Should you always choose chemo

Hi my husband died nearly 2 years ago aged 54 from neuroendocrine stage 4 small cell lung cancer. He died of multi organ failure on day 10 of his second chemo cycle. When I spoke to his Macmillan nurse she told me that the chemo had probably killed him and that my hubbie was warned about that. The cancer was symptom less until diagnosis following a sore shoulder. It had spread to, among other sites including his liver, the bones in his neck and he was petrified that it would spread to his brain so wanted chemo. I had read and indeed knew of two people with the same cancer. The girl who refused chemo lived for over a year but my uncle only 6 weeks with chemo, my hubbie surviving 7 weeks from diagnosis, 3 weeks after chemo. He had a great quality of life until the 2nd cycle of chemo where he lost 4 stone,3 inches in height, mouth ulcers, swollen hands and feet with his skin bleeding and peeling off. He was in a terrible state. What I'd like to achieve is to ask others opinions on this cancer and whether , in hindsight, no chemo would've led to a longer life with better quality. Whilst getting dressed to go out, I saw the dreaded purple/dusky skin that I knew could mean signs of end of life. Hubbie said " I feel a bit funny", slipped into a coma and died 4 hours later. His family and friends never got to say goodbye as the end was so sudden. I appreciate tho' that maybe this was a blessing in disguise as no one truly wants to say goodbye. Also I think patients should be informed about quality of life versus quantity ( we never were) and merely told that this kind of cancer responds well to aggressive chemo....I've since heard my aunt be told that this isn't true and life expectancy following diagnosis may be weeks.  I urge anyone newly diagnosed to ask those difficult questions as options need to be weighed up and preparations need to be made. Thanks for reading and any input welcomed 

Teenytrish

  • Hello teenytrish,

    I don't think there is a definitive yes or no to chemo,it's so individual to the patient concerned. My husband had small cell cancer of the prostate , very rare and aggressive treated with aggressive chemo.He responded to the chemo really well, only mild nausea ,he was much better in himself , didn't loose his hair (most important to him)

    Unfortunately got the dreaded infection and died from pneumonia

    So you can just never tell

    I don't th8nk anyone can give the answer to your questions and neither should any of us left behind feel guilty at decisions made

    My best wishes to you

    Maddy 

     

  • Thanks for your kind and supportive words Maddie. It's hard sometimes and I think looking back I carry a bit of guilt that, as a former nurse, I should've been more open and honest.....but then that was not my place, I'm not a cancer nurse so didn't know enough about it and think the Oncologist should've been more open. My hubbie saw him once and all he said was " you've gotta try and fight this" and John died the day before he was due to see him again.  What people forget is that chemo is poisonous and yeah around day 10, the body is so weak, despite maybe looking and feeling fine, and a cold virus quickly turns to pneumonia. It's a hard decision to make and touchwood you and I never have to make it Maddie. So sorry for your loss and sending healing hugs. Xxx

  • Hi ime so sorry i think we cling to our best chances i dont think oncologist would have prescribed it if there was no chance if you were in that position what choice would you have made .i would have dont knock yourself out over it or try to work it out you cant unfortunately guilt comes with grief. so you did what what you could .felt the same with my liz first course of chemo monday massive stroke friday morning cotracted sepsis and died 4 am suday morning . I was glad it took her quick for her sake but it was the cancer not the othere things and if not for the sepsis she would have died anyway probably in terrible pain .i never let on to her that she was going to die i didnt want her to feel that way maybe a few do say goodbye but do we have to realy .its so early for you but you need to heal yourself and that takes time just take it easy dont be alone to much and take one day as it comes theres a post on here if you can find it is from sarapine and its heading signs after loss of a loved ones theres lots and lots of people replied you may find it a comfort . .best wishs your not alone we are here .paul

  • Hi Paul and thanks so much for your kind words. So sorry to hear about Liz but, like with my John, I'm glad it was quick and she didn't know, nor had to say goodbye. I think tho' I'm going through the " what ifs" and the things " we planned to talk about" but of course never got the chance to. I think when your loved one gets a terminal diagnosis you are too busy living each day to think about " that conversation " and of course if the end comes swiftly, we feel robbed  of time. Hope this makes sense? 

    Tricia....ps I'll go and try and find that post you suggested. Healing hugs and happy memories   x

  • Hi your absolutely right about going through the what if its youl work it out yourself that what you both did was right for you and you never gave up  seems to me did everything right but its a sneaky disease is cancer .paul

  • Thanks for your reply 

    I have learned something from it whic rings so true 

    He had his last chemo 5/1/19 , incidentally his birthday and woke up with a fever on the 16/1.He had a slight cough the night before but no raised temperature, and it went on from there.and he died on the 19th ,his immune system was so weak

    Myself and my (adult) children saw him on the afternoon , he was in  discomfort and on a oxygen mask,but very alert. I left at 6.15pm and the last words I said to him were "I love you". As I walked in the door the hospital rang to,say he had "deteriorated " and it turned out he had died 15 mins after we left.

    He had taken his mask off and just fell asleep .I try not to think did he do it by accident or on purpose,or it would drive me crazy 

    love Maddie

     

  • That's a hard one and must be on your mind at times and of course, you will drive yourself mad as the person who can answer it, isn't here. Ya know that expression " a lightbulb always burns brightest just before it blows"?  Well in Nursing I found that to he true and maybe he felt a bit better, could breath a bit easier and therefore took off his mask! Honest it makes sense! I was lucky that John was at home and after slipping very quickly into a coma, died within a few hours and that his beloved dog and cats were with him. But I didnt " tell" him or say anything to him about dying except at the very end....I told him I loved him and would be ok....despite being in a coma he lifted his hand and ruffled the dog.....couldn't believe it! So maybe they know and maybe your hubbie wanted to go looking peaceful, for you and not strapped to an oxygen mask. Maybe, like my Stepmum, he chose to go alone and not hurt his loved ones and spare them the pain of being there? Xxxx

  • Do you know your reply has given me a lot of comfort, about feeling he could take off his mask

    We never acknowledged that he was going to die then, although we were told he had 6to 9 months,,it was only 3months after the oncologist told is this

    We focused on a holiday to Spain that we would book after he had had his chemo, as we had to,cancel one booked September 18 whrnhe stared to be ill. We both preferred to,stay positive

    I am so glad we had our little rescue pug , she means so much to me,I never come home to an empty house.They give unconditional love.

    So nice to talk to you online

    x

     

     

     

  • So  glad to have helped Maddy. Indeed I believe the dying seem to garner strength at the very end and like your hubbie, die with dignity and strength. Funny you said about the hair as a mask would mess that up! Vanity at the end, I like that, pride in your appearance , despite the end, shows strength of character that!

    Love and strength

    Tricia xx

  • That is a very apt description Paul ....it sure is one sneaky devil and can wreak havoc round your body WITHOUT any symptoms. With it in general on the rise and especially these small cell cancers affecting much younger people than is the norm, you wonder what's blooming well causing it! Environment/ pollution/food/ lifestyle?????

    Tricia x