Hi,
My name is dawn and have only posted a couple of postings on here. I feel we have gone up one hill and have found an even bigger one when we reached the top. By this i mean the last 3 months have been hell for my mum. Just to recap my mum was diagnosed with mouth cancer last summer. She had an operation (disection of neck, removal of lower teeth because of the radiotherapy effects aswell as having a peg put in so she could have food still as she wouldnt be able to have anything oraly. This was in the September, then went back in to hospital in November to start a course of radiotherapy for prevention and was told the cancer has spread already and she has terminal cancer - squamous cell. Well we wasnt expecting that at the same time my best friend who had testicular cancer who we expected to be fighting for his life as he had secondary cancer in his lungs and had an intense course of chemo was told he had beaten it off. Obviously we were so pleased but then to be told my mum was dying when we thought her cancer was going to be sorted out and she would be ok. How we take things for granted is what i thought. Well 4 months or so on. My mum finished her radio and chemo at the end of Jan and it has taken till now for the secretions to finish as this was truly awful. She had daily sickness aswel as constant secretions more so if she tried to talk. We knew this would happen but didnt understand or I should say we took for granted how this would affect her life so much. There was so much for her to say because as you can imagine to be told you are dying you would want to say so much and get so much done but couldnt. She has lost so much weight because she couldnt eat. She was a size 20 and is now a size 14. We would comment at first as everyone likes to loose a bit of weight but again we have taken it for granted as she is getting smaller and smaller she is very weak and now needs a wheel chair to get about. When i say get about i mean go to the hospital for her check ups as she doesnt go out anymore why would she - she doesnt have the energy and is to proud as she doesnt want people to feel uncomfortable at how she gets rid of her flem, the smell it causes and that she has constant bleeding from her chin. It of course has a dressing but it weeps and bleeds. We have been told this is the thining of the skin as the radiotherapy did burn her quite alot, however im not so sure as they have said they cant stitch it because the skin is to weak and it could course an abses. I wonder if its the cancer breaking through like them horrible pictures you see on the back of cigarette and tobaco packets. She is fed by a peg however because of all her medication she was taking having her food this way made her instantly sick. She couldnt even swallow water as it gave her secretions. I know i sound sorry for myself and her but i cant believe how cruel this disease is. Of course any disease, any cancer is unfair and cruel but mouth cancer is so cruel as the mouth is used for so much and its taken away from her and preventing her from having a quality of life she deserves before she goes. Its like having your last meal but not being able to eat it. I hope and pray she can have her teeth in before she passes so she can eat and chew again. She wants to put weight on and eat all the nice things she ate before.
Anyway apart from her being weak and frail my mums seems to be moving forward and i think is coming out of depression a bit. The last few months have been horrible and i know we have a long way to go but its nice to have my mum back. Its my birthday tommorrow so im going to spend the day with her as i wouldnt want to be anywhere else. She also has her twin grandchildrens 4th bday this sunday. These are my children and i have knocked the big party of the list and taking my mum and her family the ones she feels comfortable around on a trip round a safari park in a mini bus so she can hear and see the kids reactions. I want it to be special and to make it memoriable and i dont want to take any time for granted - i have learnt so far that we have to take every day as it comes and to make sure its a positive day and to enjoy the time we have left. Sorry for the long post but started typing and couldnt stop. There is so much more to talk about this is why i like this website i feel i learn so much from everyone. If anyone has any help in regards to the mouth hygiene as its quite a pong, also the bleeing and weeping from her split chin. If anyone had any thoughts or advice on this it would be much appreciated as i would like to get my mum out more but i know she feels conscious of it.

Hello Dawn (it's me, Deborah ~ not Trevor!)
What a load you are carrying. I'm so sorry to hear that things are so tough for both your Mum and yourself. It's really hard seeing someone you love go through all this horrible stuff and all the while knowing that time is much too short. It's natural to think 'if only'. If only we could have some time that is pain and worry free. Unfortunately all we have is the moment we are in. There are no guarantees. (Damn it!).
I can't help with the symptoms your Mum is suffering with however there is no doubt you'll be getting lots of feedback from those who can.
You are doing all you can for your Mum and she must be so grateful for your love and care. Make the most of every minute of every day and don't dwell on what you have taken for granted in the past ~ we have all done that. It's a sick reality that those of us who have been touched by cancer have learnt that we have done that in the past and we are lucky that we have the chance to make sure we change our ways in all aspects of our lives. It's a tough lesson, don't you think?
My heart goes out to you both, Dawn (the bits of mine that aren't broken, that is). Take care and be kind to yourself.
Love from Down Under
Deborah

Hi Dawn
i am sorry to say i recognise so many of the problems your mum is having,although i am glad to say robin had enough strength left right up to the end to be able to walk about.
The smell from the hole in his neck was a dreadful problem and caused him much distress as it seemed to permeate everything.In the hospice they put charcoal in his dressing to absorb the odour,they gave him an electonic air freshener that had lavender oil in it and we put it under his chair,and outside his room they had a filter machine that sucked in the air,and pumped out fresh .I can remember that smell in the flat and it seemed to get into every room,and of course with him feeling cold all the time we had to have the heating on and that made it worse.Regular dressing changes are the most effective,and also making sure the dressings are sealed round the edges.I would change robs dressings as soon as they stained through and the nurses did a big dressing change three times a day.

So, i would invest in a good mobile air con unit,use natural oils to freshen the air,make sure she keeps the skin around the wound where the seepage may have dried clean and fresh,and see if you can get charcoal impregnated dressings to absorb the odour.Also make sure you seal up bags with dirty dressings in and put them straight outside in the bin.

I fully empathise with your feelings Dawn,this is a truly evil form of cancer that strikes at the very essence of our being,our physical appearance and our method of communicating.

Yet all we can do is rain down curses on the on the damn thing.

good luck
love liz