Hi Ima,   There are plenty of foods that are soft just be careful to rotate them so you don't get sick of them as that is very easy to do. Once I am sick of a particular food, I do not eat it again for a very long time.   A dietician gave me some information on a flavourless protein powder you could add to soups, drinks etc. As my body is very sensitive to artificial colours, citric acid, salt, flavourings and preservatives, I carefully checked the ingredients of the protein powder.  I am giving the Dietician the 4 page documents that lists the ingredients and what each ingredient is.  Lucky I did.  There were 4 different types of salt in it, a chemical concoction that was frightening as well as citric acid. The names of the ingredients were nothing you could actually understand.  Normally, if a Dietician recommends something or a nurse, I have learned to be very careful.  Not all advice is good so do your own research.   I hope things get easier for you and good luck on your journey. ... View more

Hi Opacity,   Yes and yes to the smelly urine.  I tried researching it but could not find much about it.  Now I am having more treatment 5 years later - the smell has gone.  I don't understand why, I just accept it.  You were very brave to post the question.  I was too embarrassed to ask the question so thank you.     I wish you great success with your treatment. ... View more

Hi Chris,   Slow results can be really hard to deal with as you are waiting for news and have no idea what is happening next.  It does happen though.  My first biopsy was inconclusive and then they sent it to another lab with more specialised equipment and experience.  At least you have a result now and your team can plan what to do next.  I think it's the waiting that is really hard.   I hope everything goes well for you.  Good luck. ... View more

Hi TUnners,   It is a very hard journey.  On day 6 of chemo they could not give me the treatment.  Blood tests were not good and I was really anaemic.  I had an all day blood transfusion and then IV antibiotics.  We're all so different.  I had a severe adverse reaction to the steroids they give you before the IV and almost every side effect possible.  It was horrendous and am still recovering.     Perhaps have your haemoglobin levels checked as that will add greatly to fatigue if it is low.  Have someone else make you a cup of tea if you can. Right now you need to build your strength, rest and be ready for next cycle.  Ask for help if you need it.  Often women struggle to ask for help and you can't do that right now.   I wish you well on your journey. ... View more

Hi Courtney,   I'm so sorry that your mother has been through a rough time with the Chemotherapy.   I have read through the replies you received and they're very good responses offering help and support.     I just wanted to give you a little more advice on caring for a sick mother.  It is extremely stressful.  I found it to be one of the hardest, emotionally exhausting and frightening times.  My mother had a full left side paralysis after a stroke.  First two nursing homes were horrendous.  To me, there is nothing worse than seeing your mother in pain, discomfort, distress, vulnerable and be unable to fix it.  The minute I awoke  I would jump out of bed, get ready and get to my mother.  Mornings were the hardest time for her as she would be thirsty, unable to reach a drink, need her dentures cleaned and back in her mouth as staff were busy trying to get a huge number of people ready.  I can't go further into all the reasons why this was such and horrendous time.  Eventually we found a better nursing home with wonderful care.  Mum always had 3 drinks in front of her and I eventually was able to calm my own stress and panic.  This was all over a 10 year period.  My family supported me greatly throughout.   As I have started chemotherapy and radiation in last few weeks I have completely tried to keep my adults children away from me.  They have families, jobs and life is very busy for them.  I've even found it hard to allow my husband to help me or ask for help.  I had a severe adverse reaction to the steroids to the point my mind was in a manic, spiralling out of control brain with severe reactions that twice almost cost me my life.  I found I had distressed particularly my daughters throughout this time.  I tried explaining my reason was my mother.  I knew the emotional toll it had taken on me and I did not want them to go through that as we're always mothers first.  When I remembered the urgency I felt to get to my mother, I realised, first why my husband was so very stressed and my daughters really distressed.  If I asked my husband for something I needed - he was driving off or rushing around the house before he had allowed me the time to ask for other things at the same time.  Once I realised that, things improved slightly.  I did not want visitors - I just needed time and space to survive the first round of chemo.  I talked to my husband about being calmer, using a shopping list, planning out his day and what he needed to using his time more productively.     I hope you have great support caring for your mum, asking for help when you need to.  Remember, you cannot help your mother if  you do not take care of yourself and be aware of yourself and your emotions.  She probably needs you to be an advocate for her in the medical system so learn as much as you can as there are many great resources.  Knowledge is power but not bits and pieces of it.  You need an overview as to what is happening to her and what she needs.  You are learning a whole new language and dealing with a system that can be hard to navigate.     I hope your mother does really well and that you do too.  Good luck.     ... View more

