A lonely frightening time.

In the same boat. DH given 2 yrs. most treatment not poss because he has a transplanted kidney (mine). He goes from reasonable days to bad days and I feel so helpless. He is also very used to knowing what I am doing always so getting to talk to someone is quite difficult. It is tiring trying to keep his spirits up as well as my own and all I do is eat! So he is getting thinner and I am getting fatter. Knowing this is stupid doesn’t help!
At least I know that we have been lucky to have so many years
together. But I am worried I won’t cope both with the time it gets really bad and after.

I am in this situation too. DH given 2 yrs and goes from reasonable days to poor days making coping v.difficult. Feeling so helpless and trying to pick him up mentally is so tiring. He is losing weight and I am gaining because eating has become a comfort. Knowing this is a stupid thing to do doesn’t help. Reading how you all feel has helped me realise I am not alone. Thank you

I do feel for you. It's not the same thing at all, but some years ago my husband had a heart attack and was rushed into hospital. It was a really worrying time and I felt I had to be strong for him and for your daughter, It was only when a friend - who was little more than an acquaintance really - took me to one side and asked how I was that I felt able to tell someone exactly how I felt, and it helped so much.
I agree with others, if you can find a support group, or even one other person in a similar position, it could be a huge help.
Really glad your husband is stable, and I wish for many happy years ahead for you both.

Why not look around in your area for a Maggie Centre, or local charity which helps cancer patients and their carers to cope with the fear and uncertainty. For example, in Sheffield we have the Cavendish Cancer Care Centre. This is the sort of place you might need.
cavcare.org.uk/

Calpurnia, I understand how difficult it is when friends and family keep asking and you smile and say everything is going as well as can be expected. I do the same. My dh has a brain tumour and is awaiting an operation. He has been told he could die in theatre or have brain damage after surgery or total blindness, but will be totally blind in under 5 years with no operation. He also has cortisol deficiency and blood cancer which may or may not be caused by tumour. I try hard to stay strong because he is strong and continues to work even when he is feeling really ill. Sometimes it gets too much for me and I pretend to go shopping and then drive to a car park where there are never any people and i sit in car and cry. Then I pull myself together and go and get a few bits of shopping before going home. The thought he could die terrifies me. I know his neurosurgeon is good and he has an 80% chance of getting through alive but still I worry.

Calpurnia, we are in a very similar position. DH diagnosed two years ago with bowel cancer, now has a stoma, unfortunately it has now gone to liver and lungs. He is now receiving palliative care. I could have written your post almost word for word. It is a very lonely place to be in, Friends have practically disappeared, they just could not cope with our situation. I have been told to take care of myself, take one day at a time etc, but it is so hard. We have joined a local Cancer Care support group which offers counselling, different therapies,massage etc and have found our sessions there really helps. Just being able to talk to people who really do understand. If you have something similar in your area I would recommend it.

Otherwise, we just stumble from day to day, take the good with the bad and make the most of what time we have left together. He is fantastic, very upbeat and still has his sense of humour but I get bad days which I try to hide from him. Being strong all the time is hard, and it’s certainly not weak if you crumble from time to time. Sending my very best wishes.

Dear Calpurnia. I know where you’re at. My husband and I went through this for 4 years until he died last summer. In addition to all the good advice you’ve already received, I would just add that the last few months together although terrible in many ways were also the closest, most tender and beautiful, precious times. I wish you courage and resilience for the road ahead. There’s no point saying it will be easy but you will find a huge depth of love and meaning in meeting the challenges ahead with grace and dignity. Illness and death are different phases of our marriages, the hardest of all, but while you still have each other there is still time for,joy. Embrace it if you can.

Is there a specialist nurse you could speak to at the hospital your husband attends? I found these very helpful when my sister was ill- and also helpful in signposting me to other resources.
I have also found the Samaritans excellent - the people I have spoken to appear to have counselling training and really helped me to clarify my thoughts, stop catastrophic thinking and consequently enjoy each day more.
I hope this is helpful, and I send you heartfelt hugs.

@Calpurnia no matter what conditions a loved one has, it has often hard to connect with fellow carers purely as a person who is caring.

You may find the online forum at carers UK a helpful resource - a space where you can focus on your own needs & experiences without the definition of your loved ones’s condition or the possible feelings of disloyalty or guilt as you have a rant & rail with your peers who get ‘it’.

www.carersuk.org/forum

The overall Carers UK website has loads of useful information & links.

Dying Matters is also a helpful organisation.
www.dyingmatters.org/page/dying-matters-podcast

Why not ring Macmillan.
They are available from 8am to 8pm and have listeners who will let you talk about your worries, whether you make sense or just ramble on, and medical staff who can advise, answer your questions and talk about treatments, prognosis, procedures and many other aspects of living with or caring for someone who has had a cancer diagnosis.
I hope you get the support you need.
Best wishes to you both ☘???

