I have been so lucky through all of this, there are many out there that have had it worse or indeed are going through much worse right now!

What I will say is, no matter who you are, no matter where you are and no matter what you are going through, you are never alone - somebody somewhere will be thinking of you!

To those who are suffering now or about to go through this - I'm thinking of you!

Cancer check up No.4

Today was my appointment with Ceri - as I said before, I like to see him but dread it at the same time.

The news is, all good. Healing very well, no signs of anything that shouldn't be there and one of the little growths from before (see previous post) has actually shrunk, indicating that it is probably there from my healing around the obturator, awesome.

He also checks my neck, feeling for any lumps and bumps that shouldn't be there, again, all good.

Until next month Mr Hughes...

Aspirin - taken for cancer not headaches?

So, I have read an awful lot about cancer on the internet and one thing that I came across was how Aspirin can potentially have an effect on Cancer.

Here is the general information:

Taking a low dose of aspirin every day may reduce the risk of cancer and slow the spread of the disease, according to a study that followed the health of more than 100,000 patients.

Research by a team at the American Cancer Society in Atlanta found the overall risk of dying from cancer was 16% lower among people who took a daily aspirin pill for up to 11 years, with deaths from gastrointestinal cancers, such as oesophageal, stomach and colorectal cancers, falling by around 40%. Deaths from other cancers fell by 12% on average.

The findings, based on 100,139 men and women with no prior history of cancer, support previous claims that aspirin can protect against some forms of the disease, but suggest the effect is not as strong as those earlier studies found.

Along with the benefits for cancer, of course Aspirin is given to those who have had heart problems, so to me it seems like a very worthy medicine to have in your cabinet!

For me, my largest concern is the return of cancer, so with that in mind and from what I have read and concluded on my own, I have been taking a 75mg pill every day now for the past few months, I'm not saying you should, you need to do your own research, but for me, I see that the positives totally outweigh any negatives!

I'll do anything to live Cancer free!

Wax lyrical...

I had another appointment with Paul, my prosthodontist today. My new obturator is coming along nicely - except it is made out of wax.! Best not get to hot with that in hey!

Basically, they create a wax mould of my mouth so that they can place the teeth and align everything correctly before it is made out of metal.

The teeth look really good and there just needs to be a few adjustments to the alignment but its coming along great.

My next appointment will be the last but one before I take delivery of my new mouth... how cool is that - seems like i have been waiting for a long time...?

You all want the new iPhone 5 - me, I just want a new gob! :-)

Stand up to cancer UK!

Channel 4 and Cancer Research UK have joined forces to launch Stand Up To Cancer in the UK.

They’re calling on the nation to join the brightest stars in entertainment, to work together to raise money to accelerate cancer research. So we can bring forward the day when all cancers are cured.

It’s a critical time. We have the knowhow to make rapid advances in the treatment and prevention of cancer. We just need more money. That’s where Stand Up To Cancer comes in, by raising funds to turn breakthroughs in the lab into breakthroughs in our hospitals.

Friday 19th October live on Channel 4 - save the date.

Watch this video - then visit http://www.standuptocancer.org.uk

Another survivor, meet Alex...

I have been contacted by someone else who has been effected by Cancer and had to have extensive surgery which included a Maxillectomy and sadly his eye orbit.

Alex at this point wishes to remain fairly anonymous as he has been suffering over the past 13 years to get his obturator correct. So much so, that he in fact has been making his own! This I don't understand - I have been so fortunate with the care given to me, I do not understand why someone else in a similar position wouldn't receive, in the least, adequate care?

I need to point out that this is one case, I have no idea where Alex is from other than he is in the UK and have no idea where he was treated - perhaps his story will ensure that no one else has to suffer in this way:

Here is Alex's introduction to me:

Hi Will, Pleased to meet you, After my opp I never found anyone to talk too . Many cancer sites relate to all cancers but ours are only 2% of cancers so not many there. Been reading your events, brings it all back to me when I went through it was 13 years ago, as you know I had cheek bone an eye orbital removed and follow up with 7 doses radio therapy, ( 1 year after opp I had cancer again in Lymph Gland, removed ok then radio therapy again)

The restorative work, for me was very sub standard, I have in the last 2 years made my prosthesis correct.

Beware of the fitting of the obturator it is not just a whole filler, it should replicate as a prosthesis maxilla exactly.& cheek bone in my case.

What they made for me in restoration was a complete oversized monstrosity, I was in pain for years, after 100's of appointments with my Orthodontist who did not know how to make it .( At the time I thought was normal). It should have been done by a prosthodontist which the hospital don't have for maxilla.

Eventually in 2009 my orthodontist, who I got to know well, give me acrylic resin to use at home, and I rectified the shape of my maxilla prosthesis.

I looked at many maxillofacial sites, one in America where they scan and replicate the maxilla properly.

With mine I had to take about 3cm off it, and done the best I could to replicate, It has been really good now since I done that but its taken 2 years almost for the muscles in my mouth too heal, as they had to grow back after such stretching of the buccinators.

Of course after rectifying the maxilla, I had it copied at the lab in hospital, and after my mouth healing back, I am now waiting on another copy...

