Running on Empty

Hi BBumble

i totally get what you are feeling as I lived through what you are now experiencing for two years.  It is out of our control, our lives are no longer our own and you just want things to be as they used to be …..
It is very very hard being a carer, we don’t choose this, it is thrust up on us, I had to remind myself often that my husband didn’t choose to have cancer and it really wasn’t his fault but was frustrated with his moods and reluctance to do anything that might make every day a little more bearable.  this disease not only ravaged his body but ruined his once happy, jokey nature.  Like you I just wanted my life back.

I have my life back now, except I haven’t … he passed away on 15th October, I miss him every minute of every day and I am struggling to face the future in my own.

I don’t envy you your carer journey, but these times will pass, you will find the courage and you will come through it. In the meantime try to look after your self too xx

You’re not alone my husband was diagnosed almost 8 years ago with stage 4 bowel cancer he was 44 at the time , since then it’s been backwards and forwards with secondary cancers , I’ve felt for years my life was not my own and I became an over night carer which I was not prepared for , it’s exhausting, frustrating,infuriating but worst of all it’s something you have to do and I feel guilty for thinking these things but I’ve found talking about it really helps please try and take a few minutes each day for yourself even if it’s just a short walk . My husband is now terminal as his body is not tolerating chemo so we don’t know how long we have , neither of us asked for this but I totally get your feelings right now .x

Not raining on your parade, this could be me writing this, I'm exhausted, no one gives a fk.. I know we are in a pandemic, no one offers,, I can't speak to anyone, guilt is killing me, I've been in bed since last night.. Just want the light to go out. 

Hi BBumble,

I cared for my Best Friend who had Ovarian Cancer. I left my home in London to be with her and care for her in South Wales in July 2020, returning home for a few days every few months when she was well enough, now I haven't been home since May of this year. Like you, I often suggested going for a walk and she was never very keen, but sometimes, rarely, she would take up the offer. You will feel tired, you will feel exhausted and you may feel lonely, but be thankful that your husband has completed his chemo - my friend was unable to, Cancer is a horrible cruel disease and will stop at nothing to try and finish off our loved ones. I had lost my Mum, Dad, cousin and 2 friends to it, and now I've lost my Best Friend of 52.5 years too, but I'll tell you something, just be grateful that you still have your husband and whatever happens, you will get comfort from the fact that you cared for him, that he wanted you to care for him and that you were there for him when he needed you - many people don't have that. A dismal prognosis isn't always correct, there have been cases of people who were told they were terminal, yet went on to live another 10 years. Don't blame your husband for how he feels, it's not his fault and it wasn't his choice to have this disease. It isn't his fault if he doesn't have the energy to get out of bed, but instead, try and reassure him and share things that he may be able to do, like watching TV together, playing a game together, looking though old photos together and reminiscing about some of the memorable times you spent together - that will make you both feel better, and give you both a reason to smile.

Hi Perry25,

Can you explain a little bit more about your situation please - it will help if you express your situation. I'm concerned to read that you've been in bed since last night and you just want the light to go out. Staying in bed will only make you feel worse - it helps if you try and establish a routine, like getting up, washed and dressed and deciding how you want to spend your day. For me, watching TV just doesn't work, I have to try and do something that occupies my mind, I have to try and go out everyday, if possible, make a reason to go out, even if it's just to pick up a pint of milk, it'll get you out of the house, amongst other people, even if you don't get to speak to them and you'll also be getting a bit of fresh air. I know most shops are closed today, but they will be open again tomorrow. Take things one day at a time or even one hour at a time if that makes things easier. You also need to try and eat something, although you may not feel like it - all of these things will make you feel a little bit better. There is a section on this website "where can I find support over the festive season", that I think you should take a look at. So tell me, what's your relationship to the person you' re caring for, what makes you say no one gives a fk, no one offers, I can't speak to anyone? - you are speaking to someone - you're on this forum! Why are you feeling guilty? Try and elaborate so that people can try and help you. We' re all on here because we're struggling with a situation brought about by Cancer, we're all in this together and know that our situation is being made worse because of Covid and the time of year, but because of that, we are best placed to offer help to each other, we understand what you're going through, where others may have not.

