Update - Cancer of the Nose and Upper Lip

Hi Heather, happy new year to you and your family.  How did you go on on the 21st seeing the oncologist? I have  some swelling on my cheeks I don’t know what it is.  I have kept off Dr. Google.  I’m waiting to go for a CT Scan, they were sending me for an MRI until I rang them up and said I had some magnets in my face.  No one seems to read notes anymore. So that’s were I’m at at the moment.   Another few months of uncertainty and face pain.  I don’t seem to be having much look at the moment, but fingers crossed they can sort it. 

I have never known the weather be so settled over Christmas we haven’t had any snow and not a lot rain either.  Everyone came over on Boxing Day and had lunch.  James was with his daddy so Scarlett sat with me all the time, it was lovely to have cuddles.  I have collected a racing pigeon on my bird table, when I go out and shake the seeds it comes down and lands on my hand to eat the food.  I keep trying to read the number on the ring around his leg but not managed it yet.  I don’t think will be a pigeon racer though hee hee. 

I went to sleep typing this last night.

Take care,

Hi Trish,

Happy NewYear to you and yours. 

You don’t seem to be getting any further with your treatment do you. I am sorry you swelling in your face and hope the pain is not too much to bear. 

My visit with my oncologist went okay and I had an appointment with the plastic surgeon yesterday. He was happy with the bottom lip healing okay, the top lip is a bit scrunched up and he is hoping that when I have my dental reconstruction it may stretch it. If not it will need sorting. I have just realised that I have no gums at the front top of my mouth. He said the dental work wii, include drilling into the bone that he put in my top up and fitting implants to attach my front teeth. I also need to get the hole in my top pallet sorted.  I will need to have day surgery for this.

Apart from that I am fine and returning back to work once again on Monday, so going to enjoy the remainder of my time off.

Will let you know when I get a date for the dental work.

Speak Soon.

Heather

Hi Heather

It sounds as though you are having the exact same op as I am waiting for. You sound so up beat with things but I am afraid I am feeling rather apprehensive about the whole thing.

 I have had 2 maxillectomies so don’t have any gums or teeth in my upper jaw either. My upper lip is all squished in too and the doctor is talking about releasing it by making a hole in my palate so the denture will be able to fit. The hole in my palate will stay there and they will make an obturator that will attach to the implants put into my cheek bones and will cover the hole. I’ve got rather attached to the graft they put in the roof of my mouth and don’t really want another hole in it but that seems to be the only option.

I had a very bad experience with the prosthodontist when he took a mould of the only teeth I have left on one side of my lower jaw. (I had the other teeth and gum taken out previously on the right side because of more cancer) As I can’t open my mouth very wide courtesy of radiotherapy and previous ops even using the smallest mould I ended up with the inside of my mouth and the corner of my mouth being split quite badly.

I now am feeling rather apprehensive whether when the obturator is made how hard it will be to get in every day. Also the prosthodontist says he has to make more moulds and I am concerned about the pain involved in having the inside of my mouth split again.

I think I will just have to grit my teeth or what I have left and do the best I can. I have made an appointment with the surgeon who is doing the op to discuss my worries and hopefully he can put my mind at rest. It probably won’t be as bad as I imagine I keep telling myself.

Sorry being a bit of a baby and will have to put on my big girl pants like you have.

I so admire the way you have coped with things and I hope that I can be as strong as you. You are an inspiration to me.

Sending you best wishes for the next part of your op. I am still waiting for a date for my op.

Lyn

Hi Lynn,

I am so pleased you got in touch. Yes we do seem to be in the situation. I had chemo radiation on my neck and face for six weeks. I had my top lip, bone,gums and skin taken away. I also had my top palette taken and had a flap inserted but it broke down during the radiotherapy, hence the hole in my mouth. I have had a bone and skin removed from my leg and inserted in the top. Like you I can’t open my mouth wide enough so I had another procedure which took skin from bottom lip and put it in the top lip to make room for the dental reconstruction. However, I am not looking forward to the dental work as I think my mouth will be really sore. But, it has to done because I want to be able to speak and eat properly again. I am dreading it though. Perhaps we can support each other throughout the surgery.

I will let you know how I get on.

Regards

Heather

Hi Heather

Thanks for the reply. Yes it sounds as though we are on a similar path. I am O.K. with speaking as the graft from my forearm completely covers my palate so that is good. However eating is another matter. I can only drink with a straw and eat puree. I make a terrible mess when I eat rather like a baby and end up with food all over my mouth. I don’t eat in public because of this. It doesn’t stop me going out with others for meals though, I just eat before I go and get a drink.

I have been wearing a mask in public as I don’t like the way I look but have recently braved up and have gone to the supermarket without a mask. No one seems to look though so it is down to me being more confident and not worrying about what others think.

I would really like to hear how you get on with the next stage in your reconstruction and I will let you know how I get on.

