Hi there! My darling husband died nearly three weeks ago from Epithelioid Harmangeoendothelioma. He had suffered for four and a half years. I went back to work this week.....it has been a nice distraction........ My kids (7 and 5) have only missed one day of school/ per school and that was for the funeral......I didn't know what to do, but it felt right to send them everyday. There are no rules here. If I wake up tomorrow and am really sad/ emotional, I won't go to work........ Just be gentle on yourself and hug your kids tight......that's what has been working for me. St feeling really sucks but know that you a grieving because of love. That is comforting to me. Good luck to you! PA ... View more

Hey Maddie! I think Dex is the worst I'm afraid...... Causes mood swing city, quite irrational thinking, super cranky brain snaps...... I just tell myself " it's not him, it's the evil twin Dex"...... I wish that doctors could live with their patients for a few weeks..... Once again I feel I'm not too helpful, but still walking with ya!!! PA ... View more

Maddi!!! Sorry I have not replied to your message- been a crazy few weeks...... My husband has survived for nearly 4 years on morph tablets, fentanyl patches, a syringe driver with morph, oxycodone etc etc and combos of all of the above. I agree with the comment about trusting your pall. care staff- bob has had them on and off over the past three years and they are grand!!!!!! Good for you too!!!! Take care my love...... Walking alongside ya........ Think of you often!! PA ... View more

Thank you Pamela! Some interesting points.......have passed it along to my husband's doctor...... PA ... View more

Hey Maddis! I know how you feel about getting agitated when you spend a lot of time together. I have been on holiday for two weeks and am SO ready to go back to work!! It is totally understandable to feel like this.......not only do you have the stress of the wedding, but the stress of thinking is he going to be able to enjoy it as much as he deserves to/ that you both deserve to? I have no advice for you I'm afraid, as much as I would love to give you a pearl of wisdom......I'll give you loads of pearls of love and support....... Cancer sucks.......but enjoy the good moments when they arrive!! Good luck with final wedding preparations!!! May you find some peace on this crazy roller coaster ride!!!! PA ... View more

Hi there Allicat! Maybe by putting it out there that you needed a hug....the universe provided..... More hugs from here to you!! PA ... View more

Hi there jodilee! My husband had his peritonectomy nearly 4 years ago and has been struggling ever since as well. His left kidney packed it in last September, and now his right one is playing up. He too struggles to keep food down for any length of time and is so skinny, a stiff breeze would carry him off. I know how hard it is to watch and wait........but just take it day by day and maybe send your sister a card/ a text a day/ an email to let her know that you support and love her...... It is a struggle with my husband as he is in so much pain that we can barely touch him, so we touch him with our voices.......which is hard for a four year old boy to understand but he's starting to..... Good luck and loads of hugs coming your way! PA ... View more

Hey there Allicat! Loads of hugs coming your way tonight!! My family have been amazing emotional and financial support, whereas my husband's family have been better at practical tasks. I can't imagine doing this journey without the support of my family, so I feel for you that this is not a reality for you.....maybe just come out and ask?!? I'm about at the point where if you'll listen, I'll talk, regardless of who you are or how well you know me, a by product of caring for my husband for four years, in need of an outlet maybe? I think I am rambling but just know that we all send hugs whenever, just ask!! Take care! PA ... View more

Hi there! My husband is losing weight, as he can't keep food down, or has chronic diarrhea......he's down to 41kg.....and is suffering as you describe, can't get warm, wears five shirts, shivering and so unsteady on his feet. Doctor hospitalized him due to his low weight and that he had lost 6 kg in two weeks. Supplements are the order of the day, sustagen powder on anything dairy that he eats, ice cream by the bucket load and anything else that takes his fancy (unfortunately not a lot is at the moment). This probably is not helpful, but I know how you feel....... Good luck and good vibes coming your way!! PA ... View more

Hi Sailor! Wow! That's exactly what my husband went through on his left side and now it is happening on his right...the bloody tumor is growing over his ureter and blocking it, they managed to get a stent in, but are not so hopeful of it happening again in six months time.....so he has been told a nephrostomy is in order....but as they don't know how long he has left, they don't know if that will be viable either.....surely it's got to be better than dialysis..... Thank you for sharing your very familiar story.....he seemed to take comfort that he is not alone.....as he feels that he is all the time...... Good luck with your recovery! PA ... View more