Hi Britt,   Adenoid cystic carcinoma is horrible!  Mine was in a salivary gland which was removed through the bottom of my mouth and through the front of my neck.  30 radiation treatments.     Long term effects 5 years later.  A dry mouth that I am constantly hydrating.  It's still hot and supersensitive.  Can't have anything spicy as it burns my mouth.  No lime, lemon or salt - dehydrate me very fast.  Be careful with any sweating as this can very quickly dehydrate you.  I had to have special dentures made to fit the new shape of gums and it took a year of fittings.  Can't chew. Can't bite anything except very soft food.  Completely lost appetite after radiation, but I lived.     Yes, there are adjustments.  I lost a great deal of strength and energy throughout this time.  My days are spent enjoying what I can.  I make really good soups, loaded with vegetables and nutrients that I try to have at lease one meal a day that is a must.  Foods I had constantly, avocados, eggs I suddenly couldn't eat anymore.  It's hard to get variations.  I started Ensure earlier this year and mix it so it is 2 servings in one hit.    I think recovering from this is really hard. I don't like going out to dinner as my serving of food is too massive for me to eat and it feels wasteful.  My days are mainly spent feeding the hungry dragon of thirst.     Unfortunately, there are no miracle cures and many side effects that can make life a little less enjoyable so I focus on the better times, happy time with family and friends, my dogs and my hobbies.  I am still here watching my children with their children grow and grow.      I hope you get better tips and answers from others and wish you well on your recovering journey.     ... View more

Hi Mandabum, I'm really sorry you're going through this but I know you are in the hands of experts and you just have to trust that everything will go well.   A few years ago I was being taken to ICU following surgery and a lovely nurse pressed a tube of paw paw cream into my hand and told me to use it often throughout the day as I'd had mouth surgery, had a tracheostomy in, as well as a feeding tube.   My lips during the recovery stayed pristine even though  they became dry, I had no breakages or cracking of the skin there and it was really soothing.  I thought to myself I would always keep a new tube of the paw paw cream and give it to anyone I met along this treacherous path.   Only have nighties with short sleeves as they will need your arm veins for various IVs.  Bring your own tissues - I like Kleenex large and thick as softest and you will probably cry on some days.  Rest and sleep as much as you can.  If you can't sleep as hospitals are very noisy places - ask for something to help you sleep.  Best healing takes place when we sleep deeply and long enough each night.     Wish you every success in getting through this.     ... View more

It could mean absolutely nothing.  We all know our own bodies and when something doesn't feel right - get a second opinion.  Make sure you are confident with the outcome that they've done the right tests to either isolate a problem or rule one out.     I hope you find a good answer.   ... View more

Do you live in Australia because we have a great public health system.  You wrote 9/29 so now I'm thinking you may live in America.  September last year is a very long time to wait for treatment.  Can you get health insurance or is this now a pre-existing illness?  Please let us know how it goes and the best of luck to you, ... View more

I think grief is an important emotion.  I will grieve terribly if I lost my husband and I've always known that it will be really hard.   My mother had a stroke and was paralysed down one side.  She was in a nursing home for 10 years and I thought we grieved every day as slowly but surely she became weaker and more frail. My mother saw the time we had together as a wonderful bonus because she had the time to tell me all her stories and indeed it was a blessing. I thought I had let all my grief out slowly over those 10 years but no, I had still had more grief when she actually died.   Imagine having absolutely no grief when someone close to you died. because they deserved none.  Our grief honours the person that died.  We loved them so much that we will always miss them but the raw, painful grief slowly becomes less.     I had a long, thick gold chain with a heart on it.  I would leave it with my mum and tell her I left my heart with her.  She would give it back to me another day and ask me to take her heart with me.  I wore it ever day under my clothes and tell my mum what we were doing that day.  One day I told her we were going to catch my daughter's alpacas to go into a new field.  How she would have loved that.  The heart gave me daily comfort and made me smile.  This heart would go to my eldest daughter when I died.  I then had to buy another golden heart for my youngest daughter who would need it most.     I wear both hearts and they store all the good times, all the laughter of the grandchildren, the celebrations and feasts I love and that my mother gave me through the gift of life.  Perhaps you can find something of your wife's and through it heal your heart by doing the best thing for her which is to love and grow her son in the best way possible  and heal yourself so you can be the best father to your son.     I wish you every success in the future. ... View more