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A lonely frightening time.

(91 Posts)
Calpurnia Fri 13-Sep-19 00:23:05

I am looking after my husband following a cancer diagnosis this time last year.

Very (very) thankfully he is well and “stable” at the moment and I am so relieved and grateful for this. However I am finding it very hard at times to always appear to be upbeat, positive and coping with a truly sad and frightening situation on my own.

I am sure family and friends think I am coping as a I never tell them now how I really feel. My husband looks well and is completely in denial about his/our situation- and I feel everyone else is too.

I am told by everyone, including medical people that I need to live one day at a time.......”keep making memories” “enjoy every day .......”until the time comes” ........

Our adult children/friends tell me not to worry, dad is (looks) so well - what am I worried about - we all have to die sometime..... and how I could be run over by a bus tomorrow..... just don’t worry about it.

I know people mean well and no doubt they are worried too and it is their was of helping me but it is a lonely and frightening place to be when you always have to be the strong capable stoic one - especially when I very often feel exhausted and all alone. I can’t tell anyone how frightened I am at times. When I have tried to tell people I am just told not to worry, so now I don’t feel can share my thoughts for fear of appearing weak and unable to cope.

MissAdventure Fri 13-Sep-19 00:29:39

Oh you poor soul.
I know exactly how you feel - its like an elaborate game of 'lets pretend' sometimes isn't it? Exhausting!

People always seem to cling onto the fact that someone looks well, too. Maybe just me, but I sometimes felt people were disbelieving, thinking I was making a fuss, or exaggerating.

Framilode Fri 13-Sep-19 00:33:04

This is so hard for you. People often don't want to face up to things and so brush it under the carpet and hope everything will be OK. You need someone to unload to, have you a good friend who could help? It might be worth having a word with your GP to see if there is any help there. I also believe Macmillan is very good.

I do hope you can find some help.

crazyH Fri 13-Sep-19 00:37:57

Calpurnia, both you and your husband are brave people. So glad that his cancer is 'stable'. It's such a frightening time for you all.
BUT , life and death are not in our hands. Don't spoil today by worrying about tomorrow. Easy to say, hard to do. I am also like you - a worrier. You are looking after your husband and Ofcourse you're tired.
When you feel you want to offload, come here. There are lots of lovely people, some of who may be going through the same thing as you and will offer you much more empathy and advice than I can. Be strong flowers

MissAdventure Fri 13-Sep-19 00:39:06

You can always come and chat on here, too.

Serious or silly, or ask for help if you're feeling low; there are some incredibly kind people, and they will support you.

Fiachna50 Fri 13-Sep-19 00:40:47

I would contact Macmillan and see if they could offer you any support. Thinking of you and your husband.

Doodledog Fri 13-Sep-19 00:52:03

You poor soul. I hope your husband continues to be stable for many years.

I understand your frustration. You are suffering too, and it must be very difficult to keep on a brave face when you want to offload. I think that some people find it impossible to sympathise without using platitudes.

I hate it too. ‘I’m sure everything will be fine.’ ‘You’ll have to hope for the best.’ ‘Wait and see what happens.’ Aarrgghh! But I don’t think they mean to be uncaring - it’s just too much for some people to deal with.

Could you ask your doctor, or your husband’s oncologist, if there is a support group that you could attend? There might be people there who will become friends, and who will understand from experience how you feel.

Calpurnia Fri 13-Sep-19 00:56:41

Thank you so much to the kind GN’s who have replied. I am very grateful for your kind thoughts.

MissAdventure you said exactly how I feel - that people think I am making a fuss or exaggerating - when I am absolutely not. I feel I am the only one who knows what is going on.

I knew Gransnetters would understand - thank you.

Amagran Fri 13-Sep-19 01:03:40

My sympathies to you, Calpurnia. flowers I could have written your post myself two or three months ago when my OH developed one serious complication after another following cancer surgery. The relentless having to be strong and upbeat for him and the rest of the family for month after worrying month was very very draining. I found support from friends and family kept me going and I know that you will find tremendous support from the lovely people on Gransnet whenever you need it. Thinking of you.

BradfordLass72 Fri 13-Sep-19 03:13:18

Does the Cancer Society in the UK run support groups?

Quite often there are support groups for specific cancers, such as the Prostate Cancer support group and so on.
Google should be able to help.

I think you need to find a place where you can talk absolutely honestly, rant and rave if you wish, and perhaps receive advice and help.

Family and friends are doubtless reluctan to 'hear it like it is' because they are scared too and have no idea what to do or say when you open your heart.

So you really do need to talk all this over with a person, or people who will take you seriously and understand what you're going through.

