urgent help please

[purplerain44]

Hi, my DH has been in hospital for 5 weeks now. His low-grade lymphoma has transformed to an aggressive type. It's in his bone marrow and the new chemo needs to take effect ,but isn't. So far, his counts haven't gone up and he is having infection upon infection. The consultant said yesterday, that after today's bone marrow biopsy they will know what's going on - his bone marrow might be too damaged and it might be that he needs a donor stem cell transplant - this will be the only thing that can help. He is of a very small ethnic minority, with no siblings that could donate, so this may not be possible. I have had 2 hours sleep. I have 2 DC, 8 and 12, they don't know that they might not see him again. We can't visit him. I have diazepam, beta blockers and now just started taking sertaline as I am unable to cope mentally with what is happening. I don't have any support in my house, as I'm worried about covid, but yesterday some friends have said they will bubble with me. I'm just lying here, and all I can think about is what is happening to us and really struggling. it may turn out ok. But the panic i have now and throughout the day is beginning to be unbearable. I have a therapist I can talk to, but day to day, this is a nightmare. I just need to find a way through this. I just rang the Samaritans but there was answer. What can I do to help myself at the moment?

I speak to a few different gps who have all helped prescribe me the meds. One said to stop taking the diazepam (I’m taking 2.5g most days). I know it’s addictive. Hence the sertraline.

I’m here too. Sorry you’re going through this awful time. You’re doing well to get through the days so that’s really something to be proud of. Anyone would struggle and to have to cope with such a situation in the midst of a global pandemic is even more difficult. The nhs line that someone mentioned sounds useful. I’m always here to listen too. Day or night. I’m not good with answers but I’m here.

It must be particularly hard at the moment because you’re waiting on the bone marrow biopsy so you are worrying about all scenarios

Thank you everyone. If I go away for a bit to deal with the kids etc should I come back to this thread?

I’ll keep checking in purple rain. You need to focus on the best things for you. Maybe it’s worth chatting to the gp today and accessing the Macmillan number someone posted

Also at a time like this I wouldn’t worry at all about the medication. Take whatever is helping. After the crisis you can stop.

Thank you - yes I have spoken to the Macmillan help line. They went very kind but not particularly helpful. I’ll try again though. What do you think I should I speak to the gp about?

Also you can get through the day - and night- hour by hour rather than looking at the whole day ahead. Each hour you get through you’re making it for the children.

Were kind not went

Takes me a while to get up and dressed. So going now, but I will check in with you later this morning. We are all here for you, keep talking, the hours will fill with chat. Try not to ruminate on the what is.x

@purplerain44- I wonder if you should let them know about the panic you’re feeling to discuss meds and see if there is more support available. But do what works for you.
The suggestions of previous posters seem v good- diaries, regular support catch ups, taking day in small chunks, Recognising your achievement in just managing the small things at the moment

Yes I mentioned the panic and that’s why they prescribed the anti depressants I think.

Hello. How are you feeling.. I have been coping with a flood. I wondered if you liked Prince or symbol as he was known in later years. I think his hips gave out due to the vigorous dancing he did on stage.

@purplerain44 I hope your day is going ok

I hope you’re ok and have got through the day. You sound really sensible and resourceful so don’t forget to be kind to yourself. Look after yourself the way you would care for a dear friend.

Thank you. I've had my friend here all day, helping me, so although I've had big panics and terrible thoughts, she's been here, which has been a lifesaver. I told my DS this morning that his dad might not survive this. I can't believe I"m writing this. And the consultant I spoke to said that his situation is very serious - there is another chemo option - depending on the biopsy result - but then the situation would be grave if this didn't work. All i can think about is the worst case scenario - telling the kids, saying goodbye. Living without him. And I can't understand/ process it. We're not at that stage yet, but at the moment, his bone marrow isn't working, and it needs to start working. Otherwise, he won't survive. I have no idea how to tell my DD8, potential ASD and severe anxiety. Her tummy aches and fears have started up again so I know I need to. I've never felt so bad. My friend is staying the night, thankfully. Thank you all for posting messages to me. I appreciate it.

Lovely that your friend is staying. And whatever happens you will manage this because you will be there for your children. I’m terribly sorry that you’re facing such a desperate time.

I’m so pleased your friend stayed with you, that’s really good. It’s incredibly tough for you so even getting through the day is an achievement.

I hope you’ve managed to get through another day. Hour by hour you should be proud to get through. You’re managing a huge huge crisis and you’re so important to your children. You sound like such a lovely mum and wife. I hope you are staying strong. Thinking of you.