A lonely frightening time.

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

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.

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

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

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

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

Carers UK video

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 ☘???

@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

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.

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.

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.

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.

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/

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.

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

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 feel for you, Calpurnia. I was widowed in 2010, my late husband having been given a terminal diagnosis two years earlier (treated for four years prior to this). My late husband, perhaps like yours, was someone who did not want to discuss the situation. I genuinely wish I had been brave enough to reach out as you have done. Please do enquire about support and I'm sure you will find it.

I’m glad you can offload on here . Get as much help counselling and support as you can . It’s so hard sometimes being the strong stoic one . Make sure you get some me time . There’s lots of us on here who are carers and understand how hard it is for you xx

It's a tradition that people with sick partners stay strong and upbeat - I think it's supposed to keep the sick person positive. But I don't really believe it. He's probably scared and lonely too, as he sees you being upbeat and feels he has to try and match your mood. Besides I have read recently that it's no longer believed a positive mood influences cancer survival. And at the end of the day you're allowed to express your feelings. You'll probably get more support from the family if you go to pieces occasionally which will ease your burden a bit.

Calpurnia...I couldn’t have expressed that any better than you did...been coping with dd’s renal daily/transplants for almost 30 years and dh various health problems for 17+ years, and eventually you run out of emotional energy. It’s enormously tiring in the end being the strong one unless you are on that situation you don’t really understand,so hugs to you..... but the only way is to do it one day at a time,I’m afraid I’ve learnt that the hard way so more hugs and some flowers ?

I used to be a Marie Curie nurse. Patients were usually relieved to be able to talk about their cancer/fears/hopes away from their partners and children...though sometimes the patient was in denial and it would be the partner who needed to talk about the reality. We are very British about dying...the attitude is it’s not discussed in polite company pervades. My best friend died of a brain tumour, her family didn’t want to discuss it...would say how great she looked (she didn’t) up to the day she died they were fighting the truth that she was dying. We all die, the most important thing we can do is to make sure we tell all the people important to us how we love and value them....make sure we know what kind of funeral we want and make it as good a death as it can be.

Calpurnia, heres a virtual hug ((♥)) there have been times during my hubby's cancer treatment when I've wanted to say to family "hey what about me - I'm going under here & im scared but I darent show it". Then I felt guilty because I had those feelings. We shouldn't because we are only human and not saints. Hubby sailed through his treatment & visits, laughed at my fears etc when I dared to broach the subject. We'd just moved to a new town, new county and boy did I feel alone. Family members are used to me being 'strong' and sometimes it just seemed like no one could or wanted to look beyond my 'coping' face and tbh I felt a bit resentful and then ashamed of myself. He's been lucky, results are good to date but I see the tired him or the appetite gone days and your insides knot up. He goes to a men only group for any man whose life is or has been affected by cancer, run by cancer support. There is a ladies group too meets on different day. Talk about all sorts not just cancer, tea & biccies, access to advice etc. I do hope you can find something similar.

Calpurnia, I was where you are 16 years ago. It was like living in a nightmare. Everyone acted as though things would get better (including my husband - though he probably knew).

His consultants were clear, he was terminally ill. We lived the lie that somehow, miraculously, everything would be alright.

It was 10 months between diagnosis and him leaving me.
In all that time we never faced the inevitable together. We were living a lie, the lie of positivity - that somehow ignoring the prognosis would prevent it happening.

Sometimes I wish I had forced us to look at reality, so that we could talk about our feelings but I took my cue from him - well I thought I was!

I do so hope you find peace. Regardless of how you handle it together (and be assured other people do not matter one bit), in time you will find peace.

My thoughts are with you.

My heart goes out to you. My DH has a blood condition which can lead to Mylenoma. I dread every check up. If the levels of the paraprotein rise it’s a concern. It hangs over me. Currently it’s stable but told last week it can rise rapidly. I try to switch off not easy n find nightime the difficult times when everything goes through your mind. I wish you the very best and think ur incredibly brave. Agree though you should find someone to talk with.

My heart goes out to you. I read the post about a sudden death as opposed to a known death. My friend and I both lost our DHs close together. Mine from a sudden death at 46 with literally no warning and hers from brain cancer. We both thought the others death was better. There is no easy solution. Taking one day at a time sounds so crass but that really is the only way to cope with it. I wish you all the very best.