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Get help: Losing the fight

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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 win their bladder cancer fight ... some will lose.

 

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 losing the fight 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.

‘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 won’t know the answer to this question. All they will be able to give you is their best guess based on what they see as the ‘norm’ with your particular cancer, how far it has already spread and how aggressive it is.

Whatever you are told, bear in mind that you might live longer or, unfortunately, not as long as they predict. It is this uncertainty that can make you feel even worse. “Why can’t they just tell me how long I have? I’m going to die but how can I move on and decide what I have to do next if I don’t know how long I have?” These fears and emotions are very normal.

But you need to move on. And you will. You will decide what you think is important for you to do in these last weeks, months or even years, and you will start to plan ahead.

Making plans

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 will you experience, and what will they mean? What can you do about the new symptoms? What about pain relief?

You will also need to decide on some key practical issues including where you want to die and who you will want with you. We recommend you write a will if you haven’t done one already. There will be many additional everyday and financial things to sort out. Do you need to give someone power of attorney over your affairs? Are there any family or friend grumbles that need to be cleared? Do your loved ones know how you feel about organ donation after you are gone? Do you want to plan your own funeral?

But there are other things to possibly plan. Based on what your medical team advises, now can 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? Whatever you want to do, why not do it if you feel strong enough?

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 own emotions as well as 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 just be in denial that it’s going to happen at all. Others will act with strength and be there straight away, offering to help with anything. Allow your friends and family to 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 you can. What you say will depend on their age, but it really is best not to hide it from them. Children always know when something is wrong, and suddenly losing a parent or grandparent without knowing that 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.

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.

The final moments are very peaceful for most people. When your time comes, remember all the good things. 

Always remember ... you're not alone. We're here to help you.

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We’ve done everything we can to make all the information on this site as accurate as possible. Whilst we have had support from a small team of medical professionals advisors 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. We encourage you to discuss any potential options with them.