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

kittylester

*grandtante*, I think you can see from this thread that you have support here should you need it. Please use gn - and anyone else who needs support is likely to find it here too.

I have indeed and am very grateful indeed to you all for your helpful and very kind support and advice.

I am much afraid I will need your continuing advice and support, but will try not to plague the life out of you all, but only come back when we are out of our depth. Thank you, one and all.

Ikiesgranma

I am the person with incurable cancer. I’m having palliative chemo in an attempt to slow any spread. My husband is in denial which I find quite frustrating. I want to talk about my fears and what the future will look like. I can only say go with your husband’s wishes. I’m sure once he has taken everything in he will open up. It’s a horrible, scary place to know that you are going to die and leave your loved ones behind. I’m having counseling at a hospice which I feel helps me.

This is what I came on to say, but * Ikiesgranma* says it much better. In my work with Marie Curie, a very common complaint from patients was that their family members wouldn’t let them talk about when they are no longer here, and sometimes even saying it upset them because their spouse/ child had ‘never shed a tear’.
Also, when a person is feeling controlled by illness, doctors, hospital etc, it can be good to feel they can still offer help and comfort to your nearest and dearest, so please don’t bottle up your feelings for fear of upsetting them.
My thoughts are with you.

I was in the same position grandtante, DH had metastatic prostate cancer and refused to tell the family and would not let me tell anyone except my friend who was my support and shoulder to cry on.
It was a nightmare during covid and lockdown, appointments cancelled, letters from NHS not arriving.
I had absolutely no help whatsoever, asked about a hospice place and was refused, they had closed it due to the number of staff with covid.
I was expected to do everything with no regard to the fact that I had cancer and had major surgery and vulnerable myself.
When DH relented and told AC they did their best to support us but it took DD a long time to be able to leave Brussels because of travel restrictions.
When DH died DS received a horrible letter from one of his aunts, she said that they were disgusted that we had made no effort to let them know DH was ill. Some people do not want to broadcast their illness and people should respect that.
Just try and live as normal life as you can, do what makes you both happy.

My DH was diagnosed with terminal melanoma in late 2008. We still went on the cruise we had booked but by Christmas 2008 he deteriorated quickly and died on January 18th 2009 and on the last day he was transferred to a local hospice. He died peacefully with most of the family there. I could not have hidden his health from our children. The signs of it were evident. He died quietly at 10pm and my children felt like spare dinners as all I wanted was to be alone. I remember going to the hospice chapel and offering a prayer for his dear soul. He did not have a religious faith but asked for a traditional Anglican funeral. He wanted it to reflect my faith as he knew it would comfort me. I have never stopped grieving his loss so I cannot say that death does not affect our lives. All I can do is to wish you strength to get through life when someone you love is dying. I am glad you told your son. We need to have loved ones who understand what is happening with their parent and to support the one who is going through such a sad time. I can only relate my experience and wish you well GrandTante.

grandtante, I think you can see from this thread that you have support here should you need it. Please use gn - and anyone else who needs support is likely to find it here too.

Ikiesgranma

I suggest you look on Facebook for support groups for your husband's cancer. I think most of them accept carers as well as patients and some have separate carers' groups. They can be enormously helpful, with members with a huge range of experience, and there always seems to be someone somewhere who's awake at 3am when you need to talk.

I am the person with incurable cancer. I’m having palliative chemo in an attempt to slow any spread. My husband is in denial which I find quite frustrating. I want to talk about my fears and what the future will look like. I can only say go with your husband’s wishes. I’m sure once he has taken everything in he will open up. It’s a horrible, scary place to know that you are going to die and leave your loved ones behind. I’m having counseling at a hospice which I feel helps me.

I’m going to peep back on this thread on Friday night grandtante in the hope that the news about your husband’s biopsy is not as devastating as you’re anticipating.
🤞

The period before you know what treatment the clinicians are advising is one of the most difficult. I hope, grandtante that there will be some positive news in this respect.
We went through this 12 years ago, but my DH survived his oesophageal cancer (chemo and operation) for 11 years with an excellent quality of life. He died in a few short weeks from a different cancer at the age of 87.
We relied on the support of friends almost more than our AC who were anxious and inexperienced. But friends our age could provide a cheerful and positive presence during his treatment, such a blessing. Accept any help they offer.
I send you and your husband my very best wishes at this time.

I am so sorry you are facing this. Please find a friend or even a counsellor on line - maybe a group on line - someone or somewhere you can feel and talk about what is happening for you. You do need to look after your self - and then you will be better able to support him whatever the future brings. I hope you can find the support you need and that you will be able to do whatever is needed for your husband as well as yourself, as the weeks go by.

My DH had bowel cancer in 1996, he was 50. Surgery successful. The diagnosed with prostate cancer 2006. Surgery again, but came back 2021, he died 15 months ago.
Your husband needs time to reconcile what may be lying ahead. You say you are waiting on the biopsy results so he may well be hoping to have relatively better news. I had to make myself understand that I nor anyone else could not stop the inevitable when the cancer returned. Yes, I did have a good few cries to myself. My DH did keep family informed on the attempts to slow the disease's progress but we all knew that was all it was, a delay. I did not seek any groups, organisations for support. I felt I would hear only others' experience and not everyones' circumstances are the same. I concentrated on living with my DH, making plans to do things together or with family. My 2 DS were fully involved appreciating what loss feels like my DD, their sister having died only 2 years previously, again due to cancer. I truly believe no one can tell you how it feels; what to do; when confronted with having to face the loss of a loved one. Hopefully your DH will have good news and he will accept your family needs to be included in whatever happens, good or otherwise.

