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Hope you don't think I am crass, but I do need advice

(207 Posts)
grandtanteJE65 Tue 15-Aug-23 12:15:51

Yesterday we were hit by the bombshell: my husband presumablly has a malign tumour and the prognosis is not good.

He quite understandably has managed to understand the doctor's words much more favourably than I did, and I do realise that this is a coping strategy that he is using to find the strenght to fight the cancer.

I have no desire to undermine his efforts, but these include refusing to discuss the subject and initially asking me not to tell anyone - son, SILs friends etc. although he later agreed that I need someone to talk to about this.

So please, if any of you who have been the healthy partner in a marriage that looks like being dissolved by death very soon, can you give me any pointers?

How do I balance his needs with mine?
How do I help him best?
And how do I find the strength to smile "Although my heart is breaking"

I am looking at support groups right now, but as we don't live in the UK, you don't need to suggest any by name, as we have different ones here.

I know I married him for better or for worse, in sickness and in health, and I know we are both shell-shocked right now. and the prognosis may not look so dire on Friday when the biopsy report is in, but I need to soldier on without weeping, as obviously that distresses my husband and does me no good either.

Kate1949 Tue 15-Aug-23 16:47:45

Such awful stories. Cancer is a scourge. As well as my DH having cancer, two of my three brothers-in-law have been diagnosed now. We don't know how strong we can be until we have no choice.

BlueSapphire Tue 15-Aug-23 17:13:24

So sorry to hear your sad news; sadly I have walked that path. My DH died from metastatic kidney cancer 14 years after first diagnosis; it came back three times in that time; he had two successful surgeries, but the third time we were told that it could only be controlled by chemo, but he died 6 weeks later. That final time it was so sudden that we had to come to terms with things very quickly, within 24 hours he had gone from coping reasonably well to being almost unable to breathe. Rushed into hospital, he died a week later.

Before that we lived each day to the full, and tried to carry on as normal, enjoy being with family and do all the everyday things, going out for meals and drinks. He didn't mind how many people knew. I just got on with things and tried to make life as good for him as I could, and put my smiley face on.

Sorry I can't be more helpful, there is no handbook for this, you just meet each hurdle as you come to it and cope as best you can.

I wish we had talked more with each other about what was happening, that is my one regret.
I would go through everything all over again to have just 24 hours with my darling husband as he was - but I wouldn't want him to go through that last week again.

I miss him more every day.

AGAA4 Tue 15-Aug-23 17:18:17

I am so sorry grandtante. It takes time to absorb the shock of finding your DH has a poor prognosis with his cancer.
I found myself in that position many years ago. My DH was only 49 when he was told his cancer was terminal.
He wanted everyone to know and we did get a lot of support which was what we both needed.
That was right for us but not for everyone. You do need to look after yourself to be able to care for him so if you need to talk to someone you should.
I hope the diagnosis isn't as bad as you feared and your DH can be treated and be well again.

Georgesgran Tue 15-Aug-23 17:21:56

Thanks Hithere.. I like that phrase. X

Chardy Tue 15-Aug-23 17:30:43

Good luck, grandtante. You will cope because you've already started by talking about it.

loopyloo Tue 15-Aug-23 17:32:05

So sorry to hear this news. A lot to take in and process. I hope you will be getting more information and a plan from the doctors.
Try to take things a day at a time and always try to look after yourself by seeing friends and having some activities.
Do find out what help and support is available in your country.
Wishing you all the best.

Chocolatelovinggran Tue 15-Aug-23 18:41:00

So sorry to hear this grandtante. I can only endorse what others have said about taking care of yourself as you nurture your loved man. Ask for help in practical matters if it relieves you of any burdens- keep your energy for yourself and your DH and let others shop and do laundry for you ( unless that would be comforting to do!) Sending you my best wishes.

ixion Tue 15-Aug-23 18:55:12

Yours is a path I haven't trod Grandtante but I offer you my deepest sympathy, in the knowledge that many here will be able to offer support and advice.
In my prayers.

kittylester Tue 15-Aug-23 19:13:29

On our Carer's courses, GT, we invoke the oxygen mask principal- look after yourself so you can help you husband.

If it does turn out to be bad news, ask for as much practical help as you can and spend precious time with your lovely husband.

Kate1949 Tue 15-Aug-23 19:37:44

Although some haven't found MacMillan to be great, when DH was diagnosed and knew what his treatment would be, they arranged for a man who had been through it to phone him and talk him through it step by step. It was helpful and he asked the man questions which he was able to answer.

NfkDumpling Tue 15-Aug-23 20:43:52

The others have already said it all. I can only add a plea that he doesn't leave it too long before telling your nearest and dearest. They will feel very hurt otherwise.

Also, although my DH was quite an introvert, close friends calling round a couple of times a week made him feel loved and helped them too. The support we got from friends has been overwhelming.

You may feel a need to plan and to a certain extent, look forward to what you can do After. I am assured this is a normal coping mechanism.

I cried on my own in secret and he did the same, it helped both of us keep a positive outlook. It was only towards the end that we cried together. This last year though we grew so close. It helped him, but I'm not sure it has me.

You are stronger than you know.

Whiff Tue 15-Aug-23 21:30:22

My husband was diagnosed with a grade 4 malignant melanoma in January 2001 and was given 5 years to live. He didn't want anyone to know apart from me and our 2 children as he didn't want anyone to treat him differently or in his words like a dead man walking. So after the cancer was removed as far as everyone else was concerned he was going to ok.

We lived with the sword of Damocles hanging over us. Then October 2003 it dropped . He's cancer was terminal. He had 6 tumours and given 4 months to 2 years to live.

We had to tell everyone and what he feared happened people treated him differently and he hated it. He was still the same man he always had been just he was dieing.