MawB Fri 13-Sep-19 05:34:04

I feel for you Calpurnia and can bring few words of comfort except hang on in there, rant on GN or wherever you feel easiest, (but it is easiest with those who do not know yourDH personally) . Look for support groups though, - there is often one at your local hospice , specifically for family or main carers and of course there may be a local carers’ organisation in your area too.
What you don’t need are the platitudes you are hearing which arise because others are as frightened as you but unable to express it.
It would help if your close family could move beyond this and face the truth with you but you may also be underplaying things as it is often a mum thing to protect our children.
It is a hard and lonely place so please please be as free as you wish here on GN
I gained much support from my “online support group”.
And finally, do you and your DH talk about things? I look back and realise I was so determined to be strong that my head was firmly in the sand at times and I refused to cross any bridge until I came to it.
I wish I had confided my fears and shared them with DH sometimes instead of my way which was to put one foot in front of the other. We are all different and hindsight is a wonderful thing.

loopyloo Fri 13-Sep-19 06:17:58

You say your OH has cancer. Is he having active treatment or is treatment planned? Or are we past that stage? Just having that diagnosis is not an automatic death sentence. And there are many different types .
It is so difficult to strong always and you need to be able to talk to someone.
Macmillan are very good and may have an office at your local hospital where you can walk in and chat to them.
But always remember Gns are here to listen.

Calpurnia Fri 13-Sep-19 07:07:04

Thank you all for your kind replies. Unfortunately the cancer has spread. My husband's very kind and caring Consultant said no treatment could be offered and “when the time comes” his situation will be reassessed.

For now he appears well and mercifully pain free. I feel like I am expecting an unexploded bomb to go off sometime soon and this frightens me.

I have spoken to very kind Macmillan staff who all assure me that they will be there for us both (eventually). They too have said “one day at a time" and to take each day as it comes - which I wholeheartedly do.

I pretend too that nothing is wrong and everything is going to be ok. My husband is dealing with it by not dealing with it so one year on from surgery we have not spoken about his condition. He is making plans for the next five years so I go along with it too. This too makes me feel so alone.

What a wonderful support it is to have the collective kindness and wisdom of you all, especially from those who have been through similar circumstances.

Bordersgirl57 Fri 13-Sep-19 07:24:34

Message withdrawn at poster's request.

tanith Fri 13-Sep-19 07:26:44

It’s the hardest thing in the world to keep going in such difficult circumstances especially when everyone else seems to be moving forward when you feel like you are in a bubble of terror and standing still while everything whirls past you.

It’s one year next week that my lovely DH died from cancer here at home with me and I felt as you do as he was in denial throughout his illness. You will cope with help, have you even discussed practicalities for when he does deteriorate?

I could not of coped if it were not for the Marie Curie nurses support so do use anything that is offered.

Feel free to PM me if you would like to. I wish you well flowers

BlueSapphire Fri 13-Sep-19 07:27:45

Feeling for you Calpurnia. I too kept positive as I did not want DS and DD to worry about their dad, and DH did not want to talk about it and was very positive as well, and had every faith in his doctors. He would just say that there was nothing we could do to change things, and no point in worrying until the inevitable happened. In that way we kept going and made the most of every day, which worked for us. Sorry I don't know what other advice to offer, only you and your DH can work out what is best for you.

cornergran Fri 13-Sep-19 07:30:07

The not knowing can be so hard calpurnia. Having watched close friends go through the same thing I agree, a support group can make all the difference. I recall one saying the gap between the face she showed to the world and what was going on inside was getting so big she was afraid she would fall in two. She was able to talk honestly to some friends which made a huge difference. Your husband may not want to approach Macmillan or your local hospice but do check out the carer and family support they offer. It’s not giving in or being negative but a way of helping you go forward with him. As other have said there will always be someone her to listen, sometimes easier to ‘talk’ to people in an anonymous way. Sending you a virtual hug.

Grammaretto Fri 13-Sep-19 07:40:33

We are in almost the same boat Calpurnia
DH is being treated though which keeps the hope alive. But like you we are in denial.
When DH was diagnosed 2016 . I said I would give up my activities and devote myself to his care. He said "why? I'm not going to give up anything as long as I can"
So we just take each day now. I feel sorry for myself often.
I would say try to do things that make you happy. Avoid people who don't.
Some find the Maggie's centres a great sanctity. Is there one near you?.
I am also on a support group on facebook.
Having to answer when people ask after him is hard isn't it. I know they mean well but while he looks well they assume he's recovering.
All the very best to you from a fellow sufferer.

morethan2 Fri 13-Sep-19 08:01:26

Your coping with such an awful situation wonderfully. Your feeling of waiting for an unexploded bomb really resonates with me because my son is on the same awful journey waiting for the bomb to explode. Most of the time his wife, him and the whole family cope by pretending nothing is wrong. How else can any of us expect to live day to day if we don’t. I sometimes think we pretend because to face the awful inevitable we would just completely break down so we all just pretend and plan for future events that we know won’t happened. After three plus years I haven’t found a better way.
Like you my son occasionally feels overwhelmed and he comes to us and really let’s rip. His anger, his fear, his terrible awful sadness just pour out of him. I know that really really helps him. I hope that you can find someone to confide in perhaps your GP or contact McMillan and ask for some counselling for you. My admiration for your strength in this harrowing situation is boundless, what a wonderful loving brave wife you are. I wish you the strength to continue to cope on this horrible journey. I’ll keep you both in my thoughts.

