When a Loved One Receives a Terminal Bladder Cancer Diagnosis
I have unfortunately lost a few good friends to various cancers - bowel, breast, etc. In fact, we started our own little "cancer club" which I wrote about in a previous article. But nothing prepared me for being told that a well-loved family member had in fact been diagnosed with terminal bladder cancer.
Dealing with the emotions
This was something that should have come relatively easily to me. After all, I have spent the last 3 years dealing with my own bladder cancer diagnosis, plus advocating for and supporting others with this wretched disease. But this was different - it was personal. I was emotionally attached to this individual and their family. I realized that I would have to deal with my own emotions in private as it was kind of expected that I would be able to help support the family, as I'd been seen doing this so often before for others.
Practical ways to help: listen
LISTEN! I can't emphasize this enough. Often people aren't looking for answers, but for someone to just listen. To listen to their worries, to hear how they are really feeling, to sometimes just be comfortable and say nothing at all. This may sound odd - "say nothing at all" - but fatigue is a very real condition in cancer patients, and talking can be tiring.
This is such an important service to get involved in your loved one's end-of-life care. They can coordinate all of the medical/treatment needs for you from one place. (You can find a number of articles on "palliative care" on our website BladderCancer.net).
It is common for appetite to decrease, but it's so very important to provide good nutritious foods and drinks. It may be worth considering asking for help from a dietitian. Also, there are many "wholesome" food/drink supplements available, which may be easier for the patient to digest, and you can rest a little easier knowing that all the relevant vitamins, minerals, etc. are already included. A pharmacist, doctor, or dietitian should be able to help with recommendations.
The financial stuff
The help that's available or that you may be entitled to depend on where you live in the world. In the UK, Macmillan has specially trained individuals who can help with financial matters including pensions, mortgages, insurance, and benefits. Read about opportunities for financial assistance in the US.
The legal stuff
Check if a will has been made and that the family knows where to find it. You might even want to consider discussing the power of attorney with the patient. This can relieve them of the worry of having to deal with day-to-day financial and medical issues. In essence, an appointed individual is given the legal power to make decisions for the patient both medically and financially.
This is a biggie. What pain relief is available should be discussed with the patient's oncologist or pain medication practitioner. There is no shame in asking. No one should die in pain.
Time out for the caregiver
It is so important that the primary carer should take some time out for themselves. As the old saying goes, "You need to look after yourself before you start thinking of looking after someone else." It's human nature to want to be with our loved one as much as we possibly can, to make the most of every minute, every hour, every day. But it is imperative that the caregiver is looked after, too.
Online support groups
I would highly recommend joining an online support group. Sometimes, we can be too close and need to speak to someone else. This is both true for the patient and the carer. I personally was given such amazing support and helpful information from people I had never met. I felt that I could share my darkest fears so much more easily with others that understood, that had been or were going through what I was.
You don't have to go through this alone
Coping with a loved one end-of-life care is not easy. Take the offers of help from friends and family when they are offered. Take a little time out for yourself, and never be afraid of asking your medical providers for help or support for either you or your loved one. You don't have to go through this alone.
How long did it take to get diagnosed after your first symptom(s) appeared?