@Shazmo while I agree with you in principle, my personal view is that all the practical admin things while necessary, could probably wait until after Fridays appointment.
There is so much to take in and while I agree absolutely about the necessity, there is a time and a place and that may be different for different people.
I remember being collared in the corridor outside DH’s ward (actually months before he died and he came home at least twice afterwards) by an eager junior doctor who said “I assume you realise the time will come when we run out of options, where do you think X would like to be?”
Fair enough, but I said in no uncertain terms that this was neither the time nor the place for that dialogue.
WHEN it took place, I expected it to be in the Consultant’s office with a cup of NHS tea and probably a box of tissues, but in the meantime could they just please treat his (hospital acquired) pneumonia and we would cross the next bridge when we came to it.
We all react differently, so OP I do not think what you need is advice as such, but support, somewhere to offload and a soft shoulder to cry on whenever you need it.

It is very personal

For some families, it is very difficult to manage other people's feelings when communicating tragic news like this - so it is need to know basis

For others, they need to tell others

I am so sorry for you,*Grandtante*. My DH was diagnosed with stage four cancer in 2021 and died in April last year. The only thing I can say is once you have a confirmed diagnosis and prognosis, don’t keep it from your son, or others closest
to you. It may seem like doing them a kindness but it isn’t. You two cannot manage this on your own. They will want to help and support you, and will need to do this for their sakes as well as yours. Your son will find strengths he never knew he had. Ours did. I don’t know where we - and ultimately I - would have been without the support of our children and their partners.
As for the two of us, we made up our minds to take it one day at a time; to try and find something to make us happy in each day (not easy sometimes but he was always a very positive person) and to do what we enjoyed doing within DH’s capacity to do it, for as long a he could manage it.
If I can offer you a listening ear, please feel free to PM me.

My husband received the news by saying he didn’t want anyone to know and he would prefer to be private and would fight it. I’ve never known anyone so brave as he dealt with everything but he died within a year. I frequently was in tears, but I respected his wishes, of course everyone eventually found out towards the end.I’m the opposite I need all the help I can get .Without him it’s hard but his last words almost to me were enjoy your life do it for me, which I have.

Am so very sorry that your husband is facing this but you are there to stand alongside of him.
I realise that this may sound morbid but you do need to face some practicalities.
1. Is his will up to date
2. Do you know his wishes regatding end of life care? Ie where he would want to die - home, hospital or hospice?
3. Funeral arrangements - songs, hymns, poems. What kind of service. Where he would like his ashes to be put if cremated.
4. Passwords for his accounts - computer, banking, FB (you can have it changed to a memorial account) & any other social media accounts etc.
5. Where any financial accounts are with account numbers/policy numbers etc. Pensions etc.
6. Car ownership & insurance changed into your name. Same for house & contents insurance.

Having seen 2 friends go through a similar situation recently it is better if you are prepared

I agree re positivity. I am a very negative person and always see the worst scenario. Thankfully, DH is the opposite. After his diagnosis and throughout treatment I asked if he was scared. He replied 'No. What's the point of being scared? I may be scared if they tell me I should be but they haven't'. I have told some people this and they have said that they don't believe him. Well I have been married to him for almost 54 years and I know him and I did believe him. He once said he was scared for me if the worst happened.

Very sorry to hear this. You can get support and advice from your local hospice if you have one.

This is a personal view based on our experience with family and close friends as well as my husband’s cancer diagnosis and all that followed
Being positive does help with feelings and coping.
I don’t believe it’s helpful to see a diagnosis as the start of a fight’ with cancer.
It helps if the patient and their wife/husband /partner can reach an approach that helps them both. Not always easy, not always possible but it does make things a little easier
Be gentle with yourselves and each other
Rest, walk, eat well ,do things you enjoy for as long as it’s possible

One thing he almost certainly needs to know is that you will be all right after he’s gone. Prepare yourself for thus, both emotionally and practically. Let him see that you’re going to manage, and that you’re storing up happy memories. Don’t talk to him about your eventual widowhood: he’ll be all too aware of that already. But surely nobody actually wants their surviving partner to just fall apart and never be happy or content again? Don’t ever suggest that you couldn’t live without him.

He needs hope; and you need reality, and possibly a non-judgemental ear to listen to your concerns and allow you to vent. I see you're not in the UK; are there any psychotherapy options available to you locally? A loss support group might be excellent too.
Absolutely rotten thing to happen to you both. I wish things were otherwise.

Sorry to hear your news. I was delivered a bombshell about 6 months ago it wasn’t health related but huge shock. I begged my daughters not to tell the wider family I needed time to process it myself before the questions and offers of advise started so my advise would be to give him time to digest it a few months maybe then speak to him again about sharing it. Do you have that one person you can trust outside the family you can tell and trust not to pass it on just so you have some support.

So Sorry to hear your news. I have two friends going through the same thing with their DH's. Each taking a different way. Go with your husbands wishes but look after yourself and maybe see a GP about some counselling for yourself which is what one of my friends has done.
Live for each day together we are all going to be one partner or the other and you must look after yourself to be able to look after your DH.
Best wishes.

Sorry for the typos in my message, I seem to jumble up my I ‘s and o’s!!!