More of Alex's story to follow...

Runny noses...

Have you ever eaten a really hot plate of food and found that your nose runs? I'm sure you have. Well, this is what happens to me if I bend over for more than a few seconds, my nose starts to run.

In the beginning, just after my operation, my nose would run constantly, whatever the angle I held my head at. Now, over time, it has got better and better. Sometimes it is a pain though, especially if I am doing something that I need to concentrate on, for example, the other day I was soldering some electronic components, I had no choice at the time to stop as I was holding a very difficult electrical join, within 20 seconds I had created a new mixture of solder and snot which, I may say, creates a perfect electrical joint!

So, if you see me and my nose is running, I'm sorry - I just can't help it!

My MRI

Here is the MRI view that I used for the main site title - technology is amazing, I love it. Obviously this is the MRI I had before the operation! For some this might be a bit weird, but I find it really interesting. You can clearly see the tumour and its location - but more importantly you can actually see that I have a brain!

Exemption of Dental Charges for Patients with Mouth Cancer (UK)

Patients treated for mouth cancer often end up having aggressive surgery, which results in the loss of teeth and supporting structures. Additional treatments such as radiotherapy and chemotherapy may also have an impact on the patient’s oral health. Patients with cancers elsewhere in the body do not have the financial burden of paying for any follow up treatment, which may arise as a consequence of their cancer therapy. However patients who have had treatment for mouth cancer usually need extensive dental treatment to restore their smile as well as long term follow up care.

Under the current NHS exemption categories they would be expected to pay for dental treatment. There is clearly a financial inequality for patients with mouth cancer to pay for the postoperative and reconstructive phase following their cancer treatment. We urge the government to review the current NHS dental charges by including an exemption category for patients who have had treatment for mouth cancer.

Sign this e-petition (closes 9th November 2012) http://epetitions.direct.gov.uk/petitions/22063

Sigmund Freud and me... so much in common

No I don't advocate the use of cocaine, nor do I believe that all women have penis envy! But we do have one major thing in common:

We have both had maxillectomy's. That's right, Sigmund Freud suffered very badly with cancer and as such one of his operations on his upper right jaw left him having to wear an obturator. I found a document online which describes his cancer and many operations that he had to go through. (My consultant was the person who originally drew my attention to Sigmund Freud and his Obturator!)

The document starts:

"Sigmund Freud (1856–1939), the founder of psychoanalysis, developed a carcinoma of the buccal cavity in 1923, which was treated between 1924 and 1938 by Prof Hans Pichler (1877–1950), Professor of Oral, Maxillary, and Facial Surgery at the University of Vienna, Austria.

Freud and Pichler were both professors there. Freud’s neoplastic disease illustrates the development of oncological oral, maxillary, and facial surgery from 1920–1940, and the problems of maxillary resection. It also shows the specialty’s medical and technical developments which occurred in that time period. This chronicle takes place against the backdrop of the National Socialist dictatorship in Germany and Austria."

Later the document says:

"In a follow-up operation one week later, a partial maxillary resection was performed. Covering of the wound surfaces was carried out using the split skin graft technique published in 1917 by Esser (1877– 1976), and by the insertion of a provisional obturator prosthesis. On the evening of the operation, Freud enjoyed two Havana cigars."

The above comes from a PDF I found about Sigmund Freud, you can see it here: https://www.aofoundation.org/Documents/freud.pdf and if that no longer exists you can download directly from here.

You see, even famous people suffer too!

Choosing teeth

Today I see Paul, my restorative dentist and we are going to choose teeth.

Not entirely sure what this means, do I get the choice of Gold ones? Diamond encrusted? Probably not, more like colour and shape I suspect.

I'm very excited actually, it is a little bit like Christmas having this new plate made - my current obturator, I have become so accustomed to it, even with its minor problems - it doesn't fit properly now, can rub occasionally etc. I just hope and pray that this definitive obturator will be as awesome as I imagine it.

Even if it is 20% better than this one, that will be a major step up.

Cobalt Chrome, 1mm thin (not thick!) in places, no clasps on my front teeth, softer bung with a little bit of give. I can't wait.

I have to go... can't be late!

My fear of Cancer returning

I hate it, I hate it with a passion. I don't want to go through this again, I can't do it. I don't want to die or be seriously ill.

These things wash around my mind all the time, but especially when my monthly check up appointment comes along. I like seeing my consultant, he and I get on well I think, but I am terrified to see him really. I dread that he will tell me that something isn't right or that the cancer is back.

I don't think these feelings will ever go - I can't see how they can go.

I had a conversation with Ceri (my consultant) on my last appointment, he said that when his patients get to the 5 year mark and he discharges them from his care, in other words they no longer need to come and see him, most if not all actually say, NO, i'll see you in a year - just to be sure.

I think for anyone that has had cancer, the fear never goes - not really.

I just hope and look forward to a day when I don't think about it that much.

Here is a great article that I read recently on this subject:

http://www.livestrong.org/Get-Help/Learn-About-Cancer/Cancer-Support-Topics/Emotional-Effects-of-Cancer/Fear-of-Recurrence

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