I am not quite sure where to begin or what o say, there is so much going through my mind. I have been on this site before and have found it helpful.My mum has oral cancer.Diagnosed two months ago now and she is so, so low. She has had two cycles of chemotherapy and is really feeling very poorly after finishing 2nd cycle on Sunday - exhaustion, nausea, everything tastes metallic.She has hardly eaten and although she has a peg will not use it. She has not come to terms with peg yet. In less than three weeks she is due to have surgery.Base of mouth, 2/3 of tongue, affected lymph nodes removed and whatever else needs to be removed , according to surgeon including teeth, maybe jaw... I don't know. Six weeks of radiotherapy are also planned. Mum has not come to terms with this.EEverything is raw and she is terrified by everything, particularly surgery, tracheotomy, living with (as she believes) deformity.She often says she would rather die and I wonder if she will go through with surgery. She has no faith in doctors, cannot bare to hear any details about her treatment and is having terrifying nighmares every night. She believes that the treatment/ information from doctors has "affected her brain" and she cannot apply her mind to anything. She has lost interest in tv and has no interest in reading. I thought she was depressed, but psychiatrist saw her and was of conclusion that she is just plain terrified of surgery. Mum is a beautiful women who has always taken a pride in her appearance.She will not go out as she cannot wear her dentures and she feels too self concious.I have two young children and I am also trying to take care of her and my dad. I fear for the furure and desperately want to help her deal with her emotions , but she will not consider talking to anyone - when I mantioned Macmillan nurses you would have thought I had invited the devil to tea by her reaction.I'm rambling now and shall have to conclude. it is dnner time and family will need feeding and I shall have to go to mums as well. There is probably a whole lot more I should be relating, but that will have to be that for now. If anyone has any thoughts on the above rambling it would be appreciated.

Hi

Everthing your mams going through is exactly the same as myself and others on this forum

Its understandable its not something to look forward to but things do improve but not overnight

I had all them worrys to

Always here if you need to chat or want to know anything anytime

Best wishes to you and your family
Dave and Sue

Hi S,

Cancer makes a victim of the whole family not just the patient. You cannot blame your Mum for being traumatised by the diagnosis, prognosis and treatment. When I was first diagnosed it was like being hit by a bus, I was physically sick, my first reaction was how long may I survive? I had a wife and two dependent children then. Because of my circumstances I had to be positive had to believe that I would get better I am a laryngectomy but I needed to speak to do my job.

My children could not take in the enormity of the potential and when I wanted to "put my matters in order", i.e. where the will is, who my wife should see, what to do, etc she went into denial.

I was therefore too busy planning my demise to worry much about the surgery or the consequences after diagnosis as fortunately there was little time bewteen that and sugery.

Your Mum however is not in that position, being a lady of course she will like Chelle be concerned about the consequences to her feminine attractiveness, especially on your Dad. Not knowing what is coming is not conducive for the family, if available I would encourage your Mum and Dad and you to meet other Patients who have been through the treatment, many patients are more than willing to meet new patients and recount their own experiences.

My operation was in 1995, not as invasive as your Mum's I did not undertake chemo, as radical intervention was urgently required but had radiotherapy afterwards.

Your Mum needs love and reassurance that you and Dad and the rest of the family will not think that she is Frankenstein after the op which is why I feel it important for her, you and Dad to meet other patients whi have been through the treatment, even if your Mum refuses you and Dad should go. Try to understand that this is your Mum's life you want her to survive and have the best quality of life of course but your Mum needs to believe that life will still be worth living, she needs to know you and Dad still need her no matter what.

Allow Mum in fact (subject to prevailing cirsumctances, absent of your children for exampl) encourage your Mum to scream, shout, swear, break a few things, beat the table and ask why me? and then embrace her, say nothing just hold her tight and tell her that you love her. Do not try to underestimate the consequences with Mum, but remain positive, seeing other patients are coping is very comforting, or it was for me. Hearing a laryngectomee communicate orally was a huge relief to me even though I knew I might require artificial aids (fortunately I did not).

Although I met that patient and knew I was losing my larynx I did not realise until I was on the ward that I would breathe for the rest of my life through a hole in my neck, losing your voice is one thing but becoming a freak was something else, however I got used to it, but it took my wife the best part of 18 months to bear to look at my stoma after I got home. She has often said in those 18 months that she would rather die than go through what I went through; I hope to think today she would have a different mindset.

Most of all S do not blame yourself for being unable to motivate your Mum, you must understand and try to put yourself in her position, what if you were facing the decisions she will have to make. Encourage her to believe she is still your Mum now and after, that regardless of her physical condition you need her as much in the future as you have done in the past, but do not play any moral blackmail, just be honest, confess you do not want her to die you do not want to lose your best friend. However if she makes decisions that hurt you please undertand that you cannot live her life and respect her decisions, encourage her to change her mind but never bully, and if her mind is so set support her decision however hard that may be do to.


We all react differently but we all need support the last thing anyone diagnosed with cancer wants is pity, of all cancers oral cancer can be the most disfiguring and thus anti social afflication, life is life however and provided the quality of that life is or can be sustained the life is worth living.

