Thank you Jane and I will post an update when I have my 'finished' nose.

Regards

Patsy

Hello patsy, nice to hear from you again. I just wanted to say that I hope you are recovering well from such a huge operation. I think all the uncertainty round what was the best way forward with your care cannot have helped you much in what is already a stressful and upsetting time for you. I only hope your medical team can now make up for this with your ongoing care. What, if you don't mind me asking, has been offered to you in the way of support in coming to terms with your operation.  While most people can cover their scars up with clothes, not being able to adds a whole lot to what you are having to cope with (I know my dad lost quite a lot of confidence going out in public after his first op when he had a bag/stoma at the base of his throat) I just hope you are doing okay, and getting enough support. Kathryn

Hi Katielouie.

Thank you for your reply.

You asked about support because the cancer has obviously affected my face, .and like you say, can't be hidden under clothing or anything

I've just got a card from the McMillan nurse to ring if I need them for anything, that's it.

i have checked out a couple of websites but to be honest couldn't find anything really relevant to me and don't see how that would really help, everyone is different aren't they, in how they cope with things and how much confidence something like this takes.

My nose is awful at present, I'm hoping it will look a bit better when they do the procedure for the forehead flap, it's lower at one side than the other at present, I'm assuming this will 'pull up' when they pull the forehead skin back. i was told this would be done 4 to 6 weeks after my main operationa it's over 6 weeks now, I'm really hoping to hear something this week about when this procedure is to be done.

I know my nose will still not look ok after that, the surgeon has already talked about 'trimming it', it is really wide (and I mean wide), but he said that will not be yet, it will be in the months ahead, so I don't know when he's thinking that can be done?

I also have the dressings on my forehead, which leak horribly, as it's really hard for the nurses to get a dressing to be secure when it's not on a flat surface and has to go into your hair, so that doesn't help with making you feel comfortable about going anywhere.

My sister made me some veil type masks, which covered from under my eyes, so you could just see the dressings on my forehead and I used these when I first came home, when my grand children came and when I was driven to see my Mum. I couldn't have faced going out without the 'veil' on. I even went to the hospital with it on, I have to go to the clinic twice a week to have the dressings changed on my forehead and arm.

Just recently, in the last 10 days or so, I've stopped wearing the veil and now place a piece of gauze over my nose to cover it. I still look a mess with the forehead dressings as well but I don't think people look quite so much as when I wore the veil, i think that made people wonder what exactly was underneath.

This has taken my confidence, there is no way I would go out anywhere at present without covering my nose, but I am getting better as long as my nose is covered, I will at least answer the door now with the gauze on when I'm in the house on my own and in the last 2 weeks I've actually agreed that a couple of my friends come to visit and managed to go into a store with my husband, only for 10 minutes, but I did it..!!! It's funny though i can't bring myself to go to the store where I would normally go to do my shopping.

One of the older consultants did say before I left hospital, that i was going home, but that he knew that I would be living a bit of a solitary existence for a while... how right he was.

The way I now look, together with the length of time now given for recovery, also really worries me about going back to work, not just the financial burden that being off work so long will bring but that I may lose my job because they can't keep my job open for 12 to 18 months in the hope that I will have the confidence to go back, I don't know if i ever will. But I'll cross that bridge when I come to it, I know there are other things I need to concentrate on right now.

Take care

Hi

I really am amazed at how well you are dealing with this.  I think I would be in pieces but here you are carrying on.  Even though you say your nose looks awful you are sounding hopeful that it will improve if not greatly in the short term then at least in the long term.  I have to say I am not that surprised that you have not found a webiste that deals with your problem.  I should think it is somewhat rare.  Perhaps you should start a blog as I have no doubt there will be others in a similar situation who would love to know they are not alone.

I am glad you are getting out and about a bit and also that you have graduated from the veil (you obviosuly have a very creative sister) to now using gauze.  Not so long ago you were saying you would not go out at all and already you have come a long way.  You shoud give yourself a pat on the back or treat yourself to something nice as a reward.

Very best wishes.

Gill

Thank you for your kind comments Gill.

Regards

Patsy55

Hi again

Just wanted to post another update on how things are.

I'm 21 months on from my original surgery and 17 months since I finished radiotherapy. I have had 3 further operations on my new nose and it does look 100 times better then after my original surgery. Don't get me wrong it still looks 'ugly' but I'm coping better with it now. I still can't face going to some places but I do go out more, and I haven't got to the stage yet where I can go out without a small dressing over part of one side of my nose, it's not because there are any wounds there now, I just feel better when it's partly hidden (wimpish I know but I still haven't got my head round how it looks).

I do have to have 1 or 2 more further surgeries, 1 is to put the nostrils back to see if I can then breathe through my nose or smell, they did do them on the first operation but they closed up again within a couple of months, but the next op won't be for perhaps 9 months as the surgeon said he had to go right down to cartilage on the last op and it needs a long time to heal before he does anything else now.

It's personal choice for anyone who has this type of cancer which route to take and I didn't know what to do at the beginning but now I do think I made the right choice for me. I wouldn't have coped with a hole in the middle of my face and a prosthesis, I am in awe of the people who do. I also don't think radiotherapy and chemo would have totally got rid of the cancer without surgery so I made the right choice for me. It wasn't an easy one, it's been a lot longer than was originally thought, and there's no getting away from the fact that this has totally changed my life but I'm getting there and I'm still here, nearly 2 years on. There are a lot of people who don't get this chance.... I had an MRI scan recently and the results were all clear, it's the first time my consultant used the words 'cancer free' so my husband and I and the family were all celebrating.

Thank you to all those who answered my post and all the kind comments when I was struggling to make this decision and I hope if anyone is ever looking for anything to do with nose cancer they find this and I hope it helps.

Patsy55

Hi Patsy55

Thank you so much for posting your update.

It's great to hear you are now cancer free and your new nose is shaping up well:)

Please do continue to let us know how it's going and we wish you all the best with your future surgery.

Jane

Hi Patsy, thanks for giving us an update and I'm so pleased to hear you think you made the right decision. It's been a long struggle for you by the sounds of it but you must be a very strong and brave person to have got through all of that. Congratulations on coming this far and very best wishes with your continued recovery.

Nicola xx.

Thank you Nicola x