Hi Tessg,   I'm so sorry about your diagnosis.  You haven't said which hospital you will be attending but I assume you have a team of doctors taking care of you throughout this.   A nurse recently told me that they encourage patients to be advocates for themselves.  You know your body better than anyone else does.  If your surgeon doesn't think you need a full body scan perhaps you could express your concerns to your GP.  It is pretty normal to worry about every ache and pain after diagnosis.  It's better to be safe than sorry later on.  I'm not sure which diagnostic tool would be best so as your GP. Perhaps a PET scan, MRI or CT scan with dye which highlights any affected area.  I think most surgeons do instigate these types of scans to now exactly what they are dealing with and if there's nothing abnormal there at least they have a baseline to compare later on with any further scans.  It's also good to have your fears resolved one way or the other.     Good luck on your treatment and recovery.  I hope all goes well for you.      ... View more

Hi Scorpio,   I had to look up what jelly belly cancer was and warm chemo.  I don't know very much about either but I think it's an amazing procedure and if it does extend her life for at least another 5 years, that's quite amazing.   As you say, she's a tough, strong minded woman who won't give up, and that's an attitude that can get you far in the scheme of survival.  I think everyone goes through the rollercoaster of emotions so you're not alone.  It's a very scary time and sometimes in life you have to hand it over to the professionals and decide what is best for you.  It's hard being the partner.  I've seen my usually very calm and laid back husband become an anxious, pacing man with unusually high levels of stress as he worries about me and the outcome of treatment.     Just be the very best person you can be for her.  Do research and read as there's a great deal of information about jelly belly cancer and the warm chemo.  I hope your wife does extremely well ad recovers quickly from the treatments.  Good luck.       ... View more

Hi Lil,   Can you update us on the situation?  I see that Tewantin is in the shire of Noosa in Queensland.  I can check and look for biohazard cleaners In Noosa area to help you but just need to know if you've found a solution.   Regards     ... View more

Hi Vicky,   You're in a very difficult situation.  I'm really sorry.  It must be heart breaking to see your son deteriorating and trying to keep on a brave face for his children.  You must be exhausted!  Young children are hard work and I think our children often forget we're much older now looking after their children.  As joyous as grand parenting is, be careful of your health right now and that of your husband's.  I have not been in your situation but the mother of one of my grandson's developed stomach cancer during Covid.  It was a terrible time and only her mother was allowed in the hospital with her as she died.  It was a terrible shock to us all and even her son who was under 18 was not permitted to see her.  From a distance we grieved and only 5 people were allowed at her funeral.     You're also isolated and away from you support network of family and friends.  That's incredibly hard. Just be gentle with yourself and your husband.  Nothing can prepare you for the emotions of your situation.  Eat well, sleep well and rest when you can.  You both have to look after yourselves or you will not be able to help your son during this time of crisis.     I wish you both well and hope you can find some light in your darkest time. x ... View more

Hi Bekbek,   I am so sorry this has happened to you.  Especially waiting through December,  January and February and now we are almost halfway through March.  I think the waiting time and uncertainty are they hardest things to get through and this must have been really hard on you, especially over Christmas.   Do you know which hospital you are waiting on?  Will you be a public or private patient?  I would ring the rooms of your specialist and speak to the Administration staff and just query what is happening and point out that you've been waiting for news since December, 2023.  Just be calm and precise, you're not saying this is her fault or the surgeon's fault.  You would just like an update as you are extremely anxious about the waiting time.   Am sure they will understand and perhaps find out more details and ring you back with hopefully some news.  Good luck. ... View more

