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Original poster

urgent help please

47 replies

purplerain44 · 05/02/2021 05:53

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?

OP posts:
Abcdeisarealname · 05/02/2021 05:59

OP, I’m not sure I have any practical suggestions, but didn’t want to read and run. Do you have a group of friends who you call regularly? Or could make you meals and drop them round? I’m not sure anyone can make the mental anguish of what you are going through better, but if some of the practical stuff was taken off your plate perhaps you could cope a bit better. Flowers

Original poster
purplerain44 · 05/02/2021 06:01

yes, I have amazing neighbours who are making us food. I am finding it hard to function at home, so it's really helpful. And good friends who are calling.
Thank you for answering.

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Bumblesbumbles · 05/02/2021 06:01

@purplerain44 it sounds an incredibly hard situation for you. I’m not an expert but didn’t want to read and run. This is such a tough time for your family and anyone would find this incredibly difficult. The current covid situation means your normal support network isn’t there which must be so hard.
I’ve suffered extreme anxiety during difficult periods too and I know how awful and isolating it can be.
It sounds like you’re doing all the right things in terms of getting a support bubble in place, therapy and medication support. I’m awake so happy to keep talking on here.

Original poster
purplerain44 · 05/02/2021 06:03

Thank you. I am just trying to hold it together. I don't really know what else I can say. thank you for listening.

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Abcdeisarealname · 05/02/2021 06:05

I wish I could just give you and your children a huge hug. Xxx

Bumblesbumbles · 05/02/2021 06:06

I’m more than happy to listen. Are you able to function day to day? Are you able to open up to those around you about how you’re feeling?

lydia2021 · 05/02/2021 06:06

Morning. I am so sad to hear of your struggles. Life sends us stuff, and its very difficult when we are going through it. And being alone at night brings all sorts of thoughts and feelings to keep us awake. Herbal Kalms might help at night.. Distraction is the way I can think of. Calming music, some day time project with the kids. I am here if you want to chat

Abcdeisarealname · 05/02/2021 06:07

Are you in touch with Macmillan or your local cancer support charity? Perhaps they could offer some practical suggestions. Do you have a cleaner?(still allowed as it’s their place of work). Or even someone who could come in and do the laundry? It would just ease your load.

Original poster
purplerain44 · 05/02/2021 06:10

I am barely functioning but am self employed so trying to keep working as it’s my only escape. I do tell friends how I’m feeling. I’m scared of taking herbal remedies on top of everything else I’m taking. Thank you

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Original poster
purplerain44 · 05/02/2021 06:11

I’m scared of getting COVID so not been letting anyone in to the house.

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Bumblesbumbles · 05/02/2021 06:16

@purplerain44 I completely understand about covid and work being an escape. Our family has been through an awful tragedy in the past. I found it v hard psychologically so I can understand how frightening and awful the anxiety can be. The sleepless nights compound it. I must say we got through it- I never thought we would.
At its worst I’ve needed to rely on medication and I’ve had simple projects to take my mind off things (like painting a room). But really it depends on what works for you

Bumblesbumbles · 05/02/2021 06:17

Also- there is 111 option 2 if you need it but I’m sure you know that (apologies if you do)

lydia2021 · 05/02/2021 06:17

It's a great weight on your shoulders, trying to keep everything together. For your kids and your dh. Have you thought of a diary. Writing down your thoughts as they happen. This may help at a later date when the dark clouds lift.

FlatEarthling · 05/02/2021 06:19

Hi, so sorry to read this. How are you children doing? Does the children's school know? They may be able to offer them some support.

Original poster
purplerain44 · 05/02/2021 06:19

What is the 111 option 2?
And yes I could try writing - this is helping right now.

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Original poster
purplerain44 · 05/02/2021 06:21

The kids are just waiting for him to come home and without anything definite to tell them I’m a bit stuck as to what to say. They know I’m worried though. Their schools know and aren’t very helpful.

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Bumblesbumbles · 05/02/2021 06:22

It’s accessing mental health services if you feel you need to.

Original poster
purplerain44 · 05/02/2021 06:23

They do know he’s very ill but he’s able to FaceTime them and seems ok, looks well etc so its a strange situation.

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Original poster
purplerain44 · 05/02/2021 06:26

Thank you

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oohmamama · 05/02/2021 06:27

Please call the Macmillan support line on 0808 808 00 00 to see how they can help you. There's lots of info on their page as well about supporting him someone with cancer.

Also have a chat with your GP - pregablin might be better for your anxiety than diazepam.

Sertraline will most likely make you feel worse for a week or two before better so please bear in mind you will start to feel less anxious soon.

Do you have anyone who could come and stay with you for a little while? I have been through similar to you and found having another responsible adult around very helpful for my anxiety. It felt like a shared load whereas right now you are having to shoulder everything.

Bumblesbumbles · 05/02/2021 06:30

I feel better if I have a plan in place and feel I know where to go to if things get too much. But everyone is different. For me knowing I can talk to my family, having a supportive gp etc helps. Do you find it helps being able to talk to people? Is your GP supportive?

Original poster
purplerain44 · 05/02/2021 06:30

I really really wish I could have someone stay with me but everyone I know has their own kids, work etc. A few friends have now got together and have decided to come in to the house occasionally though as they know I’m struggling.

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Original poster
purplerain44 · 05/02/2021 06:31

I’m also writing this and thinking, maybe things will get better. But they could get worse.

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lydia2021 · 05/02/2021 06:32

Good to hear writing to us all is helping. I had cancer many years ago, and kept a diary, mainly for my d. But d has never seen it, or read it. But I know it's there if d ever does. Its written, collating my thoughts , as I went through those dark days. At the moment, you are in limbo, waiting for results. The outcome is in the future, so concentrate on now. Take relaxing scented oil baths, and remember you are the pin keeping everything together for your family. Your kids need you to focus on now.