Thanks for the support.

Lyn

Hi Lyn,

Lovely to hear from you.  Yes I am the same with eating and drinking.  I have eaten in public before they started the reconstruction, but since then I haven't because I make such a mess.  I have to use beakers to drink, so if I go out with someone and they want a coffee, I cannot have one, so I carry a beaker with me in my bag.  I can eat food that is not pureed but it has to have gravy on it or sometimes tinned tomato for a change.  I make such a mess when eating, my husband brought me an adult bib, I wear it in the house, but would not dream of using it in public. So like you I am waiting to be able to go for a meal in a lovely restuarant some day.  I used to go out without a mask, but since the last operation, because my lip is scrunched a bit, I am still wearing a mask.  I look like a rabbit.

I am back in work today and emailing you in worktime, naughty girl that I am, and I am not wearing a mask, but that is because I know everyone here.  Its different outside isnt it.

My speech is not too good because of the hole in my palette and people cannot understand me sometimes, so I have to have help when talking to people.  Besides all this, I am okay, happy and getting on with life as best I can.

I hope to do what you have done and stop wearing the mask in public because it looks so out of place now but still haven't plucked up the courage yet.

Cheers

Heather

Hi Heather

Fingers crossed that when our reconstructions are finished that eating improves and definitely that speech improves for you.

I am not expecting a great difference with eating but hope that at least I can eat without making a mess and can manage some soft foods rather than puree. That will mean that I should be able to eat out in public again like I could after my first maxillectomy. I still had to choose carefully but it was an improvement on how I am now.

It’s great that you are back at work and coping well there. I have been retired for 4 years now but have returned to my voluntary work at the library. I really enjoy that and look forward to it every week. I have also joined an exercise group. Such a nice friendly bunch and I find the exercise really beneficial. Terry my husband and I do quite a lot of babysitting for our grandchildren and enjoy that so I keep fairly busy.

 Best wishes

Lyn

Hi Lynn,

We seen so very much alike in what we have been through.  I wish I could retire but cannot afford it at the moment and I also really enjoy my job so would miss it terribly.  It keeps me sane.  I am not one for staying indoors all the time and love being busy.  We have five grandchildren, but we no longer have to babysit as they are all growing up.

Like you I was better off before the reconstruction process.  As you say, lets hope that when it all ends, we can eat in public again.  We live in hope don't we.

You take care and I will let you know when I get an appointment to see the dental surgeon.

LIVE LIFE, LOVE LIFE as they say.

Cheers

Heather

Hi Heather

It has been a while since we last spoke but thought I would let you know that I have been given a date for my reconstruction surgery. It is to be on March 22^nd. It is now almost a year since my last op and it has been a bit of a wait. I had an appointment with the surgeon yesterday who went through what the op would entail. It sounded fairly promising so I am less apprehensive than I was. I spent ages filling out all the paperwork for the admission while I was at the Dental Hospital. I have another appointment on March 15^th. to meet the anaesthetist and go through more tests and paperwork. Things are beginning to happen fast now.  

When I asked how long I would be in hospital the doctor said it is a 3 hour surgery and it would only be overnight or maybe a couple of days but he is uncertain at the moment. He said he doesn’t have much to work with in relation to fixing the prosthesis but is confident that he will be able to screw it to the implants he will put in my cheek bones and the inside of my nose. He also has to release my top lip so the obturator will fit and intends to somehow cut some of the skin graft covering the roof of my mouth to make the space.

I’m on the count down now. I’ll let you know how I get on.

Hope all is going well with you. Any news on your reconstruction surgery yet?

Lyn   

Hi Lynn,

 Nice to hear from you and such promising news as well. I hope your surgery goes okay I am sure you will let me know.  I had an appointment two weeks ago and was told by the dental surgeon that I may not be able to have front teeth replaced because there is still no room for them. Of course I did not take no for an answer and spoke to my surgeon and he said leave it with him.  In the meantime I have a sore on my top lip and he took a biopsy just to be on the safe side.  The dental surgeon took an impression for a prosthetic top pallet as I have a hole.  So I had an appointment today to get the pallet fitted and I went on about having teeth, I am a lady on a mission now.  Anyway it has made an improvement to my speech but I need to get used to eating with it in place.  I have to take it out every evening for safety purposes.He also informed me that the biopsy was all clear, good news at last.  He congratulated me as it is three years since my diagnosis and he called me a survivor.  I then went down to the laboratory to have an appointment for a new prosthetic nose. I had an impression done and go back on 16th March to get a wax impression then another couple of appointments to have my new nose fitted.  I have also been referred to the ENT department don’t know why, that appointment is on 31st March.  I will let you know about that one.  So it’s all systems go for us both.  It’s about time though isn’t it.

I will speak soon and give you an update on my progress.

Take care.

Heather