Carers UK video

Pertinent video - please watch.
Just a few minutes.
You are not alone...

m.youtube.com/watch?v=gHQ6hQ3SQUM&feature=youtu.be

My husband was diagnosed with kidney cancer 3 years ago. I was devistated, we have been married 41 years. I deal with it in my usual, no nonsense and carry on way. We have had a lovely 3 years. We go out for days, see films and have meals. It's not worth ruining what ever time we have left. Live for the day hun. X

There is an app called Health Unlocked Communities and with the app there are forums for many health conditions so you may speak to people caring for someone or people with the same condition as your husband. I have found so much support and advice sometimes in the middle of the night.

It is so hard to keep being upbeat and to ignore the elephant in the room. The lack of control over your life and not knowing how things will is terrifying. Taking one day at a time isn’t easy is it? Being told not to worry when you already are worried is annoying and anyway how do you not worry?

I wish I could make it better for you I really do. Wishing you well and sending a virtual hug x

I have been in your situation it’s so hard staying strong for your loved ones when you are falling apart inside my son was only 15 at the time..I found confiding in a close friend really helped me as my husband could be really angry at times but he was just totally scared.. A day at a time helped me cope. Macmillan are really helpful to.. Wishing you well.

PS I can tell you the URL if you like to pm me.

I think other people find it unbearable and don’t want to see you upset or hear of how bad it is because they feel they don’t know how to cope....so they behave the way they do. The best support I had in a grave situation was from someone who said ‘some things can’t be resolved’ and just sat with me, giving me the space to say exactly how I felt. I would look around for the right sort of support. No need to keep putting a brave face on all the time. Contact all the organisations mentioned in the above comments.See also if you can get just a little time for yourself away from the home. Let other people in a little...Perhaps by just saying something like ‘this is difficult for me’...and see if anyone can let that be. If they can’t, don’t spend as much time with them. We are all here for you.

Calpurnia, I hope you find some help from the sources recommended by the grans here.

My old friend died recently of lung cancer, and I read her hospice's website. It contained a full account of the dying process which I saw was completely understood by the hospice . so therefore I felt that she had been really well looked after at this important stage of her life.

Thank you MissAdventure - been feeling bad! x

My heartfelt sympathy. So much good advice already given here, but I would like to add next time a friend comes out with some platitude about how well your husband looks, when he is not within earshot, sit the good lady or gentleman down and explain that you need a friend you can honestly discuss things with and you would like it to be her/him.

It is nice that your husband is stable right now, but he is suffering from an incurable disease. However well he is now, the long time prognosis is not good, unfortunately. You need someone who will listen to you when you need to express your anxiety about the future. Someone who will not tell you that everything in the garden is lovely.

You will unfortunately not stop worrying about how much your husband will go through before he gets to the end. I am not saying he will suffer, hopefully everything will be easy, but you will worry.

You will also worry about how your life will continue when the sad day that finds you alone comes.

If your husband is in denial you cannot discuss matters with him, but please, do check with your bank whether joint accounts are frozen on the death of a spouse - where I live they are, although funeral expenses can be paid from them by the bank.

This may seem cold, it isn't meant so, you need to know how you will be placed, you will be less able to deal with financial issues over and above the emotional side of things later on, if for no other reason than because you will be tired.

I speak from experience, my father knew my mother's and his joint will was out of date, my sister had had a son after that will was drawn up, but my mother was in denial and there was nothing my father could do. As she had always dealt with all financial matters he was lost. I would hate the think something similar would happen to anyone else.

Once you have one person who will allow you to be honest, try to get your adult children to accept that death comes to us all and that their father's time is approaching. If some of them genuinely do not realise this, the shock will be all the greater when they are forced to face the reality.

Keep us posted. We all feel for you. And forgive me, if this comes over as being cynical, it is not meant to be.

I'm so sorry Calpurnia as you must be feeling very sad and lonely. Could you ask your GP for emotional support?

We were helped greatly by the hospice movement - they were worth their weight in gold. A volunteer visited us at home and I also went to carers' meetings and afterwards to those held for the bereaved. Without their help I think we would have had breakdowns.

My ILs, like yours, were also in denial - about as much use as a chocolate teapot. It's not as though they didn't care - they couldn't cope with reality and this felt as though the burden was all ours and we had to put on a happy face for their visits to make them feel better.

It was a very stressful time.

Calpurnia - you are now in the role of carer for an unknown period of time and this has dreadful repercussions on your psyche which only those who have been in this situation can begin to appreciate. As a bereavement counsellor in a hospice I would say to you that you should definitely seek some counselling for yourself. We offer this type of support for relatives during the cancer journey, and fingers crossed that your husband will come through this, there is still the fallout that lands on you. So, you need to see your GP and tell him/her that you need some emotional support and make sure that you get it. People in your orbit simply don't know what to say which is why you are getting a range of suggestions/encouragements. You would be far better going to see a therapist - a stranger who you could talk to openly about your feelings, fears, and loneliness etc.

I can't really add to the wonderful advice you've had here, so I'll just say how very sorry I am. I went through a similar situation with my darling mother, so I know how hard it is to be upbeat all the time, even when things are so grim. I'm thinking of you.

You won't be able to, Jackie, we aren't allowed to edit all by ourselves.
Nobody will mind your error though - we've all done it.

So sorry! Not meant for here. How do I remove it??