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Partner, leukemia and infection.

NathanR
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Hi, I never thought I would be joining an active forum for seeking advice for such a horrible topic. But here I am, with our ongoing experience of cancer. 

Where to begin...well my partner Emma was diagnosed on the 5th of October with All leukemia. What we thought was flu escalated to this diagnosis. As you know your world turns upside-down.

Everything was going relatively up until the finish of her phase 2 induction. She contracted an infection in her picc line, then shingles and an infection in her appendix which had to be removed 5 days ago. So she's been in the wars.

She made it through the operation but for the last 5 days she had been nil by mouth while her bowels wake up after the surgery. She is now developing an appetite but the thing that is killing me most out of all of this is the confusion and dellusion due to the infection and I don't know how long she can go on like this. It has me actually petrified. 

Does anyone know anything on this subject? As it is new to.me and is such a horror to witness.

 

Thanks 

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    Hi - welcome to the forum and I am so sorry to hear about Emma's diagnosis. As you so rightly say,  it is a real turn your world upside-down moment when the C word enters our world!  This last week must have been excruciating for you - watching your partner go through so much and not knowing the outcome. I would imagine that you have been to the hospital this evening and got home to a lonely house with all these worries on your mind - Christmas night isn't really a great time to talk things over with friends is it?

    I really would suggest that you have a good chat tomorrow with the ward staff and ask if Emma is reacting as they  would expect following her operation and infection.  Tell them how frightening you find it to see her so confused so that they are able to reassure you.

    I have never been in Emma's situation but I have had pretty major surgery and know that I spent a good 10days suffering with confusion and hallucinations due to the pain-relief medication.  I believe that a bad infection also causes these symptoms so I would imagine that with the infection, medications and lack of nutrition, it would be pretty normal for her to be suffering in this way.  I can imagine that it is not at all nice for you to see and its no wonder it scares you!

    I so hope that you will start to see an improvement in your partner's health over the next few days as she begins to eat and her treatment clears the infection. It's easy to forget yourself with all this happening around you, so please take care and be mindful of your own health too. I hope you have others around to support you.

    Please keep in touch and let us know how you are both getting along. I hope 2016 will bring you good news regarding Emma's diagnosis and treatment and wish you all the best.  Take care x

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    Hi Nathan,

    I'm in a situation eerily similar to yours this time last year and I would love to know how everything turned out for you. My boyfriend also has ALL and after finishing phase 2 has contracted two infections and has been in hospital for the past 5 days. He is also having trouble eating and is on a cocktail of treatment so he's hallucinating and very delusional.

    If you have any advice or words of comfort they would be much appreciated! I really hope things have gotten better for you both. 

     

    S

  • Offline in reply to sphytylr
    Hi sphytylr, Firstly my fingers are crossed that your partner is going to improve. coming on this forum knowing that your other half is in the predicament due to infection is such a daunting, horrifying time. But as I write this my partner is sitting alongside me watching a movie. The infection, hallucinations and delusion is hard to bare as the one looking in. Heartbreaking and I know coming on here seeking advice is part of that time I don't want to visit again. But it gets better. You just have to hope the antibiotics do their work. I didn't think my partner would make it but the body is resilient. Emma has been in hospital on a number of occasions and we seem to hit hurdle after hurdle and she is only 3 months into maintenance. Latest being kidney failure due to mercaptopurine dosage increase. I have expected the realism that trips and stays in hospital are inevitable but you just need to be there to help and support. Keep faith that things will get better. My thoughts are with you and I hope things improve Nath
  • Offline in reply to NathanR

    Hi Nath,

    I hope you've both been sat enjoying more movies together and spending less time in hospital! How is everything?

    He pulled through the infections so that's the main thing, he began intensification but then his MRD came back positive this week so we will need a stem cell transplant. We weren't expecting this at all as we had been advised that he had responded well and a transplant is unlikely. Did your partner have a transplant? I've no idea what to make of it all and the hospital sort of dumped him with the news yesterday morning and left us with a million and one unanswered questions. 

     

    Best,

    S

  • Offline in reply to sphytylr

    Hi, Fortunate he's pulled through that period of infection. It's a daunting time when you have to wait and watch for a reduction in the infection. Sorry to hear about the mrd. My partner hasn't had a transplant as the treatment seems to be hitting the leukemia. I don't have any first hand experience in this to give any solid advice, sorry. Plan to sit down with his consultant and take a couple of family members to remeber/write as your head must be battered right now. I have seen spoken to a few people who we have gone through the transplant route and have had success so just continue to be hopeful and positive. Hope everything gets better. Nath.

  • Offline in reply to NathanR
    HI I am new to all this ***! ALL diagnosis - only after last Thursday my lovely husband Mark,has been diagnosed and is now in The Royal Marsden at the beginning of this hideous journey- I feel utterly overwhelmed and daunted about what he is about to go through it seems so brutal and scary - it seems such a long road to go down after leading a normal life last week! I was trying to find others supporting loved ones with this diagnoses as it is so rare - I have other friends who have cancer but not ALL which to me at this stage seems a massive deal compared to other cancers (that is completely unfair I know and I hope you can take that in the manner I mean it) my hubby Mark is so frightened and I cant make it better for him - will he even cope with induction I would love a reply and hope you are doing well
  • Offline in reply to Sybs

    Hello sweetheart 

    I'm not a nurse I'm a wife and mother just a ordinary woman , and last Thursday my world was turned up side down after my husband John of 31 year got his results back from his bone marrow biopsy test !

    My husband had had cll for 9 years and this has been controlled with the watch and wait very well since .But now he has developed aggressive mayloide leukeamia on top 2 leukemias it's a double blow !

    He starts induction chemo this Sunday and we are both so scared as my husband has other health issues plus his age . Time is precious we have great faith in our consultant and we are good Christians,  

    This disease is cruel and I know cancer is cruel but this cancer and the involvement of what patients have to go through to get better seems very unfair , 

    Your not alone I'm on the same page as you and I pray to God both our husband's beat this xxx

     

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