Auntieflo Fri 13-Sep-19 08:19:54

Calpurnia, I have nothing really to add to the wonderful posts that have been made already.
I just wanted to say that you are being very brave and in coming here and opening up, you have done the right thing.
There are many who can give their support, and that is a blessing.
We have had a not very good year, but I do know that talking about things is such a help.
As others have mentioned, do come back here to let off steam. Just the fact of writing it all down, also helps.
Take care sounds trite, but it is meant with loving thoughts.
{{{hugs}}} to you.

Calpurnia Fri 13-Sep-19 09:29:29

I am very truly overwhelmed by all your kindness. It has really helped me more than anything else.

Cornergran - I feel exactly as your friend describes about public and private faces. When we are out and about - I make sure we do something nice every day - I look at people and wonder that their lives are going on and mine has stood still.

I know this is irrational but at times I feel I am losing my grip. I have always been a very busy, capable, can do person so I suppose family and friends see me like this now - and perhaps feel I am coping with it all. It is the largest elephant in the room.

I do not want to let my husband down and honestly try to care for him the best I can. I have started taking lots of pictures of him, even if we are out and stop for a coffee. I always make sure I take lots of pictures when we are together as a family.

I went to my lovely GP about six months ago. She told me I had “Anticipatory Grief” and nothing would make it easier. I can and do cope quite well but as you all know it is never easy.

Thank you all again - you have certainly made my day a little easier.

harrigran Fri 13-Sep-19 09:34:54

I understand how you feel, I had cancer and DH has been diagnosed with it too. The family do not know about DH's illness and we deal with it on our own.
We live our lives the best we can and try not to dwell on the what ifs.

Urmstongran Fri 13-Sep-19 09:39:14

Oh Calpurnia you poor lady. My heart goes out to you. Inside you must be anxious and churned up, dreading what the future holds.

Death is something we hate to contemplate. It’s either sudden, a shock, totally unexpected (a heart attack, a tragic accident) or it’s the way you are watching - constantly ‘on the alert’ for signs of worsening health (you will be watching him like a hawk I expect) dreading what is to come.

There is no good way. Very few of us just close our eyes and don’t wake up.

The sudden way is, albeit a few seconds, unknown to the deceased but family are shocked to their core. Acceptance takes a while as our minds have to calibrate the awfulness of what just happened.

The other way is heart rending. Every day, waking up it’s the first thought that slams into you.

Others have given such wonderful advice for coping.

Post on here brave lady when you need some kindness and a virtual hug. We will be here any time you need us. x

Fiachna50 Fri 13-Sep-19 09:41:12

Calpurnia, you need to look after yourself too or you cannot look after your husband. I imagine the fact he is not talking about it will be that he sees his role perhaps as trying to protect you? I don't know you so rather guessing here. If Macmillan or any other charity has counselling or drop-in places for carers do please go. I know Macmillan puts leaflets in our local library. Yes, it is a lonely place but I do agree with the advice of taking the situation one day at a time. You still need to get out on your own on the odd occasion too. Whether it be going to a support group, a lunch with a friend or a browse in the shops.I can see there are alot of good people on this thread with good advice. Please don't be afraid and dont feel you are alone.

Luckygirl Fri 13-Sep-19 09:51:16

Calpurnia - I am in a broadly similar situation, but my OH is in the terminal stages of Parkinsons Disease - immobile and needing vast amounts of care.

I do understand the emotional roller-coaster that goes with this sort of situation - one bit of me wants him to stay alive, and the other wants this miserable life for us both to come to an end.

I will tell you how I deal with it: I make no attempt to hide how I am feeling or how hard it is. Friends and family are a shoulder to cry on and do no not pretend that all is well. I am wholly up front with how I am feeling and trust them to react sensibly and sensitively to this - which thankfully they do. My DDs are quite clear that they do not want a constant brave face, and that they too are suffering and want to share this with me - so we can prop each other up.

The other side of that is that it is important to bring the sadness to an end - for example, I go to a sewing group, and when I arrive they ask how things are and I sock it to them (good or bad) and they say all the right things; but then I always say "Right, that's enough of that!", as all their news and signal that we need to move on and get on and sew!

It is the same with my children - they hear how bad things are, then pick up my need to move on to another subject.

I will be honest with you - I think you are adding another burden to your life by trying to put up a pretence of coping - that is such blooming hard work! People cannot help you through this time unless they know what the problems are. Let me give you an example - I was talking to a friend about my need for some respite and when she heard I was looking at nursing homes to see what might be suitable, she realised that it was going to be emotional for me and offered to come with me. I really appreciated that and it was a huge help. If I had kept my feelings to myself she would never have been able to make that kind offer.

I was told that my OH was dying about 2 years ago and I did a lot of adjusting to that harsh reality; only to find he has not died - he is still with us. I cannot tell you the mixed emotions that this brings - it is a minefield in my head! But it is a shared minefield and that helps me to stay afloat.

flowers - these are for you. Please pm any time.