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

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

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

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.