Feeling really low

Hi new here still trying to process everything and feeling empty lost my beautiful wife aged 67 on 25 11 23 after a 18 month battle with aml she had a stem cell transplant December 22 got sepsis in her pic line during transplant and nearly lost her then in may ended up in icu with a bad chest infection which turned out to be GVHD of the lungs this was devastating as she lost a good chunk of her lung capacity but still fought on only to be told in October that the aml had come back and that it was terminal.all she wanted in life was to be a gran to our 3 year old granddaughter who we struggled to see due to Covid life just seems so cruel.

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Hello @Aslove ,

I’m part of the Online Community team and I can see that you are new to the community - I’d like to thank you for bravely starting this thread and sharing how you are feeling empty and lost. I’m so sorry to hear about your wife, you have been on such a difficult journey with your wife’s illness, I am sure that life feels very cruel for you right now, as you describe. Most community members have sadly experienced the death of a loved one and so will understand some of what you are going through.

I’m sure someone will be along to offer their support, but I wanted to share a few Sue Ryder resources with you that might be helpful.

I really hope you find the community helpful and a good source of support and I also hope you feel you can access more support should you need it.

Thank you again for sharing – please keep reaching out and know that you are not alone.

Take care,

Alex

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Hi @Aslove
Im glad you found this group although its not a group any of us want to be in. I lost my lovely husband of 46 years in August after a mercifully short battle with cancer. Your wife sounds like she was a wonderful lady and fought hard. Life is cruel I agree. This is a lovely space to vent your frustrations and get the support from people who do understand what you are going through.

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I lost my 20 year old son in august to the most aggressive lung gvhd the royal marsden had seen. I feel so cheated as leukaemia is meant to be the treatable cancer and luke was so positive. He was robbed off the life he adored and his fiance who was his world.

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Hi it is hard GVHD is not discussed enough when they talk about SCT we were told that a little GVHD was a good thing but they never explained that it could be a life changing disease my wife suffered with severe lung Gvhd that effected her severely and effectively made her unable to do anything and then the cancer came back so she had no real life . It still haunts me now knowing that the last few months of her life were wasted.

Lung gvhd killed luke in 18 months, he remained in remission. For the last year of his life at 19 he was on permanent oxygen and had to use a mobility scooter. His lung function went from 84% to 15% in a year. Despite this he loved life and remained hopeful for a cure.

So sorry for you they told us that my wife had a 100 per cent match and that was the cure for her AML, now I am just left with grief that will be my constant companion forever

We were told the same but gvhd is the 2nd mortality rate next to relapse.

Yeah we know that now but trouble is that you are so consumed by the diagnosis of cancer you just put your faith in what they say and do not research it. We talked about it after , and my wife said that if she had known she would not have had the SCT and took her chances with the cancer as she was in remission and felt normal. You just try anything to hang on to life.