Hi Reece87,   This must be extremely distressing for you and everyone eventually finds their way to cope.  There's no magic solution for grief. You have time in this grief to work out what you want to say and do to ease her journey as well as your own.   It sounds as if you've had a close bond throughout your life and that is a blessing on its own though your journey with you sister will stop earlier than either of you anticipated.  Do you have any old photos of the two of you when you were younger?  Perhaps you could show them to her or send them to her and you could write about the wonderful memories that you shared together.   I think that could also being her joy and perhaps some laughter.  Did you dance around to special songs?  Remind her of those.  Celebrate her life with her.  The grief is hard but I would rather feel that than not have had that love throughout your lives.          You could talk about what she wants for her daughter in the future.  I don't know what her situation is or who the child will end up living with but try to keep in contact with her as well.  It's unfortunate your son is seeing you sad and distressed but unavoidable.  Talk to him about it and explain that sometimes in life, very sad things happen and it's ok to be sad and cry because that's how we let the sadness out.  It's also ok to spend time with your son and make happy memories that he will look back on one day that bring him joy.   I wish you well on your journey which is a really hard one and I think you will get through it by focusing on what you do right now because today is all we have for sure.   ... View more

Hi,   Sorry I just can't use your user name but absolutely understand why you would use it.  I've had a pretty traumatic life right from the beginning.  Then a few medical traumas with lots of pain and ongoing pain for a long time afterwards.  I swore I would never go through anything like that again and would request euthanasia. Here I am again facing my worst nightmare of chemotherapy.    One of the things I have used throughout my life is perfection and control.  Any kind of medical thing I go straight to high stress mode.  May sound weird but I cannot be around normal people when I am in this mode. If my husband is driving me, he's not allowed to speak to me at all, go too slow or make me feel as if we are going to be late.  I never let him come in with me or even sit with me, nor anyone else.  I have always relied on myself as the only way to protect myself.  I am still doing it now.     You have to find a way to get through this.  One thing that helped me was my daughter said to me - remember - it will be over by lunchtime or dinner.  That really helped me to tone down the fear factor.  My first job was at the Peter MacCalllum Clinic and throughout my life I've mainly worked in hospitals so I know the language.  First thing you need to do is research even though you may fear what you find out it is better to go in and understand the language and what all these things mean.  Knowledge is power and it is a really good way to inform yourself and also protect yourself.  When you're researching- write down things you need to remember and know the meaning of the word.  I have always found it hard to ask for help or accept help.  Take notes even when in the doctor's consulting room.  Main points.  Things you must remember.  If you are going to do this on your own it will not be easy, but it can be done.   Also, you may find some good news in your research.  Even a grain of it.  The hardest part is the waiting until there is a plan and a schedule.  At least then you will know what is coming and prepare yourself.  Mouth surgery and possibly radiation is a hard journey so think carefully about this.  Is there one person in your family who you could talk to on your own and explain why and how you're feeling about people trying to run your life?   It's not going to be easy to find that person as they will need a great deal of time to drive, sit with you wait for you and drive you home again.  I think it's best not to drive yourself as your brain is too distracted, your stress level are too high and it's just safer.   Radiation is for a certain period of time - every single day. Who will help you when you get home and make you nourishing soft food that you can eat?  Again, think this over.  Even I, who wanted to do it all on my own, had to rely on help when i was home again.   Try to stay hopeful in these darkest of days.  Hope to get the very best experts in the field to be on your team and when you feel you can trust them, put yourself in their hands.  There is nothing you can do right now but be guided by them.  Medicine has come a very long way and people are having a better quality of life afterwards, sometimes a cure or long time remissions.  The more positive you are the more T-cells your body will create to fight the cancer.     Just don't give up before you start.  Ring someone at the Cancer Council as they are very good and kind and I really think you will need some support.  Don't give up on your family.  It was probably a big shock to them as well.  They may need time to absorb the news.  I hope so much for you that your treatment is the best possible and I wish you well on this hard but not insurmountable journey ahead of you.         ... View more

Hi Julia,   You posted this in December so I'm not sure where you are with your journey.  Your cancer journey sounds horrendous and I would certainly find it hard to cope with.  I did not know you had to wait 3/12 for euthanasia.  I think that's hard when you've made up your mind to leave your body for good.  I guess it gives people to think and be sure of what they are doing.   I would prefer euthanasia to any long, drawn out or painful death.     I hope you found a solution for those 3/12.  Best wishes for whatever future you are looking at.  ... View more

