A lonely frightening time.

LucyM
A beautiful heartfelt post.

You have my sincere sympathy. I have been in the same boat for a couple of years although it seems my OH is now stable and improving. Don't try to be too brave and don't beat yourself up if you don't always deal with things the way you think you should. You are human. I don't really have anyone to talk to on a regular basis but vent freely when I get the chance to meet up with close friends. I am trying to squeeze something positive out of this situation by starting a petition to reduce the waste of NHS funds. The link is below if anyone is interested. I wish you all the best. You are stronger than you know.
chng.it/6pRxqwHyZK

Calpurnia I am not in your situation but did not want to ignore your post.
Feel free to come on here and vent.
I have recently been diagnosed with cancer and found that my DC reacted differently. Hopefully mine is not yet terminal but I am finding that the longer it goes on the more my DC are accepting it. I do hope your DC come round and enable you to talk to them. They are too processing at the moment and fearing the worst. If they text you again asking how it is going I would be tempted to say - not so good at the moment, would be good to talk to you. If they call tell them how much better you feel at the end of the chat. They need to feel they are helping.

I'm so sorry that you are living in this situation Calpurnia. It must be a dreadful strain on you.
My situation was and is very different to yours so I won't go in to it. However, through it I did discover the online Sue Ryder support and forums. They appear to be discussing topics that you may find relevant. Sorry if someone else has already suggested this.
Hope you find some support and comfort.

Dear Calpurnia I know a bit about what you are going through because my mother was diagnosed with terminal cancer and we were told at diagnosis that nothing could be done. I collapsed from the shock that day, I literally folded in half and fell to the floor, it was like being punched. I then had to pick myself up and stand with my siblings to support my Mum, the hardest thing I have ever done. She swung from acceptance to complete denial and we had near on another two years with her.

Looking back, it was a very special time and I am grateful for it, as hard as it was. When she was in denial, we just went along with it, e.g. "planning" a holiday a week before she died. Then at other times, she would talk to us about when she would no longer be with us and we could say our goodbyes.

I don't know whether you are a reader - I find reading therapeutic. I've just read I Found My Tribe by Ruth Fitzmaurice, a young mother of 5 children whose husband is diagnosed with MND. It is the most joyous, uplifting book I have read in a long time, a chronicle of how she dealt with his impending demise in a life-affirming way. Google it, it is a fantastic book.

xx

I am registered with the Carers Centre and they have been very helpful. We had a visit from a most lovely caring Palliative Nurse from our local Hospice. This was as a result from an appointment with our GP when my husband told her his cancer had been removed.

She was very supportive and left me with information and important telephone numbers “for when the time comes”.

I find it hard to imagine the future. My DH is so well right now, although he does get tired more easily now. I keep thinking (hoping) we will “get away with it” and we will carry on like this for years,

Like another poster said on the days when he is not so good, isn’t very hungry - all minor comments that we all make from time to time my stomach lurches and I think...”is this it?” I am constantly on the alert for any change in symptoms and this is both worrying and tiring.

Reading this back sounds exaggerated and irrational but this is how dealing with this awful situation has affected me. I can’t share these feelings to anyone as I feel I must always be in control of everything to keep my husband safe.

I haven’t heard from anyone in our family this week. It would be lovely to get a phone call to see how we are. I do get an odd quick text message “hope all is well” but it is not possible to say how things are in a few cold text words. When I have attempted to say how I feel I am simply told to “don’t worry”. I wonder if the time will ever come when my husband and I can talk openly about his/our future.

No one has given us a timescale for the progression of his untreated cancer. The Consultant did say that the results from his last scan “did not worry her yet”. I realise it is impossible to predict the time we have left. Realistically it is limited. I am constantly being told “We are all terminal - you are too, stop worrying - you could die tomorrow”. (not helpful!)

Reading all your wise responses has been so very uplifting and has given me encouragement. Thank you all and very kind wishes to everyone who has been through and going through now this difficult time.

Talk to Macmillan or your local hospice (if there is one) as they will have trained people who can help

Calpurnia, I dont know your friends but what a thing to say. You are facing losing your life partner. I am assuming (perhaps wrongly) that they still have theirs. Anyway, if there are groups you have had to leave, that is a shame but you do need time to yourself. Even if, as another poster said it is just a coffee outside. A change is as good as a rest. I would still approach Macmillan or a cancer charity of some sort and get as much support as you can. If you get the offer of help, take it. No matter how big or small. Eventually Calpurnia the situation will change , but it will mean adjustment to a different kind of life. I am sure everything you are going through now will give you the strength when that time comes. You are not alone. It is an awful time for you, but you are stronger than you think. I dont know if you are religious or not, but one thing I have found helpful to me is The Serenity Prayer. You could google this if you don't know it. Maybe some would think its a bit daft me asking you to look for this, but it has helped me. The other is a prayer called Footsteps. Will be thinking about you and remember, you are never alone and you will be ok.

I am planning to go to Cornwall with my family for 5 days next month. I have not yet told my OH this and I know I will be in big trouble! But I have to be realistic and recognise that I do need a break from the constant demands - worrying endlessly about care costs, listening to his constant anxious/paranoid ideas, trying to calm him down, wiping his bum - and all the rest! I need to just have a few days when all this negativity is wiped away.

