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

So, so sorry to hear your devastating news, I cannot imagine how you begin to cope with such a situation. My dh was 15 years older than me and developed vascular dementia and a mild form of Parkinson’s late in life. I eventually became his full time career and nursed him fir 12 years. It was very tough going, as anyone who has dealt with any firm if dementia in a lived one will tell you, and I found I lost a little bit of him every day, very gradually as he deteriorated, so I had a lot of time to adjust to what I knew was the inevitable outcome, and I am sure that is why I was able to deal with finally losing him when he had deteriorated to the stage where he had little quality of life left and was on the verge of needing to go into a professional care facility, which he would have hated. He was afraid to leave me as he had this notion I would not cope without him, but I promised him I would be happy with my memories and always, always keep our love alive every day. He was very ill at the end but fighting desperately to stay with us, I told him to stop fighting and to give in if he had had enough of the battle I promised him I would be ok and he simply stopped breathing, there and then! He didn’t often do as I asked him, but that was the one time he did! Of course I miss him terribly and I would have him back to do it all over again in a heartbeat, but I do think I was lucky to have time with him to prepare and for that I am so grateful. I pray you will also find the peace and strength to cope with whatever lies ahead for you xxxx

Thank you all so very much!

I hadn't dared hope for such an amount of help.

There is so much, I cannot possibly replied in detail to you all, but please believe that you have all and everyone of you helped me and given me a lot of very positive ideas to mull over.

xx

Whenever we had a consultation we asked permission to record it on a phone or tablet. 2 people don’t always hear the same words!

My heart goes out to you and all the other grans who are or have in the past dealt with similar situations. We and our DH's all deal with things in different ways. Your DH must still be in shock so let him have time to digest the info and try to deal with things. No need to rush off and tell people just do whatever he wants to do right now, he doesn't need discussions about who should be told. Perhaps he might always want to keep it between the two of you so that people carry on treating him as normal and he doesn't have to deal with their pain and worry as well as his own. That might be more difficult for you but in that case you could always see some sort of counsellor so that you are still able to talk about how you feel. Above all it's about your DH and not you. I know that sounds very cruel but when the very worst happens you will at least be able to know that you did everything he wanted.
My DH passed away just over a year ago and regrets and feelings I should have done more plague me every day. He was ill for so long that it became part of our lives and I should have done so much more to mak his life better and then all of a sudden it was no longer possible. Take care.

I am so sorry. I’m not very good at words of sympathy but I do feel for you.

Everyone is different in coping with this. From my experience I would say

Do some research on the Internet or with an appropriate support agency like a Charity.

Go prepared on Friday with questions and things you want explained. Don’t hesitate to ask even if what you want to know sounds stupid. Doctors sometimes assume we know things that are everyday to them but hitherto unknown to us.

Once you have full information decide who you want to tell. This is difficult. Close family should know about the diagnosis and treatment. When you tell anyone about the prognosis can vary depending on what it is. Although we knew my husband’s condition was incurable we chose to keep that to ourselves because it was not immediate. We wanted our children to be able to continue with their normal lives for two or three years without that pressure.

Some people find the rally round of friends supportive, for others it can be a burden. People will treat you differently. Chose to spend time with those who boost you and ruthlessly drop those who seem to “feed” off your pain.

Maintain as ordinary life as possible, especially the inconsequential little things. I vividly remember the day of his diagnosis of leukaemia, sitting side by side on the hospital bed, watching the tv in his room and sharing a big bag of crisps. It was bizarre but right.

Make sure you have some time to yourself doing something that gives you pleasure. It might seem like dust and ashes as you do it but the pleasure will return and it is vital to your well-being.

There are hard times ahead. I did find it helpful to remind myself that others have been through this so it must be possible for me to do it too.

I hope some of this might be helpful and not too much of my very practical nature coming out💐

Good post Foxy.

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

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.

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.

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

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

I’m so sorry to hear this.

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.

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.

Sorry “shared experience”

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

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.

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 ...

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.

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.

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.

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.

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.

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.