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Posted: Thu Jul 13, 2017 1:37 pm
Firstly please forgive me as I know there are so many in a lot worse position than myself, I have arrived here because my Wife is very sick with kidney cancer.
I have never had to look after any one 24/7 and as much as I love her, I find myself sometimes thinking I have had enough of it, I can understand how horrible that must sound and am ashamed of myself.
What makes it worse I have only been doing this for 9 months, when I know people do it for years without any complaint, it just seems like my whole world is medical needs or hospital appointments, I will never ever give up looking after my wife and love her dearly, i just suppose I needed to have a moan sorry.
kind regards Michael
Posted: Thu Jul 13, 2017 3:18 pm
Michael - there's nothing to forgive! Welcome here -
I'm sorry to hear about your wife - how advanced is the cancer, what is her treatment, and how ill she because of it? (You don't have to tell us, more to get an idea of what the situation is for you both.)
All cancer is bad, but one of the 'advantages' of kidney cancer is that it is one of the few cancers where the oncologists will readily consider treating patients surgically with advanced disease - this doesn't always happen with other forms of cancer. So, hopefully, your wife has been able to have her affected kidney removed (unless, of course, it is in both of them, or her remaining kidney is too weak to function well, or if she is in too poor a state to undergo surgery.)
But, hopefully, even if she hasn't had surgery, or if she has, but now needs to target secondary tumours elsewhere, she will be receiving some of the latest anti-cancer drugs that now have NHS approval (more are in the pipeline!). That said, sometimes the side effects can be severe. Also, sadly, if your wife has a particularly rare form of the cancer, the drugs may not be suitable for her.
There's a great deal of cumulative experience here on the forum about how to get the best help for carers, so I hope that you will get some practical recommendations. There is also the team of experts at Carers UK itself of course.
This is obviously a very worrying, and stressful time for you, and I hope that things might improve, both on the care side, and, even better, on the health side of things.
Kindest wishes, Jenny
Posted: Thu Jul 13, 2017 3:21 pm
Hello Michael, welcome to the forum.
It sounds like you and your wife have not been given any support at all? Have you asked the hospital for help?
Have you asked Social Services for a Needs Assessment for your wife, and a Carers Assessment for yourself?
Has anyone told you that if she needs a lot of care she will be entitled to disability benefits, either Personal Independence Payment, if she is under 65, or Attendance Allowance if she is over 65.
Is there a hospice near you? The one near me offers lots of support to people in the community.
If you felt able to tell us the two or three things you struggle with most, there will be others on the forum who may be able to say how they dealt with the same problem. Too often hospitals focus entirely on the patient and forget that it's the carer keeping everything together.
Posted: Thu Jul 13, 2017 4:12 pm
In my experience the voluntary sector can be much better sometimes.
Have you tried MacMillan nurses'. Or. Can the hospital suggest anyone?
Posted: Thu Jul 13, 2017 8:13 pm
Definitely phone Macmillan. That's what they are there for. They are a MASSIVE charity (if I tell you that the routinely pay the salaries of cancer nurses at hospitals, including my local one, you can get a scale of how humungous they are!)
Are you members of any of the specialist charities for kidney cancer? They, too, will have practical (and emotional) advice on what is out there for you and your wife.
You aren't alone - no one with cancer is alone.
What help do you think you mostly need? So much depends on what your wife's treatment plan is, and her state of health at the moment.
Posted: Fri Jul 14, 2017 7:06 am
You're not alone Michael. PM me if you want a chat or feel the need to rant.