I'm here if you want to talk.

Hi best pal, 

My husband (we got married on 6/3/21) was diagnosed with kidney cancer in sept 20..he went through a 13 hr op in Oct.. The cancer was up his cena vena to the tip of his heart, was told all cancer was gone, he waa due to do a drug trial but we were told he couldn't as cancer went to his adrenal gland and lymph nodes which were also removed, we were told last Jan the cancer is in his pelvis and 10th rib..and cannot be cured but managed He was on antixnib and immunotherapy which caused severe pancolitis resulting in him being hospitalised twice, August and November, so he hasn't had any treatment since August because he is on a high dosage of steroids, the cancer is now in his t2 in his spine, and is worse in his pelvis.. He was given 5 days of radio, his liver readings were all over the place and he needed 2 pints of blood..his radio was 4 weeks ago, then he was in hosp for 5 days, getting out on Xmas eve, then we were bk up on 27th and 30th.. I worked ft till Derek's op, but started work again in Sept and try to get Derek out every day, but I am physically, mentally and emotionally done in,, I was at hosp 3 times the week b4 Xmas, I broke off on 24th..ive been on this whole journey doing everything myself and I wouldn't have it any other way, I felt guilty because I just don't have the energy to help Derek,, ppl say if you need anything just ask,, he has 7 brothers and sisters and a daughter.. No one offers to spend time with him, sorry to rant, I'm just at the end of my tether.. It will pass 

Sorry to read about your husband, my husband took early retirement at the age of 62 on the 30th June, the same day we found out he had cancer, a couple of weeks later we found it was terminal, he has bile duct cancer spread to liver and gall bladder, he had chemo but had to stop as it wasn't working. Since diagnosed he had a stent fitted in July which damaged his pancreas causing pancreatitis, it's all been downhill from there, we had 2 good days where my son took us out for lunch, my husband is now bedbound, I bedbath him every morning, I dress him, I wipe his bottom as he is too weak, sometimes he has had bowel incontinence and like you I am his sole carer. Sometimes he is sleepy most of the day and conversations are short, he has forgot lots of things, he can no longer do anything on the computer or write a text, he gets confused turning the TV on, hecsays things that make no sense at all, some days I answer repetitive questions throughout the day, he doesn't remember what day it is or even the date. He has now got fluid on his lungs and is very breathless, he can't walk far, he can make it to the bathroom most days but other days he has a commode, it's tough being a carer, sometimes I feel exhausted but it must be even tougher to be the one who has the cancer, we will get our life back, not the life we would like but some sort of life, sadly they won't. I would love to tell you it gets easier being a carer but I can't, for me it just gets harder. Take care and try to look after yourself too. We need to do for their sake x

Derek didn't and doesn't want to know how bad his cancer is/was..just that he was operated on in the nic of time.. With 6 consultants working on him.. They only do his kind of op once or twice a year. We only know it's incurable and aggressive.. Seems as if every 3 month scan it gets worse, even as his wife I can't ask as he doesn't want me to know,. I had the perfect life, a husband who is my best friend, who always had my back, good  jobs, a beautiful dog, now everything I always wanted is going,,, we had to rehome our boy because I couldn't look after him and Derek,.. I keep asking Derek to speak to someone, he NEVER speaks of his illness.. And this worries me also, 

It's awful having to rehome your dog, we also had to let our little pekingese dog go back to her breeder as I knew I wouldn't be able to look after her as well as my husband, I miss her terribly but I knew I did the right thing by her. I get so exhausted and due to exhaustion I get nausea and stomach upsets, I couldn't do all I do for my husband and also take a dog out three times a day. It's tough but you did the right thing by rehoming your dog too. 

White diamonds, it is so so hard isn't it... I can't look at pics of my boy, and rarely speak of him as it breaks me, I rehomed Perry to his breed specific rescue, so I know he will go to someone whreally knows his breed,, he was my best pal, my boy.. Ppl don't realise just how much cancer takes from us