My husband has incurable cancer AMA

[Amaaboutthis]

He was diagnosed with a rare cancer just under a year ago. He’s currently on treatment and ok but the future is incertain AMA

I'm so sorry. How are you all coping?

At times it’s very hard. He is in good health generally so it hasn’t had a huge impact on us yet but it will and I’m very scared of what is to come. We have a close family on both sides and good friends which helps. We try to carry on as normally as before

I wish you both well. By sister has a terminal cancer diagnosis. As she puts it ‘some days I’m dyeing, some days I’m living’. Lots of ups and downs x

I’m sorry to hear about your sister. We have never said the word terminal and the doctors have never used the word, I feel terminal is when there’s no more treatment. For as long as he can be treated we talk about treatable but incurable and we hope for lasting remissions or stability in the condition. At the moment he’s living with the cancer, not dying from it but it’s still v hard to get our heads around.

I wish your sister and all of you my very best wishes

My mum also has an incurable cancer.

She has never been ill and handled her first chemo well. She's just recently started her 2nd batch after 15 months in remission.

Do you ever get a feeling you wish you didn't on birthdays etc that it could be last one?

I feel so guilty when I think like that

youarenotkiddingme I’m sorry to hear about your mum but happy to hear she has never been ill. If we can get a 15 month remission from this next treatment I’d be delighted.

I constantly think about things being our last. I think is it our last holiday? Our last family day out? Our last anniversary and I am so cross we are dealing with this when we have a young family. Wishing your mum continued good response to treatment

Thankyou.
My mums cancer was discovered as she had a lump in her neck.

No one imagined cancer as she had no symptoms. 4 weeks later with diagnosed with a cancer that has a mean survival rate from diagnosis of 4 months.

I'm sure you understand that feeling of the rug being pulled.

I wish you and your DH all the best with treatment.

Thanks so much. Sounds like it could be similar. His is 7.5 months average. Currently at 10 months and still doing ok. Hoping for more

OP I have no questions but very sorry you are going through this. My DH is in for investigations on Thursday after seeing his gp for lumps on his chest. He is being sent to the Breast Clinic and what's after putting the fear of god into me is that he got an ASAP appointment in less than a week to be seen.

How old are you and DH?

Sparky any red flag symptom for cancer automatically results in a two week referral, because obviously they want to rule out (hopefully) cancer as quickly as possible. It doesn't necessarily mean they think it's likely to be cancer. I hope it turns out to be something harmless

Hi Anna sorry to hear about your husband's diagnosis. What type of cancer is it? I have incurable bowel cancer, which is really common. Though I was a bit more unusual as it was diagnosed at 21. I'm also 8n the treatable, but incurable camp at the moment. I've been incredibly lucky and had over two years of stability on my current treatment. I hope your husband's treatment continues to work well

sparky good luck to your husband. I hope it’s nothing.

judith we are mid 40’s. This really wasn’t what I ever envisaged happening to us at this point in our lives.

leslie hope you have a long time stable. 2 years is great. Do you still have a reasonable quality of life? So far DH is fine other than being tired and generally we potter on as usual

Have you read Late Fragments by Kate Gross?

I'm so sorry that your family are going through this.

What are the best or worst things that people have said to you? And what, if anything, have you told your children?

Best wishes.

I am so sorry to hear this, OP. My mum also has terminal cancer (this was the word used, treatable but terminal. My mum is a retired HCP herself though, and she can understand every word they say and write and is pretty blunt and upfront) though she is doing very well at the mo, but when she was having chemo it was dreadful. But she is an elderly lady, already lived longer than most, how it must be with a younger man I can’t think.

No questions, but sending you and you family love and best wishes x

Nobody has said anything bad to us and we’ve kept it very low key. Our closest friends know the prognosis but others don’t. We have told our children that dad has cancer, that he’s having treatment and that he will always have treatment and that the doctors are treating him but won’t cure him . They asked if he will die and we said that yes possibly but we don’t know when but that we will tell them if it’s going to happen. I can’t say to them yes he’s terminal because who knows if he will live 1 month, 1 year or 10 years.

We have always told the truth but we don’t go into a huge amount of detail and we keep it as factual as possible. So far they seem ok

The best things people have said to us aren’t actually words, they’ve just been there. I haven’t read late fragments but I will look it up

Sorry to hear this I Lloyd my dad in January after 4 years of diagnosis the doctors told him he would live 2 max but he really fought for his life. Chemo is different for everyone aswell my dad was really well on chemo never lost hair and to look at him you wouldn’t of been able to tell he was going through the worst battle of his life. For me the most important thing was making sure every moment counted and that nothing was ever kept from me no matter how hard it was to listen to I was even at the hospice right up until he took his last breath and it was only in December that he really started to go down hill before then he was doing and looking great. I wouldn’t wish anyone to have to go through this and I feel for you your husband and your kids just make sure you all make lots of happy unforgettable moments! Xx

My BIL passed away in feb from brain cancer. He was first diagnosed 3.5 years ago. He was 53. My SIL, his wife and DHs sister is also terminally ill. She has vasculitis. Prognosis is about 10 years. She arrives tomorrow for treatment here in NYC. It's all about slowing the progress with her condition.

I’m sorry to read this, I lost my dad to lung cancer 18 months ago.
Glad that you husband is doing ok atm and long may it Continue.

What type of cancer does your husband have? Are there treatment trials he can take part in and is this something he would try if it was available? (Sorry if this has already been asked, and I understand if you'd rather not say)

I have a very close family member who has multiple myeloma. We were told his cancer is incurable too but so far he has managed 6 years of different treatments.

All the best to you and your family.

I’d rather not say the type as it’s very rare but yes there are trials and we’ve a good idea of which ones might be available some of which are actually extremely exciting and involve immunotherapy and the use of viruses to fight the tumours. We’ve also been lucky enough for him to be a private patient which means we’ve been able to get him under one of the leading experts in the world in this cancer who also leads much of the international research into it. We’re also incredibly lucky that we’re in a financial position whereby we and our family can afford to self fund any treatments which can’t be covered any other way so we do have options and are in excellent hands. I’m eternally grateful for this but it’s all a bit rubbish. I would love 6 years with him as it would get 2 of our children into adulthood

So sorry to hear this. I hope you have many more years together.

Can I ask what his symptoms were? We're they fairly innocuous?