My darling husband was in agony with pain but it's the way people treated him hurt him more.

He wanted to reach his 47th birthday he died 4 days later . He lived just under the 4 months he was given. But those months he had to stop seeing some people because of the way they treated him.

He was still my husband just he had terminal cancer. And I wish with all my heart we hadn't told anyone until his last week of life he was dieing. That way he could have lived the last few months as the man he had always been. Not dead man walking.

The person who has cancer is the only person who can decide what and who they want to tell. It was my darling mans wish and because of my love for him and our children's love for their dad we kept his secret.

My husband dead for 19.5 years and half of me died with him. I will never be whole again. But because of his love for me and mine for him keeps me going everyday. I was lucky we had 29 years together married 22. I was 16 and he was 18 when we first met. He was and still is the love of my life.

Esmay Tue 15-Aug-23 21:51:28

I'm so sorry to read your distressing news
When the shock wears off - try to make a bucket plan so that you and your husband can have as much fun as possible .
Your husband might not want to tell the family now , but he might do later on .

They might guess as he becomes sicker .

Thinking of you ...

Oopsadaisy1 Wed 16-Aug-23 08:21:29

I’m so sorry to hear your news.
My sister in law wouldn’t be able to cope without the support of their children and Grandchildren, her husband had a scan yesterday to see if they have bought more time with the Chemo that he is having.
So far he is still able to go down into his shed and make toys and other Christmas presents for them as he always does, but he is getting progressively slower.
They didn’t tell anyone until they had the full diagnosis and treatment plan from the hospital.
She certainly wouldn’t be able to cope if it was kept a secret.

Foxygloves Wed 16-Aug-23 10:40:05

Much sympathy Grandtante - I can offer little “advice” just sated experience.We knew many years ago that DH would not as he said “Make old bones” but somehow crossed each bridge as we came to it .
Smiling though your heart is breaking is not compulsory - be honest with yourself, with him and with your family. Sometimes it is too much to ask to be strong all the time , other times you will find the strength you need. I tended to be good in a crisis (and we had many of those) then collapsed in a heap afterwards. But I had to put one foot in front of the other -you will, too.
You are in shock right now, as you say, by Friday the questions may be “Right, so what are we/you going to do about this”
You say the tumour is “ probably malignant” so try not to panic but wait until you can talk to the professionals.
Take a notebook to jot down anything you are afraid you might miss or misremember, and in which you can write any questions you will have.
My DH died nearly 6 years ago after 20 years of chronic illness, a transplant, open heart surgery and strokes- we used to joke about his “9 lives” - but never, ever went down the “how long” road.
Once the shock has lessened I hope you and he can still find joy and make the most of your time together- it’s not the length of a life that matters, it’s the quality.
Feel free to PM me -and bon courage

Foxygloves Wed 16-Aug-23 10:41:23

Sorry “shared experience”

henetha Wed 16-Aug-23 10:41:26

I'm so sad for you, GT65. Beastly cancer is truly horrible.
But there are many cases of people thinking it was terminal and then living beyond the prognosis. And treatment is improving all the time. So I hope this proves to be the case for your husband. Meanwhile, take care of yourself as well as him.
Sending you warm wishes. flowers

Siope Wed 16-Aug-23 10:53:29

I am sorry to hear this.

On this point

He quite understandably has managed to understand the doctor's words much more favourably than I did

my husband’s consultant records all the meetings, including our questions and his replies, and we are given the recording to listen to later if we wish. The consultant does this for all his terminal/life-limited patients, because he recognises people process (or even hear) information differently when they are stressed. We have found it useful for avoidance (we can listen later), planning (what did he say about next step options?), checking something we’ve missed/disagree about, and more.

More generally, after living with this for several years (my husband has lived way past the span of his original prognosis), we know there is no single right way of coping. We don’t even have the same way as each other (I tell my family and friends lots, he tells his nothing), so are in no position to give much advice to you; all I would say is respect each others choices, which for us means I don’t push him to tell people, he doesn’t stop me telling my own circle - but I make sure they don’t ask him about his health too often, and he’s oblivious (or pretends to be) about all the small things they do when things aren’t going well.

maddyone Wed 16-Aug-23 10:54:41

I’m so sorry to hear this. flowers

Siope Wed 16-Aug-23 10:58:01

Meant to say: if you both thought it would be helpful, you could record medical meetings, even just in your phone. .

vintage1950 Wed 16-Aug-23 11:03:20

flowers for Grandtante and all the others on this thread who have been bereaved.

Cabbie21 Wed 16-Aug-23 11:30:55

I have just recalled that my cousin, who lived and worked abroad and died of breast cancer in her 40 ies, did not tell her parents. They were devastated when the first they heard was that she had died, far more upsetting than if they had heard the diagnosis first. My cousin did write and tell my mother, but wrote in capitals, Do Not Tell My Parents. My mum respected her wishes, but she found it such a burden. Nobody felt it was the right thing that she hadn’t told them. So sad.

JdotJ Wed 16-Aug-23 11:37:53

Sorry to hear this. I don't have any advice unfortunately but hope a more bearable outcome for you both after the biopsy results on Friday.

VioletSky Wed 16-Aug-23 11:43:07

I am so sorry to hear this. I think it is really important for people to fight, and not give up and a positive mental attitude will help.

At some point he won't be able to hide what is happening but, I think you should let him for now, let him enjoy life without others treating him differently. Let him enjoy the people he cares about with less worry on their minds.

Have a good friend for support, get some counselling to help you process

This is his illness and he has to fight his way, you can do this together, find every bit of joy and happiness in life you can and I hope he beats this

kittylester Wed 16-Aug-23 12:00:10

Good post Foxy.