I pray that your Mum will see and feel the love of her family, and pray God's own blessing and infinite love will touch her and give her comfort. Difficult days lie ahead, pain anquish possibly grief, share your pain here with us, do not bottle your frustrations up and do not be angry with your Mum, she cannot help being scared, Alan

Good afternoon S.T
I can well understand that your mum is feeling down and terrified of the forthcoming treatment it affected all of us in this way, some people show it more than others.Refusing the treatment is simply not an option, the treatment will not be easy but no treatment would be much worse.Your idea of the Macmillan nurse is a very sound idea, they have a world of experience in dealing with a wide variety of emotions surrounding cancer treatment and they have a lot to offer. the McM nurse would also know how to deal with the problem of having little or no faith in the doctors.When you have to put yourself so totally in someones hands it really is important to believe in what they are doing and to have confidence in them.
This is not an easy time for you,please don't forget your dad it is not an easy time for him either, your mum will need a lot of love,care and attention and she may not be able to show much appreciation for this: try to be understanding.
If you have questions to ask this is a good place to ask them, most of us are mouth cancer patients who have been through the mill.
Keep Smiling
John

Dear S, Hang in there, my husband had surgery 2 weeks before our daughter was married, just to get him well to come to the Wedding was emotional time. Treatment started straight after the Wedding, he had 3 surgeries in 4 weeks and he was very miserable after the last one. It is tough and I know you will have times where you or your dad will fill sorry for yourselves, let that happen, don't be ashamed have your tears then move on by saying "right time to help the one we love, I am strong and we can fight this". Your mum maybe should read alot of this site it might make her see she is not alone in this world and this horrible disease it has helped me and my husband. Always talk about it in front of her, get use to saying the words we need to say, it does help. Maybe have one of the nurses come and see you all under the pretext of you and your dad needing them to come. Be strong, talk to all your girlfriends, ask for the hugs and then give them to your mum, hold her, laugh with her and let her know you love her so much how strong she is. I know this all sounds amazing but after losing my mum to cancer now having my husband fight it, I'm still learning never let the chances go by. Give yourself time to re-build your strength so when your mum needs extra or your dad you have that extra to give. Talk to the wonderful people on this website they are amazing, full of the right help. All the best with your Journey. Tracey

Thank You for your replies. I hope I did not sound too sorry for myself, I just cannot bare to see my mum suffer so.I do have great friends and I have to try and keep life as normal as possible for my children as they are only 9 and 6.I did ask at hospital if mum could meet someone who had been through a similar experience, but was not so tactfully told they had no one who was as bad as mum.She did meet a lady who had had the floor of her mouth removed and she was very warm and encouraging, but mum knew this lady had not been through what she was going to have to and therefore took little comfort from the meeting.Talking to the doctors is hard for mum. Informed consent means they appear to be telling her more than she is capable of dealing with. She finds it hard to cope with all the info and always focuses on the negatives. Granted there are few, if any, positives - mum is desperate for a little "good" news. i am concerned that she is not getting adequate nutrition as she has hardly eaten this week, will not use the peg.she is exhausted from the chemo (not eating will not help). Also everything tastes metallic and horrble.Isn't this the most cruel disease? I just want to help, but cannot do the one thing she wants which is return her to her pre-diagnosis life. She has been a selfless person all her life and so independent, now this.I have told her that I shall love and support her whatever she decides and whatever the future holds.Thanks for "listening". S

Hi ST
Please try to get your mam to use the peg at this stage she needs all the callories and protein to repair her body

the 2 main factors are sleep and nutrition

Dave and Sue

Hi S,
It is very important your mum can have some sort of nourishment, my husband would have alot of sustagen drinks also when he couldn't eat very well, at least that would provide some protein for him, I would add coffee sometimes to the vanilla flavour all make a fruit smoothie with it for him. They say if nothing else try and add protein to each meal which will help them while they have treatment and also for healing afterwards, you can do this with drinks, or pureed food, I would also make scrambled eggs or omelettes which is a great protein booster. I hope this helps but I know she will be sick of it all by the time she has finished treatment. Trying to make her food interesting will be hard for you and your dad. Good luck. Tracey

Hi S T,
May I ask as to how long has she had the peg tube and does she also eat/drink orally? I have been on the peg for the last seven years and have not eaten or had a drink ( let alone a sip of water ) orally. Presently I am pretty much used to living this alternate lifestyle.
I really do not know which way I can help but if you feel I could help you in terms of feeds best for her - do let me know.
You can read my story - an the main page side side of survivors stories click on Ananths story. And one word before I sign off this message - Everyone here are really great and help out tremendously when one is feeling down and out. I am really happy and glad that I joined this group and met Dr. Joshi when he came to Delhi.
Take care,
Ananth

Hello S,
I can understand whjy you're despairing with your mum.
In my personal experience when i was at my worse everyone was urging me to get help. They also suggested a macmillan nurse. They are angels on earth - truly wonderful people! & i'm so glad i gave in and accepted the help eventually. & i wish i had done so sooner!
I sincerely hope you manage to help your mum find some peace. But she wont do anything until she's ready (if she'sa as stubborn as i was) & nothing anyone said would change my mind!
All the best to you all,
Michelle