Hi to all,

I'm Lyn, 26 years old, and my husband Stuart, also 26, was diagnosed with acute promyelocytic leukaemia 3 weeks ago. Thought I'd jump on an introduce myself and have a bit of a vent at the same time.

We went to local Emergency Department 3 weeks ago in the middle of the night when things just weren't right and he hasn't come home since. He woke with a bleeding gum and a nose bleed having been increasingly tired amoung other symptoms over the past 4 days.I admit the thought of cancer never entered my mind when I decided it couldn't wait until the morning and we had to get down there sooner. Bloods taken a 4am, got the diagnosis at 6am, transferred to a larger hospital by 10am and on leucophoresis at 11am and then straight into ICU for 4 days. He is now on the haem-onc ward and has had his first round of chemo but has to stay as an inpatient until a bone marrow biopsy in a further 2-3 weeks to determine if he is in remission or not.... and then take it from there.

I've been doing pretty well up until now, but finding that I'm having to start thinking about how I'm going to be able to get back to work more often. Stuart was only working casual so my income is all we've got right now, and I'm worried about running out of my sick leave and annual leave too soon. I'm a doctor, but training in Paediatrics, so caring for an adult feels all new again. Work has so far been great. They are letting me work any hours I want at any time of the day to get paper work and other non-patient contact work done (as paediatrics tends to be high infectious spread and I can't give him any exposure with a total white cell count of 0.3!). I took the first 3 weeks off and in the last week have only been in to work for 2 days as he then got sinusitis and became very unwell. Being in a training program I'm still struggling as to whether I try to keep up with the work or talk to my supervisors and take time out of training.

It's the uncertainty of what is going to come - and even in the best case scenario that it will be a long time before he might be 'well' again - that I'm most struggling with. If I could map it out and tick off the time we had left it might be easier to get through, but of course no one can tell us that.

We've got lots of support - for better or worse. As it is so early in the course we've had lots of visitors coming through so far, but have needed to taper that off as he gets more immunocompromised and feels sicker. His father has been a great support, but his mother has been a real source of stress. The sort of mum who had trouble letting go and was difficult to manage even while he was well. She has a lot of competitive behaviour towards me, and even his friends (to a lesser extent) when they came to see him, which wasn't helping. It got to the point where Stuart told her to back off and she didn't even listen, so her brother had to sit her down and tell her some truths about her behaviour and explain that she was close to being bared from the ward - which would have been horrible all around - if she didn't calm down a bit and stop stressing everyone, be especially Stuart, so much.

Well, thank you to anyone taking the time to read this. As far as actually asking questions of the rest of you carers or patients out there: How did you manage juggling going back to work with the carer role? Did anyone else have similar issues with mother-in-laws and how did you manage it?

Thanks,
Lyn

Hi Lyn

My husband was diagnosed with CML when he was 27. Hi mother took it very hard and as a mother myself I understood that she would. However she would ring every day, sometimes 5 times a day, just to see how he was. He got sick of it being thrust in his face and it got him really down. Of course being his mum he couldn't just tell her to stop calling, why? I don't know!!!

She could have easily taken it to the other end of the spectrum and never called, huffed and what not.

So I made a call and ended up telling her. It was very hard as I didn't want her to take it the wrong way and I am not always the best at being diplomatic. I simply told her that my husband wanted to deal with it himself. He is going to feel like crap for a long time and he doesn't want people ringing him constantly asking him how he is going. He wants to live as normal life as he can. I also told her that I understood her pain and that this was affecting her. He was her son, how could it not. I told her that we understood that she needed to deal with the diagnosis in her own way and that while it meant her wanting to know everything about what was going on, she needed to wait for us to share that information not ring us and hound us.

Luckily it went well and she was able to understand. She stood back a lot and it made life very easy. However we did have to take time out every month or so to ring her and talk to her for hours as she hounded my husband for every last detail about how he was feeling and what is latest blood work showed. She has gotten better over the last year and she waits for us to ring her and tell her information after the dr's visits (she would ask my husband to tell her when each visit was and he would tell her. She used to ring the night of and it was very draining on my husband.

My husband was only in hospital for a week or so when first diagnosed so he didn't tell anyone but his best mate until he got out.

-Social

Thanks for your response, social.

Stuart is now out of hospital (after nearly 7 weeks as an inpatient!).

He has started his second course of induction therapy this week.

I've had to go back to work as leave was running out and I needed to keep some sick leave back for when he becomes unwell again. It was actually my first day back today, and Stuart has coped really well. The leukaemia car picked him up and took him in today, which was a great service (thank you leukaemia foundation!).

Stu's mum is still being pretty difficult. She has started driving past and checking when the cars are and aren't in the driveway and quizzing us about where we've been and who we've been seeing. But at least she isn't calling every day now.

Hope you are plodding along well (plodding really feels like the right phrase at the moment).

Lyn