A community of peers created by the Soaring Spirits Loss Foundation
Hi Emy- So glad you came here. So sorry that you have loss your John. This is a great place of "virtual fellowship" and there is always someone here to listen. We get it . Keep coming back - Blessings and hugs- Lisa
I am so sorry for your huge loss. I understand how you must feel. Hope you find the great support here that I have.
Hi, I recently joined this site,having lost my husband after an almost 2 yr battle with Acute Myeloid Leukaemia. He had a stem cell transplant, then GvHd attacked his lungs along with other terrible problems,and he died mid December 2011. We lived a nightmare almost in isolation 80 miles from home most of last year, to still end up in this place. I dont know how much of the total exhaustion I seem to feel so much is from the last few months of us fighting for his life or the unutterable hell of widowhood. He was just 65,I am 59. In April we would have celebrated our 40th Wedding Anniversary. Some days,like today, the pain is still so raw I find it so hard to find any reason to get through each day. I have two grown up kids and 4 adorable grandchildren,supportive and understanding friends,but I am ashamed to say even their love and support doesn't help. People say I look great and am doing well,and that I expect too much of myself. I dont know if that is true, I only know the utter desolation and despair I feel knowing the love of my life has gone forever.
I am so sorry for your loss, desolation and despair. There are no magic words or wisdom that I can offer - except to say that I feel those same feelings. I lost my husband in May 2011 and my sadness has not let up. I have learned how to pretend around other people - everyone. I have a grown son and three grown stepchildren - two beautiful granddaughters by my stepdaughter. One thing I know is true - we need to be around other people - people are a good distraction. The second thing is that most (if not all) people don't know how to handle intense grieving, crying, mourning, so people like us end up pretending we're okay so that we won't be so isolated. It seems like a vicious cycle, but sometimes other widows have said - it's a "fake it 'til you make it" type of concept. That one day, you'll fool yourself right into feeling a little better. Maybe that's true. But the future looks bleak. I can tell that I cry less often and with less intensity. That's the "shift" that I've noticed from 6 months ago. But it's definitely NOT linear - the out-of-nowhere pain and profound sadness is still present week after week. Do what you can to be kind to yourself and surround yourself with good people. Find something that requires a lot of your attention. I have a sweet, adorable dog - he is the reason I get up in the morning. Take care - God bless you.
Thank you so much for your kind and thoughtful reply Juls. I do have the 'public face', I have managed not to break down in front of people, I would hate to make others feel uncomfortable around me. Unfortunately until last week I also had an adorable little dog, my husband insisted we got a puppy so that I had a reason to get up if he didnt make it. And it worked, for 6 months I have had to start the day and it is always easier once you are out of bed, but last week in a totally unprovoked situation he bit my grandaughter, so I have had to rehome him, because I cannot live with the extra stress of worrying it would happen again. Extensive talks with the girl who we did our 'training' with and the vet led them to advise me that as adorable as he is he is a 'Jekyll and Hyde'. So another blow for us all, but I know the decision, as hard as it was, is the right one for us. I think you are right about being with people,it definitely helps to get through the days.
Welcome to this group Disflop: I totally understand how you feel, I'm coming up to nine months, I lost my husband October of 2011. I do work every day and that helps, when I'm here I can compartmentalize my feeling and that helps. I agree with Juls, I too cry less often and with less intensity but the sadness is so a part of me now. Other than work unless I have my granddaughters around I do nothing during the evenings or weekends and I'm really trying to change that. I lost a lot of my friends during this period so I'm trying to work on doing things, not making much progress yet. I have recently decided to get a puppy, I think it will help. I'm not one to do things on my own so I'm hoping this will give me a good excuse to get out and walk. Maybe you could try another dog and see if that will give you incentive. Also, keep coming here it truly does help. Hugs!
I so empathise re evenings and weekends,those seem the longest times. I am conscious that my family need their own time,especially at weekends. I am trying very hard to reconnect with friends I used to craft with before illness took our lives over and am planning to start small crafting classes in the next few months. I am missing the interaction that built up from just walking the puppy,I still walk, but people are not as ready to just pass the time of day without a dog as focus. I cling to the fact that I do have days when I am focused and can do things (for example,yesterday I painted some kitchen stools),but days like today are exhausting, as you all well know.
Disflop, looked you up after your post to me on the WE to ME board.
My John, who was 65, had AML too, first diagnosed in February 2009. Relapse in June 2010. Stem cell transplant in October 2010 (from which he never really recovered in a number of ways and that we both came to regret). Clinical trial four four months early last year but a relapse in June along with a rare new bonus diagnosis of multiple myeloma. He stunned doctors by surviving both and we thought he'd have the milder chemo this time around but only supportive care was offered.