  Hi SB,   Yes, I think there are many people who refuse treatment and they have the right to do so.  It is a very personal choice.  My husband and I had talked about euthanasia as neither of us ever wanted to end up in a nursing home.  We were traumatised by the nursing homes my mother had been in for 10 years after a stroke.  Witnessed so many horrendous things and some wonderously kind and gentle people who helped my mother greatly in the best nursing home.  I did not ever want to put that strain on my children as it was such an anxious, stressful and at times, heart breaking time.   I had surgery and radiotherapy in 2019.  I had discussed with my husband, euthanasia again.  I said I could not go through that again and would prefer euthanasia.  When the situation actually arose, I could not decide to do it.  When we calmly talk about it, unemotionally we're both absolutely sure. When it actually happened and I received a bad diagnosis, I could not leave him or my family willingly.  It was all in the timing.  It was my husband's last day at work as he was retiring and the work extravaganza Christmas party that day.  He didn't get home until after midnight and I pretended to be asleep.  I could not tell him on that day.  We had bought a motor home and decked it out and we were just so excited to travel all around Australia with our dogs.    As it was just before Christmas and it was the first Christmas that we were not hosting Christmas dinner.  I just had not been well enough and one of my daughter's hosted it.  It was also the right time as they had teenagers by then and life changes and they needed to create their own traditions.  I did not tell my children until they were all back from holidays.  I only had my husband to talk to during that time and it was a vry dark time as you don't know anything at this point and that is a hard place to be right before Christmas when everything closes and you just have to wait until you can get an appointment to start talking about a plan.  We did get through that time with some dark humour, visited the local cemetary and made plans about dying.   When the surgeon outlined the plan, I was already sick with apprehension.  This time there would be chemotherapy and I'd seen people go through it and disappear.  I did not know how I would be able to get through it.  All my stress, anxiety and fear from every other traumatic medical encounter just came rushing back and it was just overwhelming.  I am warned twice about sepsis and how quickly it comes on and by then it is too late and you could die.  At those points I thought, just let me die quickly as it would be more merciful.     Radiotherapy went really well. Next week they will be making a new mask - one you lie down on - again as the tumour has shrunk again.  It has to shrink to be able to go onto surgery.   Unfortunately the Chemotherapy did not go so well.  I had a severe adverse reaction to the steroids in tablet form you get before they start the chemo IV - supposed to make you stronger and be able to deal better with the chemo.  I had both the physiological and psychological side effects of the steroids.   Swelling of feet and ankles - 3 weeks of it now - severe mouth ulceration and pain right up to Mucositis Grade 3.   I just can't even think of all the physical ones.  Psychological side effects were the worst.  After first dose I could not sleep or turn my mind off as it began spinning out of control.  I couldn't remember anything, hold a thought or keep on track with what I was talking about.  No sleep over a 24 hour period and then 2 hours and the same again the next day.  Without sleep my brain was just in a manic, out of control spiral and I could not stop talking or writing.  I thought I had developed sudden dementia or a brain tumour and it was terrifying.  Many other side effects as well.  I am writing this at 5.20a.m. so probably not the best time for clarity.  Symptoms were so severe that the Radiotherapy nurses did an investigation into Chemotherapy department which is not their job but thank goodness they did and they were spot on with what had happened and when.  They put a warning on my file Extreme Sensitivity to Steroids and listed some of the side effects.  I thought that would be great but that label will only come up in Radiotherapy Department - no where else as computers between the two were unable to communicate.   I've made an urgent appointment with Oncologist to talk about the next cycle which begins the following week.  I cannot and will not have steroids again.  It was extremely traumatic.  I have not seen him or heard from him since the day of first consultation.  He might say - no steroids - no chemo.  I don't know but I will never go back to the hell I was in during the first round of chemo.     Again, I absolutely understand your point.  Quality of life over quantity.  I don't regret trying especially because the Radiotherapy is going really well.  