A terminal diagnosis
If you have come to this page it is likely that you or a loved one are faced with this situation, or perhaps are getting closer to a terminal diagnosis if the current treatment doesn’t work. Phrases like ‘this is not looking good’ and ‘we're going to have to find another treatment’ can signal a blip in your medical treatment and your medical team will try to get it sorted and get you back on track. But, sometimes, this really will mean that things are not looking good and you might have to start preparing for something you hoped would not be happening now.
Sadly, the reality is that in the UK around 5,000 people a year still die from bladder cancer. Whilst medical teams strive to find ways to help people survive bladder cancer ... some will face a terminal diagnosis.
‘There’s not a lot we can do now ...’
The kick in the stomach. Your whole world turned upside down. The horrible thought that came into your mind all those months or years ago when you were first diagnosed. Numbness. Why me?
There will have been a number of times since your diagnosis when you will have asked yourself (or your medical team) ‘Will I die?’. This time you hear the words that you hoped never to hear – that your bladder cancer can’t be cured.
Shock. Disbelief. Anger. Fear. Tears. This is just not fair. Why me? Why me? Why me?
The initial shock of hearing that your medical team can’t cure your cancer and that they think your time is now limited, will give you many different emotions. Do you give up? Do you fight like you’ve never fought before? Is there nothing they can do? What do you tell people? What do you tell the kids? What do you tell your parents? Your friends?
With all these emotions, you may be constantly tearful, feel deeply depressed and be unsure about how you will cope. As you come to terms with the news, things will settle down and your distress will ease a little. Many people even eventually reach a stage of acceptance and calmness.
How long?
Your consultant will not have a precise answer to this question. All they will be able to give you is their best guess based on research outcomes and clinical experience and knowledge. Whatever you are told, bear in mind that you might live longer or you may have less time than they predict. This uncertainty can make you feel even worse. ‘Why can’t they just tell me how long I have so I can decide what I have to do next?’ These fears and emotions are very normal.
But somehow you have to work out a way to move on without an answer; because there is no answer to that question. Talking to other people in a similar situation can really help you to keep your perspective and perhaps even come to terms with what is happening. While that is your priority, try to do as many things as possible that make you happy. While you are able, get outdoors or meet up with friends. If you find things too exhausting, watch some TV of places you want to visit; listen to audiobooks instead of reading books if you find reading tiresome. At such times, small things can bring you moments of joy.
Now is to do all the things you dreamed of – whatever they are.
Making plans
Prioritise what is most important, plan it and do it. If you have always dreamed of seeing Venice, book a trip for next week or next month, not next year. Now could be the time to plan that holiday of a lifetime. Perhaps sort out all those old photos and make a memory book. Visit old friends. Write a journal full of notes to leave to your family. If it’s your thing, why not organise a party?
What to expect
When you are ready, talk to your medical team about how they think things will progress. What things should you look out for? What symptoms are you likely to experience, and what will they mean? What can you do about the new symptoms? What about pain relief?
Practical issues
You will also need to decide on key practical issues, including where you want to die and who you want with you. Find out the options available: at home, in a hospital, or in a hospice.
Sorting out your estate
Everyone should have a Will, so if you don’t have one, do it now. Don’t assume that you don’t need a Will if your affairs are straightforward; having a proper legal document will make arrangements much simpler and quicker for your loved ones. You can use a solicitor, the most expensive option but advisable if your affairs are complex, or a Will-writing service, which usually charges a fixed price. Alternatively, you can simply write your own Will but do sign and date it in front of two independent witnesses, who should also add their names, signatures, occupations and addresses to the Will. Please keep it safe and make sure someone knows where it is.
There will be many additional everyday and financial things to sort out. If you wish, you can give someone Power of Attorney over your affairs, which means they can act on your behalf; if so, visit gov.uk/power-of-attorney to find out more and apply. With all such arrangements, make sure the right people know where to find the details.
You might also want to clear up any arguments or grievances with family or friends. Make sure your loved ones know how you feel about organ donation.
You may have taken out a funeral plan or have specific ideas about what you would like to happen at your funeral. Please write it down and let people know.
Telling family and friends
Don’t bottle up the fact that you are losing your fight against bladder cancer. Let people know as soon as you can. It will hurt them when they find out, but they do need to know. It will also help you if you can talk to your loved ones about your emotions and practical matters. Everyone will act differently when they first find out. Some people will have a lot of difficulty with it and withdraw for a while until they come to terms with the news. Some people will be in denial that it’s going to happen. Others will act with strength and be there straight away, offering to help with anything. Let your friends and family come to terms with the news, and let the tears come.
Telling children
There is no easy way to do this, but it is best to be as open with them as possible. What you say will depend on their age, but it is best not to hide it from them. Children always know when something is wrong, and suddenly losing a parent or grandparent without knowing it might happen is likely to be more painful for them and cause lasting issues. Younger children can feel that it is their fault that you are going to die, so you will need to reassure them that it’s not their fault and explain what will happen.
Child Bereavement UK has valuable information about talking to children about this.
You can request a free care package for people aged 16-25 who are going through a bereavement from Take Our Hand.
Knowing the end is coming
There will come a time when you will reach this last stage of life. It may be a time of peace and acceptance for you, but if it’s not, do tell the people around you so you can get the help you need. Make sure you get the correct pain relief if needed, and consider how you want to spend your last few days. Make sure you can get the physical care you need. Perhaps a hospice will be right for you or perhaps you will want to be at home. Have the loved ones you want with you when the time comes to say your last goodbyes.
If you need somewhere to talk in confidence about end of life issues and worries, the members of the FBC online forum are there and ready to talk to you. We have people of all ages affected by bladder cancer and at all stages of their fight.
Remember … a diagnosis of advanced bladder cancer may mean you have a serious and life-threatening condition but many patients go on to live happily for many years. Your ultimate goal is to travel in hope, making each day the best it can be.
Always remember ... you are not alone. We’re here to help you.
Support for you
Please remember that you can contact us at any time for support, whether you are a patient or care for someone who is.
Our helpline is open from 0900–1630, Monday to Friday. There’s an answerphone if we’re busy, but we will call you back as soon as we can. Call 01844 351 621 or email info@fightbladdercancer.co.uk
Talking to other people who have had the same tests, investigations and diagnosis can help. Our private online forum on Facebook is available 24/7, 365 days a year. Find out how to join and other ways you can talk to patients and carers via our getting support page.
More information
You can download copies of our Bladder Cancer Patient Information Booklets below. If you would like a free copy sent to you by post or email, add your details to our booklets order form and we'll get it to you.
Get in touch
We’ve tried to make the information on this site as accurate as possible. Whilst we have support from medical professionals to review the general medical content of this site, please remember that only your medical team can give you specific advice about your symptoms or illness. Fight Bladder Cancer is a registered Charitable Incorporated Organisation in Scotland (SC051881), England and Wales (1198773), and was initially established as an unincorporated charity in England and Wales (1157763). It also operates in Northern Ireland.