Are you in England or Australia? Just wondering because of the way you spell leukaemia with the "a" added. I used the US spelling on my original post.By the way, John worked in rubber mills twice when he was young - in the days before health and safety precautions - so I think his benzene exposure there ultimately caused the AML. His brother, who worked at the mills, died last decade of bone cancer. John used to remark on how the company that ran the rubber mills sponsored the foyer in the cancer hospital and also Leukaemia Foundation cars...guilt money.
Because John had a native flower farm in the middle of nowhere he had treatment in a major city - Melbourne - which was actually fun when he was well enough to go out. I worked out we spent about 10 months in all down there.
I know I had broken sleep for months before he died because he'd wake in the middle of the night and I was running on adrenaline for some weeks before and after his death. I seem to be sleeping better most nights now.
You are so lucky to have a supportive family. I don't. I may put a post somewhere on an appropriate board about how badly my sister has treated me at times of crisis.
As for stem cell transplants I think they are too widely promoted for older people these days. Even for younger people they don't always lead to good health. I found out recently that a man in his 30s who had a transplant after advanced testicular cancer died last year, leaving his wife and three kids.
Ann,I live in England.
For the first 8 months after diagnosis on our 38th W.A John just had blood and platelet transfusions. When these became 3 units of blood and 2 of platelets each week ,meaning 3 days being spent at the hospital every week, December 2010 saw the first 3 weeks intensive chemo,followed by 9 weeks from mid February 2011 for transplant,then complications including a pocket of leukaemia in his spine that had not responded to all the chemo and full body irradiation.
Like you I had months of surviving on very little sleep and running on adrenaline, and I think one of the reasons for my total exhaustion and lack of energy reserves are a fall out from the year of extreme physical and emotional pressures.
I still find it hard to sleep for more than 5 hrs a night,despite being very tired. I hope time will help to improve that situation,especially as the days seem very long sometimes.
Disflop, I know what you mean about the days seeming very long at times!
I find the herbal medicine Valerian helps me sleep (though not so well at times of crisis). I've taken it for a number of years, maybe an hour before I go to bed. Works for me.
Baths are also a good way to relax and get rid of tension.
Red wine is good too!
Maybe some B vitamins would help your energy levels and exercise doing all the stuff that needs doing is good, for me anyway, as it helps to release stress. I need to organise a hard rubbish throwout for collection Wednesday so that will have me going up and down stairs. Have old heaters that don't work to throw out and also stuff in the garage that should have been tackled months ago.
Now I have the time....Ann
Hi All. I lost my husband, Mark, almost 6 months ago. He died on Christmas day of gallbladder cancer. He was 57 years young and the healthiest man you could ever meet. He had just gotten back from a week of snow skiing and had recently hiked to the bottom and back of the Grand Canyon. I could count on one hand the number of times he had been sick during our marriage.
He started to have an annoying little cough that would not go away and later feelings of discomfort around his gallbladder area so we assumed he would need to have it removed. Two tests and two days later we got the terrible news that he had colangiocarcinoma which is bile duct cancer but that was later changed to gallbladder cancer. There are less than 2000 cases of gallbladder cancer reported each year and the 5 year survival rate is 0 but we were so sure he could kick it. We went all over the country for treatment because so few physicians had even dealt with this type of cancer. In NYC he had 3/4 of his liver removed, all of his bile ducts, the gallbladder and many lymph nodes but during surgery they discovered he had two types of cancer one of which was super aggressive.
Six weeks later we returned to California and he started chemo and radiation which basically meant he felt like S*** for his remaining days but he simply would not go without a fight. He lived just 10 months after he was diagnosed.
I'm still in shock and having trouble believing he is really gone. I go though my big lonely house and cry out to him to just come back!!! It seems I'm missing him more as each day goes by. I miss being able to talk to him. I miss sitting on our deck and looking at the ocean while we have a glass of wine and talk about everything.
I haven't gotten rid of anything of his as of yet. His toothbrush is still in the holder and all his clothes are hanging in the closet. I don't have the heart or the energy to do anything else.
I know I have to try to continue on for the sake of my son and two grandchildren and I'm trying but mostly I'm totally faking it in public. I can be out for an entire day and then walk through my front door and burst into tears.
I'm looking forward to some happier days in the near future. I'm so happy I found this site. It's so nice to connect with others who have been down this same dark path. I'm happy to see that some have made it to the other side and are starting to live again:)