This is the best I could do and I have explained over and over again to my family, no you don't understand how strong and terrifying that adverse reaction was.  I can never have that poison in my body again.     Enjoy your time every day and make sure everyone knows how much you love them and also allow yourself  to grieve too.  At one point I realised I was grieving about me leaving my husband of 50 years and his bewilderment in the world without me.  We can only do the best we can and hopefully leave a legacy of good memories, love and strength you gave them stays with them throughout their grief.  I wish you the very best on your journey, which is yours alone.  You get to choose what is right for you.           ... 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Hi Slick,   On the day my husband finally retired I had some really bad news. I could not tell him that day and when he arrived home after the work Christmas party, I pretended to be asleep.  When he had finished telling me in the morning I told him the really bad news.  I just couldn't hold it to myself any longer.  We had bought a motor home, decked it out, had the maps and were just so excited!   I felt I had ruined his retirement.  Could not tell our children as it was Christmas Day 3 days later.  They were all rushing off on holidays and I did not want them to have to deal with it then.  After brutal surgery and radiation 5 years ago, I swore I would ever go through something like this and would immediately put some end of life decisions together.  Until it happened. Due to timing and circumstances, I just could not.   What has helped me most, is my husband's unfailing optimism and his kindness and patience.  On the weekend of the diagnosis we checked out a local cemetary as I do not want to be cremated.  There were some times in there where we developed a dark humour about the whole situation.  Or we would find laughter in the silliest of things.  Sometimes, no we're not joking about that and later we could.  It does take time to let emotions settle. I realised something, I was grieving for not being around for him and how would he live without me?  There's grief on so many levels, but this one was big.     When I was sorry that this was how he was spending his retirement, he was - No - I am just so grateful to be her.  To be able to help you through this.  Every action, every word shows me that's really  important to him.  Sometimes when I asked him for something - he rushed off as if on a mission.  Eventually we had to talk about this because he didn't let me finish and ask for the second thing and I just felt he was stressed about trying to fulfil my every need quickly.  When I saw how hard he was working with all the housework, shopping, cleaning, cooking etc., I realised this is what women do all the time(mostly).  No wonder we get very tired.  My husband was not good at housework and avoided cooking for 50 years, minimal involvement in housework or finances. We have lived together for 50 years and he knows where nothing is? He's had a rude awakening and has worked really hard on caching up.    He does keep me laughing and smiling throughout a terrible time.  It's given us lots of time to talk about our children, wonderful friends and all the stories we share.  My news and progress changed a little to a more positive one.  Still a long way to go.  It would be so much harder if you know your wife will not survive as you said.  We are still making our own story on how we handle this and some beautiful memories.  Again, we try not to dwell on us not being together as right now - we can push that a little further away.      In your situation I can imagine it would be hard to keep up the positivity.  Perhaps turn it around and get through this time with gratitude as you had all that wonderful time together.  Yes, it will be hard to be on your own and especially whether you return to Germany after living in Australia for so long.  I'm not sure whether you would have a strong network of friends and family to help you in the grieving process.  You have a long life ahead of you and there are so many things that you can still do.  Of course your wife would want the best for you in the future.  I think you really are the one to work on the positivity.  She just maybe too sick to give it back to you right now.  My husband has not done these things but I know I would love it - read to her. Bring her breakfast in bed, or a cup of tea with flowers. Listen to music you both loved.  Make sure she knows how precious she is to you.  You could try some counselling but that's hard if you're looking after someone.     I can't take your pain away, I'm sorry.  I think there are many ways to show your positivity without dressing up in funny costumes or something.  You also need to give yourself assurances that you can do this and the better and stronger you are, the better that is for you wife. I wish you well on this very difficult journey and I'm sorry I don't have the answer to it all. ... View more