Yes - I do feel guilty, as I know he will not like this - but I have to grab at chances to have some normality in my life in order to stay even passingly sane. I cannot help him if I am worn out - and recently I have found myself getting slightly irritated with him at times - not great, but I am only human.

Those of us who have a partner who is ill do need to salvage moments of peace and pleasure from the general run of things. So do please put some priority on yourself as well as him - seek out moments to enjoy - it is alright to continue to find things to enjoy - please look after yourself too.

Calpurnia I realise this may not be needed yet for you but during his last weeks when I could no longer manage on my own the local palliative care team arranged for two carers to come to help and they told me to just go out for a walk while they stayed/helped/chatted to DH. I used to walk to a local McDonalds grab a cappachino and just sit for half an hour watching the comings and goings. It was only a simple thing but it helped me face the day.

Anna yes I would love to do this but I feel guilty for leaving my husband on his own (while I go out on a “jolly”). I was offered six sessions of counselling through our local Carer’s Centre. Each time I had to lie and tell my husband I was going to the Library. As he is in complete denial it would have wondered why I needed counselling.

Friends have actually told me not to worry as a I will have plenty of time to enjoy myself and get out when the time comes (!)

I have always been independent and before my husband’s diagnosis. I would often take myself off for the day visiting exhibitions, art galleries and museums. I used to really enjoy stopping for a coffee as someone else had made it. I do find being so restricted now particularly hard. I was involved in volunteering and a ramblers groups both of which I had to give up.

It’s very hard when that person is in denial and others don’t see it from your perspective. Can you get away by yourself at all? Even for a day or two.

My DH has early dementia, but recently showing signs of getting worse. He is in denial too and family, not being there 24/7 don’t see the worst of it.

I got away for 24 hours recently (took train to meet up with friends and stayed overnight). Just the change of environment, no worries, talking to a different set of people, etc. has helped recharge my batteries.

Best wishes to you xx

I am overwhelmed by everyone’s kindness and support. Reading all of the replies (again and again) has helped me tremendously.

Apart from the awful mentally draining thoughts and worries I have developed physical changes too. I have always been a very strong capable person and I know that even my closest friends would be astonished to think I wasn’t coping or needed to share my feelings on GN. I am the one who people turn to for suggestions and ideas.

I now find myself saying “watch what you are doing” such as when I am driving, even down to ordering drinks or food when I take my husband out. At times my nerves are so frayed I find the simplest tasks difficult and my usually sharp capable memory is in a fog.

I know it would help if I could talk to my family about the way I feel but this is not possible. No one asks me how I am or how I am coping. On the rare occasion in the past that I tried to tell my sons and their wives how I feel my thoughts were sadly instantly dismissed.

I know they are worried they love their father and now accept this is how they are dealing with their concerns.

I was told “we all have to die sometime”, “you could die before him” “don’t worry”. Etc etc...... This has stopped me sharing my thoughts as I do not want to appear needy or unable to cope.

Thank heavens for the depth of wisdom and caring I have found here on GN. Knowing you understand has helped me more than words can say and I am taking your ideas and suggestions on board. I am sorry so many of you are going through difficult times through various health issues and send a big hug to you all.

Sorry but not sure if you are meaning your husband has been given a prognosis of a very limited time. If that is the case you need to speak with someone just to vent your feelings. If you have a Maggies Centre near you or even a Hospice they usually provide support for family members and can help you with your anxiety about the situation you are in. If on the other hand your husband gas an 'open ended' prognosis again you need to speak with someone. Again the two kinds of organisations mentioned will help. Also McMillan Nurses have chat and phone lines. If I can say my husband had one kind of cancer 21 years ago (surgery, chemo) then another type 13 years ago again surgery radiotherapy. All was well until two years ago when the second cancer reared its ugly head again. Treatment hasn't worked so far and now waiting on scan to see what options may be. My 47 year old daughter died of breast cancer in April this year. So what I am saying is there are people out there who will listen and understand what you are feeling. Don't dwell on the negatives as let's be honest there is little we can do to change them. I learned this with my daughter's death. You have family, listen to them. They are looking at the positives and there will be many of them, even in your situation.

Your GP is correct about the anticipatory grief. When this is being experienced, often no-one in the family is being their own 'authentic self'. This adds to the strain with everyone playing the role that they think others expect of them. If you could find the strength when one of your family asks how you are to say "We need to talk about that", you will have opened the door for everyone eventually to say that they may be struggling with the situation and to admit that they are afraid desperate and unhappy. It gives everyone including you and your husband permission to say how you are really feeling and for others to say they understand and are there for you. It is exhausting for all of you to pretend all the time.

Dear Calpurina, I haven't been through exactly what your going though but my husband died unexpectedly on christmas eve 2017. We were about to attend his daughter's funeral but he felt unwell and ended up in hospital. To cut a long story short he had a brain stem infarction leaving him with locked in syndrome. He could only move his eyes but knew everything that was going on around him. He died 5 days later. It took me 4 hours to drive home and the courage to walk back into my house. I tell you this, not for sympathy but because since then I have sold my property and moved into a tiny flat. All this out of my comfort zone and I am now experiencing grief. I have been living on adrenaline but now it's real. I know what you're going through, all I can think about at the moment is death. You are strong, stronger that you know, I do hope you find some peace in all the turmoil. Sending you love and best wishes xx flowers

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.

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.

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.

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.

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...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 ?

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.

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

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.