Hi new here

Hi how are you doing? How is your husband feeling? Just wanted to let you know I’ve been thinking of you xxx

Hi, 

thank you for messaging - he’s feeling really well, he’s just finished his first course of chemo, and now just needs to be stable enough to come home. We don’t know how long that will take but are assuming he’ll be in for another two weeks going by what we were told at the start. We’ve been doing ok being apart - we message and FaceTime a lot, and we bought a portal for the tv so he can see all of us together, that’s really nice. (We have a 3 month old grandson, so he loves being able to see him playing)

How are you and your partner doing? Has he finished his chemo yet? Hopefully it hasn’t been too tough - I’m sure it’s nice him being at home and having it as an outpatient, but it must also be quite stressful as you are responsible for him when he’s home. 

Judith xx

Hi glad that things seem to be going smoothly for you and your husband. My partner is on week 3 of treatment, he’s having 12 weeks and then they’ll review him. He’s doing ok too, his WBC is down to 5 from 150+ But his platelets and HB are low so that’s a worry. It is lovely him being home but I do worry and am constantly checking. Fingers crossed that things carry on doing well for your husband. Take care Karen xxx

Hi Karen, 

I’m glad things are going well for your partner too - 12 weeks is a long time, but you’re a quarter of the way through already. Time becomes a very funny thing with illness like this doesn’t it - it’s only been 3 weeks since my husband went to A&E feeling ill, but it seems like months ago.
 It’s strange isn’t it, getting used to all the different things they watch. My husband was a blood doner for years, and donated platelets too. Now he is being given both all the time. 
I can imagine you are constantly checking on your partner - even without my husband home yet they have stressed how important it is to act quickly if he feels unwell, and told me to get an ear thermometer. I’ve warned him I’ll be zapping him with it a lot! 

Take care, and message whenever you want to chat.

Judith 

We’ve bought an ear thermometer as that’s what they recommended for us too   I’ve been zapping my partners lots. I’m glad we are in touch, thank you. Whilst I wouldn’t want anyone to have to go through this it’s nice knowing there’s someone else out there who has an understanding of things. Take care xxx

Hi Karen,

just checking in - how are things going with you and your partner? Hopefully his platelets and HB have improved since we last messaged.
We seem to be stuck in a bit of a loop, they keep putting platelets in but just can’t seem to get his count to stay up, as soon as he gets a slight temperature it just drops again. It feels like a long time that he’s been in there now too. It’s hard not being with him as he has to remember what the doctors are telling him to pass the info on to me, and of course he doesn’t necessarily ask what I would ask. I don’t feel like I understand everything totally, but I’m too scared to google anything. I basically stick to the info in the booklet they gave us, and what he passes on from his doctors.

it’s all just hard isn’t it? 

Judith xx

Hi Judith lovely to hear from you. My partners platelets have come up a bit but his WBC is very low at only 2.6 so it’s a bit worrying. He’s struggling keeping his temp down but it hasn’t gone above 37.5 today so hopefully it’s starting to settle. He had a break from treatment Friday/Monday with it being bank holidays so I’m hoping his blood work is a bit better. I’m constantly worried about him but it is good that he’s home, I really feel for you not being able to be with your husband. I know what you mean about not getting the full info as my partner gets so much told him at treatment times that he can’t take it all in and again he doesn’t ask the questions I would ask. I don’t think I understand much about it. I don’t feel like I know what the aim of the treatment is and at what point do they decide it’s working/not working. Have they suggested anything for your husband to help keep his platelets up?   How are you doing? Are you managing to eat and get some rest? 
Thinking of you. Thank you for messaging I feel less alone with us being in contact. 

Karen xx

It really helps me having you to message as well, and it’s reassuring to know you feel the same about not understanding things. Although I wish it was different for both of us, and we understood it all perfectly! Hopefully as things improve with covid we might be able to go in with them to see the doctors. Have your partners doctors called you at all? I had a call a few days after he was admitted, which was really good as I could ask questions. But nothing since then, and of course I have a lot more questions now. My husband has said he’ll ask them to call me before he’s sent home. Perhaps if your partner asked, his doctor might call you and just go through things with you?
They have said he may have developed antibodies to the platelets, and that if he has there are specific types of platelets they can try. But they said that a week ago, and they are still going with the normal ones I think, so hopefully they just think it will take time. 
It seems like temperature going up and down is a common thing doesn’t it? I’m glad your partners is looking better today - it must be worrying being the one responsible for monitoring it. 
I did wonder whether calling the helpline on here would give any more general info on treatment etc - but I’m not sure if it’s more just for emotional support than medical advice. 
I’m doing ok - my kids make sure I eat, and I am gradually spring cleaning the whole house to keep busy. I guess you must also have a fair bit of time on your hands if your partner is resting a lot. Take care of yourself too - it must be very hard to switch off from all the worry. 

Judith xx

I’m glad we found each other. I’ve called the helpline on here and you can speak to a medical person, usually a nurse, about treatment etc but I found the leukaemia care helpline better but that could have just been the person that I talked with. The leukaemia helpline has a haematology nurse on in the mornings and she’s been really good the 2 times I’ve phoned. She gave me emotional support but also talked about his treatment. 
I’m glad you are eating and managing to find something to do. It is hard being responsible for my partner but I’m finding it much easier to manage than when he was in hospital as I can at least see for myself how he is doing.
Its strange about the temperature thing isn’t it but it does seem to be common thing. I hope your husband’s platelets are sorted soon. My partners drs haven’t spoken with me at all. He has a telephone consult with the Haematologist on 16th April so hopefully he’ll be able to put it on loudspeaker and I can join that. 
please don’t feel alone, message as much as you like.
Take care 

Karen xx

Hi Karen,

just checking in - how are you? I think I have sent you a friend request so that we can message privately rather than on the forum. No problem if you’d rather stick to the forum, just let me know.

Judith xx