Going out of my mind!

Hi NannaFizz,

I can’t offer advice really but just to say you’re not alone in feeling like you’re living on a knife edge. I feel the same. And I don’t think accepting then situation comes easy to any of us. How can you accept that you’re being robbed nic your loved one far too early?? My hubby is 52 and has stage 4 incurable stomach cancer. We generally cope well but last night got the dreaded scan call, chemo hasn’t worked and they’re stopping that. They are still looking at other options but we’re clear that the success rates were low for his remaining options and he’s on palliative care in any case. I cannot and will not accept defeat until the end and I think my husband feels the same, but right now we’re allowing ourselves a few days to feel miserable. I think that’s the only way to continue.

This is truly a cruel disease xx

Hi NannaFizz , Oh I feel for you. My husband has aggressive prostate cancer. I first came to Macmillan when he had oesophageal cancer and then, as a champ, supported others so I understand not being able to 'unknow' things. I find some days and weeks I'm quite practical and calm, while other times my emotions get the better of me. I do understand your feeling that you're 'ruining' what time you have left. It was that feeling that finally helped me to try and tackle things a different way. I found concentrating on thinking through the practicalities of how I will manage when he's gone, while it was upsetting, helped me to feel more settled and grounded believing that I would be alright. I've also seen friends whose husbands have died from cancer and admired their acceptance and determination to get out and see friends. But I can't pretend that I would be so brave, only that I would try to be, and Covid is another dimension that makes everything so much harder.  As bramblejoo says, allowing yourselves to feel miserable  for a few days can help, then pick up and go on. I hope you find a way that works for you.

Love and hugs,

Hi, I am sorry that you're living with this. My husband was diagnosed with incurable brain cancer Aug 19. He has had surgery, 6 weeks chemoradiation and chemotherapy once a month ever since. Just taking the 11th cycle now so I have some understanding of what you are feeling. I also have some medical knowledge as I worked as radiographer for 27 years and I agree that it isn't always helpful. 

I have no idea though how we can find acceptance of the situation we're in. It's hard for me to accept that my 50 year old husband of 28 years, who's worked hard all of his life, always been kind and giving has to endure this shitty illness. Like you I have an idea of what's to come but I can't allow myself to think too far ahead. We have decided to try our best to only deal with a few days at a time. It's a cliche I know but it can work sometimes, I can't say it works all the time. It's hard to try and make the best of the time we have together sometimes as he feels too awful to do much some days but we do try on the better days. I can't imagine that I'll find much peace of mind anytime soon but I will concentrate on what he needs from me while he needs it. 

I hope you can find some peace of mind but if not try not to be a little easier on yourself if that's possible,  you're doing the best you can for both of you at the minute

Take care x

Hi Bramblejoo, thanks so much for getting back to me.  You’re right of course, how can we accept that the one we love is being taken away?  My hubby is 70 and I know that sounds old but to us it isn’t and he has always been so fit and healthy.  At 52 it’s even more cruel. I am expecting them to stop chemo with my hubby too but there I go again, thinking ahead. Like you we have been coping with the treatment and after effects which take on their own pattern.  He seems stronger than me in many ways. He won’t give up until he has to for sure and practically I’m doing the same, you have to don’t you? 
A cruel disease is exactly right! Take care of you both and keep up that determination! X

Hi LoobyLou49, Thanks for your reply and I’m sorry to hear of your situation too.  And well done for being a Champ as well as going through your own situation. X There have been times when I have thought about when he’s gone and how I will manage. I am so lucky to have close friends and I know I will be supported (Covid allowing).  I think what I’m scared of is how I will manage in the final weeks. My nightmare is that he will be taken into hospital and I won’t be allowed to see him again. We are in Tier 1 now in my area (the highest)  On the other hand I have nursed loved ones with cancer before and I managed, so why am I so scared now? I feel that my current reactions are OTT and unfortunately I can’t take any medication to help me through it, like antidepressants for example. Like everyone, I miss my family too and feel isolated. My hubby isn’t ready to talk about end of life and what he wants, expects etc. I tried to speak to him about it and he told me he didn’t want the conversation.  
I guess I have to try to take each day at a time and work out a strategy that will work for us.  
stay strong and safe x 

Hi LC 50 and many thanks for your reply. I’m sorry that you’re going through this too, all of us in this situation really and looking after your young husband.  It’s just too cruel!  I think you’re right and Bramblejoo and LoobyLou, thinking too far ahead isn’t the thing to do and maybe that’s the key for me.  One day at a time has to be my mantra I think. My hubby has also worked hard all of his life as a police officer for most of it, a big, strong capable and caring man. It’s hard to watch that man become more frail and dependent on my care. Like your husband, there are days when my hubby can’t do much at all. 

As for peace of mind, I don’t think any of us will get that now, reading my replies and it’s reassuring that it’s not just me in a way (hope that doesn’t sound awfu!) and that I’m ‘normal’ I guess. 

Take care and stay strong x 

Hi Nannafizz, It doesn't sound awful at all. It does help knowing that others understand how we feel and that we're not alone. Much as it feels we are sometimes. 

Love and best wishes to you both

Xx

I do understand your ‘knife edge’ feeling. Been living on the edge since my husband’s diagnosis in March 2019. He was given approx 12 months at that point and only offered a short bout of radiotherapy to, hopefully, slow things down. We have both accepted the diagnosis, but I am finding it difficult to accept that we may be getting near the end. Hubby had been doing well, but is beginning to decline. Have had no contact from anyone medical since his discharge from oncology last November. Hubby just wants to be left alone, but I am sure that something can be done to ease his symptoms. We both cared for his father through his last months with pancreatic cancer. Know what’s coming. The only way he copes is by me staying upbeat and cheerful, but that’s harder as each day goes by. Family and friends are no help, as they seem unable to deal with the situation. I was having support from our local hospice, but that stopped when we went into lockdown. Just trying to get through the days with as many smiles as we can and hide from my hubby when I break down. It upsets him to see me cry, so I make sure he doesn’t. Sorry no words of wisdom, but really feel for you. 

We all need to give ourselves a pat on the back for coping as well as we do and being strong for our men. My hubby doesn’t want to talk about the future either or his wishes so we literally take it one day at a time and deal with stuff as and when. Hopefully when we need more help he’ll let me ask for it and there will be someone to provide it. 
Virtual hugs to you all xx

Hi Kittypuss, oh my days, I feel for you too. You’re being so strong, my friends tell me that too but I feel nothing like it. We have a CT coming up on Monday but I know it’s not going to be good and I honestly don’t think his body will be able to take more chemo, even if they do offer it, which I doubt.  Lockdown hasn’t helped support wise I know, so we have battled on regardless. I’m lucky I have good friends but none who have been in my position. Can your Macmillan nurse who is allocated to your GP surgery do a home visit? We haven’t got there yet and my hubby is reluctant at the moment to go down that route too.  A neighbour who lost her husband said that they will get involved at some point but I don’t know when. Probably when he is told that treatment will stop. Could you ring her just so you can talk to her yourself? It’s the loneliness and worrying about having to cope alone that’s scary for me. I’ve nursed so many patients at the end and I try to take comfort from the fact that none of them have left this world kicking and screaming, they have all gone gladly. That’s all we can hope for.  That doesn’t really help us though. People kindly tell me to take one day at a time and I know we have to but it’s not easy.  I guess what we feel is the price we pay for loving someone deeply.  I wish you well and we can support each other with others in our position x