New Friends

Nina - cancer survivor since 2007

Small world, for me anyway. Nina from Bristol, who in fact shares my Consultant Ceri and my prosthetics whizz Paul contacted me last night.

Nina, had cancer in her tonsil, and ended up having quite extensive surgery, which included having her palate removed, leaving her wearing an obturator. 

Nina's story is very inspiring, especially considering what she has been through. She has kindly let me post her story here for others to read. She wrote it a few years back I believe, closer to when she had the surgery (she will provide more updates another time)- since then she has done many things and one thing that sticks out to me the most when I re-read her email is the line she wrote "I just think I have to do everything now as you never know how long you have left!" - not that her life is under threat, but as any cancer survivor knows, nothing is certain.

But that actually applies to anyone, you never know how long you have, so you have to grab all opportunities - grab a handful of life and hold on tight!

Anyway, read Nina's story here, it's quite a read, so grab a cuppa first.

Nina - enjoy the holiday, not that I am jealous or anything!!! (off to Barbados... going to miss all this lovely UK weather!).

Kathy and Greg...

Transient

A week ago I had a lovely email from a lady called Kathy who lives in the US. Her husband Greg, recently had a Maxillectomy due to Cancer.

I firstly never thought that this site would really be found by anyone, not really, yet in three weeks I have had three people contact me - it may not seem like a lot, but actually, given the small amount of people who have a Maxillectomy in the world, I think it is pretty huge.

But this is an important post, as the email was written to me by Kathy, the wife of Greg - it is important to realise that those around you go through just as much as you do, of course they don't suffer the physical pain that you have but they equal it out on the emotional and mental stress they suffer propping us up daily, making sure that we feel like all is ok, even when it might not be. It may not seem that way at times, but believe me it is true!

I remember when I was diagnosed, I went on a roller coaster ride of emotions in the first few weeks. I even remember sitting around our dinner table, with my Wife and two children, listening to them chatting, thinking, you know this could go on without me, life could go on without me - I must admit, I felt very resentful towards them. It didn't last long, mainly because I could see that my wife was in tatters about my situation, which actually wasn't my situation at all, it was OURS.

The importance of loved ones around us when we need it is the whole point of being here I think. I have no doubt how much my family love me and for that I am very very lucky.

Cancer has done two things for me, that have been positive (yeah, it's done a whole host of negatives too):

1. I have made a few new friends from this - not the best way to meet new people, I don't recommend it to anyone!

2. It made me realise just how much I am loved and how much I love those around me.

Greg, although unfortunate to have Cancer, although unfortunate to have had a Maxillectomy, has Kathy, a woman who obviously loves him - and just knowing that may make Greg that little bit stronger and just that little bit more able to cope with things.

I'm thinking of of you Greg and I'm thinking of you too Kathy!

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. I wanted anyone who might go through this to find me - to find this site...

Katy's favourite place... (picture taken from her blog, click to check it out!!!)

Katy's favourite place... (picture taken from her blog, click to check it out!!!)

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 (I know this from her blog - see link 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 right?!

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.