I have needs

With you there 100%.   

I can completely relate to this.  My needs are not being met so I am looking for ways and advice if anyone has any??  I do self care but there just isn't enough time in the day to look after myself, my husband, my 3 young children.  This is a harrowing process.  He's had 3 surgeries, 1 year of chemotherapy, cancer has spread so now on trial drugs and having radiotherapy as well to help manage pain.  All he can manage to do right now is sleep on the couch night and day while I do everything else.  I am exhausted and he is miserable because of the pain and all of the side effects of the many drugs he is on.  Any advice would be greatly appreciated on how I can manage this all.

Hi all,

I can so relate to everything people have said on here and well reflect on the time I probably crossed the line into being broken down. Feeling I could not go on I walked in to my local Maggies and basically everything flooded out as I sobbed out my story. They helped me realise that something had to give and at that time it had to be work and my GP signed me off with stress. 

Later I did a living with less stress course that really helped me and reminded me that if I am going to do the best for my wife and son then it was essential I made some time for me to discharge, unload, unwind or whatever. Our local authorities are responsible for doing not just a needs assessment for the person with cancer but also a carers assessment too. My GP is fantastic in that he recognizes that if I break we end up with 3 people needing care - myself my wife and my son. 

I changed my role at work, actually spend more time now helping others and get a lot of respect and the occasional "you are an inspiration" type messages. The good news is that I am part of a team meaning that if I need a break I can take it and so can the other members too. Good work is great for our own self esteem and it is something I feel I can control. I am also in regular touch with our welfare officer.

When my wife was really very ill we had one couple of friends who really went the extra mile - we really learnt the significance of the saying "A friend in need is a friend indeed".

<<hugs>>

Steve 

I think the simple fact is you can’t hun.   You are not superwoman.   It’s tough enough dealing with this alone, without having to look after 3 young kiddies as well.   

Contact your GP, Maggies, District Nurses, primary nurses at hospitals, anyone that may be able to help.   We are brilliant at keeping going until we no longer can, but I think with 3 children you need to jump the queue before you crack.   There is help out there, you just need to ask. 

xx

Hi Kat and all other folks on the thread,

This is such a real experience for all of us. It is so hard to find that time to care for yourself, isn't it? One of the things I have to be vigilant about is the tendency to feel guilty and tell myself that my needs are not important. It's such an easy mindset to adopt with, I feel, some very real causes.

My first line of self-care will be to remember my needs are as valid as my wife's, if not as likely to be met as immediately. The small wins are important, just at the right time. I am resolved to accept the situation and to exercise forbearance when times are tough.

It's early days - I have just left work to be a better dad, husband and carer - but hopefully, I can do my best to keep putting my needs as high up the priority list as possible.

Finally, for all those who are finding it hard or impossible to do that right now, I hope we can all be there for each other.

Take the best care of yourselves.

I don’t post but I feel I must , I thought and still do I’m a horrible person for being angry at my husband as he didn’t ask for cancer , but I feel I have had everything taken away from me ,he has bowel cancer and has been given a permanent colostomy bag which doesn’t bother me ,but he wanted to sleep in different rooms and I’m really struggling with this , it’s been 3 years now and I feel so lonely I’m 57 believe me it’s not about the sex lol , but the closeness and feeling protected when you have someone next to you , he is also on depression tablets and he needs them ,but I find they make him into a different person ,I’m sorry for ranting but I feel my life was also taking away from me 

Hi MamaT,

Youre comment re the toast made me chuckle so thanks for brightening my evening just a little. My dad has MDS and I am his main cater so I fully appreciate what you’re saying. I care for dad and do everything within my power as you do but sometimes I want to just scream, this I do in my own head, I’ve realised that when people are in such pain they take it out upon their nearest and dearest. The number of times I‘ve felt like a referee in between both mum and dad is endless. Me and dad are so alike so I have to bite my tongue when he keeps snapping at me. When he is in excruciating pain I am called upon to take him to the hospital, I now realise I have to avoid any potholes in the road so as to avoid any verbal abuse, because I’m panicking and wanting to get him to hospital ASAP he tells me to slow down there’s no rush when there clearly is. I daren’t ask the nurses anything as he screws his face up at me and I instantly realise this is my cue to leave lol. I feel as though I’m the bloody child again even though I’m 53 especially when he locks horns with me. I’ve had to bite my tongue that many times recently it’s a wonder it’s still intact. Sending you loads of love and hugs Nicola xx

Hey, 

Very nice to hear from you.

What you and what we are all going through mostly has such a sadly familiar ring to it. It's my husband's 67th birthday tomorrow. I hate (really hate) to say it, but with 23 hours a day in bed and with sooooo much pain and suffering I sometimes hope it's his last. He has been this way for a year and 7 months now. SO MUCH pain and suffering I almost can't bear it for him. I just remind myself that as hard as it is for me....tis harder for him. 

Caring for both of your folks must be very tricky to say the least. Do you have some simple pleasures in place for YOU?

Nice day here in Cornwall and I will enjoy walking my little sidekick (terrier pup bought by my husband while on steroids and I was too weak to say no!)

Take good care,

T. 

Angie123, your first four lines connected with me. Blinking cancer has taken so much away from us. You put it exactly right.

Me and him been living with it for nine years (waiting for his 4th surgery as I write). I know I'm lucky to have had him for those nine years but I want to acknowledge that each surgery takes something away, not just a tumour (sorry dark humour) but it takes something away from him and me too. Whether that's hope, confidence, I don't know. 

You don't need to hear my woes but please know that you are not alone. 

I do not know where the reply should go..but have read through everyone's posts.

I feel I have found a safe place to say I FAILED.

I have tried, cried and failed.  My partner will live but in a very different way, he has a laryngectomy ( a stoma in his neck) he lost his voice box his voice and still can't eat.

None of these physical changes bother me, he's alive.

But I don't know who he is so angry, bitter, negative.

He sees no future and I take the wraith of all of it. Ap few weeks ago he explodedp, throwing and smashing his equipment.

I got up and went home, I am empty. What hurts he hasn't even tried to fix us.

For me cancer has let him live but cancer has won