DH50 has non-hodgkins lymphoma...palliative care discussed with dr today

[Lalaland50]

I am at my wits ends. DH, 50, was diagnosed with Non-Hodgkins lymphoma May 2020, in his bone marrow. Two regimes of chemo later and the bugger is proving bloody resistant and it's back all over. Spoke to the consultant on the phone today - he said, in a very black and white way - that there are only 2 options left, and he's not that hopeful they will work. Then, palliative care, then only a matter of months before he dies. I can't believe I'm writing this. I have two DC, 8 and 12. The 8 year old is autistic.

We have to wait a week until they decide on the next treatment as they are reclassifying the lymphoma (not that it will make a difference to the outcome) and then they try one.

I am in a panic, and in shock. I think he's going to die. I know he's not reached palliative care yet, but it was the way the dr was talking and to say that to us over the phone, meant it must have been important for him to lay the cards out on the tables as it were.

I'm not asking for sympathy really, more, sharing for any messages of hope. But I also don't want to be in denial. Will this nightmare just get worse? how do I cope? I'm quite simply terrified. I can't lose this man.

I'm afraid I don't have much advice but don't want you to be alone. This is shocking news and understandably landing in your shoulders. I understand the weight of expectation - to care for your husband and also your children. If after your next talk with your consultant things continue to look bleak, there are many charities who can help you with memory making and supporting you through those times. As I've never been there, I can't offer you more but my most sincere wishes and a big hug for you and your children x

Thank you x

I don't have informed advice either OP but didn't want to read and run. Do you have family and friends you can confide in tomorrow? You will need to draw on whatever support you can for yourself so that you in turn can support your DH and kids. Don't try to bear it all yourself.

My faith is a bit intermittent but I will pray for a good outcome for you

I have to go to bed (rubbish at late nights!!). I will speak to my friend who also sadly lost her husband early when her children were 9 and 3 ( a little boy whom they had just finalised adoption). I know the pain of loss ( we had a stillbirth at 30 weeks) We never discussed it with our then 2.5 year old but a couple of years later, he told us all about his brother who died in my tummy. I suspect your children will too pick up on things. Take care of yourself and keep
Posting. Dream of the good times that you have shared. He s in the safest hands - the nhs are amazing and if the worst happens you will gather all his strength to share with your children x

Oh that's just the worst news for you. I am so sorry I don't have any advice for you but also didn't want to read and run. You must be reeling after receiving such devastating news. Your world has been turned upside down. Hopefully someone can offer you some hope/advice having been through similar. Please take one day at a time and take care of yourself.
Sending you hugs and and I truly hope someone who has been in your shoes can give you something positive to hold on to xx

I am so sorry to read this OP.

Nothing I say can change or take away how any of this feels.. as PP have said, there are charities to help make memories between bow and the future...

And although you aren't at the stage yet, I strongly recommend you get in touch with your local hospice - they are there to support through treatment as well as palliative-ly, and as much support for the family as the patient.

They may be able to help answer any questions you have, and help you understand the processes as time progresses.

My DH died 6 months ago, the pallative were amazing tbh - was much easier to get to them and ask questions than our oncologist.

Our 18 yr old ASD son accepted it better than most of us tbh. College put counselling in place for him.

The thread 'still the storm' is people with cancer / terminal partners where you can vent, laugh and cry.

Thanks all of you, and @notapizzaeater, thanks for sharing your experience, I really appreciate it. I feel very lonely in this.

No advice just thinking of you, your DH and your family - sounds incredibly difficult xx

Thank you all. I’ve been reading about the drug they may be able to give him and it’s a successful one for some people. I don’t know how to balance all the news and tolerate this uncertainty- and I have the urge to tell the kids, but I know it’s too confusing for them now. He might respond well, he might not. It’s the most stressful thing to cope with.

We have to wait a week until they decide on the next treatment as they are reclassifying the lymphoma (not that it will make a difference to the outcome) and then they try one.

I was going to say that it can make a substantial difference to available treatments and then I saw you'd posted this:

I’ve been reading about the drug they may be able to give him and it’s a successful one for some people.

I hope that he's eligible for it (if it depends on a specific type) and that it suits him. As PPs say, the relevant charities can be so helpful and have amazing family support as well as access to expert advice on a number of matters - from money to treatment options.